The Odyssey: Parenting. Caregiving. Disability.
The Odyssey podcast explores the unique journey we're sent on when a loved one has a disability. We dig deep into the joys and hardships. We celebrate how amazing the odyssey of parenting, caregiving, and disability are. But we don't shy away from the tough stuff either. Each episode will explore topics that hit a little different because of our life experience. Our guests' perspective will sometimes bring comfort and other times challenge the way we see the world. centerforfamilyinvolvementblog.org
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Self-Care is a Joke (That We Need to Take Seriously)
05/07/2025
Self-Care is a Joke (That We Need to Take Seriously)
For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves. Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable! The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: is the syndicated advice columnist with The Washington Post mentioned in this epsidoe. SLIDES: TRANSCRIPT: 01:00:06:24 - 01:00:34:24 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My seismic shift came when my first child was born with Down's Syndrome in 2010. I've been going virtually nonstop ever since I joined the center for Family Involvement at Lucas Partnership for people with disabilities. 01:00:34:24 - 01:01:03:14 Erin Croyle A few years after he was born. Utilizing my journalism and TV producer skills as a communications specialist, a topic that comes up time and time again in my work and my life is self-care. And for good reason. If you ask a parent who's also the primary caregiver in their family their thoughts on self-care, you'll probably get an eyeroll or a laugh or a stare down that feels like daggers shooting right through you. 01:01:03:16 - 01:01:30:08 Erin Croyle The reality is, for so many of us, the idea of self-care is a joke. So rather than me talking about how important it is and why you should prioritize it, I'm going to break down why self-care is practically impossible. Instead of the usual self-care gaslighting, it's time for some validation as to why we either can't seem to make it happen or suffer when we do. 01:01:30:10 - 01:01:41:09 Erin Croyle And maybe offer some practical, attainable ways to take care of you. 01:01:41:11 - 01:02:06:19 Erin Croyle Real talk as usual. I actually have an interview with our mental health specialist, Patrice Behar that's in the can that I can't wait to share with you. And I've got a few other interviews that I can't wait to line up and do, and, I mean, I say this over and over again because it's true. Things are just relentless in my life, and I know that I'm not alone in that. 01:02:06:21 - 01:02:34:23 Erin Croyle In the past month, I did a talk about self-care to, caregivers in Ohio, where I'm from. Shout out. Represent. Love that state. Even though it's the butt of so many jokes, especially with my, Gen Z Gen Alpha kiddos. Anyway, what kept resonating with me is I was like, struggling. Finding time to edit that interview with Patrice is to practice what I preach. 01:02:35:00 - 01:03:06:11 Erin Croyle So I recognize that I have been bombarded with life. And as parents and as humans, that's what happens. But what we don't really take into account is that as caregivers, that happens sometimes times a thousand, right? In this past month, my oldest kiddo, Arlo, who has multiple disabilities, including Down's syndrome, got really, really sick and when he gets sick, it's it's real, right? 01:03:06:12 - 01:03:34:08 Erin Croyle A cold can knock him out and put him in the hospital. And funny enough, while I was giving that, workshop on self-care was when he walked into my office and started coughing and literally interrupted and I heard the cough and I said, for example, I'm probably going to have to manage his stuff. And sure enough, the next day I was on the phone with pulmonology, and since then I've had to rearrange a sleep study, and he was out of school. 01:03:34:08 - 01:03:51:11 Erin Croyle And the steroids and other medicines he's on has has just kind of put him out of whack. And I've had to help with his anxiety getting him back to school. And the other two kiddos were really, really sick. But at different times. So then they were off school. And so of course I was sick. But that doesn't matter. 01:03:51:11 - 01:04:33:03 Erin Croyle You know, we power through as parents when we're sick. It doesn't matter. So I was coughing up a storm and managing and that's what we do. But when it came time again to edit this interview and I was like, how am I going to do it? Instead of staying up and pulling all nighters like, you know what? I'm going to give that the time it deserves, and I'm going to practice what I preach, and I'm just going to go ahead and try to riff through a podcast on my own and do this presentation one, to remind myself why things that seem to be doable are so impossible, and why deadlines that we set for ourselves. 01:04:33:05 - 01:05:05:12 Erin Croyle We have to give ourselves so much grace. And also why, even though I a lot for ample time to get all the things I need to get done, done. Rarely do I ever get anything done. And it's not for lack of trying and it's not for not constantly working. I don't rest, I don't practice self-care enough. But what I have preached and what I recognize is that my form of self-care this month was saying, you know what? 01:05:05:14 - 01:05:30:07 Erin Croyle My April podcast is going to come out in early May, and hopefully I will edit my Patrice interview for my May podcast and get it out in May. And let me talk about why, because that validation and the relation and understanding that we're not alone in this and pretending that everything's fine and it's not, it is hard and it seems like the hard never ends. 01:05:30:07 - 01:05:52:22 Erin Croyle And I don't know if that's middle age or parenting or caregiving or the world we live in, but hey. So without further ado, I'm going to go ahead and roll into my workshop on Self-care for caregivers, which I probably should have titled Self-care is a joke that We Need to Take Seriously. As I said in my intro, I'm Erin Croyle. 01:05:52:22 - 01:06:14:20 Erin Croyle I'm from Ohio. I am a journalist, a writer, a speaker, a podcaster. I'm a parent, I'm a caregiver, and I'm an advocate for disability rights and just human rights. In the show notes, I'll probably put the slide presentation in there, but you're listening to this, so I'm going to kind of present based on slides, just, just take a listen and sort of picture this, okay? 01:06:14:20 - 01:06:29:01 Erin Croyle And reflect on these words that I'll say very slowly. Be honest. What is your gut reaction to the term self-care? 01:06:29:03 - 01:06:58:01 Erin Croyle Now take a moment to really think about it. Because for me, I really do roll my eyes. We all know that it's important, but for many of us it feels or truly is unattainable. And in my opinion, the term itself is totally overused. And that's because the term self-care has been hijacked and commercialized by influencers, and the whole wellness industry. 01:06:58:03 - 01:07:26:23 Erin Croyle So take a minute to think what self-care truly is. According to the World Health Organization. Self-care is the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health worker. It has origins in the medical community. It has long been encouraged for professionals involved in trauma. 01:07:26:23 - 01:08:04:20 Erin Croyle So you think first responders, doctors, therapists, people really on the frontlines of the toughest stuff that we're dealing with. It has roots in the civil rights movement and the women's rights movement, and it is critical for people with disabilities and their caregivers. Poet, writer, mother, activist the late Audre Lorde said, overextending myself is not stretching myself. I had to accept how difficult it is to monitor the difference necessary for me as cutting down on sugar crucial. 01:08:04:22 - 01:08:33:01 Erin Croyle Physically, psychically caring for myself is not self-indulgence, it is self-preservation. For those of us living as both parents and caregivers, the old adage that life is a marathon and not a sprint doesn't apply. Our lives are both a marathon and a sprint with no built in water breaks. That's why we really have to look to taking those breaks. 01:08:33:03 - 01:09:02:01 Erin Croyle They say that comparison is the thief of joy. But for us, comparing our lives to parents of neurotypical, non-disabled kids is a form of truth that can set you free. Like it or not, our lives are vastly different. My brother has two children who are similar ages to my three children. His boys are 15 and 12. Throughout our entire existence as parents, it's been really eye opening. 01:09:02:03 - 01:09:25:15 Erin Croyle Like I have always kind of looked in compared. And in the early years it was kind of hard because it hurt, because I was still accepting and grieving that Arlo's life would never be the life that you envision as a parent. When you have a kid, because most parents don't envision becoming parents to a child with a disability that will need lifelong support. 01:09:25:17 - 01:09:45:11 Erin Croyle You just don't. It's not in it's not in most movies. It's not in the fairy tales. It's just not. It's not what you imagine. And so those early years, I was able to look and just kind of see those developmental differences. That kind of stung. I was able to observe how much work it took just to help my son walk, as opposed to his kids just doing it. 01:09:45:13 - 01:10:17:20 Erin Croyle And sometimes, I don't know, I felt a certain kind of way. Never jealous, but just melancholy sometimes. And then I had another kiddo who was a similar age to his second kiddo. And Amelia's is now 12. And so I saw like, oh, I recognize that if you have a neurotypical typically develop meaning, right? I use quotes with those because those terms aren't great, but what other way are you going to say it? 01:10:17:22 - 01:10:41:00 Erin Croyle Do you have a non-disabled kiddo? Those milestones come naturally. There's no early intervention. There's no physical therapist showing you how to help your child move a certain way. There's no speech therapist helping with feeding and building muscle strength. Your kids just do it. And I still remember a meal starting to walk at nine months. And I was just like, wow, that just happens. 01:10:41:02 - 01:11:03:19 Erin Croyle So it got easier. But then there's little moments all throughout where I see the differences. And so now, my brother's oldest is starting to drive, and that's something I don't think I will ever do. Even when we do go cart riding, Arlo likes to, have me drive and we get a little tandem seat. And I'm so lucky that we have that nearby where we live, because it's really cool. 01:11:03:19 - 01:11:32:02 Erin Croyle And the person that runs the place is amazing. I highly recommend finding amazing people who understand how huge little things like that are, but there's things that we just take on naturally as caregivers that are normal, that my brother or, you know, people who have non-disabled, neurotypical kids just cannot fathom. So the little things like, okay, they have the anxiety of teaching their oldest to drive. 01:11:32:04 - 01:11:54:22 Erin Croyle But then when he's able to drive, he's alleviating some of the stress from my brother and and his wife where my nephew's going to drive, places, he'll be able to pick up his his younger brother, my other nephew, and their lives will get easier. And just just seeing them when we hang out together, the things that his kids are able to do independently, that don't come naturally to mine. 01:11:54:22 - 01:12:28:15 Erin Croyle Because, you know, not only does Arlo have significant support needs, but there's no divergence throughout my family. And so things that really I'm still trying to understand that come along with ADHD and neurodiversity and the whole spectrum of that. Certain rules work for them. And so it's a really, really different experience. That's where I think, considering an average day of a quote unquote typical parent compared to the average day of a primary caregiver is really important. 01:12:28:17 - 01:12:53:22 Erin Croyle Think about the day of a typical parent, and you got to consider the differences of ages. You know, toddlers are very different than grade schoolers. And teenagers are going to need nudged out of bed no matter what. But you know, the typical day average, right? Wake up breakfast, head out to work or school or daycare, extracurriculars, dinner. Chill out. 01:12:53:22 - 01:13:19:02 Erin Croyle You know, maybe go to bed. So the add ons for families without that extra stuff might be an annual well visit, the dentist appointment, occasional sick visits, things like that. Right? Consider an average day of a parent who's also a primary caregiver. You know you're waking up, but you've probably also been woken up throughout the night. You have to help dress and feed your children. 01:13:19:05 - 01:13:43:10 Erin Croyle You're going to have to help with hygiene and brushing teeth. Sometimes there's toileting. You're helping with medications, and then there's work, school, daycare. Maybe there's early intervention or therapies that you're either taking them to or bringing people in the house. There's extracurriculars, but a lot of times that takes extra effort and extra paperwork and extra kind of collaboration with whoever the coach or teacher, whomever is. 01:13:43:12 - 01:14:15:13 Erin Croyle Then you've got dinner and feeding the children more hygiene assistance, medications, maybe nursing level of care, bedtime routine, and then you've got other add ons there. You've got appointments with specialists and IEP meetings and paperwork and Medicaid meetings and homework assistance and behavioral support and dietary needs. Emotional regulation, nursing level care. In some cases, the interruptions we face on a daily basis are real. 01:14:15:15 - 01:14:38:08 Erin Croyle We're so used to them, but they don't happen for a lot of other parents. We don't have the same amount of hours in our day yet. We try to function and in many cases are expected to function and keep up as if we do. And let's not forget the financial hit that so many of us take as caregivers. 01:14:38:10 - 01:14:58:21 Erin Croyle Sometimes we can't work because even if our kiddos in school, it's still kind of a full time job. I mean, I think about how many calls I get about my children needing assistance at school. I've got to be ready to be interrupted multiple times a day. It doesn't happen every day, but there are flare ups throughout the school year where it might. 01:14:58:23 - 01:15:27:14 Erin Croyle So having a flexible job or taking on part time or flexible work, a lot of times our earning potential takes a hit and that puts us on a lower earning trajectory for life. Even those of us who do work, and work full time. We're either doubling up when we get home, burning the midnight oil for house stuff and other stuff, or we're spending a whole lot of money on the other things, like cleaning services and lawn care and whatnot. 01:15:27:16 - 01:16:01:24 Erin Croyle Or take away because we don't have time to cook dinner. It all adds up and it all creates these really different life experiences. Others don't realize how different our lives are. One of the biggest obstacles to self-care for caregivers are the expectations put upon us by those around us, or just ourselves. Take an inventory of your life and recognize what is doable and what's truly unrealistic. 01:16:02:01 - 01:16:32:24 Erin Croyle A really good analogy. An equation I like to think of frequently. And I want to thank the Washington Post advice columnist Carolyn Hax. I think it might have been a reader I saw this years ago in one of her columns, when I had time to read it. Happiness equals reality minus expectations. Stop expecting so much of yourself and just live in the reality you're in and recognize it. 01:16:33:01 - 01:16:58:11 Erin Croyle Another thing that really has helped me, because I am so hard on myself, is really looking at why I can't get it done. What I like to use is, if you've seen the movie or read the book, and with my own neurodivergent, it's it's hard to read a book. So I'm going to net. I've only seen the movie about a boy with Hugh Grant, which, by the way, Hugh Grant told A resurgence in my House, heretic was such a good film. 01:16:58:11 - 01:17:30:24 Erin Croyle Me and my 12 year old loved it. So seeing the evolution of Hugh Grant as an actor is has really been kind of fun. And so that's just a fun side tangent, but the movie about a boy came out, I don't, I think in maybe in the early aughts. Right. The 2000 maybe. I'm not sure. And in the film version, Hugh Grant is a wealthy bachelor living off the royalties of his dad's famous song, and he waxes on in this pretty funny sequence about how he breaks his daunting day into units and his units. 01:17:30:24 - 01:17:59:20 Erin Croyle Each unit is 30 minutes in it, he said. Taking a bath, one unit watching a TV show, one unit web based research, two units exercising, three units carefully disheveled hair at a salon, four units. And that really resonates with me because I sometimes think about when my son will refuse to go into school or refuse to get out of the car. 01:17:59:22 - 01:18:20:13 Erin Croyle It doesn't seem like it takes a lot out of my day, but sometimes that's an entire unit, or between the amount of time it takes for me to reregulate myself. It's it's 30 minutes one unit or the other day, my my daughter Maya, who's ten, forgot their, trombone, even though we have calendar reminders and I forgot it to. 01:18:20:15 - 01:18:39:12 Erin Croyle And so I walked them to school and came home and was like, oops. I got to get that right back there. Well, there goes a unit, right? Another unit. Just by getting in the car, getting the trombone, taking the school, dropping it off, saying hi, explaining what happened. Getting back in the car, getting home and re re setting myself. 01:18:39:14 - 01:19:02:22 Erin Croyle There's a whole unit gone just because someone forgot a trombone. And maybe it doesn't seem like a lot like, no big deal. It happens all the time. You got to let it go. But when we break our day into units and think about it in that way, it really sheds light on why we can't get it done. And so this will be in the show notes. 01:19:02:22 - 01:19:30:15 Erin Croyle But to just try to visualize if a unit is 30 minutes and a day is 24 hours, that's 48 units. Let's go ahead and break this down okay. Let's be generous and say that you get seven hours of sleep or attempting to sleep, like attempting to sleep. I know that we all burn the midnight oil or have kiddos that might need care throughout the night, but let's just say seven hours, which is not enough, by the way. 01:19:30:18 - 01:20:00:23 Erin Croyle Let's be real. But it's it's realistic. That's 14 units. That leaves us with 34 units. Okay. If we are going to look at personal hygiene for just ourselves in toileting, say that's one unit throughout the day. If we have enough time to actually take a shower and get dressed and maybe like, comb our hair a little bit, let's say that's another unit, meal prep, let's go a little bit skimpy there and figure 30 minutes per meal, not including snacks. 01:20:00:23 - 01:20:21:22 Erin Croyle But if you kind of tack that in, that's three units total of meal prep, right. If we're lucky enough to sit down and eat three meals in a day, hopefully that's a, you know, another three units, maybe meal cleanup if you're cooking and getting stuff ready, that is two units easily. I my gosh, it never ends right. Basic chores. 01:20:22:03 - 01:20:49:02 Erin Croyle That is average of two...
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Raise a Glass to Sobriety
03/30/2025
Raise a Glass to Sobriety
A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: There is limited on the connection between caregiving and problem drinking. There is some can cause anxiety, depression, social isolation, and stress which are predictors of increased alcohol use. The slope to addiction is a slippery one. “It’s 5 o’clock somewhere” loses its charm when it becomes an excuse instead of a rare occasion. But it’s easy to miss the signs when you’re having fun on the slide. I speak from experience. I remember the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It’s a feeling I chased over and over again at countless venues - dorms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually play dates. Information on how . 2023 survey of 1600 mothers found that 48% had tried to curb their drinking, one in three admitted they might be drinking too much, and 12% were worried they might have a dependency problem. Most folks pour way more than a when imbibing. In early 2025, the current U.S. Surgeon General be updated to include a heightened risk of at least seven different types of cancers including breast, throat, and colon. According to , even consuming just one drink per week increases cancer risk by 10% in men and 16% in women. WHY ALCOHOL IS SO RISKY FOR CAREGIVERS For those of us navigating this often isolating and relentless life of caregiving, from what we really need - respite, support, empathy, space, to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality. The can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgement, and a whole host of other things that can make caregiving more difficult. If you are unable to recognize that alcohol use is exacerbating what ails you; a cycle is established - drinking to ease what ails you, in turn causing more ailment which leads to more drinking which can lead to problem drinking and eventually, potentially dependence. There are many available online, you just need to be brutally honest with yourself when taking them. As difficult as cutting back can be, is easier than ever. TRANSCRIPT: 01:00:06:21 - 01:00:38:09 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:00:38:11 - 01:01:19:00 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating the tough stuff. I'm all about keeping it real, so I'm just going to come out and say. I've been recovering from surgery. So while I have some amazing interviews coming your way, this episode, I'm going to share a somewhat personal article I wrote for Parenting Special Needs Magazine about one of the hardest yet best things I've ever done for myself. 01:01:19:02 - 01:01:53:10 Erin Croyle The allure of sipping on an adult beverage at the end of a hard day is real and for good reason. A glass of wine or a stiff drink are long romanticized ways to chill and unwind. A sort of easy pass into the fast lane of relaxation. But what happens when nearly every day is hard? Kind of like the unending mental and physical labor that comes with being both a parent and a primary caregiver for your child. 01:01:53:12 - 01:02:27:08 Erin Croyle Reaching for a bottle of booze may seem like simplified self-care when your days are often both incredibly demanding. Yet super mundane. While there's virtually no research on the connection between caregiving and problem drinking, there is recognition that caregiver burden can cause anxiety, depression, social isolation and stress, which are all predictors of increased alcohol use. The slope to addiction is a slippery one. 01:02:27:10 - 01:03:14:02 Erin Croyle It's 5 o’clock somewhere, loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on that slide. I speak from experience. I remember so well the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I've chased over and over again at countless venues, dorm rooms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually playdates. 01:03:14:04 - 01:03:42:10 Erin Croyle The way our culture normalizes alcohol use made it easy for me to enjoy a glass of wine or three while making dinner for my children. That is up until I quietly quit drinking when they were ages five, three and one. Mommy, happy hours at a playground are a thing. One that I partook in, enjoyed and instigated. I felt like I deserved it. 01:03:42:12 - 01:04:12:13 Erin Croyle My oldest son has Down syndrome and has eloped since he could walk. I now know that all three of my children have ADHD and so do I. What felt like the only attainable self-care I could find at the time was actually me self-medicating with some really heavy dosing. Caregivers operate at a whole other level of intensity than peers who are simply just parents. 01:04:12:15 - 01:04:42:13 Erin Croyle When there is literally no time in the day to just be taking the edge off with a drink can be dangerously appealing. In fact, a 2023 survey of 1600 mothers by Parents magazine found that 48% had tried to curb their drinking. One in three admitted they might be drinking too much and 12% were worried they might have a dependency problem. 01:04:42:15 - 01:05:19:07 Erin Croyle Everything in moderation is not always the way sober curious movements abound these days, from theme months like dry January and sober October to expensive mocktails popping up in beverage sections at the grocery store. It's easier than ever to be a teetotaler. Staying sober, however, is a whole other story. Drinking is ingrained in our lifestyles. Mimosas at brunch, celebratory toasts at wherever. 01:05:19:09 - 01:05:49:13 Erin Croyle Honorary toasts at wherever. When I first stopped drinking, the pressure to have just one came from virtually every adult around me. Nearly a decade later, and I still rehearsed responses as to why I'm abstaining. It's just assumed that everyone old enough to drink would drink. And if they're not drinking, they're expected to explain why. As if it's anyone's business. 01:05:49:15 - 01:06:19:11 Erin Croyle The thing is, if moderation requires thought or effort, it might be time to examine your habits more closely. This idea that a glass of red wine with dinner every night is healthy is a complete fallacy on many fronts. First off, how much is in that drink of yours? A serving size of wine is five ounces. That is way smaller than most people's pores. 01:06:19:13 - 01:07:02:12 Erin Croyle The same goes for most drinks, from beer to hard booze to malt liquor. And I'll have graphs and more info on that in the show notes. Another consideration is that many people who drink too much don't realize they're drinking in excess, and they certainly don't see themselves as dependent on alcohol. Furthermore, statistics on alcohol consumption are self-reported. If we were to factor in human error and perception, most people are probably both over serving themselves while simultaneously underreporting their consumption to medical professionals. 01:07:02:14 - 01:07:38:02 Erin Croyle In fact, the CDC reports that nine out of ten excessive drinkers are not alcohol dependent. But how would they know that? What's the measurement there? If you're an excessive drinker, what makes you think that you're not dependent on alcohol? It is a very blurred line. And even if you're truly one of those people who can have a few sips and walk away, the old adage that alcohol in moderation is good for us is patently false. 01:07:38:04 - 01:08:16:20 Erin Croyle For decades, we've been led to believe that a drink or two several days a week could help in preventing heart attacks and strokes. But in early 2025, the U.S. surgeon general at the time, Dr. Vivek Murthy, urged warning labels be updated to include a heightened risk of at least seven different cancers, including breast, throat and colon. According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women. 01:08:16:22 - 01:09:01:05 Erin Croyle Let me repeat that and remember what I just said earlier. We are overconsuming and underreporting. So in his report, he said even consuming just one drink per week, one five ounce glass of wine per week increases cancer risk by 10% in men and 16% in women. Why is alcohol so risky for caregivers? For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need. 01:09:01:07 - 01:09:46:09 Erin Croyle Respite, support, empathy, space to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality. Unfortunately, the solace that booze brings is temporary and toxic, often creating more problems. In addition to the long term cancer risk. The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgment, and a whole host of other things that can make caregiving more difficult. 01:09:46:11 - 01:10:25:16 Erin Croyle And of course, if you're unable to recognize that alcohol use is exacerbating what ails you, a cycle is established drinking to ease what ails you in turn causing more ailment, which leads to more drinking, which can lead to problem drinking and eventually potentially dependence. So what's a caregiver to do? Given what we know about the dangers of alcohol use and the demands placed on lifelong caregivers, we owe it to ourselves and to our loved ones to take a closer look at our consumption. 01:10:25:18 - 01:11:01:18 Erin Croyle There are many self-assessment tools available online, and I'll put a few in the show notes. You just need to be brutally honest with yourself when you take them. Most importantly, know that there is absolutely no shame in needing help. Alcohol is an addictive drug. Building tolerance and dependence is more common than we know because it's pretty much the only drug out there that is not only socially acceptable to use, but encouraged to use virtually everywhere we go. 01:11:01:20 - 01:11:30:23 Erin Croyle That whole rock bottom, sloppy alcoholic image is just a caricature ized version of what problem drinking is. More realistic versions of problem drinkers are all around us. It could be you. It was me drinking alone. Drinking early in the day, thinking you should come back or moderate. These are all indications that it might be time to stop. As difficult as cutting back can be. 01:11:31:02 - 01:12:13:07 Erin Croyle Finding help is easier than ever. Almost every kind of support out there is available in multiple formats. In-person person online apps on your phone. Anything from Alcoholics Anonymous to mindfulness to sober blogs, to sober challenges to therapies, to groups, to coaching, to books. Something is bound to resonate and help you figure out what works for you. And what I can tell you from personal experience is once you pull yourself out and you stop when you wake up in the morning, it feels amazing. 01:12:13:09 - 01:12:34:18 Erin Croyle And every day that you wake up that you didn't drink the night before, it just feels more and more free and more and more awake and alive. And you just wonder why you didn't do it sooner. 01:12:34:20 - 01:12:58:22 Erin Croyle Thank you, listeners, for joining us. Check out the show notes for those self-assessment tools for statistics info, How to find help and feel free to reach out to me about any questions you might have. I'm an open book and be sure to share a review. Subscribe like follow. Or whatever it is you need so you get a ping when our next show drops. 01:12:58:24 - 01:13:06:21 Erin Croyle This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.
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Rare Diseases Can Impact Anyone
02/27/2025
Rare Diseases Can Impact Anyone
When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why. But what happens when test after test just leads to more questions? Rare diseases are more common than we realize; research surrounding them is what's lacking. We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: The Center for Family Involvement offers specialized one to one support specific to rare diseases through our program. Learn more about and TRANSCRIPT: Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. It’s a seismic shift I experienced myself, when my first child was born with Down syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and the hardships we face. One of the hardest things families go through is the diagnosis itself. There are an estimated 300 million people with rare diseases worldwide. A disease is considered RARE when it affects fewer than 1 in 2,000 people. Lack of scientific knowledge often leads to delayed diagnoses and inadequate treatment and care. All of this places a heavy social and financial burden on patients, and in turn their caregivers. To highlight these issues and in honor of Rare Disease Day this February 28th, I dug deep into The Odyssey vault to revisit my interview with Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the President of the Smith-Kingsmore Syndrome Foundation. Her now 13-year-old son Charlie is one of less than 300 people living with SKS. The story of their diagnostic odyssey is just one example of what so many families go through. So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray. And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital. And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis. So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been. And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal. And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together. Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be. I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you? Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help. So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You Serious? Yes. So we, How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives? So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really...
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New Year, Same You, Different Attitude
02/01/2025
New Year, Same You, Different Attitude
How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that? It's gotta stop! There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away. If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude! The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: There are very few studies on how women tolerate pain. explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false. While there is evidence that ; renowned gynecologist that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks. TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk. If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story. Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section. My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero. She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened. So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December. And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier. Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it. I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive. That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school. And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care. So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm. And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack. And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain. And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion. When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver. Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term. These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids. So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress. If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time. And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight. And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and you realize that perhaps you're asking too much of these young minds. If adults have a hard time managing their screen time, how can we expect kids to be able to do it? And if you have any secrets, they're by all means share and I'll pass it along in a future episode. Managing expectations of ourselves and others is another area where an attitude adjustment might be in order. After all, my favorite equation is happiness equals reality minus expectations. A great way to alleviate so much stress and frustration is to stop expecting others to fill in the blank. Think about it. Kids are not going to magically start doing their chores without reminders. Partners aren't going to be able to read our minds and do what we wish that they would do without talking about it. And we're not going to be able to break every single one of our perceived habits overnight or even by the end of the year. We need to stop expecting these things of those around us and of ourselves. My own home is a really good example. I have busted my butt over the years trying every visual schedule and first and strategy out there. Guess what? Even with the best tools, most parents and caregivers are still going to need to remind their children to use those tools. Human prodding is still necessary, and this is especially if disabilities. In the next hour. Santa delivered this beautiful fancy skylight calendar to our home and this bad boy. It will link to our Google calendars. It has a short list for as many people as you want to add and a reward chart to go with that. It has meal planning options. It's amazing, but it's not magic. An adult still needs to encourage the kids to use it. An adult still needs to hand out the rewards. We've got to stop expecting adult level compliance from children. It's just not going to happen. The biggest impact we can have, though, lies within us. Most of us are harder on ourselves than anyone around us. So I want to point out a really good starting point, especially for caregivers. Take a very close look at the hours in your days and what your day is filled with. Time and time again, I end most of my days disappointed at what I was not able to accomplish. And then I'm overwhelmed about what's on my plate in the coming days because of that. First off, it's important to point out that getting an ADHD diagnosis a couple of years ago has helped tremendously in understanding why this is so hard for me. My mind is almost always working in hyper drive mode. Now you tack on the caregiver component of our lives, and in my house again, all three of my children, they have ADHD, which means I'm helping them manage their time, their list, their clothes, their school work, you name it, and doing this in a calm, supportive way with so much emotional dysregulation. And each of us is not just challenging, it is draining. There's only so much patience that anyone can have on any given day, let alone when you pile all those other stressors on top. So I started looking at each hour of my day to understand why it feels like I can't get anything done. And after doing this time on it, the problem was obvious. I was trying to do the impossible. And this is a level of impossible you can't see just by looking at my calendar. But it's just based on everything else that happens in our lives that go unseen, whether by our partners or our supervisors or our colleagues or our friends or our family or our children. Try it. Track your daily activities for a week and test this out. Because my issue with time management is not due to scrolling through social media or watching TV or playing games on my phone or texting friends. My workday is interrupted nearly every day because of medical appointments or calls from the school nurse or because my son's hearing aids are missing and I need to bring them in, or because someone forgot an instrument, or there's an IEP meeting or a five or four meeting or I have to do paperwork for Arlo's waiver, or there's an appointment with my daughter's behaviorist, or there's a dog training session to get our pop up to service dog status. I mean, every day there are things outside of my control where people need me and it pulls me from all the other things that I'm supposed to be doing. And the caregivers, I know we don't get personal days. If we have a smidge of time that isn't booked with caring for somebody else, then we just use it for the backlog of stuff piling up when we're caring for somebody else. And I don't know about you, but my backlog is turning into a massive mountain that follows me wherever I go. It's like a Tetris game that I look at and see if I can take something out and get it done without triggering something else to collapse and pummel me like an avalanche full of menial tasks that never stop coming. And I can't stop this avalanche. I set up all the supports that I can afford around me, and so the only thing left to do is to adjust my attitude. And so the first thing I started doing is to embrace that I am just going to be late. I hate being late, but I can't help it in most cases. And I actually want to thank Mel Robbins for this one. Another podcaster, the author of the book Let Them, which I've been listening to, and it's freeing. I don't normally jump on a book bandwagon, but so far I'm more than halfway through. And a lot of it just just lets you feel free. It's the idea of let them is that you can't control what others think about you, nor should you. And it's true. So as much as I hate being late, it's out of my control. And when I try to push everyone else to be on time, the commotion and stress and frustration it causes, it's not worth it. One appointment bleeds into the next. A five minute task can take 30. And suddenly I'm leaving for my 430 meeting at 445. I still hate being late, but instead of dwelling on it and feeling terrible about it, I'm going to apologize, move on, and chalk it up to being a really difficult time in my life. Speaking of all those appointments and meetings, enough. One thing I've learned after 14 years of being a parent caregiver is that no one has all the answers. Not doctors, not therapists, Not teachers. Nobody, y'all. I wish I could have recorded my daughter's session with that behavioral therapist in December. This professional was trying to reason with Maya about a reward system to help with the basics of getting to school each morning on time. And it's something I've been working on since Maya was three. To no avail. And so when the therapist asked Maya about a reward that might be meaningful, Maya replies, $1,000,000. And Maya was dead serious. And as the therapist pushed for more reasonable options, Maya didn't hold back and kept throwing out really difficult rewards to fulfill, making it a really difficult system to set up. And in that moment, I just gave up. And I observed my gorgeous Pharrell baby make this poor person work so hard for every minute that she was putting into this session. That's the thing about parenting. Everyone has the answers. There are books. There are professionals. There are fellow parents. But you know what? All it takes is one kid that doesn't fit into a mold. And this is why giving zero FS is a shift that pretty much every caregiver needs to make. Caregiving is such a unique existence. Especially if you have a loved one with invisible disabilities. The judgment is everywhere. Family, friends, teachers. People observing in public. If I try to talk about any of this stuff with someone who isn't a caregiver, nine times out of ten, I'll get the whole well, my kids would behave that way if I let them. Or you just need to blah, blah, blah. Or you should just blah, blah, blah. Or why don't you try. Bla bla bla bla bla bla bla bla bla. If only it were that easy. And also for you for putting this on me because I am trying so hard and you saying that it's my fault or it's my parenting. Well, you don't know me then. And I'll tell you what perimenopause is helping me give far fewrer if you seek Amy’s; Anyone remember that Britney Spears song? Anyway, when my blood clot was first discovered, I was ordered to stop hormone replacement therapy, and suddenly my hot flashes were full on sweats. I mean, last night, my sweats and chills hit so badly I had to lay on the ground. I could barely breathe. It was it was something. And I think as women, we laugh this stuff off and we have heard other women in our lives laugh about it, but it's no joke. And when you're living in it, it is absolutely miserable and distracting and at times unbearable. My brain and body are going haywire. And it last three years. So with all this, I've even given up worrying about my potty mouth. I've tried to cut back on swearing for years, but right now I'm embracing my inner Roy Kent and letting the F-bombs fly freely. Except I'll bleep them for the podcast. It's funny, my dad hated swearing, and if he were buried, he'd be rolling in his grave. I'm not sure what the equivalent of that expression is when it's a box of ashes that my mom keeps on the coffee table next to her. Maybe he's scattering in his box. I don't know. But I like to think that if I could talk to my dad, he'd give me a free pass for sure, on the swearing. Perhaps that's the biggest adjustment I'm making in my life. Finding joy and kindness wherever I can until I'm able to produce my own Roy Kent fresh in my mind. Because my 12 year old and I are watching Ted Lasso together. It's my second time and his first and we just finished season two of Shrinking by the same creators, by the way. These shows just ease my mind and they soothe my soul. You know those periods of life where you're pretty sure things will be okay, but it's just really hard and there's nothing tangible to look forward to. No getaways, no celebrations. You're just getting by. Simple things like a TV show to look forward to that you can talk about that makes you smile. It's a pretty beautiful thing. The arts are there for a reason, right? But these two shows in particular touch on mental health in a way that not many others do. They're fictional examples that remind you that even though folks...
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2024 Airing of Grievances: Sharing our Secret Lives
12/23/2024
2024 Airing of Grievances: Sharing our Secret Lives
We're trying something different this episode: our first ever anonymous "airing of grievances." Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them. When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back. What about you? What secrets do you wish you could share? The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPTION: 01:00:06:19 - 01:00:36:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities. 01:00:36:13 - 01:01:03:16 Erin Croyle One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability. 01:01:03:18 - 01:01:35:14 Erin Croyle It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather. 01:01:35:16 - 01:02:04:18 Erin Croyle It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability. 01:02:04:20 - 01:02:21:05 Erin Croyle For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena. 01:02:21:07 - 01:02:45:01 Erin Croyle My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least. 01:02:45:03 - 01:03:13:14 Erin Croyle Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue. 01:03:13:16 - 01:03:45:13 Erin Croyle And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us. 01:03:45:15 - 01:04:14:11 Erin Croyle What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor. 01:04:14:13 - 01:04:48:13 Erin Croyle Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about? 01:04:48:15 - 01:05:14:09 Erin Croyle One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while. 01:05:14:11 - 01:05:37:14 Erin Croyle Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say. 01:05:37:16 - 01:06:05:05 Erin Croyle I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness. 01:06:05:07 - 01:06:30:14 Erin Croyle Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard. 01:06:30:16 - 01:06:57:11 Erin Croyle Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items. 01:06:57:12 - 01:07:28:02 Erin Croyle Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored. 01:07:28:03 - 01:07:50:20 Erin Croyle So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else. 01:07:50:22 - 01:08:19:06 Erin Croyle My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion. 01:08:19:08 - 01:08:42:14 Erin Croyle Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us. 01:08:42:16 - 01:09:05:22 Erin Croyle The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite. 01:09:05:24 - 01:09:30:04 Erin Croyle They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children. 01:09:30:06 - 01:09:57:17 Erin Croyle I keep trying to let people know that you just have to talk to them as you would anyone else. They're wonderful human beings and have many things to share and give to our community. As a professional with a disability, I can feel overwhelmed and frustrated when reasonable accommodations are asked for and not given. Another parent says, Just because my teenage child doesn't communicate traditionally doesn't mean you should talk to him like he's a toddler. 01:09:57:23 - 01:10:24:04 Erin Croyle He's a teenager, for crying out loud. Another parent says, I wish my peers understood how complicated caregiving is. I don't talk about this openly because it's nobody's darn business. But total care means total toileting, shaving, teeth brushing, dressing, feeding. For girls, this means feminine hygiene. For boys, it's washing their privates. It's navigating through puberty. And later, sexual needs. 01:10:24:06 - 01:10:49:03 Erin Croyle That whole birds and bees talk that parents get all stressed about with their typically developing kids. Imagine having to search for and hand over a social story about erections and masturbation to your teen. Everything in our lives is just next level. It's wild. Another parent said, I love my child and will do anything for them. But I hope God never gives you more than you can handle. 01:10:49:08 - 01:11:11:21 Erin Croyle It is patently false. I'm hanging on by a thread most days. Screaming mercy on the inside. But I can't say that out loud because my child does not deserve to hear that. Sometimes I wish I could just be a parent. I'm tired. I'm getting old. My body needs a break. What you're not prepared for is that caregiving last so long. 01:11:11:23 - 01:11:35:03 Erin Croyle My adult child with a disability still needs so much care. That includes toileting. Health care. Transportation. Preparing meals, coordinating appointments, and more. When my other kids were young, it was just part of the drill because I was taking care of everyone. But the siblings are grown now and all of my friends have moved on. There are no more school programs or playdates, but I'm still providing the same level of care for my adult child. 01:11:35:05 - 01:11:56:14 Erin Croyle Most days I don't mind, but sometimes it can feel really overwhelming. A parent of an adult child with a disability shares. I fantasize about getting divorced, but the hardship it would create is far worse than remaining in a miserable marriage. When you have a child with significant support needs, there is so much more to consider than personal contentment. 01:11:56:16 - 01:12:24:22 Erin Croyle Everything is more complicated finances, employment, health care and being tied to your co-parent forever because there is no when they turn 18 for us. I mean, there is. But it actually gets harder when our kids become adults. Not easier. Another parent shares. I thought that when my child became an adult, things would get easier. I was wrong. Sometimes I feel like I can't trust hope and happiness when it comes to her living her life. 01:12:24:24 - 01:12:47:16 Erin Croyle I feel like I'm always waiting for the other foot to drop, which it usually does, And somehow I'm always shocked. And then I mourn what I wish her life could be. I remember her as a happy child, and it breaks my heart. So I try not to dwell on that too long. There are times I feel like a hypocrite when I help other families because I can't fix my own. 01:12:47:18 - 01:13:05:11 Erin Croyle Another person wrote, People ignore me. Now they leave me alone. I'm sorry if I have not taken the time to connect with you, but I am dealing with my adult children who are not like your adult children. We have the best time and I absolutely enjoy spending time with my kiddos. But it seems apparent that they will never leave home. 01:13:05:11 - 01:13:32:18 Erin Croyle And I'm absolutely overwhelmed. Exhausted. So freaking tired. And I just want to go hibernate somewhere. But I cannot. My children need me. I have a new disability diagnosis thanks to having had COVID and not recovering fully. I wish you could understand COVID is most certainly real and it has affected so many people with lingering issues. We have had to deal with, even after COVID has supposedly gone away. 01:13:32:20 - 01:13:56:10 Erin Croyle A family member of an adult with developmental disabilities who's also a professional at the Partnership for People with Disabilities, says it's always interesting to share what I do with others. When I do share my profession with other professionals or friends who have not had personal or professional experience with people with intellectual disabilities. There's always a visible change in their demeanor. 01:13:56:12 - 01:14:24:13 Erin Croyle Usually shock or confusion. I then have to explain what intellectual disabilities are and how my job works. I wish more people recognized that there's this whole population of people living and breathing in their world. People with ID live and work in their community and access the same level of community based amenities, services and supports. But it's as if most people never consider their existence. 01:14:24:15 - 01:14:59:12 Erin Croyle I think this reaction speaks to the lack of integration of people with intellectual and developmental disabilities in our lives. Beyond the school setting, another professional who has a family member with disabilities said I wish more health care providers understood the importance of and prioritize spending more time with patients with intellectual and developmental disabilities during appointments. People with I want to be involved in their own health care, but they need more time and direction to do so. 01:14:59:14 - 01:15:29:06 Erin Croyle I also wish more health care and community based providers like local health departments and public services on the city and county level understood that using plain language in their communications doesn't just benefit people with modifying materials, so they're universally easier to read and understand is beneficial for many other populations and could increase the uptake of programing or health care recommendations. 01:15:29:08 - 01:15:58:03 Erin Croyle And this last one is from someone who does not want to remain anonymous. My friend and colleague Jill Rose is just the epitome of positivity most times and had this beautiful sort of grand finale of a story to end on. Thank you, Joe. When my daughter was born 14 years ago with Down's Syndrome, one of my many initial fears was that I wouldn't be able to communicate with her. 01:15:58:05 - 01:16:22:05 Erin Croyle While her verbal skills are at the lower end. We do still communicate in our own ways. We sing and dance a lot. We've developed our own language and words. For example, we call each other Mushi, which is just a word she made up years ago. She's much more brave than I am. She rides all of the scary rollercoasters with hubby while I sit on a bench and watch the bags. 01:16:22:07 - 01:16:44:21 Erin Croyle When we go to the doctors and I have blood taken or need a shot, she knowing how nervous I get, grabs my hand and says, Be brave. She can sense when I'm sad or anxious. It is her unique gift when she senses it, she says It's my turn as she comes to me with open arms. Her healing energy always helps. 01:16:44:23 - 01:17:03:21 Erin Croyle I gave birth to Sophia, 14 years ago, and if I could go back in time and speak to my younger, fearful self, I would say, Don't be scared. Because in this scenario you're the lucky one. 01:17:03:23 - 01:17:30:02 Erin Croyle Thank you, Jill. Thank you to everyone who contributed. And thank you listeners. Be sure to rate me as you subscribe. Like follow or whatever it is you need so you get a pain when the next show drops. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon. Happy Festivus.
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Caregiving and Parenting Are NOT the Same
11/18/2024
Caregiving and Parenting Are NOT the Same
Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the , that's an economic value that totals more than $470 billion. Since November is National Family Caregivers Month, we wanted to highlight what it means to be a caregiver and why everyone should be looking out for the caregivers in their lives. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Read more about how different caregiving and parenting are on the Center for Family Involvement's blog: Learn more about . TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work with the Center for Family Involvement and VCU's Partnership for People with Disabilities. 01:00:37:05 - 01:00:47:20 Erin Croyle I started this podcast because the media rarely highlights the issues that impact us so deeply. Caregiving is one of them. 01:00:47:22 - 01:01:10:03 Erin Croyle More and more, we're seeing the term caregiving lumped in with general parenting duties, diluting what it truly means to be a caregiver. In honor of November being National Family Caregivers Month. I'm going to break down how parenting and caregiving are fundamentally different. 01:01:10:05 - 01:01:38:17 Erin Croyle I'm going to keep it real with you. Listener. This episode is really late. It should have been out last month and that episode is still coming. It's in honor of October being National Disability Employment Awareness Month, and I've interviewed two wonderful guests already and that will be out soon. But like so many parents and caregivers, I know things are just relentless. 01:01:38:19 - 01:02:07:08 Erin Croyle And I am at the point in my life where I recognize that it is impossible to meet all of the demands placed on us as parents who are also caregivers. But it's almost as impossible to realize that what we as parents and caregivers come to know is our normal is not the norm and it is so important to point this out, not to wallow in how hard it can be because nobody has time to wallow. 01:02:07:14 - 01:02:33:23 Erin Croyle And who the heck wants to anyway, right? But it's important to validate the feelings of overwhelm and burnout and exhaustion and sadness and frustration that we feel this society we live in isn't designed for kids like ours, and it's not kind to caregivers either. Even politics. And we don't really get into politics, right? I leave that out of this. 01:02:34:00 - 01:03:03:20 Erin Croyle But for caregivers, there are things you need to know during voting cycles about the way that our government structures work that most people don't even know are there. You have to understand health care and Medicaid and waivers and supports that your children will need when you're gone. And you have to face the extreme difficulty of knowing that you could very well outlive your child. 01:03:03:22 - 01:03:33:20 Erin Croyle Do you have to set up things for when you're gone to make sure that your kid is going to be okay? It's something else. And I don't think that as caregivers, we really talk about that openly. That kind of melancholy that we live in. And this isn't just about those significant disabilities where someone will need care their whole life. 01:03:33:21 - 01:04:08:11 Erin Croyle I mean, that's certainly part of it. But I've got to be honest, my own able isn't blind in me to how difficult it can be to care for someone with ADHD or mental health struggles. Neurodiversity. Physical Disabilities. Even though someone will be able to live on their own one day with less supports does not mean that the caregiving to get them to that point is not substantial. 01:04:08:13 - 01:04:41:04 Erin Croyle It's a lot. And just getting a diagnosis for these invisible disabilities in rare conditions is really hard. And that alone takes time. Believe me, I'm there. I have three kids and neurodiversity is through and through in our household. And and we didn't really see that until later because my oldest child's needs were so great. The idea that there was neurodiversity in my youngest, I don't think that I picked that up soon enough. 01:04:41:04 - 01:05:12:15 Erin Croyle And I'm still struggling to recognize what they need and the differences. And that's coming from me. Who was diagnosed late in life with ADHD, who's understanding my own nerd adversity and how that's impacted me my whole life. There's such a stigma to so many disabilities. Neurodiversity is whatever you want to call them that we fail to recognize the accommodations and supports and understanding that is needed. 01:05:12:17 - 01:05:44:09 Erin Croyle And unless you experience that, you're not going to understand it. And in fact, I know in some ways those invisible disabilities can be harder because you have to constantly prove to people that it's not a spoiled kid, that it's not a bad child, that it's not bad parenting. It's not. I used to joke that no, doesn't really work in our house and I could feel the eye rolls from the family elders. 01:05:44:11 - 01:06:31:03 Erin Croyle And I'll tell you what. No does not work in our house. It just doesn't. And it's hard. My kids aren't spoiled. Just had to take a completely different route of how I view parenting than what I thought it would be. And I often wonder who I would be if my kids were non-disabled and neurotypical. And I'm actually really grateful that the differences in my kids have enlightened me to the differences that we need to accept in this world, in this society, in our schools, everywhere. 01:06:31:05 - 01:07:01:01 Erin Croyle And we're still not there. That's why we really need to highlight how complicated and different the caregiving component of being a parent caregiver can be. My first child, Arlo, as I mentioned in the intro, was diagnosed with Down syndrome soon after he was born. Later came other diagnoses hearing loss, sleep apnea, ADHD for him as well. Anxiety. He's immunocompromised. 01:07:01:03 - 01:07:28:14 Erin Croyle We've dealt with heart issues both early on and then later asthma, and then most recently something called ITP or chronic thrombocytopenia. This is low platelet counts that you discover in routine bloodwork, and that routine blood work is routine for my kid with Down's syndrome. But most kids don't have to have annual bloodwork to monitor thyroid and iron and all of these things, right? 01:07:28:14 - 01:07:56:06 Erin Croyle That's just another caregiving aspect that is necessary and important, but it's a lot. And thankfully, my son is very good with doctors, but early on he wasn't. And it was torture. Taking him to see an EMT and have to hold him down to get his ears cleaned or literally wrap my body around him for his blood draws. It rips your heart out. 01:07:56:08 - 01:08:21:19 Erin Croyle And in so many cases, we don't really have anyone to talk to because if you turn to family elders who haven't been impacted by disability, I mean, I remember one person saying to me how parenting is all about disappointment and letdowns and you got it all at once when your son was born with Down syndrome. As a new parent, I just kind of nodded and thought, okay. 01:08:21:21 - 01:09:00:17 Erin Croyle And that is the biggest bunch of baloney I've ever heard for children who are neurotypical non-disabled. The decks aren't stacked against them at birth right. But if you're in a wheelchair, if you have hearing loss, if you have any sort of thing that needs extra help or assistance, even though it's there, my gosh, it's hard to find. And it takes someone who can have the tenacity, the patience, the time and the energy to find all the supports that are there. 01:09:00:19 - 01:09:27:06 Erin Croyle And even the supports that are there are so tough to get. I mean, waivers, my son has elopement issues and we have a waiver for him. And we wanted a fence as an environmental modification to help keep him safe in our yard without having to be out there constantly just to give him space without someone hovering over him. 01:09:27:08 - 01:09:53:04 Erin Croyle And it took five years to get that approved. Much of that because of errors from the people working in the waiver system. I mean, that's the sort of thing that people are dealing with, the supports in place like respite care, personal care attendants, the hoops you have to jump through to get those supports are so tough to get. 01:09:53:06 - 01:10:21:22 Erin Croyle And the people in those roles, they don't get paid enough or they're not really invested or they're college students, so they're in and out and gone. And as parents you have to train them. So you have to train a caregiver every couple of months. It's exhausting. And when parents or family members are providing the care, it is really difficult for them to be paid as caregivers. 01:10:21:24 - 01:11:12:10 Erin Croyle Most states don't allow it, certainly not under 18. And the income loss that you face as a family who has to support children with disabilities, even if you have help around, it's substantial and it just creates this extra stress in your life that you really don't need. Even the term caregiving is being watered down. I get the grandparents and extended family that service parents gravitate towards the caregiver title because it is kind of a catchall, but a caregiver by definition and as a family member or paid helper who regularly looks after a child or a person who is sick, elderly or disabled, all parents serve it caregivers from time to time. 01:11:12:12 - 01:11:37:12 Erin Croyle But that's not the same as the primary caregiver role that so many of us took on the moment we became a mom or dad. Now this matters because we need to acknowledge how different and challenging that hybrid parent caregiver role is. It can consume us without realizing it because we love our children so deeply, will go to great lengths to ensure their comfort. 01:11:37:14 - 01:12:04:20 Erin Croyle And like I said before, that becomes our new normal. But again, it is not the norm. A really good example of this is part of why this episode is so late. So my family got hit with a stomach flu and it hit my daughter first and then I got hit because I had to steam clean the car with the mess that was even though my kid was nine, they couldn't really get it in the bucket. 01:12:04:20 - 01:12:31:23 Erin Croyle And that's okay. And even though I wore like a mask and gloves, I still got sick a couple of days later. And my gosh, it was miserable. Well, then my 14 year old, he gets the stomach flu, but he's not able to really say that to anyone in a in a conventional way that makes us understand. So he's at school and I had already warned folks at school, so they're right there as part of the caregiving aspect. 01:12:31:23 - 01:12:59:14 Erin Croyle I'm in constant touch with my children's school, both my son, my oldest, so three kids, so my oldest with Down Syndrome and ADHD and so many other medical complexities. And then my youngest with ADHD, who experiences anxiety, which can manifest in stomachaches and and emotional dysregulation. So I hear from their school a lot. 01:12:59:16 - 01:13:21:10 Erin Croyle But when my 14 year old gets the stomach flu, it's it's an event. If he has to throw up, he doesn't really tell us. He just kind of does it. And so I have to pay attention to the nonverbal cues because he'll do this thing with his lips. That's, you know, he only does really when he's about to throw up. 01:13:21:12 - 01:13:47:08 Erin Croyle And then I have to help him catch a bucket. And so as I'm on the mend from the stomach flu, I am then helping him get his vomit into a bucket. And I pulled an all nighter because every time I he would wake up and Russell, I would be ready to help him. And also because he was sleeping and laying down, I had to help him move forward so he wouldn't get sick or choke. 01:13:47:10 - 01:14:13:15 Erin Croyle I mean, it was tough. And most 14 year olds, you're going to bring him some ginger ale and give him some Tylenol and they're going to be okay and they're going to watch TV. But for me, this was round the clock care. And that's the case with a lot of illnesses. And that's just one example. Several years ago, I wrote a blog called Caregiving and Parenting are Not the Same. 01:14:13:15 - 01:14:39:03 Erin Croyle And to this day, that blog gets more traffic than probably anything I've written. And so I'm going to read some of those comparisons to give myself some grace in what has been a really tough year. I'll also put the article link in the show notes. You can read it in your own time, and I would love to hear what differences you recognize in your own circles and in some of the challenges that you face. 01:14:39:06 - 01:15:07:18 Erin Croyle Because like the title of this podcast, I think we need to acknowledge these differences and support each other and also let others know what we're going through. Because I don't know about you, but this experience of caregiving can be isolating. You are so entrenched in all of the work that you have to do both for your actual job and then for your parenting role and then for your caregiving role. 01:15:07:20 - 01:15:41:12 Erin Croyle And then if you have a partner in your life, there's that other children, there's that a pet, there's that there. There aren't enough hours in the day to do it all. And I really think it's important for us to start recognizing that and start really just asking those around us to acknowledge that, to recognize that, and then help fix the structures in place that make it so hard for us to just function. 01:15:41:14 - 01:16:16:07 Erin Croyle Because even advocacy efforts that we could be doing as caregivers, the people I know are so tired they can't get it together to just advocate for the most simple things. And so because I'm so spent, I'm going to read a bit from my blog and leave it at that. How is parenting different from caregiving? Parents need babysitters. Caregivers need respite. 01:16:16:09 - 01:16:44:09 Erin Croyle Parents take their kids to well visits and sick visits a couple of times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments. Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team. Parents make dinner. 01:16:44:11 - 01:17:11:15 Erin Croyle Caregivers feed their children by mouth, by tube, whatever is needed. Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they've also helped modify. Dinner is usually a crapshoot. Parents go to parent teacher conferences. Caregivers go to those conferences. And also IEP meetings. 01:17:11:15 - 01:17:41:20 Erin Croyle Behavior plan meetings, care plan meetings, person centered planning meetings, Medicaid eligibility meetings. So many meetings. Parents take their kids to soccer practice, drink coffee on the sideline and shoot the breeze with other parents. Caregivers search for a sport or program that is suitable. Fill out piles of paperwork, meet with the people running the program, go for accommodations needed and are on high alert, monitoring their loved one, often jumping in to help. 01:17:41:22 - 01:18:09:06 Erin Croyle Sometimes even coaching because no one else there will make the accommodations needed for their child to participate. Parents sign their kids up for afterschool clubs. Caregivers contact clubs to see if supports are available. They usually aren't. So they request assistance offered to help change the system or offer support themselves. Caregivers sometimes give up or don't bother asking because it's not worth the effort. 01:18:09:08 - 01:18:35:10 Erin Croyle Parenting is planning a family vacation to somewhere fun. Caregiving is wondering how you can make endless visits to specialists feel like a vacation because you have no money or leave for anything else. Caregiving is for getting that dream vacation and finding something that's doable because medical conditions make travel difficult. Parents park in the most convenient space available for their family's needs. 01:18:35:12 - 01:18:58:06 Erin Croyle Caregivers arrive to events early, hoping to secure a disabled parking spot. Those spots are often taken by parents who don't need them but thought 5 minutes don't matter. So caregivers navigate dangerous parking lots, pushing a wheelchair or monitoring a child who might collapse in the middle of the parking lot or run off with no safety awareness of cars. 01:18:58:08 - 01:19:27:16 Erin Croyle Parents are often sleep deprived for the first few months and years of a child's life. Caregivers are sleep deprived indefinitely. Parents carry a diaper bag. And later some extra clothes and eventually just their own stuff again. Caregivers bags only get bigger in every sense bigger diapers, bigger clothes, and the emotional baggage we carry. But keep buried down below gets heavier as we see our loved ones peers pass them by as the little kid cute fades. 01:19:27:20 - 01:19:58:03 Erin Croyle Stairs become less kind and more prominent and it stings. But we barely have time to process it because we have to keep on caregiving. Parents rules change when their children become adults. They'll always be a parent, but their work is done. Caregivers will always be caregivers, and their role becomes more complicated as time goes on. So if November National Caregivers Month, how do we care for our caregivers? 01:19:58:05 - 01:20:32:14 Erin Croyle We need to be kind to ourselves. We need to gently let others in our lives know how hard this can be. While also letting them know it's not our children that make it hard. I can never say this enough. My children are not a burden. It is the constructs of our society that create the burden. It's not possible to meet all the demands placed on us. 01:20:32:16 - 01:21:08:06 Erin Croyle And when you're a caregiver and you're literally taking care of someone else, keeping them alive, keeping them well, keeping them out of the hospital, keeping them in a safe space in their own mind and body, that is a lot of work that no one is going to understand unless they've had to do it themselves. And so we need to be more honest about our workloads, about what we're doing in our days. 01:21:08:08 - 01:21:18:09 Erin Croyle Sure, things are nobody's business, but my gosh, sometimes I think it really helps for people to know what other people are going through. 01:21:18:11 - 01:22:01:16 Erin Croyle Stop shoulding yourself. I should have taken a shower today. I should have eaten breakfast. I should have gotten this podcast out last month. Should, should, should y'all. There are so many shoulds out there that we could wake up tomorrow and everything could change. What we really should be doing is prioritizing what matters. And so if you have to miss a deadline or just know that some days the only thing we can do is meet the most basic and primal needs...
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Are Inclusive Schools Even Possible? Part 2
10/01/2024
Are Inclusive Schools Even Possible? Part 2
Meaningful inclusion is possible, if we’re being honest though, it’s so rare that most folks don’t even know what it looks like. In part two of this episode on inclusion in public schools (be sure to !), Erin Croyle has educator and advocate Trina Allen break down what co-teaching is, how it works, and what can be done to make truly inclusive education a reality. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Talia A. Lewis' . How much are students with disabilities actually included? demonstrates there is much work to be done. releases various annual reports and as well as topical studies. More on the . one. Learn more about the (IDEA). TRANSCRIPT: 01:00:07:11 - 01:00:39:01 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I joined the caregiver club 14 years ago when my first child was born with Down syndrome. My journey weaved its way here, working for the Center for Family Involvement at VCU's Partnership for People with Disabilities. 01:00:39:03 - 01:01:09:07 Erin Croyle This podcast highlights the joys and hardships we face. Celebrating how amazing the odyssey of parenting, caregiving and disability can be. While examining the spiderweb of complex issues, we're tangled in, The fight for meaningful inclusion in our schools is a struggle for so many of us. In our last episode, I spoke with special education teacher advocate, activist and parent Trina Allen. 01:01:09:09 - 01:01:31:21 Erin Croyle We left off talking about how gut wrenching advocating for an inclusive education can be, especially as our kids get older. And we're picking up right there with Trina telling us not only that it can be done, but how we can do it. 01:01:31:23 - 01:01:47:19 Erin Croyle I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track. The thing is, like a kid with Down syndrome is one kid with Down syndrome. 01:01:47:22 - 01:01:50:04 Trina Allen Thank you! 01:01:50:06 - 01:02:17:19 Erin Croyle Yes, Autism is one kid with autism. CP And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is. I think that our schools, once we get to a certain level, it's not parents failing, but it's their schools not offering enough options for kids with more significant needs. 01:02:17:19 - 01:02:34:24 Erin Croyle Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that. Trina Allen Fix it! Erin Croyle They reach a certain age and there's no choice anymore, right? No other option anymore. Trina Allen So while we're on the fight for inclusion, it cannot be on the back of our individual child and listening to what he needs in the moment is the biggest fight of ableism. Listening to him is the biggest fight of Abel's that you will ever do with him. The issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things. 01:03:03:03 - 01:03:27:24 Trina Allen That math class needs to be structured on. These are the standards, and every single kid in it is at a different place and it needs to be supported in that way. And so do I think it can be done? my God. Math is like the easiest. You know, it becomes more complicated in like history and English, but it doesn't have to be if the design is universal. 01:03:28:01 - 01:03:47:17 Trina Allen Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son. That curriculum needs to be created with him and created with the kid at a different level and created with a kid at the different level and created with the kid in a different level. 01:03:47:19 - 01:04:27:00 Trina Allen And it needs to be individualized. And that is doable with time and space. And what I do like about the current district that, you know, that we both are dealing with is that's the goal. And when the systems have not created all of those levels of curriculum and are displayed by the slide show and are displayed in all those quiet ways that are as equal and that are that his production is as integrated and valued as what they expectation is that his production is the expectation. 01:04:27:00 - 01:04:54:03 Trina Allen Right. And that there are multiple other children in the class with interesting and independent and specialized production. That model is doable. You know, it's so doable and I can see it and I know how to do it. I just need some time and I know that other teachers want that. And with all liberatory struggles, we need to understand that we are not working. 01:04:54:03 - 01:05:25:24 Trina Allen For now, boys. We have to harm reduce in the now, right, Because it can't be on the back of our own children. But to know that we are creating a world in which that loves them better is important. All of those kids in the class that sees what a truly universal design lesson is are benefited right, whether they're disabled or neurotypical or not. 01:05:26:01 - 01:05:37:10 Trina Allen I think that that is happening. It's just not happening fast enough and it's not happening in every classroom. It depends on the teacher. The teacher. It depends on the there needs to be a good teacher herself. 01:05:37:12 - 01:05:40:05 Erin Croyle yeah, absolutely. And that doesn't exist everywhere. 01:05:40:09 - 01:05:48:10 Trina Allen No. And in most places it doesn't. And most places pull out of teaching is what they're just talking about. Reasons for it. They say, Coach Jane, you're talking about racism. 01:05:48:12 - 01:05:57:10 Erin Croyle And what in fact, I think I think briefly, I think it's important because I believe that there are going to be people listening who don't even know what a co teaching model is. Do you want to explain that? 01:05:57:15 - 01:06:47:11 Trina Allen Yes. Okay. You're right. Okay. So there are multiple ways in which co teaching can look well we talk about co teaching is just like term is meaningless unless we're talking about the individual place in which it's practice. When I say co teaching and I actually mean it as opposed to placement, I mean a classroom with two teachers who create the lessons together who are based off of whatever it is that you're trying to teach, whether it be art or history or math or whatever, so that you are creating it together in a universal design, meaning that every standard from pre-K to 12th grade So you're going to have some kids that go are reading at 01:06:47:11 - 01:07:32:01 Trina Allen the 12th grade level, you better hit them right? You are making the instruction to meet an understanding at each space. Right? And that I expected outcomes are somewhere on that distribution and you don't pick which one is right. You just portfolio out there where that kid is right and you teach them. The next thing we can talk about seventh grade standards and we can say, yes, this is where we're hoping that kids are at with the understanding that not everyone's going to be at that place and with the understanding that some kids might be in ninth grade and some kids might be a fifth grade. 01:07:32:04 - 01:07:51:01 Trina Allen And that is fine for the kids at fifth grade, we're looking at the sixth grade standards for the kids. At ninth grade, we're looking at the 10th grade standards. So we're moving them where they want to go. And also based on their personal needs, let's say they really hate math and they're just getting through it. But my God, they love English. 01:07:51:01 - 01:08:23:13 Trina Allen So, you know, let's let's push them a little harder on that. Let's show them all this wealth of information that they're very interested. It's individualized based both on where they're at in that particular subject and also personal understanding and ways in which they learn. And it also needs to be, if it's a student who is not speaking and needs to be completely accessible with their AC, and it needs to be provided in multiple output ways, everything needs to be using the technology assistance that they need and have, and it needs to be titrated to their individual. 01:08:23:13 - 01:08:57:07 Trina Allen And that is a big ask for Koti to write. That's just one lesson and I think I've said a lot. So is it doable in every time and every way? If you're teaching five different periods and you have 100 kids and no, it's really, really hard to do that, especially when you're often not giving a co teacher or when people misunderstand the model and think that the co teacher is to adapt the work, that there is an expected work. 01:08:57:09 - 01:09:24:02 Trina Allen And it's this narrow standard that you're teaching for the class and then everything else is an adaptation you make, you do with your kids that is not co teaching, that is placement in a generic classroom. It needs to be the curriculum needs to be created with guidelines at everyone's level. Otherwise kids fall through the cracks, right, right. Or disabled or not. 01:09:24:04 - 01:09:58:14 Trina Allen And that co teaching model is great. It also, in my opinion, needs to have it can't just be one student that is multiple disabled, has higher support needs in a class that needs to be civil cohorts, right? Because anybody that feels like radically different, unless they have the either care, but if they have a personality that is more sensitive or self-conscious, you know, like anxiety based, they need to feel like they are part of a collective as well, that there's matching in in peers as well. 01:09:58:18 - 01:10:11:23 Trina Allen Yeah. Need to feel a sense of belonging again. And honestly, the environment needs to change as well. You're talking about folks with sensory needs. The typical classroom is. 01:10:12:00 - 01:10:15:06 Erin Croyle fluorescent lights and the acoustics. 01:10:15:08 - 01:10:38:16 Trina Allen It needs to change. We can make modifications that I tried to in my classroom. I get a swing, I put up things and the lights and the fire marshal tells me to take them down, make up, not looking. No, I'm kidding. I get fire safe ones, right? I have the tag and the fire. Right. You can't change walls. 01:10:38:18 - 01:10:46:02 Erin Croyle Right? If you don't have windows, you can find ways to provide light. If you have windows, you can get shades that make the light not so bright. 01:10:46:04 - 01:10:46:21 Trina Allen Right? 01:10:46:23 - 01:11:00:03 Erin Croyle I still remember reading somewhere, you know, a teacher who really decorated the classroom and had all these glittery things. And there was a student in there with sensory issues and the blinking was really just triggering for them. 01:11:00:03 - 01:11:00:11 Trina Allen Yeah. 01:11:00:17 - 01:11:30:12 Erin Croyle Like you have to really see the whole classroom. And Trina, before I forget, I just have to say, the way that you talked about my son, I think is so important because students deserve their teachers to see them for who they are. The way that you see my son, that connection and that being able to understand, most people would just see a kid with Down's syndrome behavior issues that don't want to see in school. 01:11:30:14 - 01:11:38:12 Erin Croyle You get to know your students to know that actually Arlo wants to be successful and feel good. You know that about him. 01:11:38:14 - 01:11:39:02 Trina Allen my God. 01:11:39:04 - 01:11:40:03 Erin Croyle how your you're body. 01:11:40:03 - 01:12:12:06 Trina Allen That anybody that doesn't see that right away has been horribly trained by our society not to see it. It is a paradox. If I had to rely on what my students said to know who they were, I'd be in a world of hurt, you know, like that empathy that like who we are. It's so funny too, because teachers and we spend so much time, like often times graduate and myself to make connections with kids, you know, not congratulating myself, but like, yeah, hey, I made that in with that kid and good. 01:12:12:06 - 01:12:26:01 Trina Allen And I didn't know how, but realistically, they do it all the time. Do you want to talk about kids who are forced to know the adults around them? Disabled kids, especially non-speaking kids, are the ones to ask. 01:12:26:03 - 01:12:45:17 Erin Croyle It's interesting. I recently I had someone asked me and this is something that comes up periodically because students with disabilities have such vast needs that sometimes it doesn't feel appropriate. So I think a lot of times parents, especially in younger years or grade school years, sometimes our kids have to use a diaper way later than others. 01:12:45:18 - 01:13:06:01 Trina Allen my God. Yeah, right. Yeah, 100%. And some people will always need dollars. Some people will always need a bathroom assistance for the rest of their life. And that is okay that they should be in charge of who, when, why, how, and what. And if you want to get on a real rant, talk to me about the specifics of that. 01:13:06:01 - 01:13:38:14 Trina Allen In a multiple disabled classroom in which no agency is enough. And I when we talk about body fascism, when we talk about eugenics, when you relate to all of the things that people might need, all of the things that people might need in a daily care kind of way, it's important to me the lack of humanity we give folks. 01:13:38:16 - 01:13:46:24 Erin Croyle I completely agree. I mean, the lack of adult changing tables, rooms that are, you know, accessible, available, available there. 01:13:47:01 - 01:14:04:19 Trina Allen That there are stairs when people use a wheelchairs and that the primary consideration is to make a space safe for them, that they have to take a janky elevator with an adult who happens to have a key. Yeah Yo, now, like most. 01:14:04:19 - 01:14:10:09 Erin Croyle People imagine how claustrophobic and trapped that must make students feel. 01:14:10:11 - 01:14:29:19 Trina Allen I the first year that I taught in the district previous I had a classroom with 15 kids, five of whom used wheelchairs exclusively. And I had myself and one para told me with expectations for that. 01:14:29:21 - 01:14:35:03 Erin Croyle And then a lot of those situations, these are students. You should have 1 to 1 support. 01:14:35:04 - 01:14:36:02 Trina Allen Well, they were all supposed to. 01:14:36:06 - 01:14:57:23 Erin Croyle But they don't. Let me ask you a question then. I think sometimes people who are not involved in disability, who don't understand it, they think that there are some open and closed cases where general education is not appropriate. So is there any clear cut case where, you know. 01:14:57:24 - 01:15:20:17 Trina Allen And in fact, we're going to talk my favorite. Okay. So I've been a teacher who's taught in this field. I've lost many students. Right. And that is incredibly difficult. But it makes you think and makes you think about every single moment. Right. And honestly, it might make you a little paranoid about some things. It makes you think about every single moment, and that's the benefit of it. 01:15:20:17 - 01:15:42:12 Trina Allen It gives you perspectives. And I had a student the first year that I taught in this other segregated class, and there was a group of intellectually disabled students, 18 students, many who were multiple disabled, and that was before I had the reverse inclusion program. But there was one student who was incredibly medically fragile. He had he had a birth injury. 01:15:42:12 - 01:16:04:21 Trina Allen There was parts of his brain that no longer worked, and he had a heart situation in which his head could never go below his heart like, wow, multiple things. Right? And he did have a nurse. And I was worried because he had such a different understanding of the world. And 90% of what we were doing was sensory based. 01:16:04:23 - 01:16:35:15 Trina Allen Right. And care, support, care, like making sure all of his medical needs were attended, making sure all of the things that he needed done daily were being done. And then for the education piece, we're talking about cause and effect. And so would I be able to support him in such a busy classroom and his parents had to fight with lawyers, fight to get him placed in a segregated classroom at that level versus a care classroom at the county level. 01:16:35:16 - 01:16:36:14 Erin Croyle Wow. 01:16:36:16 - 01:16:58:13 Trina Allen They had a fight. I wish I'm not I'm not going to say who they are, but without asking permission first. But in any case, they did. And they're amazing advocates and I love them. He used a wheelchair that was specifically made for him, and he liked to spend in that wheelchair. And then he would smile very slowly. One side of his mouth would smile. 01:16:58:15 - 01:17:19:06 Trina Allen And then if he did that, he had a dolphin. He liked the sound of that made a squeak noise. Then he would stick out his tongue and he would smile. So in my classroom, in order to ingratiate him into every single activity, the kids get this idea that he has to spin, of course, to to join the court, and then we need to do the dolphin. 01:17:19:07 - 01:17:39:13 Trina Allen And so every single transition, it was like this thing of who gets to spin him for cooking, for making a cake. He was going to put the mixer in his hands. He can feel the vibration. Who gets to do it? It was like the joy of the entire classroom of who gets to participate with him. And he loved it because you got all this sensory input. 01:17:39:15 - 01:18:05:13 Trina Allen And by the end of the year, it wasn't like I was having to integrate him into anything the class already did him, and he did pass away that summer and it was he graduated though. yeah, right. Like and so he, he passed away that summer and I, I was like, how am I going to leave my class with options? 01:18:05:15 - 01:18:11:06 Trina Allen Like I went from not knowing how to integration to not knowing how to run a class without him. 01:18:11:08 - 01:18:11:22 Erin Croyle Right. 01:18:12:02 - 01:18:49:00 Trina Allen Because multiple levels of ability in a space make that space inclusive. Now, unless that person themselves either directly or indirectly tell you they don't want to be there. Right. Like personality type matters too. There might have been some kids like a don't touch me with that, you know? Right. I wasn't him, but I think it's really, really important that we take personality and perspective and desire involved in all of these things. 01:18:49:00 - 01:19:09:14 Trina Allen That's the primary. You know, listen, that deep listening, that understanding of allowing people to be themselves really means that. But also don't let it be because the environment sucks. Don't let it be. They don't want to be there because environment sucks, right? Like, don't let it be that. And if it is that, figure out a way your plan and your map for fixing it. 01:19:09:16 - 01:19:16:15 Trina Allen But no, there's no one. What person needs to be segregated from a family at school? So who needs to be institutionalized...
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Are Inclusive Schools Even Possible? Part 1
08/27/2024
Are Inclusive Schools Even Possible? Part 1
Imagine being treated as a guest in your own school. For many students, not only is that their reality - it's by design. In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Talia A. Lewis' . How much are students with disabilities actually included? demonstrates there is much work to be done. releases various annual reports and as well as topical studies. More on the . one. Learn more about the (IDEA). TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities. 01:00:39:04 - 01:01:08:18 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know. 01:01:08:20 - 01:01:28:22 Erin Croyle She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me. 01:01:28:24 - 01:01:38:13 Erin Croyle Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place? 01:01:38:16 - 01:01:59:07 Trina Allen Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on. 01:01:59:07 - 01:02:22:07 Trina Allen And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students. 01:02:22:09 - 01:02:48:19 Trina Allen And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education. 01:02:48:19 - 01:03:20:16 Trina Allen And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation. 01:03:20:18 - 01:03:38:24 Trina Allen It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen. 01:03:39:03 - 01:04:16:08 Trina Allen And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions. 01:04:16:10 - 01:04:40:06 Trina Allen And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website. 01:04:40:08 - 01:05:06:15 Trina Allen What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices. 01:05:06:15 - 01:05:08:20 Trina Allen That's sort of where I'm. 01:05:08:22 - 01:05:20:06 Erin Croyle Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices? 01:05:20:08 - 01:06:06:22 Trina Allen Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own 01:06:06:22 - 01:06:31:07 Trina Allen heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best. 01:06:31:09 - 01:06:39:20 Trina Allen And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research. 01:06:39:22 - 01:07:06:23 Erin Croyle Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available. 01:07:07:00 - 01:07:51:18 Erin Croyle The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith. 01:07:51:20 - 01:08:10:04 Erin Croyle But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it? 01:08:10:06 - 01:08:52:00 Trina Allen The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right? 01:08:52:02 - 01:09:24:09 Trina Allen It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that. 01:09:24:09 - 01:10:01:01 Trina Allen And I think when it comes to civically, then you already have an open wound and now you're trying to treat it with 25 different. There needs to be I mean, every kid needs an IEP, right? Every kid needs an IEP, right? There should be no special in education. That should absolutely be that. And and because it's not and because the system is set, the false ideas of what human ability and production should look like, we need to find specifically inclusion, what we should be funding universal design. 01:10:01:03 - 01:10:11:01 Trina Allen We should be funding universal design for everybody. And folks with higher support needs, whatever that looks like in whatever area they might have, that should be centered. 01:10:11:03 - 01:10:31:15 Erin Croyle Right on screen. A universal design for living and learning needs to be embedded in everything we do, not just our schools. Circling back to idea funding. When it was enacted in 1975, it was supposed to cover 40% of costs for students with IEPs. Currently it's 14.7%. 01:10:31:20 - 01:10:32:05 Trina Allen That right? 01:10:32:08 - 01:10:56:03 Erin Croyle Schools can and do build Medicaid for the services their higher needs students receive. For folks who might not know children with disabilities that are significant enough to require lifelong support and care can apply for and receive what are known as Medicaid waivers that support home and community based living rather than institutionalization. Now, on the surface, this sounds like the perfect workaround, but it too is problematic. 01:10:56:05 - 01:11:21:01 Erin Croyle So much so that the details deserve a podcast of their own. The short of it as we know, health care in this country is not particularly stable. The Affordable Care Act removed lifetime caps on Medicaid, but there's no guarantee those caps won't be introduced. Based on our election cycles, some might think that these concerns are alarmist or unlikely, but unfortunately they are not. 01:11:21:03 - 01:11:43:00 Erin Croyle A good example. My son was born in 2010, just not that long ago. It's the same year that the Affordable Care Act was enacted, and had it not been, my son would have likely been denied medical coverage because he was born with Down syndrome, which is considered to be a preexisting condition. In addition to that, my son's medical complexities are many. 01:11:43:05 - 01:12:07:20 Erin Croyle He gets medications that are thousands of dollars a month, and thankfully, our insurance and his Medicaid pay for that. But thinking about lifetime caps and what he's going to need over a lifetime, I don't want to ever think about what would happen if there was a cap on his medical coverage. As far as Medicaid payback laws, I very much get the why behind them. 01:12:07:22 - 01:12:27:17 Erin Croyle But Medicaid doesn't take into account the money lost by families hiring lawyers to assist with the copious amounts of paperwork it can take to set up accounts in trust for your child. Because it really is that complicated. And then there's the lost income that comes with caregiving, and that's not a small amount. Trust me, I know this from experience. 01:12:27:19 - 01:12:57:14 Erin Croyle There is nothing simple about any of this. It's complex. And as you mentioned, it's systemic. It's not just our schools. It's across all parts of society. It's intermingled. So much so that we have to look at the bigger picture to truly understand it. And a lot of our school administrators don't really see that. And all of this is harming children and it's causing undue hardship for their families, and it's further marginalizing people with disabilities. 01:12:57:19 - 01:12:59:21 Erin Croyle From day one. 01:12:59:23 - 01:13:32:24 Trina Allen 100%, 100%, there should be for the things that you need for survival. And I would say belonging is certainly part of that. But just for the material of life, shelter, food, medical, that should be provided because we exist and it should be provided to the level of need. Right. So it is absurd to think about worrying about how much your child will cost and whether you can afford to save them. 01:13:33:01 - 01:14:00:19 Trina Allen That is not a position in an ethical country. That is not a position in an ethical society. It's not. And yet it is something that we think about all the time, or whether with their life will look like when we're gone. I ruminate on that, and part of that is because there aren't the safety nets and it's it's a hard place to be, but it's also a place to move from because in my opinion, this never there's never an end to a laboratory struggle. 01:14:00:19 - 01:14:01:22 Trina Allen Right. So. 01:14:01:24 - 01:14:31:13 Erin Croyle Right. And I think that especially with folks, aging disability is something that impacts everyone's life. One in four Americans have a disability that impacts their daily life. And when you think about that, that means either you or someone you love or someone close to you will have a disability in your lifetime. And so for me, that didn't happen until my son came into my life, not in a meaningful way. 01:14:31:13 - 01:14:52:16 Erin Croyle And so I think that's part of why I find origin stories so interesting, because I don't even know who I was before that happened. I would probably be embarrassed if I talked to 30 year old me about what people with disabilities need because I probably knew nothing. And that's why I think it's important to have these conversations. 01:14:52:18 - 01:15:20:02 Trina Allen But so I think there are several things with that. One, we live in a society that intentionally teaches us not that by segregating children right? If you notice, if you watch the segregation progression, disabled people are sort of sheltered and loved in this very paternal, rustic, patronizing way when they are small children. Everyone loves the headstart that has, again, pro headstart. 01:15:20:04 - 01:15:39:16 Trina Allen But, you know, that shows the video of the little boy with his new gait trainer. And it's just this thing and makes people feel good and great. And and he's included in the classroom in kindergarten and then he gets to be in third grade and the curriculum starts to change. And we'll he has a really great teacher of fourth grade, so it works. 01:15:39:18 - 01:16:01:03 Trina Allen And then sixth grade happens. And that switch that you just see, maybe it's that teacher that just doesn't understand. And then pretty soon in seventh grade, in eighth grade, and then by the beginning of high school, he's alone in a room. It's just like segregation. But by the time he's 25, where in society is this man with this intellectual disability? 01:16:01:05 - 01:16:32:05 Trina Allen And how is he included? And the answer is, you don't even know him. He has been so significantly excluded. The kids will remember back to him in preschool, but would have no consideration of how they would work with him at a job. Right. Right. They're gone. And then at 50. At 60, it's institutionalization. And that is a boy. 01:16:32:07 - 01:16:59:14 Trina Allen It's a boy. It is a society based on eugenics. The idea that there is only one way to look. That there is only one way to be. And there's only one way to produce for a society that's all about production, exploitation and consumerism. Right. I suggest that if you don't produce, then you are not productive. That means if you don't produce for that system, because we all know, folks, we all produce, right? 01:16:59:14 - 01:17:19:24 Trina Allen We are. We are the production of ourselves. Right? But if you don't produce in a very particular capitalistic kind of way, you're excised from society and I don't think I knew that at 25. I don't think I knew that at 15. And why? Why didn't you? And I know that when we were young, it's because they were stolen from us. 01:17:20:04 - 01:17:38:23 Trina Allen And that's why inclusion is the primary most important thing that we should be fighting for, even when public education is a wound that we're like, my gosh, we're there to get. It's not the thing that we can let go of. It's the thing we have to fight for, especially in these cases. 01:17:39:00 - 01:17:59:20 Erin Croyle I mean, everything you just said, I, I hope that I can maintain with my own neurodiversity my focus on this question, because I want to say, you know, what you said about the example of the child and how everyone loves him when he's young. I see it in my own son. He was little kid, cute and everyone loved him. 01:17:59:22 - 01:18:24:05 Erin Croyle And I slowly, as he got older, saw that change from stares with smiles to stares with, not smiles, not welcoming, stares at stores in places. And you know, the tics and the quirks and the stimming that he does not as welcomed and I think about that. I think about our generation and how we were never exposed to anyone different. 01:18:24:07 - 01:18:52:12 Erin Croyle And even currently, I think that we like to think that inclusion is happening. But when you look at the statistics, right, in 2022, more than two thirds of students served under IDF with the following disabilities. They spent 80% or more of their time during the school day in gen ed classes. So speech and language impairments was 89% specific and learning disabilities 76% other health impairments 71%. 01:18:52:14 - 01:19:26:00 Erin Croyle Development mental delays 70% visual impairments 69%. But when you look at more significant disabilities, deaf blindness, that percentage drops to 31%. Intellectual disabilities 21% and multiple disabilities 16%. So inclusion is happening in a positive way. But when we look at students who are more different than typical and I say in quotes, typical because what is typical? What is normal? 01:19:26:06 - 01:19:37:21 Erin Croyle What is it? We don't even what those words are so ridiculous. And I want to...
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The Only Detox Worth Doing
08/01/2024
The Only Detox Worth Doing
Looking to feel better? Want to help your children feel better? It might be time for a detox. And the one we’re talking about actually works. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Details on the United States Surgeon General’s . Surgeon General on why he’s calling for a warning label for social media. Here is a The Anxious Generation by . Want to share your own experiences attempting a digital detox? Send ! TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement and Lisa's Partnership for People with Disabilities. 01:00:34:17 - 01:01:06:12 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating of the tough stuff for so many of us. Everything feels harder than it should lately. Most everyone I know is just sort of getting by. That whole living your best life vibe that we had going around several years ago is mocked in a lot of circles. 01:01:06:14 - 01:01:22:15 Erin Croyle So what's going on and what can we do to change it? Dare I say, a detox is in order and the one I'm recommending is something virtually everyone needs. 01:01:22:17 - 01:01:46:01 Erin Croyle Is anyone okay right now? I'm living in this fog that's just clinging to every part of my being. My brain, my body, my soul. It lightens now and then and even lifts for a bit once in a while. But most of the time, it's so dense. I feel it pulling me down. When I talk to people close to me, most of them are in this metaphorical fog too. 01:01:46:03 - 01:02:10:05 Erin Croyle I'm sure that some of what my age said is feeling is partly part of middle age, but I see it in my children and other kids their ages. I see it in. I see it across the board. This is an unprecedented mental health crisis that we're in. Our whole country is living under a heaviness like never before. So how do we feel? 01:02:10:05 - 01:02:39:01 Erin Croyle Better. Look, I'm a journalist, not a doctor. Over the years, I've read, listened to, watched and or tried practically every bit of healthy living advice out there clean eating, running, tracking macros, fitness watches, apps, sleep hygiene, skipping breakfast, and sometimes lunch, also known as intermittent fasting. And even though I know that they're ridiculous, I love the idea of a detox. 01:02:39:03 - 01:03:12:01 Erin Croyle The problem is none of them work. Even if I feel better for a little bit once, whatever I've cut out comes back into my life. All that work is for naught except for one. As my daughter would say. Drum roll, please. The Digital Detox. My first true digital detox happened by accident nearly a decade ago. We were on a family vacation in Michigan's Upper Peninsula and we had absolutely no service. 01:03:12:03 - 01:03:41:09 Erin Croyle So imagine a week without a ping, a ring or a vibration interrupting a darn thing. There were no new notifications on social media. I didn't have the ability to post anything and therefore there was no need to see if there were any reactions. I didn't have any breaking news, no texts. It was amazing. That week was transforming. We live in an era of information overload that is beyond comprehension. 01:03:41:11 - 01:04:15:03 Erin Croyle The only way to realize this is to pull yourself out of it. Pretty much everything you pull up on your phone is designed to get you to use your phone or that app or that website even more. This podcast, same thing. Every entity has their own reasons to get you to go down the rabbit hole. Now, for the work I do, it's so that people with disabilities and their families, whether it's ADHD or cerebral palsy or mental health or Down's syndrome or whatever, it's to have meaningful content with relatable stories that we can all listen to. 01:04:15:05 - 01:04:44:08 Erin Croyle It's to connect people through digital media or in person, because this experience can be so isolating. It's providing information and resources for people with disabilities and their caregivers. It's collaborating with professionals and community members to make the world a better place for everyone. Ours is a well meaning rabbit hole, as are many others. But there are plenty of other holes that we fall down, and they range from harmless fun to vapid to downright dangerous. 01:04:44:10 - 01:05:16:17 Erin Croyle Now, as an adult, I'm aware of the social media suck. My children, however, are in defiant denial of the pull it has on them. I finally have some research to back up my concerns. Our surgeon General, Dr. Vivek Murthy, is calling for a warning label for social media platforms. He points out that it's clear that it's a contributor to our mental health crisis and that we have to act now, even though the information we might have is imperfect. 01:05:16:19 - 01:05:46:04 Erin Croyle In his latest book, The Anxious Generation How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness. Social psychologist Jonathan Haidt demonstrates the direct correlation between the introduction turned widespread use of smartphones. Social media, video games and other online platforms to the increasingly worrisome rise of the mental health crisis that we've witnessed over the last decade plus. 01:05:46:06 - 01:06:17:23 Erin Croyle He does this using copious amounts of research. I'll put the links to the Surgeon General's initiative and more about the book and its author in the show notes. Reading his book confirms so many things that I've heard anecdotally from other parents and educators, particularly the term forever elsewhere. It's how they describe children today, especially in school, where they should be engaging and interacting, but they always seem sort of absent. 01:06:18:00 - 01:06:45:12 Erin Croyle If you talk to educators who've been in the field for a while, they'll tell you they see a dramatic change in students today and they'll describe something that sounds just like that forever elsewhere phenomenon. It's really interesting to me how our society puts Steve Jobs on this pedestal because he created the iPhone and the iPad and so many people just hand their children these iPads and kids have their own tablets. 01:06:45:14 - 01:07:14:00 Erin Croyle But Steve Jobs wouldn't let his kids use either of these devices in their home. Bill Gates talked about how he limited screen time for his own children. So our tech leaders know about the dangers. And we now have plenty of evidence that our social media companies are in the business of creating addictive platforms to draw us and especially children in to be heavy users. 01:07:14:02 - 01:07:45:13 Erin Croyle I mean, if you think about it, we are creating content and making them money, most of us, for free. Now, I know it's hard because it can be so much fun and it connects us with people that we know. But I don't know when you think about it, do you really need all that connection? And when I look at all my friends on Facebook and Instagram, these hundreds of people, I mean, no offense to many of you, but do we need to know what's going on in each other's lives? 01:07:45:15 - 01:08:26:12 Erin Croyle Do I really want to be connected to my entire graduating high school class anymore? I'm 46, and the way that our online interactions impact our in-person interactions is palpable. It's desensitized us to being humane and empathetic. It's so easy to write a flippant comment on someone's post that we would never dream of saying to that person to their face. 01:08:26:14 - 01:09:22:03 Erin Croyle It's impacting humanity. It's impacting our caring, our kindness, our tolerance. We really need to look at that. Beyond that, though, just that constant stimulation, we aren't even aware of what it's doing to our brains. But what I can tell you from my own experience when I do quote unquote detox or make intentional efforts to not have my phone or not be online or not check anything, I feel better when we're in the throes of the busiest times of the year and you get the vibration or the text or the ping. 01:09:22:05 - 01:09:52:00 Erin Croyle It can just set you off. It's impossible to relax because we are constantly interrupted and there's a sense of urgency that we never had to deal with before. Someone texts you and they expect to have the response right away. What is that doing to our nervous system? Could part of this be why we are all so tapped out? 01:09:52:02 - 01:10:28:21 Erin Croyle A lot of people like to blame the mental health crisis on the pandemic and the isolation we experienced while we were figuring out just how contagious and awful COVID is. In what in that time, I know that I saw my own children grade school age children, online hours every day. And what I can tell you is even my youngest, who was a kindergartner at the time, was able to circumvent so many safeguards to just go on to YouTube. 01:10:28:23 - 01:10:54:16 Erin Croyle These were school devices and they could figure out how to skip school at home. It advanced the ways that they knew how to work the systems. I hate Chromebooks, but the schools are relying on them now. How are we going to figure out how to undo some of this to move forward? I'm not sure, but we have to. 01:10:54:18 - 01:11:28:02 Erin Croyle Now, I know it's not so simple, and especially when it comes to having children with intellectual and developmental disabilities. Listen, I'm not perfect. I get it. I view screens. I will still use screens. My son is home sick today and is watching TV right now. Because what am I supposed to do? Caregiving is so hard and so isolating at times that letting our children use a screen is the only way to get through the day. 01:11:28:04 - 01:12:04:05 Erin Croyle But we don't know the consequences yet. And there's so little research and understanding about what's going on in the brains of everybody, let alone people who are neurodivergent and or intellectually and or developmentally disabled. Think about it. There's just so little research period for anyone other than, you know, certain demographics. And so now we have this technology that we know, but now we have research and confirmation about how dangerous it is, But we don't have any clue yet how dangerous it is. 01:12:04:05 - 01:12:38:20 Erin Croyle And we might never. For children with intellectual and developmental disabilities. I see this with my own children and their peers. My oldest has down syndrome and ADHD, and there's virtually no research on that particular co-morbidity. Yet anecdotally in my own circles, it's an incredibly common thing to have both Down Syndrome and ADHD right now. Combine that with the fact that we're just at the tip of the iceberg of understanding how incredibly detrimental the recreational use of screens are for children. 01:12:38:22 - 01:13:08:03 Erin Croyle And if we're being honest with ourselves, is the screen use we consider necessary or educational? Truly, that I've heard some educators mention that the popular math learning game prodigy, the online one, is pretty much garbage. And I know personally that it sucks kids in and that there are upgrades that children beg parents to buy. The line is purposely blurred between what is actually educational and useful and what is recreational. 01:13:08:05 - 01:13:45:16 Erin Croyle And that line is intentionally blurred to keep children and adults locked. In the last decade, we've been indoctrinated into having our lives completely online, and it's going to take a while to undo that. I see it with myself. I'll just read news on my New York Times app and go down there Rabbit hole, and suddenly I find myself going from the latest in politics to what's happening in the Middle East to a food article, to an advice column to their gains. 01:13:45:16 - 01:14:12:19 Erin Croyle And all of a sudden an hour's gone, an hour of my day is gone and there are not enough hours in the day. And that's me, an adult who understands this and can say, gosh, I need to do better. But then I see what happens to my children, all three of them. All they want is to watch something or YouTube or a phone or a tablet. 01:14:12:21 - 01:14:48:19 Erin Croyle Just screen. Screen. Screen, screen. Screen screen. My oldest son has experienced so much anxiety and will talk about how he doesn't feel good and whine and even cry asking for YouTube. And because he has Down syndrome and because it's so hard to make friends and because this world is just so hard and ablest and tough. If that brings in joy, I want to give that to him because so much of his life is so hard. 01:14:48:21 - 01:15:12:05 Erin Croyle But then I see what that spiral does to him and I don't know what to do. And what's even more perplexing is when I expressed concern that part of this might be related to him just kind of really wanting to be on a screen all the time. Even his doctors say, well, if that makes him happy, then maybe that's okay. 01:15:12:07 - 01:15:37:20 Erin Croyle But every part of my being tells me I'm wrong. Yet getting him out of that cycle, even in my own home, is virtually impossible. I mean, just going to try to take YouTube off of the TV is really, really hard. I have an article on that that I'll put in the show notes because I did do some research on that. 01:15:38:01 - 01:16:08:19 Erin Croyle While we were quarantined during the pandemic, just to help not have to monitor my children all the time and make sure they weren't watching things. But that's the thing. Even with restrictions in place, even with parental safeguards, it's a toxic rabbit hole that unless you're constantly monitoring your kids, you're not going to know what they're doing. And these computers that the school gives them, that they're supposed to do their homework on. 01:16:08:21 - 01:16:34:18 Erin Croyle It's mind boggling to me that that's the expectation because I know I'm going to have to stand behind my kids to keep them off of YouTube, to keep them on task. Why are our structures set up like this? We need to undo them to help our kids. It's time for us to take control and turn this around for ourselves. 01:16:34:20 - 01:17:04:06 Erin Croyle We cannot change the fact that we live in a digital world. And why should we? There are a lot of benefits, and now that we know the dangers. It's time for us to establish boundaries for ourselves and our children. Now, like I said, I'm not a doctor. I'm not a digital expert. I'm a journalist. And what I've gathered from the legitimate sources that I use, which again, I'll put in the show notes, there are some things we can do first. 01:17:04:07 - 01:17:35:21 Erin Croyle The actual detox. This isn't easy, and in some cases it's not possible to do it purely right. We have work, our kids have school, whatever, but if it's possible, turn off your router for a weekend and just exist existing quiet or just play some music, but just chill it out. If you can extend that time for a longer, go for it. 01:17:35:23 - 01:18:05:05 Erin Croyle If it's not necessarily feasible for your lifestyle because you have to work constantly like I do. Shut it all down when you don't have to do those things. Take out the recreational, take out anything that is not a necessity. Even if a detox isn't possible, we can implement things in our day to day lives that can shift the way that we use smartphones and screens and eventually transform it. 01:18:05:07 - 01:18:32:04 Erin Croyle We're not really made for that. Think about it Having a device that can give you access to anything 24 seven that you can keep in your pocket is not natural, and it takes us away from interacting with people. And I don't mean to sound ableist because I know in some cases those phones or that kind of access is the only way we do interact. 01:18:32:04 - 01:19:01:12 Erin Croyle So there are differences. And that's what I mean by the benefits of this, right? Nothing is black and white. Everything is gray. But for our own well-being, we need to start limiting our use as much as possible. Really look at the notifications you get and think about if you need them in. Turn off what you don't need. Because every time you get that ping, every time your kid gets a notification that they got a like, it just sets off something. 01:19:01:12 - 01:19:29:13 Erin Croyle Their brain. It's a distraction. It takes us out of the moment that we're in. We're forever elsewhere. We need to start challenging the expectations that we should always be available. We're not doctors on call. We're not firefighters that need to come in for an emergency unless we are right. But seriously, challenge those expectations, because the more that we do, the more that that will become a norm. 01:19:29:15 - 01:19:57:12 Erin Croyle Set boundaries and expectations. If you're anything like me, I can't necessarily turn my text and ringer off because I need to be prepared if someone in my life needs me, like my mom or my son or something like that. So I can ask others to please not call or text in these hours. And when I'm awake and I can see my phone, I can turn the volume off, focus on what I'm doing and check my phone when I want to. 01:19:57:16 - 01:20:23:06 Erin Croyle Instead of having my phone check me and buzz me or vibrate me or whatever and examine your own recreational screen use and cut it down. A lot of us get reports on our phones that tell us how much time we're spending. Really look at those and say, Do I need to do that? I was shocked that I was spending 5 hours a day on my phone and then I saw that most of it was music from playing music in the car or wherever. 01:20:23:08 - 01:20:47:02 Erin Croyle So I didn't feel so bad. But really think about how much time you're giving to this endless void of social media that is completely pointless. Do you need to be on there or can you actually spend time with the people in your life and reconnect or make a phone call and call a friend? We need to start setting firm boundaries for our children. 01:20:47:04 - 01:21:26:20 Erin Croyle Their brains are not developed enough to understand what these devices are doing to them. Their phone based life is taking them out of people based living. Think about it. Do our children really need their own tablets? Do they really need their own smartphone? I remember when again, my kids have three kids in diapers. It was so hard and I would occasionally go to a restaurant after like my son's doctor's appointments and take them and just to get through it, I would give one of them a phone and they would share it. 01:21:26:20 - 01:21:47:13 Erin Croyle And then somehow you get a new phone and you have a phone that is just kind of there. And so I was like, All right, well, I'll try this and let one kid have one phone and two kids share a phone and they started fighting and crying about it at the restaurant. And I realized this is ridiculous. It's not sustainable. 01:21:47:15 - 01:22:16:03 Erin Croyle It's not okay. They're not learning how to interact at a restaurant. They're not learning how to behave properly. And I took it all the...
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Dual Perspectives: Navigating Special Education as a Teacher and a Parent
06/30/2024
Dual Perspectives: Navigating Special Education as a Teacher and a Parent
In this epiosde we get an insider's perspective of the world of special education from someone who sees it from both sides. Eleanor Janek is a dedicated special education teacher and a mother two two children with disabilties. Her insight is both eye opening and incredibly useful for virtually anyone who is a teacher or a parent. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: resource that Eleanor talked about. 01:00:07:14 - 01:00:37:23 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the unique journey where sent on when a loved one has a disability. I started down this path in 2010 when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:00:38:00 - 01:01:05:17 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is, but we don't shy away from the tough stuff. For many of us, advocating for and navigating special education services is one of those hard things. But we often don't realize that it's no walk in the park for educators either. 01:01:05:19 - 01:01:21:16 Erin Croyle That's why I made it my mission to talk to a special education teacher who is also a parent whose children also have disabilities. Which brings me to today's guest, Eleanor Janek. 01:01:21:18 - 01:01:25:04 Erin Croyle Eleanor, thank you so much for joining me. 01:01:25:06 - 01:01:26:20 Eleanor Janek Thank you. 01:01:26:22 - 01:01:33:12 Erin Croyle Eleanor, can we start by you giving us a little bit of a background about who you are and what you do? 01:01:33:14 - 01:02:07:17 Eleanor Janek So I am a special education teacher in Virginia. This is my 16th year as a teacher, but my 25th year in education and I am 44 and I've been married for almost 19 years with two children. One is 16. She is deaf with cochlear implants and she has autism. And then I also have a seven year old who has ADHD and currently undergoing evaluations for autism as well. 01:02:07:19 - 01:02:15:19 Erin Croyle so you have quite the perspective. I'm curious what drew you to education and special education. 01:02:15:21 - 01:02:46:04 Eleanor Janek As a middle school student? I worked with students who had disabilities because mainly they were isolated from the general education students. So then I started working as an instructional assistant. When I was fresh out of high school. I was 19 when I started. So I was still, you know, pretty much a kid myself as an instructional assistant. But I had a career or established, you know, working with the school system, they say, is pretty much the best thing that you can do. 01:02:46:06 - 01:03:10:14 Eleanor Janek You get paid. You have your summers off. It's great, right? But then I quickly realized that without a college education, you did not get much respect from the educational community. So I pursued my degree in Psychology first and then my master's in education. So I've been doing I've been teaching special education for the last six years at a middle school. 01:03:10:16 - 01:03:38:05 Erin Croyle Eleanor, I'm really curious. You know, you mentioned to me before we were recording, you and I are very similar ages, and I think we have very similar experiences growing up in schools where even though special education existed, we never saw our peers who were disabled. We never really saw special education teachers. What was your experience growing up? Can you tell me what a typical classroom look like and then tell me what classes look like today? 01:03:38:10 - 01:04:09:20 Eleanor Janek Exactly like you just said. You know, our students with disabilities, the ones who had the more physical disabilities where you could kind of tell that they were different. One room all day long. Probably a special education teacher or an instructional assistant within that room with them. In my experience, as far as high school or middle school, you never saw students with disabilities or visible disabilities as they're now known in the mainstream setting. 01:04:09:22 - 01:04:35:11 Eleanor Janek I had a teacher who was my homeroom teacher who was a special education teacher. But other than seeing him in my home base, I never saw him out in the school anywhere. Whereas today, you know, when we introduce ourselves at the beginning of the year, we always introduce ourselves as teachers, myself and my general education partner. And we always tell the kids, you know, you're lucky. 01:04:35:11 - 01:05:00:11 Eleanor Janek You get two teachers in here, you're the bonus teacher represented in that way. But at the same time, now you see two teachers in a lot of classrooms where 20 years ago or almost 30 years ago when I was in school, you didn't see that it was just one teacher in the classroom. And our students with disabilities were pulled out into what they call a resource classroom. 01:05:00:13 - 01:05:16:14 Erin Croyle I mean, we still see a lot of students pulled out into self-contained and resource classroom today, but it's very different. So are you in a room then with co teaching and are you you're working together with the general ed teacher to adapt and modify curriculum then? 01:05:16:16 - 01:05:59:19 Eleanor Janek I am so I am primarily science. I do sixth, seventh and eighth grade science collaborative. More pull out happens at the elementary level and I'm at the middle school level, so I do work collaboratively with my teaching partners. For the past couple of years, I've been doing a schedule that's been kind of crazy and hectic as far as my teaching goes because I've been split into 45 minute chunks during the block and may only have one two at most three classes where I'm actually in the classroom for a full 90 minutes so I can have as many as ten classes in a two day period. 01:05:59:21 - 01:06:31:05 Eleanor Janek That's mainly because of the teacher shortage in Virginia and all states that are going on right now. I would love to have my full 90 minute classes back so I can work with my teachers for a full 90 minutes and my students for a full 90 minutes instead of doing 45 minute chunks or even 20 minute chunks, because that's what I ended up doing in two of my classes this year was working in one class for 20 minutes, going to another class for 20 minutes, going back to another class for 20 minutes. 01:06:31:07 - 01:06:34:03 Eleanor Janek It can get really crazy sometimes. 01:06:34:05 - 01:06:36:14 Erin Croyle That sounds like a lot. 01:06:36:16 - 01:06:38:07 Eleanor Janek And yes. 01:06:38:09 - 01:07:08:02 Erin Croyle Yeah. My understanding is to one of the one of the hurdles that special education teachers experience is a lack of planning time to really meaningfully do the work they need to accommodate these students. I'm curious what you see in the classroom and also how that shifted as we're in this teacher shortage. Was it easier before and now you're just hoping it will get easier again. 01:07:08:04 - 01:07:10:09 Erin Croyle Tell me a little bit about that experience. 01:07:10:11 - 01:07:40:18 Eleanor Janek So pre-COVID, all of my classes were 90 minute blocks. I had six classes and they were all 90 minutes. Since I am in the middle school setting, I do have the luxury of having a 90 minute planning block each day. Now, that being said, I also have six different teachers. Let me count. One, two, three, four, seven different teachers that I work with. 01:07:40:20 - 01:08:13:08 Eleanor Janek And it's only by luck of the draw that I might have a planning period in common with one of those teachers, maybe two. So a common planning period with them is not the norm for special education teacher, especially in science or middle school science, because sixth and seventh grade science do not have vessels. Eighth grade science has the flow that encompasses seventh and eighth grade science. 01:08:13:10 - 01:08:45:07 Eleanor Janek So the priority is not with science, unfortunately. It's kind of thing of the in my opinion and some of my general education teachers share this opinion that we're kind of the catch all sciences, the content that students with more significant disabilities can be placed in because it's supposed to be hands on learning and labs all the time in a place where they can socialize. 01:08:45:07 - 01:09:16:04 Eleanor Janek And that's a misconception with science. Like I said, pre-COVID, I got those 90 minute blocks during COVID. The county that I'm in was the only county in Virginia to be open full time. We didn't have any remote learning going on. We had an online school, but we were open full time. Kids were in the classroom. But our middle school students were in one classroom all day long, and they were rotated together. 01:09:16:06 - 01:09:42:06 Eleanor Janek They had the same electives together. They had the same lunch in the classroom with me. I was with them wherever every subject, all day long. I felt like I was the room mama of that calculus. After things got back to normal. Our middle school students weren't in the same classroom all day long, but they traveled with the same co-op of students. 01:09:42:08 - 01:10:21:14 Eleanor Janek Unless they had, like, a higher level math or language arts or they had a different elective. But for their core content classes, for the most part, they traveled with the same group to keep them kind of all together and when contact tracing was a big thing. But as COVID came in, I think teachers, especially during that shutdown, were seen as angels saving grace put on a pedestal because parents really got to see right what teachers put up with on a daily basis because they had their students at home. 01:10:21:16 - 01:10:47:02 Eleanor Janek During that shutdown from March till the end of the year. But then when different counties started talking about reopen and then it was kind of like the movement of teachers, let's make sure that teachers are safe before we reopen and then teachers were condemned for having an opinion. And that's when a lot of teachers started leaving the profession. 01:10:47:04 - 01:11:01:05 Eleanor Janek And it was harder before then or it was as hard before then. But it's gotten harder since COVID as far as there are so many teachers that have left the profession, even the ones that have 20 plus years. 01:11:01:07 - 01:11:27:07 Erin Croyle Yeah, I don't remember when that started happening, and I'm glad you brought that up because I think we've forgotten how our teachers, our medical community was lifted up and celebrated and then yeah, just dropped when they said, Wait, wait, wait. We want to be safe. Take it slow. But the rest of the world was ready to move on and we just kind of. 01:11:27:09 - 01:11:29:20 Eleanor Janek We dumped the kids back in the school. 01:11:29:22 - 01:11:30:13 Erin Croyle Right. 01:11:30:15 - 01:11:56:24 Eleanor Janek Right. And because teachers started sharing their opinions, and especially on social media platforms, Facebook, TikTok, everywhere, where we were trying to say, let's make sure that we're safe before we bring our kids back to school again. Because teachers started sending an opinion, parents started berating and condemning us. 01:11:57:01 - 01:12:07:11 Erin Croyle And if you're already burnt out and you already needed more planning time and more support before and here you are in this trial situation. Yeah. 01:12:07:13 - 01:12:50:01 Eleanor Janek And a fourth of the teaching population is special ed teachers. And when your special ed teacher population leave a student having an IEP is a federally mandated thing, whatever that IEP says the school system has to deliver that. There's no getting around it. And because you have your students with IEPs and you're trying to figure out how are you going to provide the appropriate service for them, I don't know if it was a state directive, a federal directive, or if it was just a local directive where we really had to deliver services based off the number of minutes in a student's right up. 01:12:50:03 - 01:13:04:12 Eleanor Janek And it was if this student only gets 20 minutes, I'm in a class for only 20 minutes. If this group of students has a 30 minute service, I'm only in that class for 30 minutes. 01:13:04:14 - 01:13:24:18 Erin Croyle Wow. Yeah. Yeah. You know, being on the other side of that IEP, you forget as a parent, as a caregiver, that you want all the minutes your kid can get, especially if there's issues with speech, reading, whatever. But the teachers only have so many minutes that they can give. 01:13:24:24 - 01:13:54:19 Eleanor Janek Right. And, you know, there's it's not just your individual student in that class. Especially students with IEPs. There could be anywhere from 5 to 10 to possibly 15 in a classroom at the middle school level. And you're expecting two teachers, the special education teacher, to deliver that amount of support and to also deliver those accommodations that are written into that IEP. 01:13:54:21 - 01:14:03:08 Erin Croyle Yeah, and a lot and that's a lot that falls on you as a special education teacher. I imagine. 01:14:03:10 - 01:14:44:14 Eleanor Janek Yes, especially with the amount of accommodations that students are coming up with from the elementary level that are more, I would say, elementary driven accommodations that parents want to continue to keep in place because they don't know what they what the expectation is at the middle school level. You know, when we get a new IEP for student that's come from fifth or sixth grade and we see some of the accommodations they come up with, we're like, holy moly, you know, this is something that was done in an elementary classroom because they were in an elementary classroom all day long. 01:14:44:16 - 01:15:00:18 Eleanor Janek But in the middle school class, we switch and some of those accommodations, like a desk check to make sure that they have appropriate supplies is not something that's feasible at the middle school level because they're moving classrooms and they're going to have a different desk in each classroom. 01:15:00:20 - 01:15:14:08 Erin Croyle Interesting. And that sounds like it's not just parents. It's the IEP team doing the middle school transition should be recognizing some of those things to pull them off now. 01:15:14:10 - 01:16:00:12 Eleanor Janek Well, usually we have someone, a senior teacher or a department head from the middle school that goes to the elementary school, but they may not always see that IEP ahead of time. They might see that IEP the day of it may not always be shared with them ahead of time. And when they go into the IEP meeting and there is the parent there, when they see how determined a parent is to keep a service or to keep specific accommodation, and then they hear the teacher side of it or the parent side of it, then that senior teacher or department head might be agreeable to that accommodation at that particular time. 01:16:00:12 - 01:16:30:16 Eleanor Janek At that particular IEP meeting, especially if it's early on in the fifth grade year ten IEP meeting happens in October or November, and it's not going to be revisited until October or November of the sixth grade year, then it may not be something that's on their radar or they might say, well, you know, we could see how that goes within the first quarter and then we can talk about it at the middle school as to whether or not that accommodation is appropriate for that student anymore. 01:16:30:18 - 01:16:52:05 Eleanor Janek But when we as case managers get an IEP and we see those level of accommodations that are more for an elementary school day versus a middle school day, we're trying to wrap our heads around how are we supposed to accommodate that student, if that makes sense? 01:16:52:07 - 01:17:14:09 Erin Croyle it makes total sense. And you have so many students and you also have students with five offers. And we're also seeing a mental health crisis in our students where even students without Final Fours and IEPs need more behavioral and emotional support. What is it like teaching right now for you and your colleagues? 01:17:14:11 - 01:17:43:18 Eleanor Janek Whac-A-Mole. Or putting out fires? There's more stopping and starting instruction because you're trying to answer questions from the student or answer you. Can they go to the bathroom or can they get water? Or can they go to the clinic? Or the student needs to get up and throw a piece of paper away or the student needs to get up and stand in the back of the room because they can't sit for so long. 01:17:43:20 - 01:18:17:05 Eleanor Janek You have your quote unquote, normal students that are in the mix in a collaborative classroom that could have, you know, so many students that have IEPs, so many students, like you said, that had survivors. But then as a special education teacher, I don't always know who has a father for I don't always know who might have a specific emotional need because my schedule is so different. 01:18:17:09 - 01:18:51:18 Eleanor Janek I may not be able to go to a team meeting of my sixth grade counterpart or my seventh grade counterpart where we get information on a specific need that a student might have. So I may not be privy to that information until my teaching partner tells me when they remember two weeks later. It can be extremely difficult to try to meet the needs of all of the different students in that classroom because the idea is that, there are two teachers in that classroom, so there's two sets of eyes. 01:18:51:20 - 01:19:17:14 Eleanor Janek Well, I've got one set of eyes trying to keep track of my students with disabilities while my other teacher has another set of eyes who is trying to direct instruction and trying to keep her eyes on the other half of the students who may not have disabilities or might have that five or four or might have those emotional difficulties that we have to deal with in the classroom. 01:19:17:16 - 01:19:40:03 Erin Croyle Or are just middle schoolers. I mean, middle school is the hardest three years of I think our public schools that age, you're going through so much. Your brains and bodies of these students are just in rapid development and the teachers are just I mean, even before the mental health crisis, it was triage. I remember middle school being miserable. 01:19:40:03 - 01:19:41:22 Erin Croyle I don't know about you, but. 01:19:41:24 - 01:20:07:15 Eleanor Janek There was a little difficulty. The timid little sixth graders who were, you know, still more like fifth graders. And they're coming up and they're still kind of afraid to show themselves because they don't want to get teased. They're also coming from an elementary school, one elementary school, and they're being pushed into a middle school that might serve three or four elementary schools. 01:20:07:17 - 01:20:29:17 Eleanor Janek You know, those feeder schools. They're shy, timid little sixth graders. And then towards their sixth grade year, they start telling those lines and then they get into seventh grade and things really start to blossom. And then when they get into eighth grade, they feel...
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Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective
05/31/2024
Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective
In this episode, host Erin Croyle and guest Dr. Kathryn Rooth talk about just how much, or how little, medical professionals know about treating patients with disabilities. Is there a topic you want to learn more about? Something you want to ask Dr. Rooth? Feel free to . The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT: 01:00:07:20 - 01:00:37:15 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. The creator and host of The Odyssey podcast explores the unique journey were sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:00:37:17 - 01:01:10:09 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is. While tackling the tough stuff to an unfortunate truth, many of us learn early on is how antiquated and ablest our health care systems can be when it comes to treating people with disabilities. Joining me today is Dr. Kathryn Rooth, board certified internist and pediatrician. 01:01:10:11 - 01:01:19:17 Erin Croyle She's also a strong advocate for people with disabilities and a mother of three. 01:01:19:19 - 01:01:25:06 Erin Croyle Kathryn, thank you so much for coming on. Can I call you Kathryn or should I call you Dr. Rooth? 01:01:25:08 - 01:01:29:20 Dr. Kathryn Rooth ERIN Of course you can call me Kathryn. We're friends. Thank you for having me. 01:01:29:21 - 01:01:43:04 Erin Croyle Thanks. Yes. Full disclosure, we're friends. But Kathryn is also just an authority on this, so I'm very excited to finally have you here. I want to start with your own journey. What made you want to become a doctor? 01:01:43:06 - 01:02:06:24 Dr. Kathryn Rooth It's kind of cliche, but I wanted to help people. As I got older and was in college, I took an interest in children with developmental disabilities and really wanted to advocate for them. I had this job where I worked for an organization that tried to integrate kids into the Boys and Girls Club who had developmental disabilities. That was my job. 01:02:06:24 - 01:02:23:02 Dr. Kathryn Rooth I really had no training, didn't know what I was doing as a college student, but I really recognized the need then and I took an interest then it kind of took off from there, like wanting to pursue something in the health care field and always kind of leaning towards becoming a doctor. 01:02:23:04 - 01:02:37:12 Erin Croyle I'm curious because with my own personal experience, I feel like my whole life I was so segregated from people with disabilities. What do you think drew you to helping people with it? 01:02:37:14 - 01:03:05:01 Dr. Kathryn Rooth I honestly, Erin, I don't know. I, I took psychology classes and so I kind of started learning about a lot of the developmental disabilities. And I thought it was very interesting and how underserved and vulnerable they were and really took an interest in that patient population that they kind of drove me in that direction. I wasn't sure if I was going to be a special ed teacher or something, but I wanted to do something with this population. 01:03:05:01 - 01:03:19:00 Erin Croyle And for so many of us, our understanding of med school, residency and beyond comes from television like Gray's Anatomy. Or if you're as old as I am, E.R. and Scrubs. So what is the process actually like? 01:03:19:02 - 01:03:46:04 Dr. Kathryn Rooth I mean, it's a long process. And first you have to get into medical school, which is incredibly hard. It took me on more than one occasion to apply to get in. And then once you're in, you do two years of lecture where you're in the classroom or you're doing a lot of basic sciences and chemistry pathology, and then your last two years, you're doing mostly rotations in different hospitals and clinics settings to kind of figure out what type of doctor you want to be, right? 01:03:46:04 - 01:04:07:16 Dr. Kathryn Rooth Because in medical school you're just becoming a doctor. And then once you figure out what type of doctor, then you apply to a specific residency. So I wanted to be an internist and a pediatrician, which was a combined residency. So then you apply to residency programs and depending on what type of specialty determines how long that training is. 01:04:07:16 - 01:04:30:03 Dr. Kathryn Rooth So mine was four years. So four years of medical school. Then you go through this very stressful match where you rank, where you want to go, and all the residency programs rank who they want, and then you kind of have this cluster and you hopefully get, you know, where you want it to go in your in your list, which I was fortunate to go to Baystate Medical Center and Springfield, Massachusetts. 01:04:30:03 - 01:04:52:03 Dr. Kathryn Rooth And I had a wonderful experience. So and I was there for four years. But essentially back then it was 80 hour workweeks, often 30 hour shifts every fourth day on a lot of the inpatient rotations. So it was exhausting. You know, they talk about like a firehose coming at you of information and knowledge and learning. That's what it was. 01:04:52:03 - 01:04:59:13 Dr. Kathryn Rooth It was just it was a great experience. I would do it again. I could not do it again. At this age, though. 01:04:59:15 - 01:05:04:06 Erin Croyle I mean, you're in school for so long and there's so much to learn about the human body. 01:05:04:08 - 01:05:05:05 Dr. Kathryn Rooth Yeah. 01:05:05:07 - 01:05:11:19 Erin Croyle Where does disability fall into all of that? And more specifically, intellectual and developmental disabilities. 01:05:11:21 - 01:05:30:10 Dr. Kathryn Rooth Right. So in medical school, I'm trying to think back it was a long time ago when I went to med school between 2004 and 2008. I don't recall very much at all, if any. No desk to my medical school, but I just think there was a lot of other priorities. I don't even want to say priorities, but just wasn't on the radar. 01:05:30:11 - 01:05:56:19 Dr. Kathryn Rooth I'm not sure exactly in residency because I was a pediatrician, I did get a good exposure to developmental disabilities, and I also picked electives in genetics and developmental disability rotation. So I chose to have more exposure to that because I was interested in that in my internal medicine side, not not that much. 01:05:56:21 - 01:06:24:18 Erin Croyle So I find it really interesting that you say that because, for example, growing up I was like a really healthy kid. I didn't even do annual well visits. I just did like vaccines and physicals. And as a young adult, the only medication I took was birth control. So my knowledge of anything and navigating medical systems was minimal. And then all of a sudden, as a first time mom, I have a child with Down syndrome. 01:06:24:19 - 01:07:00:01 Erin Croyle And he also had medical complexities. And I was thrown into navigating our health care systems on hyperdrive. I remember reading early on trying to find the right pediatrician for my son. It could be difficult. And I did find that because if a doctor didn't really care to understand and the differences in anatomy that come with Trisomy 21 or I think of all my friends whose children have even more rare genetic conditions, if there was no special interest there, the medical care really did lack. 01:07:00:03 - 01:07:12:07 Erin Croyle So, you know, as someone who works in this field, what would you recommend for parents who are just starting out navigating this, trying to find the right pediatrician? 01:07:12:09 - 01:07:37:19 Dr. Kathryn Rooth My heart breaks for people who can't navigate the health care system, who are not in the medical world and don't know how to navigate it, because it is a huge, daunting undertaking. You have to be comfortable with your doctor, right? I mean, when I relocated to a different city, I wasn't completely comfortable with the pediatrician. Like, I have to be comfortable with them, you know, I have to make sure they're hearing me so I change. 01:07:37:19 - 01:08:01:15 Dr. Kathryn Rooth It is okay to change doctors if you feel like they're not hearing me. My comfort level is not what it should be. Then it's okay to find a different fit. Pediatricians understand this. They're not going to connect with every single patient. They want you to find a good fed. Some pediatricians are better at certain diagnoses and others and sometimes even on their website. 01:08:01:17 - 01:08:17:13 Dr. Kathryn Rooth I'll look even now as a health care professional trying to find a specialist. What is their specific interest and is it ADHD? Is it autism? You know, is it this? And they're like, okay, this is what they are more passionate about. I'm going to try to see if I can get in with that one. 01:08:17:15 - 01:08:41:07 Erin Croyle Yeah, and I love that you brought up specialist, because I know this might sound ridiculous, but I just want to be honest about this because I'm sure I can't be the only one. I went to school. I am an educated person. I was worked internationally as a journalist, and then I was thrown into the medical system and trying to seek out specialists. 01:08:41:09 - 01:09:07:06 Erin Croyle You know, I didn't quite even understand their titles. They were so new to me. So, you know, I think pulmonology and endocrinologist and hematologist and I got endocrinology and oncology mixed up because it's just this entire new world of jargon. And as people who are not affiliated with, you know, the medical profession, a lot of times we're intimidated and we look to doctors knowing how much schooling they had. 01:09:07:08 - 01:09:29:01 Erin Croyle I've said this in the past where you look to doctors as if they're gods, and I find that you really, as a parent who has a kid with a disability, you really have to do the advocacy. You really have to speak up. You really have to know about your child's condition and you have to find specialists that will collaborate with you. 01:09:29:06 - 01:09:52:15 Erin Croyle Even now, my son is 14 and when I relocated, it took me four tries to find an EMT that would take my son's issues seriously and that I learned that the hard way early on when an audiologist said it's okay that he can't hear out of one ear, which is such an ablest thing to say because you would never say that to a non-disabled child. 01:09:52:17 - 01:10:10:11 Erin Croyle But there's still this bias that exists. What's been your experience in the field? And I know you can't throw colleagues under the bus or anything, but you know, what do you see in your practices? People's understanding of disability and potential dismissal of of issues just. 01:10:10:11 - 01:10:37:14 Dr. Kathryn Rooth Because of disability? So I'll just preface to say that we are not gods and we went to school for 8 to 12 years to learn this language. It's a whole different language, right? All of these allergies that most people don't know what a nephrologist is. And it is our job to translate the language right. We have to understand what is going on and then translate it. 01:10:37:16 - 01:11:01:12 Dr. Kathryn Rooth And I think, you know, our training often it's so heavy on learning the language that we failed somewhat and helping translate the language to the layperson, the non-medical person, a lot of the times to maybe they get defensive because they don't have the answers for you. Maybe this is out of their comfort zone and they don't know what to do. 01:11:01:18 - 01:11:20:05 Dr. Kathryn Rooth But I encourage parents to keep advocating if you know there's something wrong or you're not getting what you need to hear the answers and keep advocating. Like I always say, the parent knows the child best. If the parent comes in and says something's off, then I have to listen. I have to figure this out because they know them better than anybody else. 01:11:20:07 - 01:11:29:11 Dr. Kathryn Rooth Going to your other point of people with disabilities entering the health care system, I mean, we could have a thousand podcasts about this, Erin. You know, this. 01:11:29:13 - 01:11:32:17 Erin Croyle And we will. 01:11:32:19 - 01:11:58:17 Dr. Kathryn Rooth It's so hard. You know, this is something that I'm very passionate about because as a pediatrician, I became very comfortable with this subset of patients. But then they get older and they enter the adult world. And the adult world doesn't have a lot of experience with this subset of patients and their comfort level is very minimal. They just they don't have a lot of experience with this patient population. 01:11:58:17 - 01:12:30:01 Dr. Kathryn Rooth They don't really know what to do. The patient often can't communicate, they can't advocate, they can't tell them what is going on. They have to rely on the parents, which is not the norm in the adult world. And it's these complex congenital diseases that kids are surviving. They're surviving the same life expectancy as the general population. And it did not used to be like that. 01:12:30:03 - 01:13:00:24 Dr. Kathryn Rooth Genetic syndromes such as cystic fibrosis, they used to not live into adulthood. Right. And now they're living a much more longer, fulfilling life. And so a lot of the internal medicine docs never really trained having cystic fibrosis patients. And so now that they're in their patient panel or in their office, they don't have that training or that comfort level of knowing how to take care of them. 01:13:01:01 - 01:13:25:05 Erin Croyle It's interesting because I see that a lot with my friends who have older children where they speak about that transition out of the pediatric specialists to the adult specialists. And you're right, I mean, Down syndrome in the eighties, the life expectancy was, you know, 20 something. Now it's fifties and sixties and we're learning more and more. 01:13:25:07 - 01:13:50:17 Dr. Kathryn Rooth Absolutely. It's funny, I a lot of the pediatricians will say I'm just holding on to them and taking care of them for longer than I should because I know them best and they don't want to transition them into the adult world. Specialists do the same thing. I had a pediatric cardiologist, so who's taking care of adults because he's like, I'm I don't want to pass them off because I know how to take care of this congenital heart disease better than adult cardiology. 01:13:50:19 - 01:14:21:12 Erin Croyle Yeah. Kathryn, you know, you mentioned before being careful about what said and understanding things. There is so much outdated terminology that is still tossed around like m.r. I hear people say mental retardation or ma regularly, but also in defense of doctors. Actually, I think it's confusing if you're not in the inner circle of disability, the you know, person first versus disability pride language. 01:14:21:14 - 01:14:32:23 Erin Croyle Is there any professional development offered to doctors to keep up with what is current acceptable standards of our jargon in the disability world? 01:14:33:00 - 01:15:04:02 Dr. Kathryn Rooth I'm sure there is. I have not seen it or been a part of it. I mean, I know, Erin, I told you before we came on this, I said, you know, I right now predominantly work with the geriatric population. I don't really see any people with developmental disabilities anymore, unfortunately. So I haven't been out of it, of being aware of the correct terminology, because I feel like it does evolve and it has changed and EMDR is now ready. 01:15:04:03 - 01:15:28:06 Dr. Kathryn Rooth But is there something else that's more appropriate to say that I have not heard? So I said, Erin, please, I don't want to say anything that is insensitive or inappropriate because, you know, I just I'm afraid to use the incorrect terminology and be offensive. And so sometimes I don't say anything at all because I don't know what the right thing is to say. 01:15:28:08 - 01:15:55:02 Erin Croyle I love that we're bringing this up, though, because I've been with doctors who have said, Down syndrome kid, and I cringe because in the Down's syndrome community it is person first. But in the autism community, it's autistic children. And there's also, like I mentioned, disability pride. So it's like this dance where parents and advocates don't want to say anything and doctors are afraid of saying the wrong thing. 01:15:55:04 - 01:16:17:13 Erin Croyle So I how do we bridge that gap? Is there a way to have that conversation as a parent who's advocating for their child? Like, if I went in to see you and you said Down's syndrome patients are my favorite and I cringe, I mean, what would you want me to say? How can we have this be a better relationship to change together? 01:16:17:15 - 01:16:44:14 Dr. Kathryn Rooth Yeah, I mean, in my mind, that sounds okay to say that, but you're saying you cringe. So I want to know why is that making you cringe, saying Down's syndrome patients are my favorite and you can tell me. But I will also say you're probably exhausted, you're overwhelmed, right? You have a kid with special needs who needs a lot of specialty appointments, a lot of academic interventions. 01:16:44:20 - 01:17:02:23 Dr. Kathryn Rooth And you're at your wit's end. And this is probably the thousandth time that you've heard this comment and you snap and you are kind of like, are you kidding me? Like, really? You know, and I think that a lot of times the parents are at their wit's end when they get to our point. And it's frustration which we get. 01:17:03:00 - 01:17:18:04 Dr. Kathryn Rooth But maybe, you know, saying, I love that you love taking care of children with Down's syndrome and then explain why that makes you cringe, because I honestly have no idea why that would make you cringe. I love. 01:17:18:04 - 01:17:43:08 Erin Croyle This. This is so interesting. So I've mellowed out a little bit because I understand why go out and. No, no, no. So I've mellowed out because I've had to because there is so much in the world that is just so painful that I see happen to people with disabilities or set about. And I think I think that I pick my battles. 01:17:43:10 - 01:18:07:00 Erin Croyle That's kind of what it is. So if a doctor were to use MMR, like, for example, one time a therapist was talking about how hard it was years ago, loved this therapist and used the term m r a couple of times and I was just like, I wanted to correct them. But I also like, I just I'm so tired. 01:18:07:02 - 01:18:29:15 Erin Croyle Right, right. But now, at this point in the journey, I think that I kind of let Down's syndrome kid go or Down's syndrome patient. But if it's the R word I want and I focus on advocating for my child's health rather than all of the semantics, because I feel like sometimes we get so caught up in semantics that we can't see the forest for the trees. 01:18:29:21 - 01:18:54:07 Erin Croyle True. I mean, but I also feel like to say Down syndrome patients. So I think with that in why a lot of parents are touchy is because when we say person first, so many people see Down's syndrome and don't see the person. And so when you say Down's syndrome patients, it feels like you're saying, you know, they're all the same,...
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You Are Not Alone
04/30/2024
You Are Not Alone
Modern day parenting can be so isolating. It's an unfortunate reality many of us are struggling with. If you have a child or children with neurodiversity, medically complexities, or disabilities, it can feel downright lonely. But you are NEVER alone in this journey. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Need to talk to someone? The Center for Family Involvement has family navigators ready to listen! They provide 1:1 emotional and informational support as well as community service and systems navigational support. These are volunteers with lived experience who are trained to meet families where they are. Call or email our help line and someone will be in touch within 48 hours. If you live outside of Virginia, we can connect you with a sister network in your area. Helpline: 877.567.1122 Email: David Egan is an advocate, speaker, author, and extraordinary person who you can learn more about John Franklin "Frank" Stephens is a disability advocate, actor, and athlete who penned this following her referring to President Barack Obama as "the retard" in 2012. TRANSCRIPT: 01:00:07:17 - 01:00:37:00 Speaker 1 Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities. 01:00:37:02 - 01:01:05:13 Speaker 1 This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we've tackled the tough stuff, too. There's been a whole lot of hard in my life lately, so I'm changing it up. Rather than an interview, it's just going to be me. So without further ado, here I go. 01:01:05:15 - 01:01:32:23 Speaker 1 Parenting can be so isolating if you add disability, neurodiversity, medical complexities into the mix, it's often even more so. And it starts from the very beginning. When I was pregnant with my son. I remember so distinctly how excited my husband and I were when the doctor did the ultrasound and said, Everything's good. You have a perfectly healthy baby. 01:01:33:00 - 01:01:58:05 Speaker 1 And now I find the term perfectly healthy to be kind of triggering because what is healthy? My son is perfect. This was in 2010. So this was before we had all the blood tests that come now. The ultrasound didn't show anything of concern, and we went ahead and decided not to do the amniocentesis because there was a risk of miscarriage. 01:01:58:05 - 01:02:26:22 Speaker 1 And we just thought, okay, well, everything looks okay. There's nothing to worry about. We'll continue on. And I had this really lovely pregnancy and we were living in Malaysia at the time. So we traveled. We went to a friend's wedding in India and a babymoon in Bali and all of these wonderful, fun things. I just have the best memories and honestly, I'm really thankful for that because it was just this really great worry. 01:02:26:22 - 01:02:59:03 Speaker 1 Free pregnancy and all of a sudden at 39 weeks, his movement slowed and virtually stopped. It's interesting to me, though, I have this beautiful, beautiful pregnancy. I was reading all the baby books and all of the things and then poof, everything changed. My son stopped moving. We went into the doctor. We were told to have an emergency C-section. 01:02:59:05 - 01:03:27:01 Speaker 1 And because of all the things I read, it made me question all those things. And so I was thinking that I shouldn't have an emergency C-section. What if the doctor's wrong? What if the doctor just wants to have the weekend off? Because I think it was a Friday. It just set me up for so much more hurt than was necessary. 01:03:27:03 - 01:03:53:02 Speaker 1 This doctor was brilliant. She was able to calmly convince me to have this C-section and not to wait. She calmly stressed that waiting would be bad so that doctors saved my son's life. Had we waited, had I not gone in when he stopped moving and had we waited to try to push, Arlo probably would not be here today. 01:03:53:04 - 01:04:17:03 Speaker 1 When he was born, he was my first child, so I didn't realize until I had my other two children that the silence that we experienced after they got him out was actually eerie and scary. I was allowed to give Arlo a kiss on the head and they took him away and he went to the Nikko and I went to the recovery room. 01:04:17:05 - 01:04:42:21 Speaker 1 When I came to and was up in our room, room. The pediatrician came in and told my husband and I that he suspected that Arlo had Down syndrome. And this came as a total shock to us, just absolutely floored and honestly devastated. 01:04:42:23 - 01:05:10:16 Speaker 2 Which is a terrible feeling to have when you just had your first child. Arlo Having Down syndrome is one of the best things that ever happened to me. He has taught me more about life and myself and this world than I could ever imagine. But the fact is he is the first person I met in this entire world with Down syndrome. 01:05:10:18 - 01:05:49:02 Speaker 2 I was 33 at the time. I mean, that alone just felt lonely to have no understanding of what my child's life would be. And then sitting there while he was basically in a bubble with oxygen, reading about Down syndrome and learning about life expectancy and all of these things that our world considers wrong because we are so scared to say the word disability or celebrate the word disability or understand or accept or embrace it. 01:05:49:04 - 01:05:52:21 Speaker 2 And it's really frustrating to me in retrospect because. 01:05:52:23 - 01:06:39:03 Speaker 1 One in four Americans have a disability that impact their everyday life. Down syndrome is fairly common. We know more about it than a lot of other conditions, but yet we know so little about it. I know now because I've been in this for 14 years and I've been able to really think about things. Part of the reason it felt so devastating and so shocking is because we still segregate our world between people who are disabled and not disabled, especially when it comes to intellectual and developmental disabilities. 01:06:39:03 - 01:06:55:24 Speaker 1 Because anyone who speaks in an untraditional way and communicate differently and looks or behaves in a way that doesn't conform to what we think are societal norms is looked at differently. 01:06:56:01 - 01:07:24:16 Speaker 1 My son has Down syndrome. It's common, but he still gets stared at in stores and it stinks. I think about how this world is and how people look at my son and friends of his and friends of mine who have other disability sees and how my peers, adults my age, older and younger as well. They're in similar positions that I was in when Arlo was born. 01:07:24:18 - 01:07:56:19 Speaker 1 They've probably not had an actual meaningful interaction with anyone who's disabled. I'm certainly not anyone with an intellectual or developmental disability, and I think that's a challenge that we as parents of kids who have disabilities don't talk about enough. Not only are we learning to navigate the world with our child and for our child because we are our child's voice for the foreseeable future. 01:07:56:21 - 01:08:06:12 Speaker 1 And as much as I help my son advocate for himself, even at the age of 13, he doesn't communicate in a traditional way. He doesn't. 01:08:06:15 - 01:08:08:02 Speaker 2 Really. 01:08:08:04 - 01:08:44:16 Speaker 1 Care about a lot of the things that I'm fighting for for him. I don't know if he understands them or not. I am trying to help him find his voice. Until then, I am his voice and there is a lot of learning that we have to do as parents to be able to do that. Disability is such a separate condition that if you're someone who has never been a part of the disability community and you have a child with a disability, you have a tremendous learning curve. 01:08:44:18 - 01:09:02:18 Speaker 1 In addition to being that person's parent and learning how to be a parent. You also have to learn about the medical components that go into caring for your child, the community based living components that go with taking care of your child, which. 01:09:02:20 - 01:09:04:11 Speaker 2 My gosh. 01:09:04:13 - 01:09:58:13 Speaker 1 Are so hard to figure out. And they vary from state to state. There's early intervention, which is fabulous, but it varies from state to state, and you've got to figure that out. And then the schools. I still remember being at the farmer's market with Arlo when he was a wee one and a mother of an adult child with a disability, just coming to me and almost tearfully telling me how hard it was helping her child navigate the schools and said to me how she still feels the bruises from that time in her life because the schools just don't understand or don't have the funds or don't have the want to support students with disabilities. 01:09:58:15 - 01:10:53:24 Speaker 1 It's hard. So we have to learn all this new jargon and learn all of this medical staff and understand the finances of supporting someone for their entire life. And my gosh, the mounds of paperwork that you have to do. I have three kids. The paperwork for Arlo, because of his disability is three times as much as my other two children and then while we're doing all of this work to help our child and advocate for our child and help our child learn to advocate for themselves, we're also having to overcome and understand our own herbalism these things that are ingrained in us that we don't even realize are there because it's this societal weight. 01:10:54:01 - 01:11:16:23 Speaker 1 There's a societal weight that is put on the shoulders of people with disabilities, and it's ridiculous. And we don't call it out enough. And as parents, I'm not even sure we understand how significant this is until our children get older or unless we speak to adults with disabilities. 01:11:17:00 - 01:11:17:20 Speaker 2 Who. 01:11:17:22 - 01:11:51:00 Speaker 1 Can truly speak about their own experiences. If we really stop and think about it, our systems are set up to fix disability, not to accept it. Our mindset as a society, I mean not just in the United States but around the world, is that disability is something that we should overcome instead of accept and live with. We constantly see in the media how overcoming disability is celebrated. 01:11:51:02 - 01:12:18:16 Speaker 1 Oftentimes it's a physical disability that you see someone who maybe is an amputee and then they get prosthetics and they start running and they win races and they're back again. And that's great. But you know what? There are a lot of disabilities that are just here, and it's part of our existence. There are people who use wheelchairs who they don't care that they use a wheelchair. 01:12:18:18 - 01:12:38:22 Speaker 1 It's part of their life. They wouldn't change it. It's just who they are. And the thing that they would rather have change is the accessibility so they can go wherever they want, when they need to. And this mindset, I mean, it starts from the beginning. And as parents, it takes a while to come out of it. And some parents, I'm not sure ever do. 01:12:38:22 - 01:13:08:18 Speaker 1 But even in early intervention, a lot of what is taught is trying to fix a child or get the child to conform to societal norms. I remember how important it was to me that Arlo could communicate clearly, and I remember seeing these amazing people with Down syndrome early on. A friend of mine, David Egan, amazing speaker, right? He wrote a book. 01:13:08:20 - 01:13:39:04 Speaker 1 Brilliant guy. Frank Stevens, also a man with Down syndrome who is brilliant and my gosh, I'll put in the show notes his rebuttal to Ann Colter about the R word just absolutely perfect. And as a parent, you have these hopes and dreams and wishes for your child based on your experience. And so when your child's born, you still have those. 01:13:39:06 - 01:14:07:02 Speaker 1 And early intervention comes in and you look and you see potential and you want your child to reach their full potential. But not all of our kids are going to be Frank Stevens or David Egan or whomever, and not all of them want to be. And I spent so much time and energy and money in addition to early intervention, we did extra speech therapy and it was great. 01:14:07:02 - 01:14:46:10 Speaker 1 And the speech therapist, my gosh, I still love this woman and I need to reach out to her and tell her this because I miss her. But Arlo's 13 now, and you know what? I don't think he'll ever speak clearly. But there's only so much those therapies and interventions can do. There's so much emphasis put on that full potential component that as parents, I feel like it takes a while and you're so busy doing that and you're just thrown into this cycle of helping, helping, helping, fixing, fixing, fixing. 01:14:46:12 - 01:15:10:17 Speaker 1 And you're so busy being a parent and an advocate and a caregiver that you can't see the forest for the trees. And if I could turn back time, I would just do early intervention and I'd cut all the other stuff out and I'd take him to the playground and I let his brother have his naps and not have those be interrupted. 01:15:10:19 - 01:15:39:17 Speaker 1 And I would save all the money we spent on co-pays and take them on a vacation. But I can't do that, and I know that now, so I don't kick myself, but I feel like I should share it so other parents don't feel that need to do, do, do all the time. It's okay to stop and just enjoy your child. 01:15:39:19 - 01:16:18:19 Speaker 1 But no one's there to tell us that because we're trying to do the best for them in our mindset in this country about achievement and progress and growth. And for potential is so great that we're pushing, pushing, pushing. And you have to wonder what for, because life is short and there are some curveballs that come our way and we need to stop and experience some joy to. 01:16:18:21 - 01:16:54:20 Speaker 1 So if there's something we can cut out, we should. And if we as parents are so stressed and so lonely, then we should find our own network of support because a happy parent equals a happy child. I find myself since Arlo was born, always gravitating toward other parents who have children with disabilities because they just get it. We naturally understand how difficult it is. 01:16:54:22 - 01:17:02:16 Speaker 1 I can look at some of my friends and I see their face and I see their eyes and I see how tired they are. 01:17:02:18 - 01:17:21:16 Speaker 2 And I understand it because with significant disabilities, literally every day you're going up against something. It could be something as seemingly innocuous as there are no accessible spaces. 01:17:21:18 - 01:17:30:09 Speaker 1 So how am I going to get my child with a wheelchair to such and such place? Or there's bikes in the sidewalk. 01:17:30:11 - 01:17:54:19 Speaker 2 Or there's a school dance and my child doesn't even want to go because he doesn't feel a part of the school. It causes more anxiety to try to go to fun social things that you're supposed to really look forward to because people don't understand or accept or celebrate disability. 01:17:54:20 - 01:18:33:14 Speaker 1 I remember early on when Arlo was 81, family elders had all sorts of advice and one of them said something that if I could turn back time I have so many rebuttals for. But back then I just was so shellshocked. I just kind of took everything in and thought they actually maybe knew what they were talking about. They told me how hard parenting is and how there's always disappointment and expectations that are sort of shattered. 01:18:33:16 - 01:18:44:05 Speaker 1 And I just got that up front all at once at the beginning instead of throughout. And what a. 01:18:44:05 - 01:18:47:01 Speaker 2 Load of. 01:18:47:03 - 01:18:56:11 Speaker 1 So many expletives. Okay. Like that is the most ridiculous thing I've ever heard because. 01:18:56:13 - 01:18:58:14 Speaker 2 One. 01:18:58:16 - 01:19:45:00 Speaker 1 There's no disappointment. I like the disappointment I feel has everything to do with the world that is inaccessible and nothing to do with my son, who is absolutely amazing. And I still have wishes and hopes and dreams for him. They're different, but they're there. Yeah, there are letdowns, and it's not for my son's lack of trying. It's often because of the obstacles set up from an in accessible world, from a world that doesn't accept people with disabilities. 01:19:45:02 - 01:20:18:06 Speaker 1 And as parents, we see this every day. And I think sometimes I see my peers with disabilities handle this so much better because they're just used to it. Whereas I get angry and upset because that's my child. It's just it's interesting. And those are conversations I feel like we need to have. But you know that mama bear feeling you have when you have a child who is just marginalized because of their chromosome. 01:20:18:06 - 01:20:19:08 Speaker 2 Ends or. 01:20:19:08 - 01:20:57:13 Speaker 1 Marginalized because of something that happened during birth or marginalized because of being neurodiverse or whatever. It's hard and it's relentless and it's exhausting. And the supports that we have are so hard to access between lack of funding and lack of staff and shortages and all of the things. So when I say you're not alone and I'm just talking into a microphone here, I. 01:20:57:13 - 01:20:58:14 Speaker 2 Just hope. 01:20:58:14 - 01:21:11:23 Speaker 1 That other parents, other caregivers out there hear this and know that we're here doing this together, doing this hard work, but we're not. 01:21:11:23 - 01:21:14:01 Speaker 2 Alone. 01:21:14:03 - 01:21:19:06 Speaker 1 We're all in our little bubbles, I guess. 01:21:19:08 - 01:21:23:08 Speaker 2 But we're not alone. 01:21:23:10 - 01:21:52:17 Speaker 1 Whenever I drive in my car to and from my son's appointments, because we have to go so far to see so many of these specialists. And it's always been a lot. Because even if you're not far from a specialist and you live in a bigger city, you're dealing with rush hour traffic. I mean, it's a lot of time taken to go to see doctors and therapists and whomever. 01:21:52:19 - 01:21:58:23 Speaker 1 And when I'm driving to and from these places, I think how many other parents are doing. 01:21:58:23 - 01:22:00:01 Speaker 2 This. 01:22:00:03 - 01:22:10:15 Speaker 1 With their children and probably just so tired and so tapped out. 01:22:10:17 - 01:22:51:04 Speaker 2 And feeling so alone. And I'm crying because that loneliness is more than just being in the car alone. I mean, you have your child there, so it's not really alone. I love my son. It's like I love hanging out with him. I wish that we weren't driving to a doctor. I wish that we were driving somewhere fun or all that time and money and energy was spent on a fun vacation or going to the movies. 01:22:51:06 - 01:23:09:09 Speaker 2 But that's the thing. We're not alone. We're not the only parents out there giving all we got just...
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Is Food Impacting Our Children More Than We Realize?
03/28/2024
Is Food Impacting Our Children More Than We Realize?
You are what you eat. That adage has been around forever for a reason. The foods we consume have changed drastically over the last few decades. Packaged, highly processed foods have flooded groceries, gas stations, schools, sporting events, and gatherings. It's practically impossible for a child or adult to go a day without having ultra-processed fare offered or simply sitting out to grab. We're still learning the full impact this has on our minds and bodies. So far the data and anecdotal evidence show it's not good. And to be clear, this has nothing to do with weight or appearance. We're talking overall health, growth, behavior, and how we feel. Shunta Summers sees this every day. She is the owner and president of She's dedicated her life's work to childhood education and nutrition because she understands how it impacts the lives and futures of young people. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT: 01:00:07:20 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I join the club, so to speak, in 2010, when my first child was born with Down's Syndrome. I left my career as a television journalist to immerse myself in parenting and understanding all things disability. 01:00:36:09 - 01:01:03:01 Erin Croyle This eventually led to my work at the Center for Family Involvement at VCU's Partnership for People with Disabilities as a communications specialist. The impact our diets have on our brains and bodies has always interested me. Becoming a parent of three very different children and learning what families and schools are dealing with when it comes to nutrition made me realize how complicated feeding children can be. 01:01:03:03 - 01:01:21:01 Erin Croyle Shunta Summers is going to break this down with me today. She's the owner and president of Foundations Learning Academy in Richmond, Virginia. Her child care center has a focus on early childhood education and nutrition. 01:01:21:03 - 01:01:44:22 Erin Croyle Shunta, thank you so much for joining me. You have such an interesting background. Born in Queens, graduate from high school in Chesterfield, majored in food science at North Carolina State University. You own and run a successful business. You do volunteer and advocacy work. You're a mother of four. I don't know how you do it all. Maybe we should start with a what I eat in a day quiz. 01:01:44:22 - 01:01:49:00 Erin Croyle Right to figure it out. Seriously, though, how do you do it all? 01:01:49:02 - 01:02:16:08 Shunta Summers Well, thank you so much, Erin, for having me today. I like all of you. We're in this together. We're growing and learning as we live. One of the things that I do is I try to plan as much as possible, but life happens, throws us curveballs. We can't always do what we planned to do in the day. So that's one of the reasons why one of the key things is prepping. 01:02:16:10 - 01:02:37:16 Shunta Summers I'm a big advocate for prepping at the center as well as at my home, because a lot of times I have to spend more time at the center. There are times that I don't get to provide the home cooked meals that I want to at home. So my alternative is to have meals prepped for my children so that they can grab and go. 01:02:37:17 - 01:03:00:15 Shunta Summers It makes a lot easier that they're getting older, but I still want to make sure that they're given the best choices as possible, knowing that there's so many alternatives at their fingertips that they could just order food to come to their homes whenever. So I do understand the importance of having food too readily available at home as well as at the center. 01:03:00:15 - 01:03:05:05 Shunta Summers And that's one of the things we try to educate our families about as well. 01:03:05:07 - 01:03:23:03 Erin Croyle And we're going to get into what you suggested prep later on. I'm writing it down on my notes to make sure we follow up with that question. But I want to give you a little bit more background to who you are. I'm really interested in what got you interested in food science and the connection to early childhood. 01:03:23:05 - 01:03:47:15 Shunta Summers One of the things was I was actually pre-med in school and then I did well, biochemistry, organic chemistry, loved it. But then once I had to start getting into working with humans and blood, I just didn't enjoy it. But then I also was fascinated me was how much food really does affect our bodies on a daily basis. So that's one of the reasons why I went into food science. 01:03:47:17 - 01:04:25:15 Shunta Summers And I absolutely loved it because what I learned at school, a lot of times people say, what you learn school you don't really use in the real world. But those basic concepts that I learned early on still provides the framework for what I do now, even with early childhood development, because I take it our holistic approach. We don't just look at the educational needs, we look at social, emotional, plus the nutritional needs of these children, because we're actually helping families too, because a lot of our families, they don't know how to properly feed their children. 01:04:25:15 - 01:04:53:17 Shunta Summers There's a lot of processed food, so introducing the child as early as possible to healthy, nutritious meals, you can really help their tastebuds very early on so that they don't want and need and crave the highly processed, salty, sugary, sweet foods that don't have high nutritional value that's going to last and help them grow and develop either. 01:04:53:19 - 01:05:25:05 Erin Croyle I am so glad that you brought that up because something that so many parents struggle with is how hard it is to feed our kiddos. Right? And by right I don't mean right versus wrong or good food versus bad food. This conversation is not going to be about more diet culture nonsense. It's about nourishment. And in my experience as a parent, as someone who is involved in schools and someone who's at sporting events, when I say it's hard to feed our children, right, I mean that they are inundated with heavily in ultra processed foods. 01:05:25:11 - 01:05:45:10 Erin Croyle Everywhere they go. There is these things called Scooby Snacks that are like on the label. They say they're good for kids and multigrain. But if you look at the actual packaging, I mean, it's all refined ingredients. Yes. Sugar. So much of the convenient stuff for toddlers and children and adults, for that matter. It's engineered for all of us to want more, right? 01:05:45:11 - 01:05:55:15 Erin Croyle Yes. And then you couple that with food aversions and all these other things, it's really hard to establish and maintain a palate for foods. So tell me more about your experience with this. 01:05:55:17 - 01:06:25:23 Shunta Summers So it is very challenging just from even the childcare perspective is because you want to do especially post-COVID, you want to have as many individually wrapped items as possible, but then that also means highly processed foods that are the lower nutritional value. So just last week I was at a food show. They know that we're vegetarian, So one of the things that they had was Kellogg's. 01:06:26:00 - 01:07:01:00 Shunta Summers They came in, we went to to them and I saw the stuff. But then I also know there's another smaller company that has a whole grain that uses oats versus the refined and the enriched flour. Those type of things where you have to be aware of. Yes, the packaging is not as pretty, but at the end of the day, when I can serve crisp rice over wheat cracker, that goes a lot longer, especially when I have so many children with allergies. 01:07:01:02 - 01:07:25:09 Shunta Summers So that's one of the things is just looking at it like with meal prepping, just like as far as our yogurt, we would just get the tubs of the nonfat yogurt and we would make our own parfaits. But that's a part of prepping. And then at home, that's what I would do too. So we would have the oats or a granola and then we'd have the yogurt and then we'd have the fresh fruit. 01:07:25:11 - 01:07:52:18 Shunta Summers So that's one of the things that we do with the children. We give them the exercise of putting their parfaits together. But on the go, you would have that ready to go. It is very challenging because it takes more time to cut up fruits and vegetables. It takes more time to look at all of the ingredients that goes into a product versus just looking at the big names that's on the front of the product. 01:07:52:21 - 01:07:55:11 Shunta Summers It is very, very challenging. 01:07:55:13 - 01:08:16:09 Erin Croyle Let's talk more about those challenges. Like you mentioned with yogurt. I know I ran into this when my kids were younger, where I would try to give them all that plain yogurt and then just put some fruit in it and maybe a little honey. And then they went out and were introduced to all the other stuff, and they don't like that anymore. 01:08:16:11 - 01:08:28:01 Erin Croyle So what are some ways that we can prep and help keep our our children's palates kind of geared towards less processed stuff? 01:08:28:03 - 01:08:54:01 Shunta Summers It's either be honest with you, it's so much easier birth to five and then once they get into school, you can't help. They're introduced with so many different things, like you said, with the yogurt, because the schools are going to do the prepackaged yogurts. And even when you pack your child's lunch, after a while, they're going to want some of the things that they see other kids have and they'll, Why do you have this? 01:08:54:01 - 01:09:26:01 Shunta Summers Why do you have that? So it's more so of just honestly educating them early on with the nutritional value of the the foods that they're putting in their body, what it what it does like with my pre-teens, I have a daughter she goes she likes going to altar. But one of the things I say is instead of having to do all the acne and all of those things, if you put good things in, you don't have to worry about all of these bad things coming out. 01:09:26:03 - 01:09:50:18 Shunta Summers So one of the things that I like, if you do drink a juice, make sure you followed up with that same amount of water. Little things you just instill in them. Yes. They may not always get it initially, but in the back of their mind they'll they'll go back to it. I had a parent tell me that she did all the right things and then their teenager exposed to very various different things. 01:09:50:18 - 01:10:13:08 Shunta Summers And then, you know, they followed what everyone else did. And then later on, 1819, that's when they realized, hey, what mom was was doing actually made me feel better. And it was a lot easier to do. So all we can do is we can educate, train them, show them the good, the bad and the ugly. But be realistic about it. 01:10:13:08 - 01:10:33:21 Shunta Summers Not just saying that, don't do this. We explain what what goes into them depending on their age so that they really do understand and so they can make that decision for themselves. I think that that makes it a lot better for them. And if they have more buy in, like I have a teenage son in high school. 01:10:34:01 - 01:10:58:21 Shunta Summers So he was like, Well, I want to make sure my chicken breasts. So I said, Well, here is the non salt seasoning. So he was like, okay. And then I can add something else. Yes. So you're not adding salted seasoning plus any condiments or anything that has that. So you compromise. And so as long as they can understand that, of course you can explain that to our five or seven year old. 01:10:58:23 - 01:11:08:17 Shunta Summers But the older the child is, you you try to prepare them for life. And so you you do it in phases and stages as they're developmentally ready. 01:11:08:19 - 01:11:28:12 Erin Croyle I really love that you mentioned that. And I'm going to share my own story because I have three kids and my oldest, as I mentioned, has Down syndrome. Early on, he needed to gain weight. We're like working with the doctors to make sure he got all the food he needed. It was my first kid, so I had time. 01:11:28:12 - 01:11:49:23 Erin Croyle It was extra egg yolks in the scrambled eggs, heavy whipping cream in the scrambled eggs. I would always add baby spinach to those eggs because you can't taste it. You may see green flecks. It's nothing. A little turmeric in there, extra olive oil here and there, avocados. But it was so interesting to me because my mother in law, for instance, was like, well, he has to gain weight. 01:11:49:23 - 01:12:19:22 Erin Croyle Why aren't you giving him ice cream? And I'm like, because he's like, not even one yet. And I don't want him to want cake and cookie and ice cream. I want him to want the things that are good for his body, that are good for his brain. And I so often see that with kids. So especially when you're thinking intellectual disabilities, developmental disabilities, if you can help them, just give them all the good stuff early and I really kept the processed stuff out of his food. 01:12:19:22 - 01:12:42:16 Erin Croyle Aversions came his favorite foods. Because of everything, I pushed our hummus and the only produce he'll eat is clementines. But I'll take it and I can make smoothies and mix in a bunch of vegetables. Right? I was able to build a really good foundation, and now I'm trying to introduce more foods back in, and I can get into that later with ideas for others who are struggling with that. 01:12:42:18 - 01:13:01:06 Erin Croyle But I just feel like it's so important. But yet we see everyone around us trying to push the and again, I don't want to do diet culture, but some of it is just junk food in it and he didn't like lollipops and candies. He only liked chocolate. And so I was riding that wave as long as I could. 01:13:01:06 - 01:13:07:21 Erin Croyle And it was interesting to me to see how many people tried to push like, you know, the gummy fruits. 01:13:07:23 - 01:13:09:21 Shunta Summers gosh, yes. But why do. 01:13:09:21 - 01:13:11:20 Erin Croyle People give kids gummy fruits? 01:13:11:22 - 01:13:40:22 Shunta Summers I have no idea. No idea. I see. And that's one of the things like something like the gummies. My daughter has severe food allergies, so I had to dig into what makes those gummies. Even the gummy vitamins that they push, it has carnauba wax in it and that is a derivative of a tree nut. So that's one of the reasons why I don't do the gummies. 01:13:40:24 - 01:14:02:13 Shunta Summers When she was younger and I had more control, that was easier for me. But now that she's older, I want her to understand what that does to her. So when she starts breaking out, when she does not feel so good, it's because of that. So she's making that choice. Even though I see everyone eating those, I don't want to because of the way it makes me feel. 01:14:02:15 - 01:14:27:06 Shunta Summers So even with children that as they get older, they start having the food aversions, the core and the foundation that you laid. It is inherently in them and eventually it'll come out. But the one thing is to give them that time and space to try new things. But yes, Clementine's I'm all for it, you know, let's go with that. 01:14:27:06 - 01:14:56:10 Shunta Summers And like you said, the smoothies, you're doing that. But it is very, very hard nowadays when even I mean, love it grandparents or other family members that don't share your same philosophy when they come in and they're like, I want to give them a treat. Okay, let's bake together, not let's take them out for ice cream and all these other things that just is not good for them. 01:14:56:12 - 01:15:21:22 Shunta Summers That's one of the things that I tried to do, even in my own family, is just educate them on the importance of eating more wholesome foods because you you actually feel better and it stays on you a lot longer than those highly processed food where you had those sugar spikes and then you had those crashes and you just do not feel well at all. 01:15:21:24 - 01:15:46:09 Erin Croyle You see so many different kids and you have been doing this for over 20 years with your foundations Learning Academy, seeing different generations. I find it interesting how little we know about nutrition. I see it with my husband who thinks certain things are healthy and I'm like, no, no, no. They need some protein for breakfast or else they're going to be hungry in an hour sort of thing, right? 01:15:46:11 - 01:16:00:10 Erin Croyle How do we help with the mindset of parents and family members to understand and children? What we put in our bodies really impacts how we feel throughout the day. 01:16:00:12 - 01:16:26:14 Shunta Summers That is that the challenge that I have right now. Just last week we had a child just he comes in at 630 in the morning and he is very amped up, not even in kindergarten. And mom brings him in bags of chips. But I was like, Hey, what did you drink this morning? I had some soda and he had candy on the way there just to get him in there. 01:16:26:14 - 01:16:48:17 Shunta Summers But mind you, the child had been coming here for years, and I could tell that he just could not sit still. He couldn't do this at any other. And I had to call mom. I said, Mom, I know I maybe crossed a line, but can you help us out? We give him wholesome breakfast. Just please, if you can refrain from doing that. 01:16:48:17 - 01:17:17:20 Shunta Summers So that be the first thing that's on his stomach in the morning that can help us and also help him once he goes to school throughout the day because he has numerous behavior issues. But it's because he is like amped up on sugar constantly. That's where it's very challenging. I try to do workshops. Not as many parents participate, but I want to get back into doing our little daily tidbit of information that we send to parents. 01:17:17:22 - 01:17:41:11 Shunta Summers Some small thing that they can read not throw in statistics and everything at home. Just say, Hey, let's start the morning out with this. Let's try this, let's try that. Parents are a lot of times they're in a lot. There's rushing and it's just a lot, especially with the social emotional aspect that families are dealing with post COVID that goes hand in hand with nutrition. 01:17:41:13 - 01:18:14:13 Shunta Summers So many people have had to move. Family life has changed on a permanent basis. Sometimes you have families that have had to move in with grandparents and everything. So that dynamic changes to when you tell a parent, hey, meal prep, they may not have the space or the capacity to do it. So you try to take baby steps now when you're trying to food, one of the things we try to do is we'll take pictures of the child so we can share that with the parent so that they have more buy in because they see it's their child that's eating that food. 01:18:14:19 - 01:18:29:19 Shunta Summers And then we'll send home a recipe so that they could possibly try it as well. It is just very challenging. I will say as soon as you think you have it figured out, that's when the child goes and changes and you're like, my gosh. 01:18:29:21 - 01:18:31:08 Erin Croyle Every time, right? 01:18:31:08 -...
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Abuse Prevention and Cultivating Healthy Relationships
02/29/2024
Abuse Prevention and Cultivating Healthy Relationships
People with intellectual disabilities are s And that figure is likely a substantial underestimate, as it doesn't take into account repeated abuse or people living in institutions and group homes. There are steps we can take to prevent abuse and empower our loved ones to protect themselves and understand the difference between healthy and unhealthy relationships. We spoke with Molly Dellinger-Wray who leads LEAP - Leadership for Empowerment and Abuse Prevention - at VCU's Partnership for People with Disabilities and LEAP trainer Rose Sutton. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: As Rose mentioned, , too!! To register for the upcoming LEAP webinar on March 18th, For more about Healthy Relationships and Abuse Prevention, check out . LEAP is currently funded by the at Virginia’s . Partners in Policymaking is a leadership development and advocacy education program for people with disabilities and family members. This free program is offered across the country and online in some areas. in the late 1980s. The NPR report on abuse can be found The latest statistics on abuse are . The webpage has many adaptive visual aids to help people with IDD with various things. Including: 01:00:07:20 - 01:00:34:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. My new path started in 2010, when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities a few years after he was born. 01:00:34:12 - 01:00:47:05 Erin Croyle Using my journalism and television producer background as a communication specialist, I have the privilege of bringing much needed attention to issues facing our community. 01:00:47:07 - 01:01:20:02 Erin Croyle Unfortunately, rampant abuse is one of them. NPR's 2018 report The Sexual Assault Epidemic No one talks About brought this to light. Correspondent Joseph Shapiro's yearlong investigation found that people with intellectual disabilities are sexually assaulted at a rate seven times higher than people without disabilities. And that's likely an underestimate, as the report notes, because government surveys used to compile this data don't include people living in institutions or group homes. 01:01:20:04 - 01:01:51:19 Erin Croyle These statistics are integrating heartbreaking and terrifying, but there are steps we can take to prevent abuse. That's why I asked Molly Dellinger-Wray and Rose Sutton to join me. Molly leads a program at VCU called LEAP, which stands for Leadership for Empowerment and Abuse Prevention. LEAP provides training on healthy relationships and information for preventing abuse to adults and teens with intellectual and developmental disabilities. 01:01:51:21 - 01:02:18:10 Erin Croyle LEAP was founded in 2014 and is currently funded through the Individual and Family Support PrOgram at Virginia's Department of Behavioral Health and Developmental Services. Rose Sutton is a disability advocate, autism specialist, mother and a sleep trainer. Molly and Rose. Thank you for joining me. Molly, let's start with you telling us more about LEAP and your involvement with it. 01:02:18:11 - 01:02:48:20 Molly Dellinger-Wray The Partnership for People with Disabilities has been addressing the problem of abuse and neglect of children with disabilities since, I think, 2015. They used to have a grant, a multi-disciplinary grant about teaching multidisciplinary teams about child abuse. And I got involved with that project and felt like we were providing training for law enforcement for school social workers, for court personnel, and for lots of adults. 01:02:48:20 - 01:03:06:10 Molly Dellinger-Wray But we weren't. No one was actually providing training to the people who really needed it, and that's people with disabilities. And so LEAP is taught by a person with a disability and a coach trainer to teach people with disabilities about healthy relationships in Molly. 01:03:06:12 - 01:03:14:05 Erin Croyle What is your role? So what brought you to the partnership and what got you interested in this sort of work? 01:03:14:07 - 01:03:51:10 Molly Dellinger-Wray My role started in positive behavior support and one of the things that we know on positive behavior support is we're always looking. We're like trying to solve a puzzle of why people may be struggling and exhibiting behaviors that make people around them frustrated and angry. And one of the big reasons for that is past trauma. And when you look at the statistics and the data surrounding the numbers of people who have experienced trauma and abuse, that can often lead to some challenging behaviors. 01:03:51:10 - 01:04:14:14 Molly Dellinger-Wray And so that sort of pulled me down the rabbit hole of thinking, you know, we really want to help people with the quality of life. We need to think about their past trauma. And because my background is in special education, I always think, you know, I would much rather prevent abuse than have to help someone work through it on the other side. 01:04:14:16 - 01:04:38:05 Erin Croyle Rose You and I actually know each other from Partners in Policy making the Virginia Class of 2013, which is a long time ago now for folks not familiar Partners in Policy Making is a leadership development and advocacy education program for people with disabilities and family members. The three programs offered in most states and I can put more information about that and leap in the show notes. 01:04:38:07 - 01:04:44:03 Erin Croyle ROSE Can you tell us a little more about yourself and what led you to become a lead trainer? 01:04:44:05 - 01:05:02:19 Rose Sutton So thank you for having me. For myself, what brought me to leap was after we had good partners in policymaking, I had learned how to advocate since where military family. I wanted to know what the rules and regulations were for the state of Virginia. So I went through that class and that opened doors for me. On being able to speak freely about different things. 01:05:02:21 - 01:05:25:15 Rose Sutton So when I found the AR that they were looking for late trainers, I was really interested in that because of my four children, two of them have autism. And at one point they were moderate to severe. And so I wanted to know for myself as a mother how I can help teach them how to be safe with relationships of all different types. 01:05:25:17 - 01:05:45:04 Rose Sutton And when we think about relationships, a lot of times you hear them think about only like boyfriend or girlfriend, those type of things. But we don't talk about paid staff members or are those type of things. And people with disabilities sometimes do not know that they have the right to say no to something or may not even know how. 01:05:45:06 - 01:06:02:05 Rose Sutton So I think that leap was able to give them practice on what it looks like, as well as being able to practice it while we're doing trainings, And I think that that's been very powerful, not only in my own home with my own children when we first started doing it, but I was able to practice on them to see how it was working. 01:06:02:07 - 01:06:22:22 Rose Sutton But I think that it's just very empowering to be able to catch them before end, to end, to help them really some of that energy and to be able to have a safe space, to be able to practice what it means that to have a relationship is not just if you have a boyfriend or girlfriend. It's all relationships, whether you're friends, whether you're strangers, anybody within your in your space or in your world. 01:06:22:24 - 01:06:43:15 Molly Dellinger-Wray And I just want to ask Rose, when we first got started with the leap and we had like a three day training program to train the trainers where we taught people about the problem of abuse happening and about relationship maps and setting boundaries. What was that like for you as a mom? 01:06:43:17 - 01:07:07:24 Rose Sutton For myself, coming from a family of abuse, also, but from the mother's perspective, having children with disabilities, my children can sometimes be very affectionate and very trusting. We see a lot of different specialists, a lot of different types of people daily, and they needed to know what it look like for when someone's trying to help you or when someone's trying to hurt you. 01:07:08:01 - 01:07:37:10 Rose Sutton And so it was important for me, especially when we started, because VCU and and, and Virginia board with people with disabilities, you guys had a program already set up. So we were learning it, but we also were able to give feedback on what that was like and if there was any types of things that maybe we needed to add or not or take out, which is really beneficial for me as a mom, as we were learning it back then, I was able to practice that on my children and see how it affected them and what they were learning. 01:07:37:10 - 01:07:58:05 Rose Sutton And with them being on different ends of the spectrum, it was really empowering. And so for me it's more of a passion of teaching this course, and that's why I'm still here, to give other people a chance with disabilities of all levels of disabilities permission and what does it look like? And to practice it because we can hear a lot of things, but we don't always know what that means or some of those things. 01:07:58:05 - 01:08:21:13 Rose Sutton We don't know what they mean. So being able to practice what this looks like and what does it feel like inside of our bodies and what that that little niche in your stomach, that's like something's just not right. It gives a name to those things. And I think that people with disabilities really need to understand that. And this training is so great because it's a series of before and each day built on the day prior and then adds on to more. 01:08:21:15 - 01:08:51:23 Rose Sutton And so I really like this program and as a special ed teacher as well, I feel that it uses a lot of our senses. And so the more senses we use when we're learning something, the more that we're going to retain it. And this thing is so repetitive within the training that I think that. But at the time it's so neat to see them a session for which is the final session and to really know what they've learned and what they took from it, and to be able to give that feedback to you all who provide, you know, the training opportunities. 01:08:52:00 - 01:09:08:02 Rose Sutton I think it's great because we're able to still provide feedback on what they're learning or what no longer works. And over the years I think it's just been really great as a parent and as an advocate to be able to share that with with the community. That affects my family directly. 01:09:08:04 - 01:09:35:02 Molly Dellinger-Wray Right. So LEAP is four sessions. Each session is 90 minutes, and each session because it's designed for adults with intellectual disabilities. We know you can't just say something once and people are just going to remember it. And so each session builds upon the previous sessions, so they hear all of the information from session one, they hear in Session two, and then we bring out a little bit of new information and then session three. 01:09:35:06 - 01:09:57:24 Molly Dellinger-Wray We hear about session one, session two, and then a little bit of new information until session for the last session, which just each session brings in a little bit of new information, but reiterates the previous information. And also what Rose alluded to was we we developed this project with funding from the Virginia board for people with disability to whom I'll be forever grateful. 01:09:58:01 - 01:10:16:16 Molly Dellinger-Wray And then we had an opportunity to really do research. And so we really needed to firm up figure out how we're going to measure that. This little leap was actually helping people. We knew people liked it a lot, seemed to have fun. And it is fun. It's really fun to train it and it's fun to participate in, I think. 01:10:16:18 - 01:10:44:01 Molly Dellinger-Wray But what we learned through our research is that people actually learned a lot better able to distinguish what a healthy relationship is versus an unhealthy relationship. And as Rose said, they developed a vocabulary to help them explain why a relationship was unhealthy. People might have known prior to the training that, you know, this doesn't feel right, but they couldn't really put it into words. 01:10:44:03 - 01:11:06:13 Molly Dellinger-Wray And so we discovered a big increase in that. And we also discovered that in a lot of opportunities, it's very easy to blame the victim and that people really kind of were better able to say, you know, this is not their fault that this happened to them. It wasn't because they were bad or they deserved it. Somehow. So that was nice to see that increase in that kind of knowledge. 01:11:06:17 - 01:11:08:05 Molly Dellinger-Wray Also. 01:11:08:07 - 01:11:34:14 Erin Croyle Let's take it back to that point before the training, because a lot of the people listening might not be able to attend to training or might not live in Virginia. I remember distinctly as a parent of a kid that has Down syndrome and very limited, traditional expressive language. It was at the arc and it was a law enforcement official who said Abuse it. 01:11:34:17 - 01:11:58:16 Erin Croyle Think of it as it's not if it's going to happen, it's when it's going to happen. And I found that to be very scary. But also very real. And to me, what makes that such a reality is that we teach kids, especially kids with intellectual and developmental disabilities. It's such compliance to listen and they always have people in their lives showing them what to do. 01:11:58:18 - 01:12:24:13 Erin Croyle They're having people help them change themselves at a later ages. And so there's this level of privacy and intimacy that they have with people that most non-disabled kiddos don't experience, like they're potty trained and they're dressing themselves at a certain point and it's done and the boundaries are there. Whereas people with intellectual and developmental disabilities don't get to experience or learn those boundaries. 01:12:24:15 - 01:12:33:00 Erin Croyle So what are some things parents should know about early stages? What sort of boundaries we should be setting up? 01:12:33:02 - 01:12:56:00 Rose Sutton So for myself, I think that one thing that's very important is two of my kids are neurotypical and then I have two that have autism and different things. And for me it was a big gap. It's very different because when I raised the first two, it was all about culturally, your is here, go give them a hug or so-and-so's here and we bring them in your house. 01:12:56:00 - 01:13:15:12 Rose Sutton We'll give them a hug and say hi. And it was fine. They did it and and on command. And the younger, too, one of my my older autistic son. So he's kid number three. He wasn't feeling that. And at first, as a parent, I think it starts with us to understand that sometimes they don't like the touch. Some kids don't like to be touched. 01:13:15:12 - 01:13:37:12 Rose Sutton Some people, you know, they see someone coming in, especially if you don't see the person very often and you're making them go and hug the person because they're a family member. And a lot of times those are the abusers, right? So the thing is that as a parent, I feel that one thing that we could do is to for the parent to become educated so that we can educate our children. 01:13:37:14 - 01:13:57:06 Rose Sutton And what I mean by that is give them some space, learn about what your child is doing. Learn about that. We need to teach our children how to ask permission and how do we do that? We need to practice it, right? So like Molly mentioned earlier, the repetition of things. This training gives it repetition. And so me as a parent, I change my mindset also with the repetition. 01:13:57:08 - 01:14:15:20 Rose Sutton Okay, let me let me tell them. Let me talk to them what they're doing. Let me ask them if they're ready to put their shoes on. At first that that backfired because my kids have sensory issues and so they were taking all these clothes off. And so I'm trying to put them on and trying to get them to get these things and the stuff comes right off. 01:14:15:22 - 01:14:39:06 Rose Sutton And so I have to learn how to understand what was happening before I could help my children. And I think that now, knowing the information that I have now has helped to be able to understand that kids need to know boundaries, you know, they need to be able to make choices if your child is nonverbal. I think that, you know, with our neurotypical children, we said, okay, what outfit do you want to wear? 01:14:39:06 - 01:14:54:09 Rose Sutton What color do you want to wear? What kind of shoes do you want? You know, are you into something? And I think that taking that interest into our children and giving them permission to say no. Now, of course, as a mom of four, you know, we don't want our kids talking back and we want that respect, you know. 01:14:54:09 - 01:15:18:20 Rose Sutton So I get that. But when it comes to keeping our children safe, I think that they really need to know that there are some things that we have to do, even though we don't like to do them. And there are things that they still will have to do even though they don't want to do it. And then there are some times where you have a boundary that you can have your own safe space, that if the child wants to have some quiet time, that they're able to do that. 01:15:18:22 - 01:15:37:15 Rose Sutton And my son, now that he's he's about to be 21 next month, he still uses, you know, when he comes home on the weekends or something. He always says that this is his safe space, like kids from a safe space. And so as parents, we need to understand that, that we all need somewhere to go to feel safe. 01:15:37:17 - 01:16:03:14 Rose Sutton And within our home, there are spaces that are safe. And so as parents, we need to practice as kids are very young. I mean, from from the moment that they're born is to practice these things over and over again daily. Make it a part of your habit so that children know that they have the right to say no, or that something makes them feel comfortable or that what they may have told you is going to be taken seriously and at least be looked into. 01:16:03:16 - 01:16:26:15 Erin Croyle Rosen I really love that you said that because our kids are just kind of forced to do so much from a young age with early intervention and all of these other things and letting them have that space is so important and letting them know that they can say no and the hugging and saying no to hugs. I just want to reinforce that. 01:16:26:17 - 01:16:30:03 Erin Croyle So thank you, Molly. Please go ahead. 01:16:30:05 - 01:16:54:10 Molly Dellinger-Wray So when we can model, as Rose said, like it's important that our kids, what we teach in LEAP is that you get to decide who touches you. You get to decide who touches you. And we can model that as family members by saying, you know, hey, is it okay if I give you a hug now? And if they say no, as Rose said, like, you got to...
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Self-Care for Caregivers
01/30/2024
Self-Care for Caregivers
Self-care is something we all need to do. But for many of us, it's an elusive practice. Caregivers are working harder than ever. Which makes self-care more important than ever. Knowing how real this struggle is, I reached out to my friend and chiropractor Dr. Sarah Gardner. She gets it, and has so many practical, doable ideas for how we can make self-care happen! The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Dr. Sarah Gardner is co-founder and co-owner of All of the suggestions for movement, hydration, nutrition, apps, and much more are TRANSCRIPT: 01:00:07:23 - 01:00:35:00 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. My beautiful tangent came in 2010 when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities. A few years after he was born. 01:00:35:02 - 01:00:58:14 Erin Croyle Utilizing my journalism and television producer background as a communications specialist, it's amazing to be in a position where I can share stories unique to families like ours. One thing we talk about in our circles, but certainly don't do enough of is self-care. In fact, many caregivers I know scoff at the idea, myself included. It's not that we don't see its value. 01:00:58:18 - 01:01:21:22 Erin Croyle We just can't seem to make it happen. The lives of folks like us who are caring for a loved one for life are just different. The physical, mental and emotional demands are constant. Even if you manage to get some time away, there's no time off when someone you love needs constant support. This is why basic self-care is so critical for us. 01:01:21:24 - 01:01:46:11 Erin Croyle So how do we make it happen? To talk about this, I've invited my friend and my chiropractor, Dr. Sarah Gardner, on. She and I have been shooting the breeze for nearly two years. I found this amazing woman while recovering from hip surgery. Dr. Sarah gets it. She provides care with compassion and understanding in our many hours together, we've laughed at how ridiculous fad diets are. 01:01:46:13 - 01:02:00:22 Erin Croyle We commiserate on how impossible it is to juggle it all as parents. We praise the Almighty Oatmilk latte and we swear way too much. 01:02:00:24 - 01:02:25:02 Erin Croyle Sarah, thank you for spending some of your precious free time with me. For our listeners, I just want to paint a picture here. You're a mother of two, a business owner and ultra marathoner who's married to a CrossFit instructor. You're all about body positivity and health at any size. You stressed the importance of rest and having fun. The times when I've come in and admitted to you that I haven't done any of the things I should have. 01:02:25:03 - 01:02:49:07 Erin Croyle You validated how hard it is and encouraged me to just try to do one or two things. I always leave our appointments feeling heard, understood, and more hopeful. The business, by the way, is Flex Athlete Retreat, located in the Finger Lakes, Ithaca, New York, to be precise. It's this little haven where you have chiropractic services. Your colleagues do massage therapy and acupuncture. 01:02:49:09 - 01:02:56:01 Erin Croyle The space is this oasis with an amazing green velvet couch. Did I sum it up correctly? 01:02:56:03 - 01:03:16:16 Dr. Sarah Gardner Yeah, I think you summed it up. Thank you for the introduction. I think the first time I met Arlo was on the green couch, so some good memories there. And yeah, absolutely. The almighty book Milk Latte is what powers me through my day most of the time. Yeah, I'm pretty in it in terms of trying to figure out that work life balance. 01:03:16:17 - 01:03:26:11 Dr. Sarah Gardner My kids are two and seven and this business basically eats up my entire life. So I think I think you got it all correct there. 01:03:26:13 - 01:03:38:05 Erin Croyle I always love hearing people's origin stories. So what drew you to this kind of work? And then also, I'm really curious how your perspective has changed over the years, seeing so many different people. 01:03:38:07 - 01:03:59:06 Dr. Sarah Gardner Yeah, so I was a collegiate track and field athlete. I read Cross Country as well, and then I had an injury my freshman year and I was just really kind of underwhelmed with the way my Western med practitioners handled it. They weren't making contact with the problem area, vaguely listening, but kind of just throwing and NZ at it. 01:03:59:06 - 01:04:36:15 Dr. Sarah Gardner And I just felt like we could have managed that a lot better as a team. So I became kind of disenchanted with Western medicine. My undergraduate studies were an exercise physiology, which is just pretty broad spectrum. Learning a lot about human movement and biomechanics and just general health and biology. And we actually had a chiropractor come and speak to one of my survey classes and described what he did, and it was one of those moments for me where it was like, I can take everything I learned and have loved about biomechanics from being an athlete and really combine it with health care and caring for people and sort of contribute to the world 01:04:36:15 - 01:05:05:23 Dr. Sarah Gardner of sport for years after when I'm able to be a competitive athlete myself, I think my my goal when I started out was to just kind of create a space where people felt safe and listened to just because that hadn't been my experience, the whole other podcast. But yeah, and I think breaking down that doctor patient boundary and fostering trust and open communication with my patients with the goal of creating better outcomes and I do think that that's worked over the years. 01:05:06:03 - 01:05:36:08 Dr. Sarah Gardner And then as far as my perspectives changing, it really has I started off marketing specifically to athletes just because that's the world I came from. But I get to talk to, let's say 6 to 14 people a day, one on one for 30 to 60 minutes. And so my understanding of how we define athlete has definitely evolved over the past ten years, just because I've learned and appreciate so much differently the physical, emotional and mental demands of everybody's day to day. 01:05:36:09 - 01:05:55:23 Dr. Sarah Gardner So when my business is called athlete retreat, but really we treat everybody. I mean, we have people in the perimenopausal stage, we have people giving birth, we have teenagers, we have older adults, we have people recovering from surgery like yourself. So, yeah, it's we get to see a pretty diverse patient population. So yeah. 01:05:55:24 - 01:06:18:02 Erin Croyle Yeah, you must see caregivers that some of us have a lot of strain on our body just because we care for another person so intensely. It's really a lot of effort. In some ways, I know that some of my friends, some of the lifting that they do and some of the work that they do is is on par with heavy lifting and athletics. 01:06:18:02 - 01:06:19:03 Erin Croyle Yeah. 01:06:19:05 - 01:06:41:08 Dr. Sarah Gardner my God. I think that I mean, really what it boils down to it, everybody I see is a caregiver in some way. I have a ton of parents with children with or without disability. I have people caring for their parents, which I think is very challenging and a new chapter in a lot of their lives. So a lot of emotional stress which can manifest physically. 01:06:41:10 - 01:07:03:19 Dr. Sarah Gardner Everybody has these different things that they're caring for that are occupying a lot of space in their mind and body. Obviously, the most obvious definition of caregiver comes with caring for children, caring for an elderly relative, or caring for a child with disability. And those are where I see the most physical challenges versus the emotional strain that can also be very pervasive. 01:07:03:21 - 01:07:22:19 Erin Croyle One of the other things that I just love about you and why I just have to talk about this is that you keep it so real. You know, when I share with you in our sessions how hard it is to fit in strength training and you share your own struggles, like how you're doing this ten minute a day movement challenge. 01:07:22:21 - 01:07:44:22 Erin Croyle And then even though you're this accomplished athlete, it was hard at times. yeah. So when you're thinking about caregivers who are just up to their ears in it all the time, what can they do to build and maintain strength? Think about the beginners out there who might just be getting started. You have people who they get started and then things hit the fan. 01:07:44:22 - 01:07:46:18 Erin Croyle Kind of like me. 01:07:46:20 - 01:08:05:13 Dr. Sarah Gardner Sir. Well, I think the first thing we can do is take it just to define strength training. I think the form of exercise that everyone is the most familiar with is cardio. And that's where you're you're running, you're on the bike, you're getting your heart rate up, you're sweating, and you're really working your cardiovascular system and your circulatory system. 01:08:05:19 - 01:08:26:19 Dr. Sarah Gardner And that's incredibly important as well. And I don't think people struggle as much to identify ways that they can get cardio and. Right. You know, we all know we can take a walk. We all know we can we can bike whatever strength training is a little harder to pin down in strength. Training is any form of exercise where you use resistance to strengthen your muscles. 01:08:26:21 - 01:08:49:06 Dr. Sarah Gardner So I think that the go to for most people's minds is to picture like the big, neat, heavy type at across the gym, like my husband throwing around these huge weights. But that's really doesn't need to be our definition of strength training. I mean, we can look at ladies power, yoga, bodyweight exercise, resistance bands, all of these are different types of strengthening exercises. 01:08:49:08 - 01:09:17:01 Dr. Sarah Gardner And there's really no one size fits all for everyone that's going to be determined by your interests, your experience level, if you have any preexisting conditions or injuries, space, that it requires accessibility to a gym and no one is better than the others. So I think now that we have defined strength training, this is the tough one. We need to sort of reframe the paradigm in our mind when we're strength training for life instead of straight training for a sport, right? 01:09:17:03 - 01:09:42:01 Dr. Sarah Gardner So the trajectory when you're doing that looks a little bit different. And so you had mentioned the people who sort of get into it and then they fall out of it and they have to start from square one. And I think we have to start talking to ourselves that way and making it seem like the work we've done in the past doesn't count because it does count, you know, and just because you stepped away from an exercise for a while doesn't mean that you're starting from scratch. 01:09:42:01 - 01:10:04:07 Dr. Sarah Gardner You are still stronger than when you had done no exercise before. When we think about it like restarting and starting from scratch, that's a really real mental barrier for people. So if you're thinking about it like a continuation of something you already started, I don't think it seems so daunting. Do you know what I mean? So I like to think about it as a slow burn versus an explosion. 01:10:04:07 - 01:10:30:13 Dr. Sarah Gardner I would so much rather somebody choose a type of exercise that's maybe lower intensity, but they're able to do it consistently, maybe three times a week versus somebody going really hard with CrossFit. And I don't mean to speak ill of CrossFit, I love CrossFit, but something more high intensity like that where you exhaust yourself and you burn out and you can't recover and then you're taking weeks off at a time and then you are upset because you didn't meet your own expectations. 01:10:30:15 - 01:11:04:14 Dr. Sarah Gardner So I think having realistic expectations is almost as important as finding the type of exercise that works best for you. So that kind of leads me to my next point, which is I'll use myself as an example. I run ultramarathons and I ran one back in September with Koven, which was we're going to we're going to leave out the adjectives that I might use to describe that, but I think I'm dealing with a little bit of long-covid, and I just continued to try to push through it with the types of exercises I was asking myself to do. 01:11:04:14 - 01:11:20:19 Dr. Sarah Gardner I was still trying to run. I was still trying to weight train and it just wasn't working and I was exhausted. I couldn't recover and then I would take like a week off. I'd be upset with myself. And finally, I think during that little reset between the Christmas and New Year, I was like, You need to stop working against yourself. 01:11:20:19 - 01:11:38:13 Dr. Sarah Gardner Let's try something lower impact to work with my body instead of against it. So I've been doing a lot more Pilates, I'm doing a lot more yoga. And I think when you're coming from that place where you were an athlete or, you know, you used to be more active, it's really hard to be okay with lowering the intensity. 01:11:38:15 - 01:11:58:02 Dr. Sarah Gardner At the same time, I'm really appreciating the benefits of those exercises without exhausting myself. It wasn't realistic to keep asking myself to push through what I was experiencing. I am feeling a lot better now, but I definitely was able to get back into a better rhythm by pulling back a little bit and being realistic about my expectations. That's kind of my point. 01:11:58:02 - 01:12:21:21 Dr. Sarah Gardner There is obviously have goals, but don't set unrealistic expectations for the frequency or intensity of the type of exercise you're choosing. And also feel free to try new things. You're not committing to one form of exercise for the rest of your life. You're not getting less benefit because you're not doing the same thing all the time. In fact, I think you're probably benefiting more from switching it up and you're not going to stick with something you don't like. 01:12:22:01 - 01:12:29:17 Dr. Sarah Gardner If you're finding something isn't the right fit for you. Just know that having fun is the biggest key to consistency with exercise. 01:12:29:19 - 01:12:50:10 Erin Croyle Absolutely. I know it's funny. For me personally, running is this huge stress relief. Like, I just feel better, right? It's not the same when I walk. And so when I was injured so long, I felt it. But also at the same time, there are days you do that mantra where it's like, just go out for 10 minutes. Yeah, I don't. 01:12:50:10 - 01:13:04:06 Erin Croyle I went for a run yesterday and I was miserable. I hated every minute of it. How do we find that divide between something we find joyful and movement and also just making sure we move? 01:13:04:08 - 01:13:17:03 Dr. Sarah Gardner Yeah, I totally get that. And that's one thing that I always kind of tell myself that I also love running and I don't ever want to get to the point where I resent it and don't want to do it. And I think the biggest thing that I've learned is that sometimes I need to step away and I need to take a break. 01:13:17:03 - 01:13:33:04 Dr. Sarah Gardner And when I start to get that itch, like, I really want to go for a run, it's like, where, you know, we're back to a healthier place with it. Now I'm going to start running. If you start to force it, you're going to start to hate it. You don't want to get to that place. And I think that's where you want to explore different types of movement. 01:13:33:07 - 01:13:50:03 Dr. Sarah Gardner Yoga is one of those things that I can do even on those days where I'm like, I don't want to, I don't want to move. I'm tired. I can get down in cash cow and move my body, stretch my legs out in a downward facing dog. Other things you can incorporate or dance, just turn some music on and like be silly for 10 minutes with your kids. 01:13:50:03 - 01:14:13:14 Dr. Sarah Gardner Whatever. Just get your heart rate up, move your body, just make it enjoyable and again, you can switch it up as much as you need to. And then when you start to feel like you want to go back to the forms of exercise that you're most familiar with, that's a good time to transition back in. I also think that there, you know, whether it's spoken or not, coming from a running background, when you're not running, I feel shame and guilt when I'm not running. 01:14:13:14 - 01:14:29:13 Dr. Sarah Gardner And I also feel shame and guilt when I don't want to run. So trying to be aware that those feelings probably come up for some of us and then just, you know, talking ourselves through it like you've nothing to be guilty about. You have a crazy week right now. You will go back to it. You're just taking a day. 01:14:29:13 - 01:14:33:06 Dr. Sarah Gardner You're not quitting the sport. You're taking a day. You know. 01:14:33:08 - 01:14:58:15 Erin Croyle I do. And I'm so glad you said that because I know in my personal experience and then I know a lot of the caregivers in my life where you feel like you're in a rhythm and then your child has to have surgery or someone's sick, or if you're seeing specialist, it's 4 hours in a car one day. Not only are you not doing the exercise, you need to you don't want to drink the water because you're going to have to pee in the car. 01:14:58:17 - 01:15:17:20 Erin Croyle So it just falls apart. And then, you know, we all have our own stuff. For me personally, I have ADHD, which comes with this all or nothing mindset. And so I know some of the things that I do, like if my son's in the hospital or we have to travel for a thing, doctors, I'll take a kettlebell and make sure I keep doing workouts or a yoga mat. 01:15:17:24 - 01:15:33:10 Erin Croyle What are some ways for people who life just gets in the way so often and so often breaks up a routine? What are some simple recommendations you can give to just make sure you stick with some sort of movement? 01:15:33:12 - 01:15:57:13 Dr. Sarah Gardner I think the big thing is, well, it's actually people who end up traveling maybe just keep a set of weights in the car, keep a yoga mat in the car with you obviously don't want to keep plastic water bottles in a hot car, but have some sort of hydration ready to go so that when you do find yourself a pair of running shoes would be another good example, just so that when you do find yourself having a spare hour, which like how nice does that sound? 01:15:57:15 - 01:16:20:06 Dr. Sarah Gardner You're not kicking yourself for not having if you're always leaving. I have like a yoga mat at my office. So if I have a patient that cancels and I can squeeze in some yoga during the day and I don't have to disrupt my kids schedule later, awesome. I'll just try to squeeze it in when I can. But I think being prepared that you might have the opportunity, then when the opportunity arises, you're ready and you can you can actually use that time. 01:16:20:08 - 01:16:35:06 Erin Croyle Yeah. And it's funny because you mentioned shame and guilt and I learned a long time ago to let go of any shame or embarrassment. I feel for like doing a kettlebell workout or doing pushups in a waiting room....
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Best of 2023
12/20/2023
Best of 2023
This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it. This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Nickie Brandenburger is the More about More about the Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Lisa is also a part of the More about which Lisa mentioned. is the community organization that Lisa's children find benificial. , sharing her experiences as a parent, advocate, and person. Jen Reese is the and part of the features the lattest on the condition as well as the FDA recording that Jen participated in. one mother faced for her child's rare genetic condition. Parenting Special Needs feature on . Mauretta, Edgar, Lisa, and Patrice are all part of the TRANSCRIPT: 01:00:07:21 - 01:00:37:14 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities. 01:00:37:20 - 01:01:05:11 Erin Croyle He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families. 01:01:05:13 - 01:01:36:22 Erin Croyle People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things. 01:01:36:24 - 01:02:03:05 Erin Croyle The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023. 01:02:03:07 - 01:02:29:08 Erin Croyle We're celebrating the Center for Family involvement by sharing what exactly it is we do all day, why we do what we do, and why this work is so important. We start with the director of the CFI Family two Family Network, Nickie Brandenburger. Nickie, I'm so glad you're here. You came to CFI in 2015 after working as a service coordinator for nearly two decades. 01:02:29:10 - 01:02:38:19 Erin Croyle Can you tell us how you ended up with the Center for Family Involvement and how your professional and lived experiences have informed your work? 01:02:38:21 - 01:03:02:11 Nickie Brandenburger So I am a special education teacher by trade. I went to college with the intent to be a special ed teacher end of my college career. I was having a difficult time thinking about being within the four walls of a classroom. I was really fascinated and couldn't stop thinking about what was happening when that child got off the school bus. 01:03:02:11 - 01:03:33:22 Nickie Brandenburger At the end of the day and went home. What was their family life situation like? Who were those other people that were involved in their life? What happened after graduation? During the summer, when school sessions not end, I could not stop thinking about life outside of the school system for families that are raising children with disabilities. So I sort of shifted gears and got a job right out of school at 22, working with a community services board in Lynchburg, Virginia, providing what's called support coordination. 01:03:33:23 - 01:04:04:14 Nickie Brandenburger Back then, the phrase was case management, basically providing support to families of children and adults with developmental disabilities. So I did that for about 21 years. Was exposed to so many different types of families, different dynamics. And it was I love the work. About 11 years into the work, I became a mother and I had my son Thomas, in 2005 and perfectly normal pregnancy and delivery. 01:04:04:14 - 01:04:31:02 Nickie Brandenburger But around three months we started to notice, you know, something was a little off and he was having difficulty feeding and eating. He started to he stopped gaining weight. And I can remember taking him to the pediatrician because he was refusing to nurse and wasn't sleeping well. And something was off. And I remember looking over the physician shoulder to the notes that he was writing, and I saw the term failure to thrive. 01:04:31:02 - 01:04:51:17 Nickie Brandenburger And I thought, my gosh, what does this mean? So that kind of began us trying to find diagnosis and what exactly was happening with him and with Thomas. It was hard. You can't really label it with one thing. There were a lot of little things that kind of combined made things more difficult for him. Around 18 months, he really didn't have language. 01:04:51:19 - 01:05:16:15 Nickie Brandenburger He would go from 0 to 10 really quickly, biting, difficulty sleeping. So we were assessed by our local community Services Board in Henrico County, and he qualified for early intervention. They determined that he had some sensory processing issues and just a global greater than 25% delay. And that's sort of kind of how you begin to access early intervention services. 01:05:16:15 - 01:05:38:11 Nickie Brandenburger And at the time, you know, I was very overwhelmed and I can definitely remember being confused about what my next steps were. But I was pretty tough on myself in that I was suddenly accessing services from a service delivery system that I'd been a part of for 11 years. And suddenly I was wearing this parent hat and it was very uncomfortable for me. 01:05:38:12 - 01:06:00:20 Nickie Brandenburger You know, there were professionals that were trying to support us in our early intervention journey with our son that knew me, you know, as a professional. And suddenly I was a parent, too. And I didn't know how to handle that and process it at the time. So, you know, now that my son is 18, I can look back and acknowledge and say that there was definitely a little bit of shame and maybe some embarrassment. 01:06:00:20 - 01:06:23:11 Nickie Brandenburger And I didn't know how to articulate that. So that probably resulted in making it harder for myself than it really had to be, because I was trying to process exactly what was happening. And I think there's something to be said about parents if you're blissfully clueless about disabilities. But I knew enough to make it a little scary, so that was pretty tough for us. 01:06:23:11 - 01:06:48:16 Nickie Brandenburger So I had great support from friends and family. My husband and I benefit from having family members that are in the field. My husband is a public school educator. His sister is a special education teacher. My mother in law's occupational therapist, father in law is a physical therapist. My brother's wife is a special ed teacher and has a brother with Down's syndrome, you know. 01:06:48:18 - 01:07:05:10 Nickie Brandenburger So we had all of these family members and professionals kind of around us that knew. So there was a lot of support, but I was definitely hard on myself. So fast forward to, you know, 2015 and I was actually when I found out about the job at the Center for Family Involvement, I wasn't looking for a job change. 01:07:05:11 - 01:07:25:06 Nickie Brandenburger I was happy where I was, but I was trying to find resources for a family that I was supporting and I was trying to find some resources for them, Other parents that had children with disabilities that were also Latino. And so I kind of came across the website. I knew about the Partnership for People with Disabilities. I didn't know specifically about the Center for Family involvement. 01:07:25:08 - 01:07:58:12 Nickie Brandenburger So I kind of fell upon the website and saw I notice about a job position and I read the job description and the director for family, the Family Services, and I thought, my gosh, I could do this. This is a perfect way to sort of marry my two very specific experiences. Being a professional in the field and supporting so many families over the years that had children with disabilities and then suddenly being a parent, accessing supports and advocating for my son and I could marry those two together into one. 01:07:58:12 - 01:08:00:14 Nickie Brandenburger And so I applied and I got the job. 01:08:00:16 - 01:08:27:06 Jen Reese I find it so strange that we've worked together for so long, and I didn't know the many details of what I like to call origin story. I can't help but think because of all the families we help and we talked to after you had your son. How did that change your perspective of the work you did in your CSB? 01:08:27:07 - 01:08:51:16 Jen Reese Because I know that for me and so many other parents, it seems these are great. Everyone in early intervention was was great, but they also didn't have all the information that you need because it's just not part of their scope of work. And so here you are on the tightrope of both. So how did your perspective change? 01:08:51:18 - 01:09:22:20 Nickie Brandenburger That's a really good question. So the first couple of years, because I can admit now that there was some embarrassment and shame and I was still processing all of it. I don't know if it affected me that much, but eventually I do think it helped me to be so much more empathetic to what families were going through. I could stand in their shoes for a bit right, if you will, when I would attend IEP meetings for families to help support them, and the mothers would get emotional talking about the needs their children have. 01:09:22:22 - 01:09:42:16 Nickie Brandenburger I would get emotional with them because I could relate so much, but I have this story, so I think my son was probably about six or seven. It was just before I came to CFI and I was working with a family, a mother who had a son with Down syndrome. And at the time her son was probably three or four and we had become really close. 01:09:42:16 - 01:10:04:03 Nickie Brandenburger This mom and I and I would visit them every three months and, you know, and get to know her son and advocate for them. And one day we were having this conversation and I had felt comfortable enough telling this mother that I had a child that was accessing early intervention services and struggling in school. And at that point, I believe he was having a lot of medical issues and we had just begun his five of four. 01:10:04:08 - 01:10:24:19 Nickie Brandenburger And so I was sort of I felt comfortable in telling this mom kind of what was going on with me personally. And so she was sitting and listening. You know, this is a mom again, I had been giving professional support to for many years. So she's listening and she's nodding as I'm telling the story of, you know, trying to wrap supports around him and managing all of these appointments and this and that. 01:10:24:21 - 01:10:45:24 Nickie Brandenburger And she kind of got a little smirk on her face and she paused for a second. She said, Nickie can I give you a little bit of advice? And I said, Sure, why I'm telling you. And she said, Stay in your lane. And I at first I thought, What in the world does she mean? Stay my lane? And she kind of laughed and she said, You know, you have been a fantastic support coordinator for our family. 01:10:46:01 - 01:11:06:00 Nickie Brandenburger We have really benefited from your knowledge and your resources. And I think, you know, I'm so appreciative of it. But you are also Thomas mom. And I think sometimes it's easy to get into being a case manager or support coordinator for your son. And it's important because you do have a lot to manage, she said. But stay in your lane, stay in your mom. 01:11:06:00 - 01:11:43:11 Nickie Brandenburger LANE And that's what she meant by that. And I was actually speech less, but in a good way because she was right. I really needed to learn to balance it better. The universe sort of gives you what you need at the time you need it. And that incident was probably about a year before I came to CFI. But that really that moment was really pivotal for me in terms of being able to marry those two things together, being a parent and advocating and understanding the challenges, but also supporting other parents and working with professionals so that that's really when it pivoted. 01:11:43:13 - 01:12:13:21 Jen Reese That is a really good example of what we deal with at the Center for Family Involvement all the time. And I think about how sometimes it's not possible to stay in your lane because when we have to deal with the IEP process or getting second opinions and really going up against what a doctor tells you, because in your bones, you know that it's wrong and these things are hard and. 01:12:13:23 - 01:12:14:10 Nickie Brandenburger Sometimes you. 01:12:14:10 - 01:12:34:12 Jen Reese Want to stay in your lane, but you can't. With the CVI, as we know how to help people kind of do that. And that's why we're so passionate about the work that we do. So can you give some examples of some of the work we've done where we have helped families in this way to kind of figure out how to navigate this road? 01:12:34:12 - 01:12:43:03 Jen Reese Because it's hard and there aren't that many of us who have children with disabilities. It's just such a different world. 01:12:43:08 - 01:13:14:06 Nickie Brandenburger And I think that's one of the things that's unique about the Center for Family involvement. And, you know, our staff that are spread throughout the state of Virginia and our network of what we call family navigators, which are parents and family members and caregivers that have loved ones with disabilities. And they're spread throughout the state of Virginia. So our network has, you know, 40 plus volunteers and then 20 odd staff who all have very different experiences, you know, very different cultural backgrounds. 01:13:14:08 - 01:13:33:04 Nickie Brandenburger Some of us were born in a country outside of the U.S. Some of us were in military families, and we had that transient sort of lifestyle and childhood. Some of us live in rural communities with very few resources or limited resources, and some of us live in cities where we're almost overwhelmed with resources. And there's everything in between. 01:13:33:06 - 01:14:03:19 Nickie Brandenburger We have children of all ages with all different types of disabilities, but the one common denominator that we all have at the Center for Family Involvement is we have someone we love very dearly that has a disability or some sort of special health care need the magic in the work that we do, the family to family, parent to parent support is that when you can connect with that person, that has reached out looking for help, when you can connect with that parent and say, me too. 01:14:03:21 - 01:14:32:24 Nickie Brandenburger There's a magic that happens and sometimes you'll feel a little goose bumps on your skin. You feel that connection when you can share a story and it helps another parent feel validated in how they're feeling, what they're experiencing. Because you say, Yeah, me too. Been there, done that. And it helps even more when the person you're talking to looks like you maybe is from the same cultural background is you lives in the same community. 01:14:33:01 - 01:14:53:03 Nickie Brandenburger And that is also unique, I think, to the Center for Family involvement because we tried to ensure that when a family calls us and asks to be matched with another parent that we have taken into account a lot of different things, we want that match to be, you know, for there to be some perceived sameness among those two parents. 01:14:53:03 - 01:15:15:06 Nickie Brandenburger And sometimes that perceived sameness is the diagnosis that the child, if you've got a child with a really unique, rare genetic disorder and you find another parent that has that exact same rare genetic disorder, that's the perceived sameness and the connection, sometimes it's cultural background. You know, your children may have a very different diagnosis, but if you both are from South America, that's that connection. 01:15:15:06 - 01:15:34:02 Nickie Brandenburger You know, you speak the same language. And I think that that is one of the driving forces behind the work that we do. And I think because we also at the Virginia Center for Family Involvement have connections with partners outside of Virginia. And so we also have a unique opportunity to be able to match and support parents outside of the state. 01:15:34:04 - 01:15:55:02 Nickie Brandenburger You know, we have these other network sister organizations that also do parent to parent, family to family support throughout the United States. And we can reach out to each other and say, hey, I've got this family. This is what they're dealing with. This is the dynamic. And you can send that out to all of the other state organizations and match. 01:15:55:02 - 01:16:17:14 Nickie Brandenburger And I've supported parents in Texas and South Carolina. We've supported parents in Alaska. That model of support, which really kind of started a long time ago, the parent to parent model started, I think, in the seventies with parents sitting around a kitchen table saying, hey, you know, we we have lived experience that should count for something, lived experience should equate to some sort of professional experience. 01:16:17:14 - 01:16:46:05 Nickie Brandenburger And I think that that is also at the the basis of what we do at the Center for Family involvement, because, yes, we're parents, but we've been accessing those services and resources for our family members. So we have knowledge which equates to professional experience. And so it's all about where in those two hats. And I think another thing that we do is we're able to coach parents that haven't had an opportunity to learn how to be a collaborative advocate. 01:16:46:08 - 01:17:03:01 Nickie Brandenburger It's it doesn't come naturally to parents. This child is born to you. You're you love them. You want what's best for them. But there's a period of grief. I think, that every parent goes through like I did with my own son, a period of denial and grief of...
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Why We Must Stop Labeling People High-Functioning/Low-Functioning
11/22/2023
Why We Must Stop Labeling People High-Functioning/Low-Functioning
It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost? In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to ) The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. SHOW NOTES: Heather Trammell is the Director of Family Support at the . She took on that role after her first child was born with Down syndrome more than 20 years ago. - the award winning short film Heather mentioning in the episode. It is a MUST watch. More about More about the . TRANSCRIPT 01:00:07:18 - 01:00:36:21 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU’s Partnership for People with Disabilities. 01:00:37:11 - 01:01:01:24 Erin Croyle This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking. 01:01:02:14 - 01:01:30:20 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals. 01:01:31:05 - 01:02:01:21 Erin Croyle These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes. 01:02:02:08 - 01:02:15:19 Erin Croyle Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that? 01:02:16:00 - 01:02:43:20 Heather Trammell Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does. 01:02:44:04 - 01:03:20:19 Heather Trammell I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings. 01:03:21:03 - 01:03:47:19 Heather Trammell They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it. 01:03:48:05 - 01:04:16:14 Heather Trammell Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books? 01:04:16:19 - 01:04:41:18 Heather Trammell I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious. 01:04:42:00 - 01:05:07:07 Heather Trammell We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose. 01:05:09:09 - 01:05:36:00 Erin Croyle Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more? 01:05:36:12 - 01:06:01:21 Heather Trammell I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity. 01:06:02:07 - 01:06:26:00 Heather Trammell That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person? 01:06:26:17 - 01:06:50:10 Heather Trammell Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us. 01:06:50:16 - 01:07:18:07 Heather Trammell They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more worthy of a human being. We're asking ourselves, who is making my life easier? How does it affect me? It can be kind of self-centered. 01:07:18:19 - 01:07:46:11 Heather Trammell It also doesn't actually tell us everything we really need to know. Really. So if I drop my child off at camp and they're asking me, is she high functioning or low functioning? Answering that question will not give them the information that they need. What they really need to know is she does need help in the bathroom. But if you guys go on a two mile hike, she'll be fine. 01:07:47:10 - 01:08:06:10 Heather Trammell She does not speak very well or very clearly, but believe me, she has everything you say. She'll she'll let you know when things are not going right. So it doesn't really tell us what we need to know. It also doesn't. I mean, you tell me if you agree or not, does it? It kind of put people in a box. 01:08:06:11 - 01:08:34:13 Heather Trammell Oh, yeah. Like they never change. Yeah. Like this is this. You are high functioning. Therefore you will always be high functioning. You will be high functioning. Every situation. You'll be as high functioning at ten as you are at 21. It's not giving people room for growth. Right. I know that my daughter with Down syndrome is much more communicative in certain situations than she is in other situations. 01:08:35:04 - 01:08:59:07 Heather Trammell Does that mean she's high functioning or low function? What area are we talking about? High functioning, low voice. And you can just tell me what area we're talking about. My daughter with Down Syndrome can read, but she does not do math. High functioning or low functioning is kind of a broad term that doesn't really tell us what we need to know. 01:09:00:10 - 01:09:33:18 Heather Trammell And it divides parents in every possible crushing way. I just could not go into how disappointing it is to me to hear parents talk to each other about high functioning and low functioning, or to have to insinuate that Parent A has better because their child is quote unquote high functioning and then Parent B has a much harder time because their child is low functioning. 01:09:34:19 - 01:09:58:02 Heather Trammell We're not saying that quote unquote, high functioning kids don't have needs. If we go ahead and categorize somebody as high functioning, we could go down the path of thinking they need no help at all. Well, sometimes they actually do. Or I think, conversely, that if we categorize someone as low functioning, they have nothing to say, but they don't have nothing to say. 01:09:58:02 - 01:10:27:20 Heather Trammell They have everything you say, they have lots to contribute. But we're not going to hear that because we put them in the school box. That's called both function as very, very arduous. I just hearing parents insinuate or actually say, if you would only X, Y, z, then your child would be doing better as if we were parenting little vending machines. 01:10:28:14 - 01:11:03:01 Heather Trammell Quarter in, candy out right. If I, X, y, z, then ABC will happen. But there's no guarantee of that at all. I know a parent in my local area whose has all the money all the time, all the resources, all the therapy, a huge house time, enough to invest in anything. And yet her child struggles a lot, has needs a lot of support. 01:11:04:18 - 01:11:36:09 Heather Trammell We are not parenting vending machines and we're also not trying to be you know, my child is a project parent either. So I think sometimes when we divide between high functioning, low functioning, the next question is, well, what did you do? What did you do to make their skills so great? What did you do that they were so high functioning and that we insinuate that, of course, it's all on us is we're the ones that that made that happen. 01:11:37:12 - 01:11:57:21 Heather Trammell But even the parents I know whose children are doing very well, they don't always appreciate being quizzed like that. They don't appreciate that question at all. You might think they'd be flattered by it because their children are doing so well, but they're actually not flattered by the question at all. They're like, I just let them be themselves. I'm just working with raw material here. 01:11:58:09 - 01:12:36:00 Heather Trammell They didn't do something. It was like the magic therapy, the magic supplement, the perfect educational situation, and that's how they did it. Boom, poof. There I got like, I hope I'm shrinking now. Not necessarily. Some parents are doing everything they possibly can and their children skills struggle. And I think when we divide in high functioning emotion categories, we are putting a lot of pressure on our kids to not be themselves, not letting our children be themselves. 01:12:36:08 - 01:12:47:21 Heather Trammell And we're putting pressure on ourselves to be the deciding factor of how well our children are doing as that depending solely on us. And I'm not I don't believe it does. 01:12:49:22 - 01:13:09:04 Erin Croyle I think more parents need to hear that. I shout it from the rooftops because it really is something that exists. And I have had parents of older children with Down syndrome make very sweet suggestions, mind you, but. 01:13:09:10 - 01:13:10:23 Heather Trammell Comes from a good place. I'm sure. 01:13:11:05 - 01:13:41:21 Erin Croyle It does. Yeah, it was. You know, here here's like this accomplished adult and I hear from the parent, Oh, well, I read this with him and I did this with them and I did this. And here I am. I've invested all this time and money in the learning program. I can't even get my son to engage. I can't I take the materials out and he won't sit with the same, same and but when you attend the courses, they're like, Oh, well, then you're doing it wrong. 01:13:42:00 - 01:13:43:03 Heather Trammell Yeah, maybe it. 01:13:43:03 - 01:13:58:02 Erin Croyle It is so frustrating because especially as mothers, I think we put it on ourselves as if it's our failure and then it does our child a disservice because we're we're like trying to push them to do something that they just aren't there for. 01:13:58:07 - 01:14:29:24 Heather Trammell And begging ourselves up on the way. As parents, you know, think about our friends whose children have Down syndrome and autism together. That cajoling nurses, this very challenging situation. They are doing everything they possibly can to help their children. They love their children. They would want their children to be as successful as they possibly can, but their children might have challenges that other kids don't who don't have a diagnosis like that. 01:14:31:08 - 01:14:58:08 Heather Trammell Let's not beat the parents up. Let's not encourage other parents picking them up and let's not encourage them to beat themselves up either. They are doing the best they can. Sometimes in my parents support experience, I will be perfectly honest with you. And there are some parents I find very frustrating to talk to. Go figure. Sometimes I do everything I can to make the best suggestions possible and I don't see them pick up on it. 01:14:58:19 - 01:15:23:13 Heather Trammell They don't move forward with any of the suggestions that I took a lot of time to pull together for them. And I do find that very, very frustrating. But they really still are doing the very best that they can. I think of some families where they don't have a lot of margin. You've heard you've heard the phrase about margins. 01:15:23:13 - 01:15:47:22 Heather Trammell Maybe you've read the book. I have a certain amount of margin in my life. We are a stable family with stable finances. I am not in danger of the lights being cut off. I'm not in danger of food not being on the table. I have margins that way. There are some families that don't have those margins. They have their finances are extreme and we take they are food scarce at the end of the month. 01:15:48:04 - 01:16:07:11 Heather Trammell Maybe their children experience more difficulties than my children do. Their margins are a little bit smaller. And so even when I have frustrating conversations with parents or frustrating situations and I'm like, I don't know what else I can do to help this parent, I have to realize that they are doing the best that they can with the margins that they have. 01:16:08:01 - 01:16:22:11 Heather Trammell And sometimes when children struggle more, when they have more high support needs, our margins might be a little bit smaller. And I think we need to recognize that and still celebrate that person and support that parent. 01:16:23:24 - 01:16:26:22 Erin Croyle Yeah, and support that parent maybe even more so. 01:16:26:22 - 01:16:27:12 Heather Trammell Yeah, even. 01:16:27:12 - 01:16:33:00 Erin Croyle More. And it's that analogy is interesting because I think about how our margins shift over time. You know. 01:16:33:03 - 01:16:33:17 Heather Trammell They do. 01:16:33:17 - 01:16:35:15 Erin Croyle You have aging parents, and you have to help them. 01:16:35:16 - 01:16:36:18 Heather Trammell True. 01:16:36:20 - 01:16:39:18 Erin Croyle Right. Or loses a job or. 01:16:39:24 - 01:17:01:17 Heather Trammell Yeah my margins were a lot smaller last school year than they are going to be this school year. My children had educational needs last year. That just took a lot of time for me, lost a lot of sleep over it. What about peace? Enjoyed stress free living. So last year was not my best year and I had to drop out of my gym classes. 01:17:01:22 - 01:17:32:09 Heather Trammell I love my gym classes very much, but because my family needed me, I had to cut loose some stuff. So my margins were a little bit smaller last year. I'm looking forward to them being a little bit bigger this year. That'll be great. But when my family needs change, I change with them. If I did have a health care condition last year or any time, if the main breadwinning parent dies or something, your margins change and they would naturally change. 01:17:32:09 - 01:17:56:05 Heather Trammell If your child's struggles were different one year than they were to another year too. So again, that's what, you know, the whole high functioning, low functioning discussion is so boxy that it doesn't allow for any changes. We've just categorized them. Poof, you are high functioning, you know, And then they they never can change. They can never, never get out of the box. 01:17:56:22 - 01:17:57:20 Heather Trammell I find that difficult. 01:17:58:11 - 01:18:15:12 Erin Croyle Yeah. And I think it's rooted in able ism. I think about right through. Yeah. When my son was young and I was seeing the geneticist and specialist and driving him in there. Yeah, I remember before knowing how terrible the term is, asking what you think he'll be high functioning and like. 01:18:15:12 - 01:18:15:22 Heather Trammell Really. 01:18:16:07 - 01:18:23:06 Erin Croyle Clinging on to that. And then in the Down syndrome community, we have these amazing figures like David Egan in. 01:18:23:06 - 01:18:23:19 Heather Trammell Yeah, true. 01:18:23:22 - 01:18:27:05 Erin Croyle Frank Stevens and all these other amazing people. 01:18:27:14 - 01:18:28:00 Heather Trammell They are. 01:18:28:01 - 01:18:40:03 Erin Croyle And that is a true inspiration. You know, I had my son and I got to meet these people and, you know, David's of friends and yeah, but in my mind I was like, Well, that could be my son. 01:18:40:17 - 01:18:41:01 Heather Trammell Right? 01:18:41:06 - 01:19:06:15 Erin Croyle But those are my dreams. And it's become clear that one, those are my dreams, right, too. Not every kid can get a standard diploma if they have Down syndrome. And fighting for that, it puts pressure on you as a parent, but also pressure on your child that maybe we need to rethink our dreams as a parent and look at who are kid is, right. 01:19:07:10 - 01:19:37:05 Heather Trammell Oh, you think? Yeah, maybe we do, you know, And I think that I think that's part of a real challenge when you're when your child is very young enough, is to be chasing those things down, chasing down your dreams rather than their dreams. And to have have a vision in your mind about what you want. And you will not settle for anything less than that. 01:19:37:23 - 01:19:56:06 Heather Trammell Nothing will change that. I'm not saying that some of us don't have deeply held...
/episode/index/show/8aaf3aa3-b129-477e-a3dc-410c47eff9f9/id/28757313
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Everything You Need to Know About IFSP and Applying for Funds
10/24/2023
Everything You Need to Know About IFSP and Applying for Funds
When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us “parent-caregiver hybrids” have a lot to learn about supporting a child with a lifelong disability. Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; “waiving” the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states. Waiver programs vary greatly when you cross state lines. You can find more information about each state on the . While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the “DD Waiver” and the Commonwealth Coordinated Care Plus Waiver or the “CCC Plus Waiver.” Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. has more information and helpful links. of Virginia Medicaid waiver programs that is updated regularly. And the with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you’re not in Virginia, can connect you with supports in your own state to help you understand the systems there. Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It’s critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That’s because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families. The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That’s why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more. SHOW NOTES: IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248 For more IFSP Council Information email and to apply: Facebook Pages for IFSP Councils: TRANSCRIPT: 01:00:07:17 - 01:00:34:18 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability. 01:00:34:20 - 01:01:04:16 Erin Croyle Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC. 01:01:04:18 - 01:01:29:14 Erin Croyle The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently. 01:01:54:09 - 01:02:19:13 Erin Croyle It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families. 01:02:19:15 - 01:02:39:14 Erin Croyle It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines. 01:02:39:16 - 01:02:50:08 Erin Croyle Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP? 01:02:50:10 - 01:03:24:16 Heather Hines Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils. 01:03:24:18 - 01:03:56:02 Heather Hines But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs. 01:03:56:04 - 01:04:24:20 Heather Hines So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through. 01:04:25:01 - 01:04:45:13 Heather Hines Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program. 01:04:45:15 - 01:05:11:15 Heather Hines So, as you know, Erin, we have a partnership with your team, the Center for Family Involvement, and we fund some of the work that you all do to support families. And we truly believe that family mentoring is extremely valuable and that families deserve to be able to talk to someone who has been where they are and can provide that emotional support while also helping them figure out what to do, where to go next. 01:05:11:17 - 01:05:50:17 Heather Hines And that is wherever they are on their journey. Our partnership with VCU is very important. It also includes LEAP training, which stands for Leadership for Empowerment and Abuse Prevention training. We're excited to partner with you on that. Another partnership we have is with The Arc of Virginia, and that is to provide peer mentoring opportunities. Peer mentors are people with developmental disabilities who are hired, trained and paid to provide guidance and support and resources to other people with developmental disabilities to help those people achieve the life that they want. 01:05:50:19 - 01:06:11:17 Heather Hines Peer mentors are dedicated to helping others reach new levels of independence and inclusion in their communities. Then we have our community coordination program that supports community action and engages individuals and families through our regional and state councils. And you will hear when Rhonda gets to talk a little bit more, she'll tell you a little bit more about those. 01:06:11:18 - 01:06:40:05 Heather Hines We also have a partnership with Senior Navigator, which provides education information and general referrals through the My Life My Community website. I'm sure you're going to have links to that website in your show notes. Some families may have used this website for reference to my life, my community website, the IFSP resource for Family page, A specifically for families, individuals who are looking for resources, waiver, non waiver, anything goes here. 01:06:40:05 - 01:07:04:07 Heather Hines But we just want to make sure people have information that is important to them in one place and folks need help navigating the system or finding services support. There's actually a call center that we have with my life, my community. There's a toll free number that maybe we can add in your notes as well. Anyone can call and speak to a live person between nine and four on Monday through Friday. 01:07:04:09 - 01:07:31:05 Heather Hines So that's a great partnership as well. We encourage families to check out that website and we hope it's helpful for folks. And then we have a communication component. We have a monthly digest that we put out to individuals and families targeting, again, primarily people that are on the DD waiver waitlist. But it's really for anyone that's interested and trainings, events, resources, usually low cost or free. 01:07:31:05 - 01:07:43:03 Heather Hines That's one of our roles. And we have annual messaging that goes out to everyone on the waitlist, social media presence and a lot more. So there's more to IFSP than funding. 01:07:43:05 - 01:08:08:22 Erin Croyle There is a lot more. And those partnerships you mentioned, I know all of us at the Center for Family Involvement and the Partnership for People with Disabilities, which CFI falls under. We care deeply about helping individuals and families and many of us are those families. We have lived experience and we know how hard this can be. We want to make it easier and we collaborate with our community partners, such as The Arc of Virginia to do that. 01:08:08:24 - 01:08:17:15 Erin Croyle Of course, we realize how important the funding is to families. So let's turn to that now. Tell us more about the IFSP funding piece. 01:08:17:17 - 01:08:48:03 Heather Hines So the IFSP team administers this funding annually. It is one time for fiscal year, not calendar year. So that's one time between July and June every year. The funding portal opens for application for 30 days, so it opens Monday the 16th and is open for 30 days, closing on November 14th at 5 p.m.. The funds are allocated by the General Assembly and are intended to enhance or improve an applicant's quality of life. 01:08:48:05 - 01:09:16:10 Heather Hines Promote their independence and of course their continued residence in their own home or in their family's home. To be eligible, the applicants must be on the DD waivers waiting list, and they also must be living at home or in their family's home. Those are the two main criteria. Now, who can apply is the individual who's on the waitlist themselves or what's called their custodial family member. 01:09:16:11 - 01:09:38:15 Heather Hines I'm not a fan of that term. That's not the most person-centered term, but that's what's in the regulations. So that's why we use it, because I don't want to confuse anyone. And what that means is it can't just be any family member. So it's a family member who has primary authority to make all major decisions affecting the individual and with whom the individual primarily resides. 01:09:38:17 - 01:09:50:18 Heather Hines That's just to be clear, those are the only two people that can apply is the person or their custodial family member. I can tell you a lot more about it, but that's the gist of what the program is. 01:09:50:20 - 01:10:13:20 Erin Croyle So I want to talk about the application process for the IFSP and for funding. In the past it was a first come, first serve basis, which, if memory serves, could be a really chaotic 24 hours for applicants and plus the lead up time to that deadline. You know, it was really stressful just getting online and having poor Internet or Internet lag. 01:10:14:00 - 01:10:25:20 Erin Croyle It could be messy, but that's over now, right. And now it's a combination of priority and lottery. I know this can be complicated to explain, but can you give us the basics about these changes? 01:10:25:20 - 01:10:49:10 Heather Hines SURE. So now what we're doing is basing how we distribute the funds on urgency of need or what's called risk of institutionalization. So you mentioned earlier when you were describing what a waiver is. Again, it's waiving someone's rights to an institution. That's where that language comes in, is we want to make sure that it's going to the people with the highest level of need. 01:10:49:12 - 01:11:10:07 Heather Hines And again, yes, we wanted to make sure that everyone had access to it so that it is fairly distributed. And when it was first come, first serve and may have unfairly benefited people who were already more connected to resources and easy access to a computer, for example. And so we wanted to make sure that everyone had the same access. 01:11:10:07 - 01:11:32:00 Heather Hines And so that's why it runs for 30 days. So everybody has time to get the information, to find out about it and to get to a computer and be able to apply and get the support they need to be able to apply amounts that applicants can request now is based on a funding category. The funding categories are based on each individual's priority status on the waitlist. 01:11:32:00 - 01:11:57:23 Heather Hines So go to the CSB, get on the waitlist. When you meet with the case manager or the intake staff, they do some assessments based on a bunch of questions that they ask. They find that you need a certain priority criteria. So there's probably one, two and three are you. One is the highest level of needs. That's the folks that have the most complex needs and what we would consider the most at risk. 01:11:58:00 - 01:12:19:16 Heather Hines Those individuals are the top priority for the funding as well. So they're the top priority in order to get a waiver. So they're top there on the waiting list and they're also top priority for getting the IFSP funding. That is the annual funding. If they apply, 50% of the funding goes to those on priority one. The way we determine who gets it is based on their critical needs summary Score. Again, that's something that's common with your CSB staff case manager and they ask questions on the form and there's a score attached to each person that tells how urgent their needs are within that priority one category. Funding approval is given to individuals and priority one who are most at risk of institutional elevation. As I said, highest level of need indicated by that critical needs summary score. 01:12:49:23 - 01:13:18:07 Heather Hines So funds will be awarded to those with the highest critical need. Summary score. Until there's no funding left for that category. Families don't need to know what their score is before they apply. We have access to all of that information. They do need to be staying in touch with the CSB, with their case manager, if they have one, to make sure that their information is current and accurate in the system, because that's where we get the information when we're making our determinations for funding. 01:13:18:09 - 01:13:43:18 Heather Hines We'll stay in touch with that case manager. So something changes in your life. They know what it is and they can update your priority. So maybe you should be priority one, but you forgot to tell them that a primary caregiver had a new situation. And maybe something really critical has changed for that person. So then for priority two and three, it's done a little differently for people that are on the waitlist and have a priority two or three status. 01:13:43:20 - 01:14:06:02 Heather Hines Funding is given randomly to those applicants. So it's like a lottery system; this many people for priority two and three have applied for funding and then it's basically randomized because not even Rhonda or I that do it, someone gives us numbers and names attached to those and it's totally random. So we give funds to those people until we run out for that. 01:14:06:04 - 01:14:30:11 Heather Hines One thing to note, though, is that if you have a priority two or three status and did receive funding during the last funding cycle, you can still apply this time. But we're awarding funding first to those in priority two or three who did not receive funding during the last cycle. If there is funding left, then those who received funding last cycle will be considered again. 01:14:30:12 - 01:14:50:12 Heather Hines That's to make sure everybody has a chance. Over the three years I didn't get the randomization last time. Maybe I'll be more likely to get it this time. We want as many families as possible to have access to the funding. We want those with the highest level of needs to have access. So this is our way of trying to do all of that with a limited amount of funds. 01:14:50:14 - 01:15:19:18 Erin Croyle That's really helpful. And I just want to also say when you're reaching out to your community services boards, if it's something you haven't done before, just know that they're regional, county, city based and sometimes you really have to go through a phone tree to get to someone who knows about waivers and programs. So be patient. And again, if you need help, you know, see if I can help you navigate getting through to your CSB, because depending on where you live, it can be a complex process until you get to someone who knows what you're talking about. 01:15:19:20 - 01:15:34:20 Erin Croyle I want to know how many families are able to get some financial relief from this program if we're talking 14,000 on a waiting list. How many do you see apply typically? And then how many do actually get funds and how much money are you talking here? 01:15:34:22 - 01:16:12:15 Heather Hines The total amount available, this funding period, as well as back in January, February, each time it's been $2.5 million. So that's the total. During the winter of 2023, applications were submitted for every $3 million. We could only award 2.5 million, but that meant that we were able to approve 3770 applications. So that's 3770 individuals or families that received funds, almost 4000 people, which is great, but obviously not close to 14,000, as you said. 01:16:12:17 - 01:16:39:06 Heather Hines But with limited funds, it's good to see that many people getting something. We expect that number to be about the same this fall since we again have 2.5 million and the amounts for priority have not changed. So we are thinking, let's see, last time the total number of people that applied was 4914, as I said. And then the number that were approved was 3770. 01:16:39:06 - 01:16:59:23 Heather Hines So that 77% of people who applied were able to receive funds. If we get more applications this year, which it's looking like it might, the percentage will be...
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What to Expect When the Unexpected Happens
09/26/2023
What to Expect When the Unexpected Happens
The wishes, hopes, and dreams of expectant parents are many. Their baby having a lifelong disability usually is not one of them. When that happens, it can be devastating for families. The staff and volunteers at the have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be. So does Heather Trammell. She's the Director of Family Support at the . She took on that role after her first child was born with Down syndrome more than 20 years ago. She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness. In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be. The Odyssey: Parenting. Caregiving. Disability. at VCU School of Education's provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT: 01:00:07:18 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities. 01:00:36:09 - 01:00:59:17 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking. 01:00:59:19 - 01:01:26:21 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud. 01:01:26:23 - 01:01:47:15 Erin Croyle Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after. 01:01:47:19 - 01:02:04:06 Erin Croyle And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you? 01:02:04:08 - 01:02:32:15 Heather Trammell Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment. 01:02:32:17 - 01:02:55:09 Heather Trammell So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction. 01:02:55:09 - 01:03:25:00 Heather Trammell Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties. 01:03:25:06 - 01:04:00:10 Heather Trammell And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome. 01:04:00:12 - 01:04:26:20 Heather Trammell Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me? 01:04:26:22 - 01:04:54:00 Heather Trammell And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it. 01:04:54:02 - 01:05:20:07 Heather Trammell Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio. 01:05:20:09 - 01:05:53:07 Heather Trammell And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked. 01:05:53:09 - 01:06:18:10 Heather Trammell And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday? 01:06:18:12 - 01:06:44:21 Heather Trammell He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore. 01:06:44:23 - 01:07:11:17 Heather Trammell You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon station, which at that time was completely closed. 01:07:11:17 - 01:07:37:10 Heather Trammell Then you could still smell the smoke from the Pentagon attack as you passed by. So my mood did not get better all the way at the office. So my my husband and I met at the train station. We went to his office. He sat across his big oak desk with a very serious expression on his face. He didn't say anything like nothing at all. 01:07:37:12 - 01:08:02:03 Heather Trammell We weren't sure what to say either, so we. We just picked things out of the air where we weren't even sure what to ask. We said so is the baby okay? He said, Well, we're going to get a level two ultrasound. Here's your prescription, and that'll tell us more. Great. Am I okay? He said, Oh, you know, your health is good. 01:08:02:03 - 01:08:32:05 Heather Trammell This will not affect your health. Good. And then we're still fishing for things to say. We said, Well, so is it a girl or a boy? And he shuffled some papers and he said, it's female. And in my mind now, my husband is much more generous and thoughtful than I am. But in my mind he had just reduced my unborn child to a tadpole experiment. 01:08:32:07 - 01:09:01:20 Heather Trammell And I thought that was just it was really unreasonable of him medically. Yes, he's right. Female ex-wife. Got your exit? Sorry. Got it. But we were having a girl or a boy. I'm not giving birth to a thing. Giving birth to a real person so we could leave of his office. He didn't give us any other information. No books to read, websites to consult people to talk to. 01:09:01:22 - 01:09:29:23 Heather Trammell That was either because he forgot he didn't know or I'm not sure why he didn't, but or he maybe he expected the maternal fetal medicine people to do that. Whatever his reason was. We spent the rest of the day deciding on a name for our little girl because she was no longer going to be known as the baby or the problem when she was our little girl and she had to have a name. 01:09:30:00 - 01:09:55:03 Heather Trammell So we we named her Elizabeth. And that very moment, she was going to be Beth forever. So we went on with the rest of our pregnancy many days. I woke up in the morning after a nice night's sleep. You know, when you wake up in the morning and you've had a good night's sleep and you feel, ah, you just have that feeling like you have you have done well. 01:09:55:05 - 01:10:22:23 Heather Trammell And then I remembered my situation and then the bottom fell out of my stomach, like kind of every morning. So that was really, really difficult. One of the things I did during that time and in retrospect I would say it was somewhat self preservation. Self preservation being I didn't want to tell other people about our news. I really didn't want to hear what sweet children they were, how God. 01:10:22:23 - 01:10:53:01 Heather Trammell When we give special children to special parents or whatever, I might have thought I was going to hear and threatened my husband with certain death if he told anybody. But we did have lunch with a college buddy of mine and his wife. For some reason I just felt really comfortable with them and I told them our news over dinner and the next day she introduced me via email to somebody she worked with at the middle school where she was a teacher. 01:10:53:03 - 01:11:19:02 Heather Trammell This woman was a special educator at the middle school, and I thought to myself, Well, if we're having a baby with Down's syndrome, I am going to be the best prepared parent known to the free world. And so, yes, I think I had better learn about this special ed thing now. I prepared a whole list of notes, you know, and I went to a sit down with this lady at her home. 01:11:19:04 - 01:11:50:02 Heather Trammell Her family was out of town for a family event. I sat in her living room with my cookies and my orange juice, and I opened up my notebook of my voluminous notes. I was ready. I was not going to waste this woman's time. The first thing out of her mouth was, So tell me your story. And you know what, Erin, we can talk about, especially for the next 4 hours, we can talk about special ed at all. 01:11:50:04 - 01:12:12:19 Heather Trammell We talked about how I was feeling, what I was thinking, what I was excited about, what I was scared about, questions I could ask and get answered for hours. The sun went down and I never ask a single special ed question the entire afternoon because what I really needed was to be heard and to be heard in my heart and soul. 01:12:12:21 - 01:12:34:24 Heather Trammell Eventually, I found out everything I need to know about special ed and more that I didn't want to know about special. You get me, right, Erin? Oh, yeah. So we ended our conversation, and on my way back to the car, I thought to myself, You know, if the world of disability is filled with cool people like her, I think I'm going to like it here. 01:12:35:01 - 01:13:02:11 Heather Trammell And I was right. There's lots of cool people out there like her. And I met them. You are one of them and many others. So I've met some wonderful people in the land of disability. And I think that really started me also on the path of yet another career turn in the road. I swear my resume looks like a meandering silver thread. 01:13:02:13 - 01:13:26:15 Heather Trammell Mm. So I was a music major in college. I was a concert promoter and a booking agent. After I was in college. Then I was a paralegal, and then I was a non-lawyer support professional. And then I was a parent support professional because that's what I just really made a difference to me. How that woman helped me. I wanted to be that kind of help to other people, too. 01:13:26:17 - 01:13:44:15 Heather Trammell And I had already had a little bit of training in that kind of thing, so I was glad to pick up the mantle of leadership in that way. That was 20 years ago, if you can believe it. Like 20 years. This very year I have been serving parents and I've loved every minute of it. 01:13:44:17 - 01:13:46:05 Erin Croyle And you are so good at it. 01:13:46:06 - 01:13:52:03 Heather Trammell Oh, thank you. You're welcome. I even got myself a little 20 European from Amazon. 01:13:52:05 - 01:13:54:12 Erin Croyle As you should. Someone should have done that. 01:13:54:14 - 01:13:55:02 Heather Trammell Oh. 01:13:55:04 - 01:14:08:23 Erin Croyle My goodness. So when you moved on to that role, did that role exist? Did you create it? Tell me a little bit about what you do, but also how you started doing that. 01:14:09:00 - 01:14:37:22 Heather Trammell Sure. Yes. The role did exist before I got there, and the role had been held by several people before me. People who were at that time legends in their own time. When I took over that mantle of leadership, I had a small group of volunteers that were open to be ing, volunteer, mentor parents. And so I thought, Well, I will call all these people and introduce myself that I'm the new director of Family Support and just wanting to introduce myself. 01:14:37:24 - 01:15:00:08 Heather Trammell And every time I probably could, 80% of them said, Oh, wow, that's really nice. Warm welcome. It's nice to meet you. Oh, you know, Amy, I love Amy. She's just the best. She was there when my little boy was born. And I thought to myself, Oh, my. What kind of shoes are my stepping into? I was a little bit. 01:15:00:08 - 01:15:27:02 Heather Trammell And I was excited, but a little bit intimidating. Right. One of the things that was really instructive to me at that time was that I was noticing so many parents at that time. Now we're talking this is 2003. We're not getting in touch with our organization until their babies were six months old. And I thought, Oh, well, that's just really shouldn't they have gotten in touch with us earlier? 01:15:27:03 - 01:15:55:00 Heather Trammell I mean, not everybody had great Internet access at that time. Our website at that time was really not that good. It wasn't verifiable. So, of course, I mean, maybe people just didn't know about it. So I went to the director of the organization at that time and I said, Hey, what is up with this? Why do people not call us until like six, nine months after their babies are born? 01:15:55:02 - 01:16:21:02 Heather Trammell She said, you know, I think I wouldn't worry about that so much as what I would focus on is you go make this the best it it can be. You be the best you can be so that when they call and they will, that you are there for them being the best and giving the best that you have for them. 01:16:21:04 - 01:16:44:20 Heather Trammell And I took that as my marching orders. I did a little bit of revamp to that program. I was glad to get tremendous advice from other parent support directors around the country and learned a lot from them to implement into that program. So, yes, it did exist before I got there. And yeah, I did tweak it a little bit as time went by. 01:16:44:22 - 01:17:08:11 Erin Croyle When we think about parents that are just getting a diagnosis, whether it be Down's syndrome or cerebral palsy or any of the other things that go on, you know, the rare diagnoses too, as some of my friends have told me, we don't have a club. Right. What I do love is that we help anyone who needs help because so many of our experiences are similar. 01:17:08:13 - 01:17:20:05 Erin Croyle You're able to reach so many parents at such a vulnerable time. Can you talk about some of the different reactions you've seen throughout the years? 01:17:20:07 - 01:17:46:23 Heather Trammell I think it's a good idea to remember that you never stand in the same river twice. So even though I can sit here and tell you that some of the stories I've heard are are very common or even repetitious, I mean, some things are just so common. I could almost write other people's birth story, but I never stand in the same river twice. 01:17:46:24 - 01:18:14:23 Heather Trammell I'm not the same person now as I was 20 years ago. Being the brand new parent support director and the parents that I meet now are certainly not the same people that they were then. First of all, the child rearing years of the people I meet now, I mean, these people grew up on the Internet. They grew up with cell phones and social media accounts. 01:18:15:00 - 01:18:39:14 Heather Trammell They are very, very well connected. So a lot of times when I meet a new or expectant parent for the first time, they have already done quite a bit of Internet reading. They have maybe gotten in touch with some other parents via social media. I'm just another step on the train. So a little bit of a difference now from back then. 01:18:39:15 - 01:19:06:00 Heather Trammell So 20 years ago, maybe there wasn't really anything for them to go look at, really. And it certainly wasn't very cheerful. I think in the twins or anything before the twins, you could find some websites about Down's syndrome and you're sorry you looked it, which is really not very cheerful. They were very medical based, not telling you anything about what life was like with Down's syndrome. 01:19:06:04 - 01:19:45:08 Heather Trammell And if they did, it was gloom and doom. Nobody wanted to hear that. So some of the parents I've met now have definitely got a lot more homework before they get to me. And if they have a prenatal diagnosis, they're going to have that information through noninvasive prenatal testing. So much more now than ever before. So back in 2000, the noninvasive testing you could get was an AFP test, which was accuracy was always never very good. 01:19:45:10 - 01:20:07:16 Heather Trammell So you actually really hardly could take that seriously. Back then, the...
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Back to School Special
08/12/2023
Back to School Special
The back to school grind is tough for everyone, but it’s over in a flash and parents get a breather during school hours. Except when they don’t. The parents and caregivers of students with disabilities live in back to school mode all year long. It’s almost like Santa preparing for Christmas. The first day of school is the main event, but elves are busy all year long. Come to think of it, Santa might have it easier. This episode is here to make things easier for families. The Center for Family Involvement’s Blind and Vision Impaired Specialist Dawn Pfeifer-Snow supports countless people with questions about school. She’s also a mother with lived experience navigating school. Meg Druga taught in an inclusive preschool classroom for 11 years. She is an Early Child Coordinator with the Training and Technical Assistance Center (TTAC) at James Madison University. She’s also a Determinator with . To learn more about that program and its origins, check out our episode, Between the host and guests, there are tips, insights, and validations that everyone can use, from the Pre-K set all the way to high school and beyond. Take a listen and please, share your experiences with us! The Odyssey: Parenting. Caregiving. Disability. provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT 01:00:07:17 - 01:00:32:11 Speaker 1 Welcome to The Odyssey. Parenting Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I've been on this less traveled road since 2010, when my first child was born with Down's Syndrome. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities. 01:00:32:13 - 01:00:58:09 Speaker 1 This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we don't shy away from the tough stuff either. Among the hardest of the hard for many families is school. The back to school vibe is completely different when students have ideas and five offers. I see this with my own three children. 01:00:58:11 - 01:01:19:15 Speaker 1 For my younger nondisabled kiddos, it's a breeze. We just get the stuff they need from their school supply list. Let them know their teacher and room number and poof, off they go. For my oldest, who's now a teenager. The fall back to school prep starts in January. His monthly IEP meetings shift their focus to the next academic year. 01:01:19:17 - 01:01:40:19 Speaker 1 School supply shopping consists of my staring at a long list, wondering what he'll actually need and use in the weeks and days leading up to the first day. I'm in touch with his school team so we can make the transition as seamless as possible. He needs help getting to all the new classrooms, not just on the first day, but until he gets the new routine down. 01:01:40:21 - 01:02:03:04 Speaker 1 And it doesn't stop after the first day. There is constant communication as my son and his new team figure each other out. And of course, in middle school and high school, these transitions come each quarter with new classes and teachers. Unfortunately, the challenges I face with my son are just a drop in the bucket compared to what many caregivers juggle during the school year. 01:02:03:06 - 01:02:27:08 Speaker 1 That's why I've asked Dawn Pfiefer-Snow and Meg Druga to join me today. Dawn is the Center for Family Involvement, Blind and Vision Impaired Specialist and the Family Engagement specialist with the Virginia Deaf-Blind Project. She's supported countless families with back to school questions and other issues. She's also a mother with lived experience, navigating schools and so much more. 01:02:27:10 - 01:02:53:06 Speaker 1 Meg taught in an inclusive preschool classroom for 11 years. She's now an early childhood coordinator with TTAC the Training and Technical Assistance Center at James Madison University. She's also a determined eater with I'm determined. And if you want to know more about that program and its origins, check out our episode Why We Need More than Inclusion. Now, both of you, you're here. 01:02:53:07 - 01:03:08:05 Speaker 1 I'm so excited. I think this is a very important conversation for parents and caregivers to hear because it is such a tough time. I would love to hear from you both to just give a little context of who you are and why they should listen to you. Meg, can we start with you? 01:03:08:07 - 01:03:37:09 Speaker 2 Sure. Thank you, Erin, for having me today. I am very excited to be here, as Erin mentioned. My name's Meg Druga. I'm an early childhood coordinator at the Training and Technical Assistance Center. I've been in my role for almost three years. I'm getting ready to come in to my three year anniversary. Prior to that, I was an inclusive preschool teacher in the school division in which we had 100% inclusion in our preschool program. 01:03:37:11 - 01:04:07:17 Speaker 2 I am duly endorsed in early childhood and early childhood special education, and I came into my career a little late. I actually started down this path in my path. I was going to school in agriculture and applied economics about halfway through my college experience. I realized that's not what I wanted to do. So I literally came back home, showed up on my parents doorstep, and started trying to figure out what I wanted to do with life. 01:04:07:17 - 01:04:33:03 Speaker 2 And through that journey, I happened to bump into an amazing early childhood special education teacher who told me that she needed a new educator in her classroom and so brought me into it. And after the first day of school and her newly inclusive preschool classroom, because it was a new program that Virginia was running, I fell in love and decided that that's what I wanted to do. 01:04:33:04 - 01:05:03:07 Speaker 2 So for three years, I worked as a peer educator and went back to finish my degree in early childhood special education. So I fell in love with early childhood special education and realized that that's where I want to be. I'm also a mom of a very spunky eight year old, and people often hear me talk about Lizzie. We live in a beautiful rural community with my husband and our dog, Bo. 01:05:03:09 - 01:05:25:13 Speaker 1 I love it, Meg, and I love a good origin story because, Dawn, I don't know about you, but I was a journalist before this and I didn't know much about disability or any of it. And then I have my son and that's why I'm here. I'm always curious when someone's not really affected by disability, what brings them into the field, what brings them into the profession, whether it be special education or policy? 01:05:25:15 - 01:05:35:23 Speaker 1 So hearing that and hearing that you fell in love in a classroom, just kind of it makes my heart sing because those are the people who we want teaching our kids anyway, don't we? 01:05:36:00 - 01:05:52:23 Speaker 2 Yeah. Yeah, it was I always say it was a life changing moment for me. That class I still carry with me and they have graduated now. But in my mind they're still these three four year olds that forever shaped my career path in my life. And I'm always very grateful. 01:05:53:00 - 01:05:55:13 Speaker 1 Dawn, can you tell us a little more about yourself? 01:05:55:19 - 01:06:18:12 Speaker 3 Yeah. Like you, Erin, I love to hear the why and the how of people getting into, you know, the disability world, for lack of a better, better word, much like you, because I've heard you share your story as well. Erin, I had really never been around anyone with disabilities before. I remember one young man in high school, and that's it, right until I had my daughter. 01:06:18:17 - 01:06:38:13 Speaker 3 And that's really when people ask me, you know, what do I do? That's usually my first thing. I'm a mom first, right? I'm a mom. And then I also provide support to families who are have loved ones who are blind, visually impaired or deaf blind. But yeah, my daughter brought me into this work and, you know, I'm forever grateful She likewise changed my life for the better. 01:06:38:15 - 01:07:06:07 Speaker 3 So, yeah, So I'm a mom first. I always identify as having three children with visual impairments. So my oldest biological daughter is 21, freshman in college. She's blind. She's identifies on the autism spectrum, has hydrocephalus and a seizure disorder. My youngest biological child is getting ready to go off to her freshman year of college, and she is blind in one eye and also has ADHD. 01:07:06:12 - 01:07:32:01 Speaker 3 Totally different eye conditions. And then I was blessed to have a bonus daughter stepdaughter, I call her bonus daughter, who is forever 18 and seven, and she had a genetic degenerative neurological condition that caused her to lose her vision first. And then it affected all of her other abilities over time. But when she was young, she had already lost all of her vision, which also led me to my wonderful husband. 01:07:32:03 - 01:08:11:04 Speaker 3 So I've been doing this work now for probably 19, 20 years, is when I first started really reaching out and trying to connect with families and found myself providing support to other families because I was doing was attending and taking so many trainings and workshops to educate myself and as I was establishing a network of support for myself, I was very quickly finding that even parents of older children had not taken a lot of these trainings and had not were not aware of their rights, were not aware of all the various options that they had. 01:08:11:06 - 01:08:28:24 Speaker 3 And so I found myself naturally helping other parents really early on. So I would say 19, 20 years of doing this work informally and going on 12 years with the Partnership for People with Disabilities, doing this work in a more formal way of helping families navigate the services and systems. 01:08:29:01 - 01:08:52:16 Speaker 1 Yeah, it's interesting. So many people I meet like you and I don, I think we know how hard it's been for ourselves and we just want to make that easier for others and just so we can enjoy our kids. And I think that's why I really wanted to do this special. You know, I think so many people equate back to school for parents, especially mothers, frankly, is like, oh, your kids are back in school. 01:08:52:16 - 01:09:10:24 Speaker 1 You can take a break and take a load off. But when you have a kid with a disability, it's a whole couple notches up. And so I really would like to start with what do you recommend to ease that transition back into school? Dawn, I want to start with you because you have older children, but also you've been through the whole spectrum of it. 01:09:11:01 - 01:09:13:06 Speaker 1 So what what tips do you have there? 01:09:13:08 - 01:09:42:09 Speaker 3 So easing back into school, if I was to look at it from just the summertime and preparing for that first day of school, my answer is going to look very different versus preparing for that upcoming year, because I start that in the winter of the previous year. But looking at it from the perspective of from the summertime, what we have always done and what I found was very helpful was, you know, orienting to the space. 01:09:42:09 - 01:10:13:09 Speaker 3 Now, granted, I'm thinking of this from the perspective of having a blind child, but really, I think that applies to all, all children, you know, having a chance to go in, not necessarily on back to school night because that's busy is crazy and you have very limited time. But, you know, carving out that time when the school is more empty, quiet, just the teachers are in there working on their classrooms and having a chance to orient to where your classes are going to be, even in elementary school, if that's just one class, it might be a different class. 01:10:13:14 - 01:10:32:05 Speaker 3 And another thing that was always very helpful was arranging a team meeting with all of the teachers that were going to be involved for the year. That way you gave everybody an opportunity to meet each other, talk about supports that might be needed, help my child feel comfortable and ask questions that needed to be asked. 01:10:32:07 - 01:10:56:10 Speaker 1 I completely agree. For context, my son is going to be 13 and going into seventh grade. And yeah, those team meetings. Not only do I ask for one ahead of school, but in my son's IEP. I have so many meetings per year and I typically try to frontload those meetings because that transition time is difficult. So like maybe two meetings in the first month and another meeting in October. 01:10:56:10 - 01:11:22:13 Speaker 1 And just because any kid transitioning is difficult, you add a disability into the mix and those transitions are so much harder. You add intellectual disability into the mix and just finding a classroom can be hard. And so I totally agree. If you can work with that school team in a range of time to get your child in before the chaos, is there, it is so useful. 01:11:22:15 - 01:11:42:23 Speaker 1 Another thing I've tried to do too, sometimes that first day is so busy. The overwhelm component is there either request that he comes before the crowd or after the crowd. And with middle school, because you have this 20 minute window before school starts, they allow me to go ahead and take him to his homeroom so he can like avoid that chaos and yelling. 01:11:42:23 - 01:12:16:15 Speaker 1 I mean, middle school is loud and chaotic. And then one other thing before I go to IMAG, something that I've always done, I do sort of a resume for my son. So his team, since he has limited expressive language, I want his team to be able to know who he is. So certain things that might set him off, certain things that might help him if he's having a tough time, you know, his favorite songs that can help in transitions, helping him get water, reminders for the bathroom, who his siblings are, because the teachers, if they don't know you, they're not going to know who your child relates to. 01:12:16:15 - 01:12:38:08 Speaker 1 And if he's not able to say it, our children can miss out on a lot of those first day conversations. If the team isn't aware of the bigger picture of who this child is. So I think especially if your child has communication difficulties, really helping to prevent any sort of missed items so they can be involved is really important. 01:12:38:10 - 01:12:40:03 Speaker 1 Meg, how about you? 01:12:40:05 - 01:13:04:15 Speaker 2 I feel like everything that both of you guys were saying, I'm just nodding in agreement. First of all, my perspective is a little different because I have preschoolers. And so I recognized that parents, whether your student had a disability or not, because we were an inclusive classroom for many parents, they were handing their child off to me for the first time of handing them over to somebody else. 01:13:04:17 - 01:13:36:21 Speaker 2 And that's scary in general when you have a student with a disability. I think that that anxiety that the parents feel and that it's just it's so it's ten times more and so we worked really hard on setting to bring down that anxiety a little bit. I always open my classroom before the school year. I think it's important to request that they come in and see the classroom, see the space, get acclimated to the space. 01:13:37:01 - 01:14:00:21 Speaker 2 For example, I had a student one year who had various mobility needs, and so the way I thought I had arranged my classroom and the centers, I thought it would work well. And then the student came in and I realized, oh my goodness, they can't access the block center easily or the easel that I placed here is really preventing them from getting to their cubbies. 01:14:00:21 - 01:14:29:18 Speaker 2 And so we needed to make some arrangements. So it helped me figure out ways that we can even just adjust being so that so that the burden or not the burden, the fear of that access of not having access is gone so that we make our environment completely accessible. It gave the parents and I am I always invited the school team that be working with the with the students as well, including my peer educator. 01:14:29:20 - 01:14:49:20 Speaker 2 It gave us time to chat, to get to know each other and to start building that relationship. As an educator, I think one of most important things is to build relationships not with just our students, but with our families as well. And so it gave them a chance to get to know me a little bit better and gave me a chance to get to know them. 01:14:50:00 - 01:15:10:07 Speaker 2 I think, Erin, you were talking about giving the resumé. I used to have them fill out this form of what's the favorite food where you know, what shows to be like with their toys, like who lives in the house. Siblings names are one pager on the undetermined website can also be a great tool for that and you can fill it out as a family. 01:15:10:07 - 01:15:35:18 Speaker 2 So you can talk about here's the family strengths, here's our family's preferences, here's our family's interest. Then here are our needs. Like this is our need of how we need communication right now going into this, how we need to know that services are being met. I know that as a parent myself, like when I drop my child off to daycare for the first time, I needed a picture of my child smiling within the first hour. 01:15:35:18 - 01:15:54:03 Speaker 2 If I could get it. And so even just stating that, like I need at least one picture during the day so I can see my child is safe and is doing okay, and so you can fill that out on your student, but fill it out as a family as well, I think is really important. 01:15:54:08 - 01:16:17:04 Speaker 1 That is a really great idea. I think, especially with the younger kids, because you do need that context. And I also want to say you mentioned the word burden, Meg, and that is something that I talk about a bit because I think people outside that don't live our lives see our children as a burden. But I think in the context you used it in the context that we feel it our children are never a burden. 01:16:17:04 - 01:16:28:03 Speaker 1 It's the it's the lack of universal design, It's the lack of access, it's the lack of ramps, it's the lack of understanding society's the burden, not our children. 01:16:28:05 - 01:16:50:01 Speaker 2 Yes. Yes, it is. It's and it's more of the burden of how you guys are feeling of all this is one more thing that I have to worry about, that my child's not going to have the access that every other child in that classroom has. And so to take that burden of worry off of the parents, I think is important. 01:16:50:01 - 01:17:12:22 Speaker 2 I was recently in a training in which our presenter made and I wrote it down because I have been carrying it with me now, made a wonderful point of our children can be ready for anything that we put them in. It's the environment that we have to make sure that is ready for for our children, and that falls on us as the educator. 01:17:12:24 - 01:17:34:21 Speaker 2 And I love that. So that's making sure again that we are able to access the blocks and the cubbies that we have, everything that we need for all of our students to be able to participate and the support that they need and that we're making our families feel welcome and comfortable in the environment as well. 01:17:34:23 -...
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Does the ADA Need a Makeover?
07/25/2023
Does the ADA Need a Makeover?
An estimated 1 in 4 Americans has a disability significant enough that it impacts their daily life. When the Americans with Disabilities Act was signed into law on July 26th, 1990 it was celebrated as groundbreaking legislation that would grant access to jobs, schools, transportation, and public spaces. More than 30 years later, the ADA is showing its age. Advocates argue that while the ADA banned disability-based discrimination, people with disabilities still have to fight to be included. Long-standing policies make it difficult for many people to find meaningful employment, obtain sufficient housing, relocate, and, in some cases, get married. Rapid advances in technology can be hugely benificial for disabled people. But the lack of best practices and understanding of what accessible means for different disabilities often places the burden of access on individuals. It's time for a change. This is why we reached out to Matthew Shapiro and Lilith Holmes. Matthew is a public speaker, consultant, and founder of . Lilith is a high school student and fierce advocate who plans on going to medical school. Listen and learn about the challenges they see in their lives and their advocacy work and how we can make meaningful improvements. The Odyssey: Parenting. Caregiving. Disability. provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT: 01:00:07:19 - 01:00:39:16 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, The creator and host of The Odyssey podcast explores the turn our lives take When a loved one has a disability. Even though an estimated one in four Americans has a disability, so many obstacles that interfere with simply existing remain. I learned this immediately after my first child was born with Down's Syndrome in 2010. 01:00:39:18 - 01:01:07:17 Erin Croyle Instead of celebrating this beautiful baby, everyone around us, from doctors to friends to family, was saying sorry. Instead of joy, I felt devastation. I dug out of that pit of despair by first educating myself and later advocating for the human rights that we all deserve. That journey brought me here, working for the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:01:07:19 - 01:01:22:09 Erin Croyle This podcast explores the triumphs and the hardships, will revel in how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. 01:01:22:11 - 01:01:53:14 Erin Croyle The Americans with Disabilities Act is indeed both marvelous and deeply flawed. When President George H.W. Bush signed it into law on July 26, 1990, it was groundbreaking. The ADA banned disability based discrimination granting access to jobs, school transportation and public spaces. 30 plus years later, the ADA is showing its age. In fact, some advocates point out that the legislation failed to shift mindsets. 01:01:53:16 - 01:02:19:03 Erin Croyle So while there are laws in place, institutions and individuals have to be reminded to abide by them. And sometimes that can be a fight that folks don't have the time, energy or resources to take on. This is why I had to talk to Matthew Shapiro and Lilith Holmes. Matthew is a consultant and public speaker. Lilith is a high school student who is the epitome of self-determination. 01:02:19:05 - 01:02:27:07 Erin Croyle Both of them were born after the ADA came to be. 01:02:27:09 - 01:02:46:04 Erin Croyle Matthew and Lilith, I'd like to start with you telling us a little bit about yourselves. Given what we're talking about, I think it would help the listeners if you could also explain a bit about your disability for context. At the same time, reminding folks that somebody's disability is nobody's business. Matthew, let's start with you. 01:02:46:06 - 01:03:10:19 Matthew Sure. So I'm very excited to be here for a wonderful conversation on such an important topic. For me, I am in my early thirties and have known the ADA all my life. I was born in 1991, so I have grown up with the ADA. I am a person who is in a wheelchair due to being diagnosed with cerebral palsy. 01:03:10:21 - 01:03:35:07 Matthew Basically that means that the messages don't get from my brain to the rest of my body effectively. And that requires me to use a wheelchair to navigate this world that we all get to inhabit on a day to day basis. And yeah, I think your intro really hit it on the head, right? I think there is a lot of improvement that needs to be done around the area. 01:03:35:07 - 01:04:01:24 Matthew And I, I've often said that we one needed to have another disability rights movement, but to really needed to be intentional about updating it because we are currently in a world where the issues and challenges that were faced in 1990 are still issues and challenges today and 2023. We are not focusing on the next generation of challenges that are affecting the disability community. 01:04:01:24 - 01:04:20:05 Matthew You know, digital access, work from home, shortages in care, attendance like those were issues back then, but they're even more so issues now because we haven't addressed transportation, we haven't addressed employment that were issues when the bill first passed. So there's a lot of ground that I think we still need to cover. 01:04:20:07 - 01:04:54:07 Erin Croyle Absolutely. Before Lilith, we go to you, I want to just point out, Judy Heumann, amazing woman, amazing advocate who passed away recently when she was advocating for the ADA. She was citing Section 504, part of the 1973 Rehabilitation Act. And so her advocacy was actually updating legislation and guidelines that already existed. And so it's interesting to be having this conversation now and you mentioning having another movement because it makes total sense were overdue. 01:04:54:09 - 01:05:01:03 Erin Croyle But we can dive into that more later. Lilith, can you go ahead and tell us a little bit about yourself? 01:05:01:05 - 01:05:19:23 Lilith Hi, I'm Lilith Homes. I was born in 2008 and I have albinism, which causes a loss of pigment in my entire body. That affects my vision because I have nystagmus and I have no pigment in my retinas black light. So I have to use a white cane for accessibility. 01:05:20:00 - 01:05:20:05 Erin Croyle And. 01:05:20:05 - 01:05:43:22 Lilith I read Braille. My school is a public school, but I go to a magnet school for profoundly gifted students. And while that has definitely been an amazing experience, the shortcomings of the ADA are highlighted by some of my teachers' actions. I'm not going to go too deeply into that, but I definitely feel as the world develops, the ADA should develop with it. 01:05:43:24 - 01:06:07:12 Erin Croyle A moment ago I mentioned that disabilities are no one's business, but in order to get those accommodate and we do have to disclose our disabilities. So this is of course, a complicated question. Some disabilities are obvious, others are invisible. But a lot of times we apply for things without ever meeting somebody. You know, you you need to know what to disclose and what not to. 01:06:07:14 - 01:06:13:24 Erin Croyle And it's like walking a tightrope. Matthew, we'll start again with you. How do you manage that? 01:06:14:01 - 01:06:33:20 Matthew I get asked this question a lot, right? And it's always been a situation where I pretty much immediately disclose that I am a person with a disability for a number of reasons. Right. One. Like, let's say I'm doing a job interview, right? That job interview needs to be in a location that is wheelchair accessible. I'm a power wheelchair user. 01:06:33:22 - 01:07:05:20 Matthew I have to be able to access where the interview is taking place. And so it's always in my view that if I'm not telling someone that that is a need, then then I could be walking into a situation where, you know, like the interview is on the second floor and they don't have an elevator. I've also always found that if you disclose, you're sort of getting out in front of it and you're, for lack of a better way of saying it right, you're not making things awkward when you are all doing things. 01:07:05:22 - 01:07:44:20 Matthew I understand how people with invisible disabilities may not feel the need to disclose, but I always tell people as soon as I roll into a room, you see my wheelchair and you know that clearly I have something going on. You might not know what the specifics of it are and you might not know how it affects me, but I think it's really important to help put people at ease in having that conversation right away, you know, where they're not having to guess, they're not having to assume what my accommodations are. 01:07:44:22 - 01:08:07:19 Matthew And you are developing a rapport with either your direct report, if you're working at a job or someone else that is in a position of power to help navigate. All right, Matthew, we've had this conversation. What can we do to help? You know, you have made us aware that, like, these are what your struggles are in the workplace or in any environment. 01:08:07:24 - 01:08:24:09 Matthew What can we do to make that more easy for you? And I think without disclosing that, you know, that conversation can be more tricky. So I've always been very open minded and very direct in my disclosure of my disability. 01:08:24:11 - 01:08:50:16 Erin Croyle Matthew, I want to follow up with that, though, because you have a consulting company and the work you do is very much disability related. And so in your circle of friends, in the people that you consult with, do you see something different though? Do you see people denied interviews if they disclose? Because there are stories of that and reports of that happening? 01:08:50:18 - 01:09:14:05 Matthew Yes, I haven't seen that directly. But you're right that there are stories of that happening. A lot of what I get is how do we handle it Right? And it's a situation of, I would argue, being prepared to handle it both ways. Right. Be prepared for someone to disclose, but don't expect that they would write again. If you're using me as the example, I would disclose. 01:09:14:05 - 01:09:36:21 Matthew I don't know how Lewis feels. I don't know how the next person with disabilities feel, but I think as a as an employer, be prepared for both and be good at handling both so that if someone discloses, you know, how to deal with that and if they don't, you have the system in place to help guarantee that they are successful in that role as well. 01:09:37:01 - 01:09:58:00 Matthew Because I think the opposite of that is true as well. Like if they don't disclose and then they're struggling because they didn't disclose it, you know, does that is that a detriment to them and their ability to be able to do their jobs? Probably there's not a right or wrong answer to that question. And right like it varies person to person. 01:09:58:00 - 01:10:10:15 Matthew And that's that's an argument I would make for disability wide on any number of topics. It really does come down to communication and what the person's personal beliefs are. 01:10:10:17 - 01:10:30:23 Erin Croyle Well, as your situation is different, I mean, you're in high school, but I'm sure you face a whole sort of different dynamic. You're also looking ahead to the future. I mean, you're I assume college applications and all sorts of things. I would love to hear how different your experience is. 01:10:31:00 - 01:11:00:16 Lilith Well, my parents haven't yet kicked me out of the house and said, get a job. So I haven't yet had the job interview, but I have had to do interviews. When I applied for specialty centers and I had to tell them that I had a disability not because they needed to do anything special for me just for the interview, but because if I were to go to that school, they would need to have a system in place to help manage my accommodations. 01:11:00:18 - 01:11:24:16 Lilith But it seems just like everywhere in public, people want you to disclose your disability. They ask you more questions than a doctor would most of the time. So I think it is up to the individual. But disclosure of your disability is important to those who need to know. But if the random strangers walks up in public and goes, what's wrong with you? 01:11:24:17 - 01:11:35:00 Lilith Because they see me with my cane, Matthew with his wheelchair and they would just march up and go, What's wrong with you? Do you need help? I think that's not appropriate. 01:11:35:02 - 01:11:45:01 Erin Croyle Yeah. And that level of discrimination just exists in this weird vacuum where people are completely clueless. 01:11:45:03 - 01:12:07:21 Matthew Can I. Can I piggyback on that? To work with what Little said. I agree with what she said. Right. In terms of when people randomly come up to you and say, hey, what's wrong with you? What's your disability? I can make an argument for the opposite of that too, though, because I've always viewed that. And again, there's no right or wrong answer in this situation. 01:12:07:23 - 01:12:31:19 Matthew I've always viewed that as an opportunity to educate and to expose people to disability, particularly younger youngsters. And I've frame that. I've always framed that as like my grocery store story, right? Where a little kid will see me in the grocery store and you get to look all the time, right? They'll see me with my wheelchair and their eyes will get as big as saucers, right? 01:12:31:19 - 01:12:56:09 Matthew Because they're so surprised by this device that I'm using to navigate the world. Oftentimes, if I'm in a space where I notice that they're doing that and I'm in a space where they can be safe with it, I will let them engage with my wheelchair, right? I'll let them drive my chair a little bit. I'll let them push the buttons on the chair that are the lights and the horn and stuff. 01:12:56:11 - 01:13:22:11 Matthew But nine times out of ten, the parents will come up and snatch the child away before that interaction can really take hold. And I think that does a couple of things, right? It it reestablishes like stranger danger, which I understand. I'm not I'm not advocating for people to speak to strangers, but I'm open. I'm open, I'm honest, I'm very approachable. 01:13:22:13 - 01:13:41:11 Matthew And then it also reignites the stigma around disability. I'm like, Oh, that kid. The next time they see some disability, they're gonna be like, Well, I went and tried to talk to Matthew, right? And when I did, my parents got mad at me. So I'm not going to try and engage with that next person that I see. And I don't think that's the right strategy either. 01:13:41:11 - 01:13:54:13 Matthew Right? Because we need to be teaching inclusion. We need to be teaching that all people are valued. If we're doing that, we're setting up young people for misinformation, I guess is the right way to describe it. 01:13:54:15 - 01:14:22:23 Erin Croyle That is such an important point and it's nice to hear that you still have the patience and tolerance for that. I think it is easier with children and I think too, it's different with intellectual disabilities and disabilities where communication is difficult, it scares people. I find it really strange with my son having Down's syndrome, you know, when he was little it was cute and people looked at him with adoring eyes. 01:14:22:23 - 01:14:36:08 Erin Croyle But he's, you know, almost 13. And as he gets older, it's it's a lot of stares, which actually to me because it's quite a common disability and people stare and they're not kind stares. 01:14:36:10 - 01:14:57:09 Matthew Yeah and honestly that will get worse before it gets better right? I ran into that same situation when I got like when I was younger, I was the cute kid in the wheelchair and everyone wanted to push me around and and all those things. But then when I got into like middle school and older, like, I wasn't frankly, I wasn't necessarily invited to parties. 01:14:57:09 - 01:15:27:09 Matthew And so I had to create my own social circles and my house became the hangout spot. But now as an adult or I try to act like an adult on a regular basis, I still feel like I'm a kid at heart as an adult, right? Like, I have the tools and the skills and the, you know, my parents let my friends drive my van on a regular basis, so I go out with them whenever I want and I have ramps to get into people's houses so I can, you know, go hang out at different places. 01:15:27:11 - 01:15:31:16 Matthew But it changes. I think people need to be aware of that. 01:15:31:18 - 01:15:59:01 Erin Croyle I love that you said this because I want to talk about, like what perceptions of disability and accessibility are because it's one of those factors of an inclusive community that people don't really understand. I think unless you are part of the disability community, when you hear accessible, you think maybe wheelchair accessible and maybe Braille, but it's so much more than that. 01:15:59:03 - 01:16:16:05 Erin Croyle It's screen readers, it's using camel case. When you do hashtags for those that don't know, it's capitalizing the first letter of a word. So a screen reader will read it as a separate word and the hashtags are not legible. The screen reader without that. 01:16:16:07 - 01:16:19:08 Matthew See, I didn't know that. See, like I just learned something. 01:16:19:10 - 01:16:45:11 Erin Croyle Right? And well, so there are best practices and standards that we are not practicing best practices as a society. I often think, how can we change that, you know, as we wait? I don't I don't feel like there's a movement to update the ADA. What would you want to tell the world about accessibility and what it means to different people? 01:16:45:11 - 01:16:51:01 Erin Croyle And Lilith, since Matthew and I have been dominating, I would really love to hear from you first. 01:16:51:03 - 01:17:19:21 Lilith Oh, of course, I. I feel like a lot of people think accessibility detracts from something like putting your Facebook post in legible font importing image description somewhere in. It makes your posts meaningless. But I want people to understand that accessibility doesn't just benefit the person who needs it. It can also sometimes benefit people who don't necessarily need it, like some people I've heard of. 01:17:19:21 - 01:17:42:12 Lilith They use closed captions when watching TV, even though they are not deaf. It just helps them focus more. And I'm not saying that people without disability should go gung ho and taking up all the resources, like just standing in the wheelchair ramp like some people at my school do. But I just want people to understand that accessibility is important for everyone. 01:17:42:18 - 01:17:52:12 Lilith It is not just something we have to do to make the disabled person be quiet because that's just not very nice. And yet a lot of people say that. 01:17:52:14 - 01:17:54:04 Matthew Well said. 01:17:54:06 - 01:18:06:14 Erin Croyle Exactly what else do you experience at school, Ellis? I mean, what sort of things are you asking for that come across as as like a burden, if you will? 01:18:06:16 - 01:18:26:05 Lilith I wouldn't like to throw my school under the bus too much, but a lot of some of my teachers have been treating my IEP as optional or complaining about it or acting like it takes away from the whole class. If they write in a legible font and make their mouth bigger than an end on the screen. I mean, when they're presenting it. 01:18:26:07 - 01:18:40:10 Erin Croyle You know, it's funny, as is aware, as I like to consider myself, I didn't even think of font size. That is such a simple thing to adjust. And you find folks not wanting to do...
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Why We Need More Than Inclusion
06/09/2023
Why We Need More Than Inclusion
Reaching full potential. Becoming independent. We want these things for our children. For kids with disabilities, providing the assistance they need while trying to achieve these goals is like walking a tightrope. Help from even the most well-intentioned people, often is not helpful. It’s not just educators, parents unintentionally hold their children back as well. Dr. John McNaught has made it his life’s work to reshape how we teach students with disabilities. Early on, he realized parents need to be educated too. The lesson plan: SELF-DETERMINATION. He has witnessed first hand the transformation that happens when you give children the tools to make decisions for themselves. He has watched students move from self-contained classrooms, to general education classrooms, and onto college campuses. Take a listen and learn how powerful self-determination and meaningful inclusion can be when done right. The Odyssey: Parenting. Caregiving. Disability. provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. You can learn more about I’m Determined . You can read the research article Dr. McNaught’s mentioned about struggles students face because they don’t understand their disability TRANSCRIPT Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's Syndrome in 2010. His diagnosis hit me like a freight train. It's the most common chromosomal condition diagnosed in the United States. Yet so little is known. I was a new parent with a newborn son who was the first person I ever met with Down syndrome. I had so much to learn. So I started right there next to him in the neonatal ICU. Now I'm here working with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. Something a lot of families struggle with are the many roadblocks our children face throughout their lives. These roadblocks are in our communities, our workforce, our schools, even in ourselves. Thankfully, more and more bridges to independence are being built for our children. One of those bridges is a program called I'm Determined. This state directed project funded by the Virginia Department of Education. Works with youth, especially those with disabilities, to help them steer the course of their lives rather than being the passenger. It's all about self-determination. The program isn't just for youth, though. There's a family component that helps parents learn how to better listen to and support their children. And there are resources for educators as well. Joining me today is Dr. John McNaught. he was one of the first people in Virginia to implement student directed IEP meetings. His focus has always been bringing the student voice to the forefront. He's also the founding member and principal investigator of the I'm Determined Project. so. John, I'm so excited to talk to you. I've known about I'm determined for years, but last year was the first time I was able to attend the summit working with its communications team. I have to be honest, while I've known about I'm determined for ages, it's hard to fully grasp what it's about without being there. I would love to start with you as a founding member. Summarizing, I'm determined in a nutshell, So in a nutshell, I'm determined is all about opportunities to practice self-determined behaviors in an environment that supports those behaviors. And so it's that simple. I think a lot of times we where we fail with self determination is we do a little bit of an instruction and we toss a kid into an potentially unsupportive or scary environment. And what if we approached life that way? What if the first time you drive a car, you know there's no instruction or there you read the manual and then you just get in the car and drive by yourself with nobody there. And so it's all about scaffolding supports providing that environment, right? You become competent in your ability to do things like advocate or problem solve, and you do it around people who are, you know, supportive. And that gives you the ability and the confidence then to go try that somewhere else like school. So that's how you know, in a nutshell, that's how I would describe it. There's a lot of probably 10,000 intertwining pieces that make that happen. But that's the best case. John, before we dive in deeper, there's something that kind of always intrigues me reading your full bio, right? I wonder what brought you to this place professionally. And I ask this because until I had my son, I was totally ignorant, to the struggles and marginalization that people with disabilities face. And by the time my son was one, I was then immersed in advocacy. my son, he's just opened up my life in this spectacular, fair way. So I now see all the room for growth in our educational systems, our workforce, our community that I wasn't aware of. So I'm really, really curious if there was an event or a person or something that put you on this path. Yeah. So there are multiple things. So I'll start with, know, I grew up in a small town. It was a kindergarten through eighth grade school and everybody knew everybody and it was an inclusive model. our football coach, his son, was an individual with Down's syndrome. He's the same age as us. Chris was his name was in all of our classes he was the manager of the football team. And, you know, he was just one of one of the guys. Right. and then we graduated eighth grade and we went to regional high school. And my mom was actually a teacher at that high school. And I can remember, like after about two weeks, you know, I probably wasn't even in two weeks realizing, Hey, where the heck is Chris? I haven't seen him, you know, in two weeks. And I remember asking my mom and I'm like, Hey, where's Chris? And she's like, What are you talking about? I'm like, I haven't seen Chris, you know, since school started. And she's like, Oh, well, you know, he's in the special ed program. And I'm like, All right, well, where is that? And, you know, I mean, you know the story, right down the hall, down the stairs, around the corner, next to the boiler. And that just kind of stuck with me as just not being right, not feeling right. He was such a part of our everyday life. And then it's like you don't even see the kid. that's how it was for four years, you know? I mean, we you know, we tried to, you know, break him out, but inclusive education was certainly not a thing. And social inclusion was definitely not a thing. And so that that kind of stuck with me. And then honestly, I did some volunteer work in college at a place called the Virginia Home for Boys you know, it was just a lot of kids would with different stories, but some of it was behavior related. Almost all of it was disability intersectionality of disability and and some other issues. 01:06:31:12 - 01:06:40:21 Unknown And, you know, just kind of watching them at such a young age like, you know, teenagers just in this home, residential, no choice, no voice. And it just kind of brought me back to this idea of Chris and then I graduated college and I didn't know what I wanted to do. And so I decided to hike the Appalachian Trail from Maine down to Georgia. And in the middle of that hike in Virginia, I ran into this group of kids from this wilderness school, and they fed me an and remarkably, one of the kids from the Virginia home for boys that I had volunteered with was a student in this wilderness school who recognized me. And so we started having this conversation and it turned out this was a school for, you know, kids with ADHD, emotional disability, learning disability. And they were there because they also had some behavioral issues. So they were either there because they had a problem in school, their parents sent them or the court sent them. And I was like, this is this is interesting. And we just kind of hung out all night. And so I got off, finished the trail and I was telling my dad how I didn't want to my major, what my undergrad major was business. And I was like, There's no way I'm going to work in business. And he happened to see an ad for a wilderness school. I go on the interview and it's that school and those kids are still there. so I started a week later. did that for three years, living out in the woods and eventually decided that, you know what I want to learn more about special education, went back, got a master's degree, and then went into teaching. And my first kind of foray into teaching was I was given a room. So I was working was I got hired as a teacher of students with emotional disabilities, and they gave me my first classroom and it was like, you know, I don't know, an eight by eight closet with no windows. And an A caseload of 25, but I had seven who were seniors who were 100% self-contained I was just like, wait a second, we're supposed to hang out in this room for 6 hours together by ourselves. So I was like, This is crazy. I don't think we're going to do this. I will never forget this. I thought this was such a great idea. I on the first day of school, I handed them all their IEPs and they said, What's this? I was like, Get your IEP. And they're like, What's an IEP? Whoa. Now I can start getting a little bit nervous. And then, you know, back in the day it was called emotional disturbance. So they see their name, they see the word emotional disturbance, and they're starting to get, you know, what the heck's emotional disturbance? Well, then they start reading the present level. And in hindsight, I probably should have read those a little more closely through a different lens. So they were super negative, right? It was basically summary of every bad thing that kid ever did and every, you know, And so they're starting to get upset. And I'm like, Who wrote this? And I said, This is my first day teaching. I mean, look at the back page, see who signed it. Like, I didn't write it. So, you know, we sat we started having a conversation and these kids didn't know they were in special ed and they had been in special ed since third grade. They're now 18 or 17. It's fall semester of senior year. And so I talked to the principal. I'm like, Yeah, we're not going to do this self-contained thing. We're going to these kids, This is crazy. And, you know, we moved to an inclusive model with the idea that if there's behavior problems that I'm going to have to deal with it and we're going to, go back to the old model. If we have to. And, you know, I just watched trying to give these kids some choice, and they were just so unwilling to take the leap because they'd been told what to do forever. And now they're 17 and some new young kids in their talent on that. They're in charge and they're like, I don't think so, man. Like, I don't you know, I don't trust you. I don't know you. I don't even know what to do and how to be in charge. it was a hard year. We made a lot of strides. But you cannot in one year make up for six years of, you know, self-contained education or lack of education. And so I was a little, you know, like, all right, we got to change this whole model. And then that that same year at the time we had what was called IEP Day. And so it's April and I had like 27 on my caseload, including and those kids were all graduating. So they didn't they didn't need I didn't need to rewrite their IEP, but 27 kids every IEP do on the same day. And you know, for anyone my age or older, you'll remember pre computers, we had the NCR paper. So each sheet of the IEP was like seven pages thick and you had to write really hard. That's right. Right. So, you know, I wrote 27 IEPs, I'll do the same day. And so then the kids would come to school until noon and then leave because it was a half day. And then we were supposed to schedule 27 IEP meetings from 1 p.m. to 9 p.m. like in every special. The teacher in the school is doing this. And so I was like, This is crazy, but okay, this is what we do. So we're going to do it. And I told the kids, I said, Look, if you come to your IEP meetings, I know I knew from asking them they hadn't done it before. You come to your IEP, meet me, I'll buy you pizza the next day. And they're like, Yeah, yeah, yeah, we'll see you there. So I thought they were going to show up. And so the day comes, they leave the meeting start. I've got administrators just walking in and out of classrooms, just signing their name and leaving. I've got, you know, parents who, you know, some want to sit down and have a meeting, but some just want to sign it and walk out the door. And out of 27 possible kids, I had zero show up. this is like a bad origin story. I was so annoyed at those kids for not showing up. Right? And so I go to school the next day. I'm like, I can't believe you didn't show up. What is the deal? I was going to buy you pizza. And they're like, they're like, Look, dude, school ended at 12? So let me just get this straight. You want me to come back to school? That which I hate? You want me to sit in a meeting with a bunch of people? I don't like so I can hear about all the things I can't do? They're like, No, thanks. And I'm like, WhatIf you had looked at the IEP, I wrote, but they had no say in it, right? They didn't. You hadn't even seen it. And so in hindsight, not a big shock. They didn't show up. So I said to them, out of out of frustration, you know what? Anyone who's not a senior, you're going to write your own IEP next year. I'm just not going to do it. And I just happened to go to a conference a month later and met one guy out of Northern Virginia, and he had this grainy VHS tape of this kid participating in his meeting. And I was like, Oh, this is a thing like, we're doing it like this is a thing. And so the next year I started what I called back then, student led IEPs. we went for it and we did it it was awesome. It was a lot of work, but it was a lot of relationship building and it totally changed. It changed the kids, it changed the parents, it changed the administrator perspective of the kids. It changed the general education perception of the students. it was really just this magic thing that they just kind of took off. And my wife was also a special education teacher at the time in the same district at a neighboring high school. And she started doing it and it started taking off. this is all kind of pre undetermined. Right. I'm a term wasn't a thing yet. so that's a long way of around how I got to coming up with this thing called undetermined John I just have to say what really strikes me in my heart as a mother of a kid with Down syndrome and as a person who helps other families, you know, do this, it is just like, wow, that was one student. This all started because of inclusion with one student back in elementary school. And I just think, so often, parents still have to fight to have their kids included. You know, they you have a certain code and automatically you are put in a self-contained classroom, you're segregated. And that argument that we still have to make constantly as advocates, which is, inclusion is better for everyone. students with disabilities do as well, if not better, and students without do as well, if not better. And your story is like this beautiful example of what a difference it can make. Just seeing someone with a disability in the same room as you. I mean, that changed your entire trajectory. It did. I'm floored. I just to me, it speaks volumes to inclusion and then to hear the stories, about the IEPs, that does not shock me. I mean, we're still at a place where a lot of schools, you have to fight to have a student lead their IEPs. I mean, you know, I've been doing this now for 25 years you know, I'm finally I'm finally the old guy in the room who's like, we've been talking about this for 25 years. People like, come on, You know, I mean, I can remember thinking, oh, I'm never going to be able to say that, yet here I am. Like, we're still talking about getting kids involved in their IEP meeting, what's happening now we're trying to fight against, right, is that students participating in their IEP. It's it's awesome. It's a feel good moment, but it is not going to move the needle for the kid. Okay. It's a it's a once a year thing. What moves the needle for the kid is opportunities to practice being self-determined at home, in school and in the community on a daily basis. Right. And so that's where, you know, and you can still do still what? IEPs because it's fun and it's cool. Just can't be the only thing you do. And so it's all about those opportunities to practice. You know, I look at it now, you know, my lens now, 25 years later is, you know, I'm a researcher, I'm a teacher, but I'm also a parent of two high school girls, one of which has a disability, has ADHD, anxiety and OCD. And so I come at this through those three lenses. Right. And if you're only working on this stuff at school, it's not going to cut it, right? You've got to have families and teachers speaking in common language, working together, providing those opportunities. And I watched it with my own kid because, look, my my daughter is at the high school that my wife and I taught at. Okay. I know almost every teacher. I know all of the administrators. All right. She has a wonderful plan. I have all the privilege in the world. I mean, I am a white male with a terminal degree, and I have all the connections at the school. Right. You know how my kid gets accommodations? She advocates because when she wasn't advocating, it wasn't happening. And if it's not happening for me, right, then it's not happening for anybody, I can promise you. Right. Because if there's anybody's kid that should be getting it, they would be like, Oh, look, watch out for this guy, right? Make sure his kids are getting what they need, not the case. And so I'm like, all right, you know what? Then you're going to go do it. And luckily, you know, we've been raising her as a self-determining, self-determined child for so long. She was like, okay. and what a change. Like, what a change. Like, I haven't had to have one conversation in a year and a half with anybody because she's taking care of it. And that was my like, light bulb moment. Like, Wow, you got to put it in the hands of the kids. You do. And that's this is perfect is I want to talk about that more. I want to talk about I'm determined. And I think also the beauty of I'm determined, right, is one, it's an ongoing project. It's not just the summit, but also, you know, you work with kids who have disabilities, but those disabilities vary greatly. And I think a lot of times we talk about student LED IEP, but what about those students who don't have, traditional expressive language abilities, who have a very hard time communicating in a way that, non-disabled people understand? You know, my son is a perfect example. I have had him attend his IEP meetings since preschool I'm still working to have that participation be meaningful because that communication piece is just...
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How to Survive and Thrive in Motherhood
05/12/2023
How to Survive and Thrive in Motherhood
There is no crystal ball to give us insight into what parenting a child with a disability is like. But conversations with Lisa Richard sure come close. Lisa is a mother to seven children ranging from ages 18 to 30. Two of her kids have Down syndrome. Lisa's honesty and insight is refreshing. She is the first to affirm how hard the early years are and will NEVER tell you that you'll miss those days. She's seen first hand that while early intervention and therapy are important for our children, it only does so much. It's OK to do less, to slow down, to just take a moment to take the caregiver hat off and be a mom. Almost every parent I've talked to who has a child with a disability says that they are a better person because of their child. Lisa is no exception. She also sees how that experience has shaped the lives of her other children in amazing ways. And she shares how her children's disabilities are making her better at her newest role as a grandmother! This interview with Lisa is our Mothers Day gift to you. The Odyssey: Parenting. Caregiving. Disability. The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT: Speaker 1 (): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. Speaker 1 (): The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis was a shock. I had some idea of what motherhood would be like, but parenting a child with a disability, not a clue. It put my life on a completely different trajectory. Working with the Center for Family Involvement at VCUs, partnership for people with disabilities, we provide children and adults with disabilities and their families with emotional and informational support. Instead of returning to a newsroom, I now utilize my journalism skills to share stories about what it's like living with a disability in a society that has yet to accept, understand, and celebrate it. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, but we don't sugarcoat it for our Mother's Day special. I just had to talk to Lisa Richard. She is a mother to seven children. Two of them have Down Syndrome. Not only is she my colleague at the Center for Family Involvement, she is someone I have long looked up to. Most of her kids are adults now, and not once has she done the whole, you'll miss it someday bit. That is such a slap in the face for those of us struggling to just get through the day. Speaker 1 (): Lisa, you are the absolute perfect person to have on for this Mother's Day special. Your perspectives really grounded me through some frantic times, and given that, I wanna start with you telling me and our listeners, if you could go back in time and sit with your younger self ahead of having your first child, what would you say? Speaker 2 (): Well, first of all, Erin, thanks so much for having me. I'd really appreciate you inviting me on the podcast today. You know, it's such a significant question. I mean, the first thing I mean, is I would tell myself this journey is gonna turn out just to be more amazing than you ever imagined in ways that you never imagined. You're gonna have to learn a lot. You're gonna have to change your worldview on pretty much everything. But, uh, it's, it's gonna be okay. And it, it has been, it's been better than okay. I mean, my, my life now, um, despite it not turning out in any way that I thought it would is, is just really remarkable. And, and I owe a lot of that to the work that I get to do every day. And the children that I get to parent, Speaker 1 (): I feel the same way. I, I can remember vividly when my son was born and we didn't know, and all of a sudden, you know, the Down Syndrome diagnosis was there and I was so worried, you know, I just was like combing through everything I could read, and I was devastated. But deep down, I knew it was gonna be okay. I just had to ask people around me to give me space to mourn and grieve and, and wrap my head around the fact that this is completely different and this child is gonna need me their entire life. I mean, you are kind of in that point. Um, can you tell us a little bit about your kids and how old they are and where you are in your life? Speaker 2 (): Y you know, it was a very similar experience for me, Erin. I, I did not know. Um, Zoe is 30 years old now, and in a couple weeks she'll be 31. And so when she was born, she was our first child and she was the first gen child, uh, grandchild on both sides 30 years ago. This was considered to be a very traumatic event, and I'm not saying that might not still be for some people today, but back in the day, this was when the life expectancy was still 25 years old and children were not getting life saving surgeries that they needed when she was born. Um, my worldview and, and the one that I was brought up in was that, you know, your intellect is everything. Whatever you don't have in this world can be made up with trying hard and, and having smarts and, and really pursuing and achieving. Speaker 2 (): And so to have a child that sort of instantly deflated that worldview was so overwhelming to me, I completely shut down and was pretty much shut down for about six months. And I mean, that's a whole story in and of itself. They sent a nurse home with me. They were very nervous for me, but I was asked if they wanted, if I wanted to put Zoe in an institution, um, wow. At that point. And, uh, we had decided no, but things got increasingly better as I just started to fall more and more in love with her. I mean, admittedly, I would go out in public and try and hide her because people would say things to me and had some very cool things said to me when she was just a small baby. Um, but as I realized that I was being put in a different situation, I just kept thinking about how can I look at this differently and how can I look at her differently? Speaker 2 (): Anyway, I mean, that's a whole story in and of itself. And we've talked about, I ended up pursuing, uh, toys or us had just decided to start using children with disabilities. And I went to a place that said that they did modeling head shots like this, you know, cheesy place. We lived in Connecticut at the time, and you know, she was 18 months, and I just thought she was the cutest thing in the world, and I felt like the needed to recognize that our children were more alike than they were different. And they refused to take her headshot. They wouldn't do it. And we got into this big argument about it, and I just said, well, what would the process look like if we did do it? And they said, well, you know, they explained it. And I said, well, let's pretend she doesn't have a disability and do it anyway. Speaker 2 (): And I said, it's their grandparents' money. Just spend her grandparents' money. What's, what are you hurting? Of course, literally within two days we had gotten a call from toys and she was in the first ever catalog that they did. And it was <laugh> at the time. It was specifically for children with disabilities, but it was really groundbreaking at the time. And so that really started my advocacy in recognizing that if I spoke up and, and I was able to really possibly change a worldview that I felt like had been correct for a while. And I ended up, oddly enough, Erin, because I'm pretty much of an introvert, but I ended up with this group of women that I don't even know how it happened, but it was when I first recognized that if you were with people that were in similar situations, it could just quite possibly save you. Speaker 2 (): And I, I don't say that, you know, lightly. I felt like it did. And there were three other women in this group that had just had babies with Down Syndrome. And so just to, we all had different experiences. Some were having heart surgery or looking for it because their hospital didn't offer it to babies with Down Syndrome. They were possibly just being monitored. But having and knowing people that were like me made all the difference after a lot of, um, for us thought and prayer, we ended up deciding to have another baby, and then we had a, a third child after Delaney. We thought possibly our family was complete at that point. And then we made the decision to adopt a baby with Down Syndrome. We heard about a baby in Connecticut that had been left at the hospital after his parents found out he had Down Syndrome. Speaker 2 (): And, um, we had the good fortune to adopt Camden. But, you know, at this point, I don't want listeners to like think it was so rosy and exciting and like, I just loved being a mom to a kid with Down Syndrome so much. It, it was more about, um, just for me and for other people recognizing, gosh, their value and they're fun and their, but I was really nervous about it. I was terrified. In fact, in fact, every day I was like, why am why am I doing this? This was probably the most insane thing I've ever done because Zoe was relatively healthy and Tim had multiple health issues. And, um, he had a family that was very devastated. It was an open adoption. So I knew I was inviting like another family into our lives. Berkeley at the time was only eight months old, and so just even the thought of it, Zoe was only six and Delany was two and a half. Speaker 2 (): And, and so bringing this other baby, and there's a picture of me with all four of them on my lap, <laugh>, and I just look about as terrified and nervous as any human, um, ever. And so Cam seamlessly just like moved into our family. And then about, uh, three and a half years later, we found out we were expecting twins. So that was a real surprise. And, and then three years after that we had my daughter Sarah. So right now there's 12 years total between all seven. Zoe is 30, and then my youngest Sarah is 18, and she's just about to graduate high school. Speaker 1 (): Wow. When you were speaking, I automatically had two questions, but I wanted to wait. One what? I can't imagine, what would someone say about a baby? I mean, my son has gotten looks and it just makes my blood boil. But what, you've mentioned someone saying something about Zoe as a baby. Speaker 2 (): Oh, yeah. Well, again, because of the time 30 years ago, I had a woman approach me in a bathroom, uh, once at a restaurant. We had her, she said to me, um, that, uh, she hoped that if this were to happen to us again, we would make a different decision and not to have the baby. I just was like so shocked. I remember I didn't even say anything to her. I've never forgotten it and have gone through my head all the things that I would say to her now. But, you know, more or less, she just basically told me Zoe had zero value and no worth, and, and that I should, if possible, prevent it from happening the second time. That's Speaker 1 (): Shocking though, because 30 years ago is still, I'm not great at math, Lisa, so, but tell me, nineteen ninety, ninety two, Speaker 2 (): She was born Speaker 1 (): 1992. I mean, for you and I, okay, it's 30 years, but that still feels pretty modern to me. Yeah, Speaker 2 (): Right. No, I mean, yeah, we're not talking 1950s or sixties. Um, yeah, no, it was, and it even surprised me and people would just make comments under their breath, different things that they would say about her. I noticed it mostly in the first three months, but partially because I was listening. I mean, you know, after she was six months old, I didn't care, didn't listen, took her out, and was really proud of her and excited to kind of, you know, what, I almost treat as this new learning experience with her, like this opportunity. But I mean, I have grieved for her at all different stages of life. Mm-hmm. <affirmative> when her older siblings learned to drive, and I knew she never would, and they started to leave the house. And, um, I knew she wouldn't be leaving anytime soon when they started college. Um, just so many experiences that possibly some young adults get to experience with Down Syndrome, but Zoe did not and Kim did not. Speaker 2 (): And so it's, it's an interesting thing how you feel like you're in a good place and then all of a sudden a life event will happen that makes you realize how different your situation is from everybody else. And sometimes it's a life event in your own family, and you're excited for that child to go and do and learn and drive and get their first job at 16 that, you know, all my kids did. And those weren't, you know, the similar experiences for Zoe and Kim. And so that sadness, you know, in the back of your mind, there's always that little bit of sadness that I don't know that I wish things would've been different, but I wish the world was different for them, that people were more accommodating and wanting to hire them. And all the things that, you know, the difficulties that we face with them since they've become teenagers, I mean, we're, we're in a really pretty good place now. Um, but that doesn't mean tomorrow I might be sad all over again. Speaker 1 (): You and I have talked about this before and I think that most people listening who can relate to these situations, we do. We know those waves of grief. It, it's at the first diagnosis or another comorbidity, those dual diagnoses that we so often see with one disability or, I know I personally have a really hard time with my brother's son who's almost the same age as my son. And just seeing milestones and things that just will never be, it was harder earlier. Now it's easier, I guess. But it's interesting because when you mentioned finding space like a safe space with those friends who also had kids with Down syndrome, that's why I find myself gravitating towards friends that also have kids with disabilities because it's just such a different experience. It's a safe space for me where I know if we're hanging out with our kids and they do something that isn't, as you were saying, accepted by society, we can just not, we look at each other and we understand. Speaker 2 (): So true, so, so true. I was recently at a wedding with Camden. He was standing in the back with his headphones on just rocking out, which I, you know, would typically let him do. But because we were at this function, I knew there were people videotaping. And I just got that sense of like, my gosh, instead of letting him be, I was like, how do I make this better? How do I fix this? Like this worry that I'm putting other people out, which I usually don't feel, but this event, you know, it was a wedding and um, I walked up to him and, and he just was, you know, singing and <laugh>. I just was like, well, do I say something? Do I not say something? You know, I ended up kind of tapping him on the shoulder and told him he needed to be a little quieter. Speaker 2 (): And you know, again, it's just like, because I could see everybody staring at him and I don't know, there's just so many different experiences. I have a million of 'em. Some have been really interesting ones and some I would laugh off now, but it's been a real journey with the both of them. It's not easy, but I'm a better person. I'm grateful every day for what I've learned for the people I've met. I've just met all kinds of people I would've never known, just been involved in things I would've never been involved in. I mean, it's, it's truly been life changing, but, but it's been hard. Speaker 1 (): Yeah. And I wanna, I wanna dive into that a little bit because like I mentioned in our intro, you so often remind me and where we work, everyone has a loved one with a disability. You remind the parents who have younger kids, it gets easier. These years are hard. Don't feel like you need to look back on them as if they were great because they're so hard. So let's talk about those hards. I want to hear about the hards and also the loss of joy of parenting we get, because those societal expectations put on us as soon as our child's born, they enter early intervention, which is amazing, don't get me wrong, but in a lot of ways there's still this fix your kid mentality instead of Yeah. Instead of just letting them be. And you've often used the example of being able to see your oldest Zoe and then Cam, and how all the therapy in the world, it doesn't always matter. So I'd like to hear more about the hard and the societal expectations, but also how society makes us lose out on, on those joys. Speaker 2 (): So you're absolutely right, Erin, because I, I mean, I feel like even now we're, we're very deficit focused on how to fix and you know, we benefited from early intervention. I, I think one of the greatest benefits for me was not necessarily any therapies that I received, but just that they came in and talked to me and gave me great parenting skills, like skills that I was able to use with all the rest of my children. This conversation that you're talking about. So like, if you take somebody that's super achievement oriented and is always really focused on doing the best and working hard, and, and so I, when I had Zoe and when I sort of overcame the trauma and the shock of that, I was like, wow, this is just gonna be the most adorable, smartest child with Down syndrome ever. You know, which of course I look back on that now and just sort of see the ridiculousness of that. Speaker 2 (): But I mean, we did put Zoe into all types of therapies and she rode horses and I mean, we were just really, really busy and involved with her. And so you fast forward to when we adopt Camden, uh, I now have four children under the age of five poor cam, like, as far as like therapies, like they were so minimal what he, he did get early intervention, but no equine therapy, you know, you know, like all the different things we did with Zoe and there, I mean, it's just so many, anything that was available to her, like we signed her up, you know, I'm not saying I'm not glad I did that, but you're right, like this sort of loss of time of just enjoying my baby, like everything I did was focused on, I remember being a McDonald's and there was a baby drinking out of a straw. Speaker 2 (): I don't know what it was drinking, cuz I don't know why baby should be drinking out of a straw McDonald's. But I walked over to this parrot and was like, so excuse me, how did you teach your baby how to drink out of a straw? And I remember her looking at me and she's like, I just stuck it in her mouth and she like drank. It wasn't until I had my second daughter Delaney and was able to put a straw in her mouth and she just drank that. I'm guessing for you too, like if it's your first baby, you don't really know how behind they actually are until you have a typical child and you're like, oh my gosh, they're walking their, they just kind of do things magically it looks like because all the effort that I put in. But so back to my original, you know, story where Kim received hardly any of the therapies, he, for lack of a better term, just is, is much more capable of doing things for himself. Speaker 2 (): He's moving about the world. Like I'm thinking of all the therapies that we provided for her and the, and the minimal therapies that Camden got and yet his ability to navigate understand money, like all the things that we tried to get Zoe to do through these different therapies is just like far superior to her. It's, it's just so interesting to me and I feel like sometimes I lost time, you know, and I'm not anti therapy or anything, but I don't know that I would've been so focused as I was like using every minute to try...
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Siblings Day Special!!
04/08/2023
Siblings Day Special!!
Every April 10th our social media feeds are flooded with throwback photos in honor of Siblings Day. It may seem like a stunt to keep us scrolling, but it's much more than that. In fact, there is an ongoing effort to get the United Nations to officially declare it "International Siblings Day." Siblings Day hits differently when a brother or sister has a disability, especially one that comes with medical complexities. The dynamic looks nothing like the stereotypes we've come to know. In some houses, the big brother/sister role might be blurred. In others, a sibling might have to pitch in with caregiving. Try as they may, although there is always more than enough love to go around, it's nearly impossible for parents to distribute their time and attention evenly. That's why we're dedicating this episode to the siblings that we see go above and beyond every day. The young people joining us understand empathy and patience better than most adults. Take a listen, you might learn something. The Odyssey: Parenting. Caregiving. Disability. The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. TRANSCRIPT Speaker 1 (): Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis has taken my life on some unexpected and spectacular turns. (): This wild ride has brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is. But we don't sugarcoat it. The challenges are many, most of them because our society has yet to fully accept or understand disability. You know who does seem to get it though? The siblings. That's what I've seen in my years of being a mother and a disability rights advocate. And I see it in my own house with my son's younger brother and sister. In fact, my 10 year old a Emil is the catalyst for the Siblings Day special. A Emil's understanding and empathy of the human condition is greater than most adults. I know (): You may be aware of Siblings Day. It's observed in the United States on April 10th. And while a lot of us see it as sort of a social media stunt to post pictures, it's much more than that. Three US presidents have recognized the day, most recently, president Barack Obama in 2016. There is an ongoing effort to get the United Nations to officially declare an international siblings day. Now, when I think of Siblings Day, I think of the guests I have here today, Dean Rigdon, Neela Chatterjee, and a Emil Croyle-Sheire. All of these young people have a sibling, not just with a disability, but also with significant medical needs. I am so excited you're here. Welcome. Uh, I wanna say that I am sharing a mic, and so my son a Emil is a little fidgety, so if you hear a little background noise, that's it. I wanna start with each of you telling us a little bit about yourself, your age, your life, you know, maybe what grade you're in, what you love to do, share kind of your family dynamic for us. Dean, why don't we start with you since you're the oldest. Speaker 2 (): Oh boy, I thought you'd say that. Well, I'm Dean. I'm a senior in high school right now. I enjoy, I guess Dungeons and Dragons. I enjoy, um, swimming. I enjoy writing too. I'm a writer, family dynamic. Oh boy. I mean, Penny's awesome. That's my sister. I also have a brother, so they're 14 and 12, both younger than me. I am the oldest. Um, we didn't have Penny until I was about four, so I do actually remember that. Um, Speaker 1 (): Dean, can you just tell us, uh, I know Penny, I'm lucky. I wanted to have people here that I knew so I could kind of help with questions, so I know all of these kids well. So Penny is your sister and she has Down Syndrome and some other medical needs. Are you comfortable describing those? I mean, they're no one's business, but if you feel like you wanna give a little background, you can or you don't have to give any Speaker 2 (): Yeah, I can. Uh, even just recently there's also been a lot of developments. So she has Down Syndrome, which she's had for, you know, her entire life. That's how that works. And then, uh, she's also had, was diagnosed with Type one diabetes three or four years back, so type one diabetes. Uh, and more recently also diagnosed with, uh, celiac and Alors Danlos, like connective tissue disorder. So a lot of stuff recently that we've been dealing with, so. Speaker 1 (): Okay. And I wanna, we're gonna dive a little deeper into that in a bit, but I wanna go next to Neela. So just a refresher. So I wanna know a little bit about you, maybe what grade you're in, what age you are. Uh, if you could tell us about your new pup and your brother. And if you want your mom and dad, it'd be great. Speaker 3 (): I'm Neela. I turned 11 about a week ago. I'm in fifth grade. And um, my brother is Oliver. He's 15 and he was born with cerebral palsy. So he uses a wheelchair. He can't walk. He uses an iPad to, um, communicate and talk. And he is chin fed. In, um, August we got a new dog named Rocket. He's a Bernadoodle and he's six months old. And some things I enjoy. I like climbing, I like, um, I like drawing and writing and I like swimming and stuff. Speaker 1 (): Uh, next up I'm moving the microphone over to my son, a Emil, a Emil. Do you Speaker 4 (): Remember the questions or do you want me to repeat them? Can you repeat them? So Emil, I want you to tell Speaker 1 (): Folks how old you are, what grade you're in, the things that you like to do, and then describe, uh, maybe the family dynamic, your Speaker 4 (): Brother, your sister, your dog. Uh, my name's am Emil. I'm 10 years old in fourth grade. Uh, my hobbies are swimming, reading, a lot of reading. Uh, my brother Arlo, he was, he was born with Down Syndrome. I, I was born at least two years after him. Arlo is usually dis kind of disgusting. He lick my face unannounced. Uh, it's a lot of random stuff and he repeats movies over and over again. I'm not sure what else to say about Arlo, but Speaker 1 (): Can I push back on disgusting? Yeah, because I observe it. So I, I do see Arlo lick your face, but um, I also see you kind of like, have fun with them and laugh about it. So can you tell me more, a little bit about how close you and your brother are? Speaker 4 (): Uh, Arlo I, uh, are basically probably the most close siblings. My sister hates me and Arlo, she hates her guts. But, uh, me and Arlo have a lot more fun. We agree on more stuff and because I, I don't know what to say, either he actually has guts or it's because he doesn't really understand movies that well. I get to watch a lot of horror movies and he laughs at me when I get scared. So it's, it's fun with him around with him. Speaker 1 (): I'll just add to that. So Arlo has Down syndrome, but he also has, um, he's immunocompromised, so he has to have infusions at home to boost his, uh, antibodies. He has hearing aids, he has glasses. We see lots of specialists. It requires a lot of travel in a lot of patience from a meal. And in defense of the younger sister Maya, who's not here, Maya is eight and they are, yeah, they don't really take any prisoners, um, and do not put up with much. And uh, it's an interesting dynamic here. I wanna move forward Now, you know, Dean, you touched on something a moment ago and I'm really curious, you know, with you being the oldest in your family and you being four when Penny was born, can you remember how things changed? Can you remember the feeling in the house when, when that was all happening? Speaker 2 (): Yeah, actually I can, she was born like four days before my birthday, so she's the 23rd and I'm the 27th. And so we're right. So I remember walking into the kitchen on like the 23rd and it was our friend from across the street that was there. And I, I remembered that feeling of like, why are you here in the morning? Like, my dad's always here making like pancakes or something. And so he was there and he was like, I get a glass of water. And I was like, wait, what are you doing? And so she was back in the hospital with like jaundice for my birthday. So, uh, yeah, she's been in the hospital a couple times on my birthday actually, which she's been back with jaundice. Um, and what's the lung thing? Um, Speaker 1 (): Pneumonia. Speaker 2 (): Pneumonia, yeah, pneumonia. So that was uh, kind of scary, but yeah, I do remember that. Yeah. Speaker 1 (): And Dean, what's it been like being the oldest brother? Because your brother Toby, you said it so it's like you're each two years apart. What's it like in that dynamic? Do you feel like you're more responsible? Do you feel like you've lost any of your childhood because of the dynamics? I mean, I want you to be really honest here. Speaker 2 (): I think definitely I'm the more responsible one for sure. I don't mind. Um, I kinda like it. It's uh, we still have fun. I still get to enjoy being, you know, a kid. I'm never gonna lose that for sure. But like, I guess me and Toby have always kind of had a, you know, we're the brothers kind of dynamic duo thing and Penny's always had different interests than us, so we certainly made her more. We, we've, she's been, she's done a lot of things that have been modeled after us, I guess. Speaker 1 (): That's really cool. Nea, I'm gonna move on to you and I'm gonna ask this question. I, I wanna say like, I have the perspective of a parent I see in my own house with a meal and Maya like sometimes the expectations that I have to put on them, like the responsibilities because of their older brother's needs are a lot for a younger sibling. And so Mila, do you feel like you have to be put on the back burner when, when your brother's needs are many? Can you talk about that and how that feels and, and what you experience? Speaker 3 (): Yeah. Um, I don't know. My brother needs like, so much like, um, he like, um, he's like a lot to take care of. He's so much work and my parents have to be like with him all the time. So that's kind of hard. Like I don't get a lot of time with them and like, I don't know. Yeah, like I feel like a lot of this stuff is about oie. Speaker 1 (): Mm. Thank you Mila. I know that's a hard question. Um, and I can say as a parent that it's hard for us because we know that it's often not really fair. The amount of attention we have to give to one sibling as opposed to the other. And we wish it could be different. We really do. Mila, tell me if there's one thing in this world that you could change, if you could wave a magic wand, what would you change to make your life easier, your brother's life easier, your family's life? Easier. Speaker 3 (): I would wish it was like, um, easier for him to actually do stuff with other kids cause um, and like get more like help with nurses and stuff cuz we don't have a lot of those and that's kind of hard cuz my parents have to do so much. Speaker 1 (): Yeah, the nursing shortage and the medical staff shortage and that is a constant struggle and it's been made worse from the pandemic Dean, I know, you know, your sister's needs are many and I know because I've been with you that you've had to help monitor her blood sugar and do things. How does that feel for you? Is that a level of stress for you or do you just kind of go with the flow? What's that been like? Speaker 2 (): I always go with the flow. That's kind of my personality. So I mean I, I definitely help Penny a lot. Like it's, it used to be like when she first got diabetes it would be hard for them to leave the house at all like ever. And so I definitely had to learn how to take care of her diabetes and how to, you know, take care of a lot of the issues that she has so that they could, you know, leave and go get groceries while my dad works or something like that. So now my mom feels a lot more free to go to meetings. Uh, there's a lot of stuff that, you know, she'll be able to leave me alone with Penny for sure now, but every time there's kind of a new diagnosis, there's a little bit of a period of learning. Speaker 1 (): Absolutely. You know, Emil, I'm not even sure you remember a lot of the stuff with your brother. I'm gonna bring the mic back down since we're sharing, but I remember a, uh, a Christmas where Arlo had pneumonia and he was hospitalized because of his asthma and issues. Right. How do you feel Arlo's health issues impact your life? Speaker 4 (): Honestly, it's hard. I feel like I've lost a lot of time because of Arlo. I've been, honestly, almost every month I have to go on this. I have to drive with my mom and Arlo and Maya and dad. My dad, uh, two hospitals in Boston, Syracuse we're basically all over the place. I mean, I enjoy being with Arlo and his personality because he has all his disabilities. His personality is different from a lot of people. Speaker 1 (): Emil, you bring up something that I wanna ask actually. You know, you're talking about other people and being different. How different does your life feel Amil than those of your friends? Do you feel like your friends have a very different life because their siblings don't have a disability? Can you talk about what it feels like when you go to other kids' houses? Speaker 4 (): It feels kind of weird to go to my friend's houses, uh, and hang out. But the reason is I go in there, they each, I mean everyone's unique. Every family is unique because of Arlo having a disability and world down syndrome day is so close. My teacher starts talking about it. And one of my friends when I didn't raise my hand and we were talking about down down syndrome, he told me to raise my hand and I don't, I don't blame him. I would've said that to him If his brother or sister, if he had a sister at a disability, I'd tell him to raise his hand too. But here's the thing, I feel, I feel kind of weird when people look at me in my school and think he probably knows everything about Down syndrome. I don't know everything and people kind of expect me to. Speaker 1 (): That's interesting. Like you don't wanna be the expert on your brother's disability. Yeah. Is that what I'm hearing? I'm not a doctor. You're not a doctor. I mean, Mila, do you get that from people sometimes? Can you talk a little bit about how that feels? Speaker 3 (): I don't get that a lot. Um, but sometimes I do. Just like Emil said, when people are like talking about my brother, they're like, oh, hey look, she has a brother with a big disability. Let's ask her about that. She probably knows all about that. Speaker 1 (): That's interesting because there's uh, a very powerful expression in the disability community for people with disabilities, which is nothing about us without us because a lot of times people with disabilities are left out of the conversation. And I think what's interesting hearing from you and Dean, I can't wait to hear what you have to say as well, is that maybe as parents and then also teachers, the adults in your life, rather than asking your sibling or finding a way to communicate with your sibling who has difficulty communicating in a traditional way, they turn to you. I mean, what is, is that what you kind of get Neela? Speaker 3 (): Yeah, sometimes. Speaker 1 (): And is that frustrating? Speaker 3 (): Yeah, <laugh>, it's Speaker 1 (): Dean, what's been your experience with all these things? Speaker 2 (): Uh, well I know for you guys it's a little bit your, your siblings are older than you. So I, there's no like, I'm the first one in the grade to meet all the teachers. So they don't really, they don't have a previous experience even with, um, even with Toby. Like teachers will call him my name instead of, instead of Toby, they'll be like, oh, it's Dean. And then they'll realize that I'm in the high school already and Toby was in middle school. And so I think a lot of that is just like, it's your older sibling and they've been through that already. Like they've been through the grade, they know the teacher or they know or the grade, the teachers in the grade know them and then you kind of get a little bit of, oh, they must know a lot about this or they have some kind of, you're not a blank slate essentially. Speaker 1 (): I feel like there's a little bit of pain with Mila and a Emil and I get that and I'm really glad you two are opening up and I wanna hear, I don't wanna jump away from that and jump away from things that are uncomfortable. So I wanna, I wanna just see if there's anything you wanna add about your experience that maybe I'm not touching on. Uh, and am Emil, I'm your mom so this might be uncomfortable, but what do you think your biggest frustrations are? Either in general or with your parents Speaker 4 (): In general? Arlo actually only has, I'd say two best friends. And it feels kind of sad to me how he has to deal with some people when they exit the middle school. They look at him funny. Like I, I don't think my mom notices it, but uh, I definitely see people looking at Arlo. It, it makes me feel bad for him and I wish I could just change that. Like people would look at him with smiles and ask to be his friend. But I mean that's how our world is. But anyways, Speaker 1 (): Emil, I'm glad you pointed that out because I see that every day and it breaks my heart and I've seen it for years because you know, all of the siblings we're talking about today have visible disabilities. And so I'm sure every single one of us has experienced those stares. Not of love, but of like curiosity but sometimes of like not coming from a nice place. You know. Dean, you're nodding. Can you share some of what you've experienced? Speaker 2 (): Eighth grade girls are mean dude, eighth grade girls are mean. Um, I know it's really hard for Penny to kind of, she's very friendly and very open so I know she has a couple of very good friends. Um, and you know, they're wonderful people and I know they have a lot of fun together. But, um, I think sometimes parents don't hear everything that's kind of said or like, you know, cuz I'm closer to the age of all the people that Penny hangs out with and I know sometimes it's hard for a parent to kind of understand or to to have the kid be doing what they would normally do next to that. My siblings parent, right. Um, I see more, I feel like I see more than maybe my mom or my dad will. Speaker 1 (): Dean, what do you mean by that? Like, have someone see like what, what are you seeing? Speaker 2 (): Sometimes people think it's funny when Penny gets mad or something and they'll just do like little antagonistic things. Uh, Toby likes antagonizing her so he ends up doing a lot of, you know, he's the, he's a middle child and so <laugh>, but you know, she, she's used to responding with a ah, don't do that. Um, or something like that. Just, you know, come on Toby. People think it's funny when she gets mad or something and so they'll do antagonistic things that get her in trouble and then it's not really her fault and I just, I don't know. I don't think that's fair. Speaker 1 (): No, it's not. And I wonder, I mean do you share things with your parents or do you filter them to like save them from heartache? Speaker 2 (): I don't think there's much they can do besides do what they're already doing. Like I think if I was gonna change something in the world as maybe to the previous question, it would just have everybody be educated on how stuff like this works and how...
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Why Are Summer Camps Inaccessible for So Many Children?
03/28/2023
Why Are Summer Camps Inaccessible for So Many Children?
Summer camp sign ups are well underway across the country. Parents and caregivers are scrambling to secure spots so they can work while their children make new friends, learn new skills, and have fun. It's not so simple for the estimated 17% of children ages 3 through 17 who have one or more developmental disabilities. If a child needs extra support or even the smallest modifications for activities and access, the options become extremely limited and, in some cases, obsolete. Jessye Cohen-Filipic and Cindy Lui are mothers, advocates, and professionals who have ran into road blocks both getting into and keeping their children in summer camps. They shared details of their struggles with The Odyssey. Even better - they shared strategies for navigating systems, how advocates can support one another, what needs to be done to create meaningful change, and their hopes for the future. Listen in and share your summer camp struggles and solutions with us. Perhaps there's a follow up episode in our future ... The Odyssey: Parenting. Caregiving. Disability. Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. Check out Cindy Lui's TedX talk! Inclusive Camp mentioned in episode: Melwood's Camp Accomplish TRANSCRIPT: Speaker 1 (): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. (): The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down Syndrome. Even though everyone knows what Down Syndrome is, we still don't know that much about it. And as a new parent, I knew absolutely nothing. My journey weaved its way here, working with the Center for Family Involvement at vcu U'S Partnership for people with disabilities. We provide families with emotional and informational support. This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, while calling out the inequities that our children face, living in a world that still fails to understand and embrace disability. Today we're talking summer camp, that rite of passage, so many kids remember fondly that chance to get away from home and be with your peers, either for the day or overnight. (): For many adults, though, summer camp is a necessity. School is out, and we need childcare for many, many weeks because we have to work and pay the bills. Even if families are lucky enough to have someone at home. Summer is this seemingly endless stretch of unconstructed time you have to fill. And even the most patient and seasoned child whisperer needs a break from time to time. The offerings for summer programming in most areas are many, for many children with disabilities, though it's Slim Pickens with sometimes no options, it's a heartbreaking reality that many parents and caregivers face and something both of today's guests understand because they live it too. And so do I. So we're going to get into this. Joining me is mother advocate and psychologist, Jessye Cohen, philippic and mother advocate and social entrepreneur, Cindy Lui. Cindy and Jessye, I'm so happy you're both here. We've talked about this over the years, and now we're able to really kind of tear it apart. I'd like for each of you to share some of the biggest challenges that you face. Uh, Cindy, can we start with you? Speaker 2 (): Yeah. Hi everyone. Thanks for having me on. Um, I have to apologize in advance. I'm getting over a little cold zone if I sound a little stuffy. That's what it is. I am also part of the Down Syndrome community, and I have, uh, two children. You know, I think I begin the advocacy advocating for my, my daughter who has Down Syndrome, but recognizing that if she doesn't have equal access and equitable opportunities, it also affects my other child, my son. So specifically to summer camps. Your intro is so, it's so touching and moving, and it's also so painful to recognize that these, the summertime joys are not inclusive or not by design inclusive of, of kids with disabilities. And when it comes to education, for example, we talk about multi-tiered systems of support. It's really not that hard to implement that for summer camp, but I think many camp organizers assume that just allowing a parent to bring an aid is inclusion. And that really doesn't, doesn't really shift the culture or the mindset of the campers of the community integration approach, the holistic child approach. I've honestly decided not to do summer camps anymore. Um, because between the private ones and what's offered at Parks and rec inclusion is still the burden of the parent, and that's really hard. Speaker 1 (): Yeah. And you know, we talk about burden here often, and I always wanna clarify, and you said it perfectly, but the burden is never the child. The burden is the societal structures that we're up against. Jessye, how about you? Speaker 3 (): Yeah, thanks for having me. And you know, I know we're here to talk about camps and, and I will work hard to focus on that. But as I've said to you many times, right, this blurs, the lines are blurred between all forms of childcare and all forms of recreation. My daughter is nine and a half, and we had our first foray into summer camp when she was five. Again, out of necessity, she was in summer school. And summer school ended at, I think, noon at that point. And we needed something for the afternoons and literally fell apart on day one at the only option we had available to us. And, um, yeah, so, so echoing what Cindy said. So I don't find that there's even sometimes an opportunity for inclusion that, that I bear the burden of, right? So I find some places aren't even open to my bringing an aid, and that's if I can find an aid and pay an aid and re you know, retain someone to work. (): But, um, I also have been really struck recently by what I I see as performative inclusion. So camps that specifically talk about being inclusive, and then I listen to their spiel and it says, we're really designed for the kids with a mild classification, or we're a camp for kids with autism who don't have any difficulty regulating their emotions. That speaks volumes to me about what they're looking for and about the ableism inherent in their criteria. And the other piece, I know we'll get into this, um, you know, my, my kid really wants friends. She, she near needs socialization. She needs socialization outside of the academic environment, which is challenging for her. Um, she's desperate to do it, but what I'm finding is as she gets a little bit older, there are camps that are inclusive if I'm willing to travel and pay a lot of money. But they're overnight camps. And I don't know that my child will ever go to an overnight camp, but she certainly can't go to overnight camp before she's had an opportunity to do a day camp. So I'm grateful that those places exist, <laugh>, but I can't possibly make the leap from zero summer recreation to sending my child to another state overnight. It has been a, a perpetually frustrating experience. Speaker 1 (): And Jessye, you you point something out that I, I always think is interesting because there are in some places, camps specifically designed for kids with disabilities and sometimes more significant disabilities. I know that I'm personally, like I have a really hard time with that because that is still segregation. And whenever you design special programming, you're setting everyone up to continue that on, not just the expectations for our own children with disabilities who think like they only belong with kids, quote unquote like them, right? But their non-disabled peers are not then exposed to what people are like outside of the vacuum they're put in too. And if we keep perpetuating that, and if we keep doing this, then what is gonna happen to our workforce? How will we fully include people with disabilities if we start segregating them in summer camp and like we do in our schools with, you know, self-contained classrooms? (): But it's more than that part. I, I'm, I imagine you, but I'm not sure if our listeners have ever listened to or read N p r Reporter Joe Shapiro's report back from 2018 about people with disabilities and abuse. It touched on the sexual assault epidemic that no one talks about. I'll put the link in the description for this podcast, but everyone has to read this. And one thing that it pointed out is that people with intellectual disabilities are the victims of sexual assault at a rate seven times higher than those without disabilities. And I remember early on in my son's life, he's 12 now, my oldest has down syndrome. I have two younger children who are both non-disabled. So early on in my son's life, I was going to all these trainings and conferences, and I remember one of the speakers talking about, um, sexual abuse in our kids. (): And he said, I want you to think about, not if this happens to my child, but when, and so when I think about summer camps or, you know, special programs designed for children with intellectual and developmental disabilities, I just, you know, I know that this might not be fair, but I think of them as sort of magnets for predators because people are aware that children with limited traditional expressive language are often an easy target With all of that, I'm curious how both of you feel about camps designed specifically for kids, um, with disabilities. Cindy, what are your thoughts? Speaker 2 (): Um, first I wanna go crawl into a ball and, and, uh, <laugh> have a cocktail because it is, uh, it is something that keeps me up at night. And then my advocacy work related to public safety and even education through K-12 on sex ed. It's an area that I, that that article that you pointed to specifically sits with me every day. So it, it's interesting too, because I can't help but mark the time in our, in our history where Judy Human died on March 4th and her whole revolution, the civil rights movement started with a camp on all of those individuals started going to a camp that was primarily for disabled individuals. But I think the difference is that it was also run and supported by individuals with disabilities cut to modern day. It certainly is a challenge because, you know, I always think of our kids having, having a long ramp of education and learning, and that involves socialization as well, understanding peers, understanding the sophisticated dance of peer relations, understanding their own emotions, and they are human beings and have natural sexual desires as well. (): But understanding what informed consent means, which could be a challenge for the non-disabled individual. Mm-hmm. <affirmative>, I don't have any solutions, but I, I, I guess I, it is, it is a concern. And in that case, it sort of boils to access and privilege. If you have the privilege to be able to afford a trusted support person, caregiver behavioralist aid to be with your child, that is a financial privilege. But it also, the other side of it is access. Would there be a camp that is accessible even with all those systems of support? And again, the financial burden is on the parent. Um, you know, and Jessye mentioned something about performative inclusion, <laugh>, which kind of got me on this, this summer camp thing. Um, and if I can just share a quick story of my experience of pre Covid summer camp, please. It was, it was a private camp that I went to, and within the hour they called me and said, you need to come pick her up. (): And I said, why? Well, she's not going with other campers. Okay, well, what have you tried? Is it a physical inability because could we put her in a, in a trolley that other kids like this is the part of inclusion that's really not that hard. I she physically not able to keep up because she's not running yet, but could she be in a, a scooter that other kids would love to push and take turns sitting in? That would be inclusive solution. So I give that camp at least credit for trying. The second camp that I went to or was looking into to Jessye's point about performative inclusion, made all these statements on their website about social justice and the kind of training and d e I and, and I'm sure everyone in the room listing, like noticing when it's d e I work that doesn't include individuals with disability. (): It's not d e I work mm-hmm. <affirmative>. And so I actually called and I said, I'm slow to share that my daughter has Down Syndrome, because that instantly closes doors to conversations. I said, you know, she does have a disability, but I wanna talk about how we can support blah blah. Three phone calls. The last one was returned and the, the camp owner said, we can't support her needs. And so he didn't even have the courage to talk to me directly. He went through his admin and I said, how does he know what her needs are? He's never met her, he's never met me. We've never been on campus. And when they said that, I said, great, can you put that in writing and send that to me? And when people don't wanna put it in writing, they know that they've done something wrong. Mm-hmm. (): <affirmative>, and I'm not a litigious person, but thank God. And you know, the ADA A was passed, and we're talking about Judy Human a little bit. I filed a complaint with the Department of Justice. The Department of Justice felt that I had a viable complaint and offered to mediate, but it depended on the camp if they wanted to engage in that mediation. And they refused. And here in the states, the, the American Camping Association has put out guidance that there is no such thing as grandfathered in from the a away from the a d a, there's no grandfather clauses. So you do have to be compliant and work and discuss reasonable accommodations. But that clearly didn't happen because of ableism and bias. It's not a kind of camp that I would wanna send my child to when it truly is performative. And they're talking about how well they train, but they're not including disability in that conversation, or they're not even willing to engage in a parent who's willing to be collaborative. Speaker 1 (): Jeff. I think that's more common than we realize. And I know that Jessye and I have talked about that, in fact. So Jessye, I'm not like I have a question posed, but we have this conversation, so I want you to go whatever direction you're feeling now and what you say next. Speaker 3 (): So I, I realize there's one important piece of my personal history that I think I should share. And it leads to my next comment, which is that I'm ambivalent about, about specialized, specific camps. Um, I agree with everything that has been said, but I dream of the day when my kid could go to a camp where she'd meet other kids like her in some ways, <laugh>, and they have a specially trained staff to kind of get her, um, if I think about it from a, a neuro divergent lens, like I would love that. But, but the important piece of my history that I'll share, um, so I was someone for whom summer camp was not a great personal experience. Day camp was fine. Overnight camp was a long history in my family, and I wasn't great for me. But I spent the very first summer of my life, uh, living in a closet of a cabin in, um, upstate New York. (): My parents as, um, I guess during my, my parents' graduate schooling. And after they started a camp specifically for kids in this, uh, metropolitan area, who essentially kids who were classified, this was the early mid seventies classified as emotionally disturbed. We, of course, have luckily moved on from a lot of that, but kids with significant behavioral challenges who also were at risk of removal from their families and had involvement with various service agencies. So my parents, along with their friends who were these eager graduate students in psychology, started this program so kids, those kids could get a camp experience that was nurturing and positive and loving. So I grew up along with a couple of peers, like literally sleeping on a shelf in a closet so our parents could run this camp. The fascinating thing that they did at the time was that they then provided wraparound services through the course of the year. (): It was really a very early model in sort of community psychology, which wasn't happening. And so they, they said, that's great. We can get these kids out to camp, but what's gonna happen when they go back to their schools and their families without support? And so they started providing some wraparound case management and support services and, and again, really sort of informed the future of, of good community psychology work. And my parents moved away from the area, but there are people, my parents' peers who are, you know, in their seventies who are still in touch with campers from that program 40 something years later. So that, for me was a very early model of a specialized camp that really was there to meet the individualized needs. And for those kids at the time, all of their other experiences were, were integrated. There weren't any other options. (): And so it felt like a, a haven. So I guess in some ways I have this vision that someday my, my kid could have that haven could have a place. Um, but you're absolutely right that segregation is not inclusion. And you know, Cindy, when you were telling that story, very different experience for different reasons, but the same thing an hour into camp, you know, you gotta take your kid. It was so very clear to me that they just understood nothing about my child. But I've been told similar things like all, you know, and, and unfortunately, sometimes I don't play my cards close to my chest. And I'll say, you know, okay, my daughter has an autism diagnosis, and I'll hear immediately, oh, we can't meet her needs. Well, you, again, you don't know what her needs are. First of all, you have literally just heard a diagnostic category. (): But even that diagnostic category is a spectrum. There's a reason we talk about it as a spectrum, but you know nothing about my kid. Don't tell me that she needs to be accompanied by an adult at all times in the pool. She taught herself to swim when she was three. You know, or tell me that, oh, well, if the aide that I'm ready to send with her isn't there, she can't come on that day, that is not inclusion. Or, oh, we won't have room on the bus for an additional person for the field trip. So she might not be able to go on the field trips unless she's transported separately. These are inexcusable conversations, particularly in this day and age. And the financial burden is real. Erin, you and I have talked about this. My current frustration is with extreme privilege that comes with my professional background, my education, my advocacy, and the resources available. I actually have access to a lot of money to pay for these services. And I can't find anyone to take my money because I can't find a staff person, or I can't find a program. And again, I say that I am extremely fortunate that I have this privilege, but it's a privilege that I can't access because I cannot find ways to give people, Speaker 2 (): If I can interject. It often helps non-disabled people to really understand the level of bigotry and discrimination ableism when we just take out, my daughter has autism, down syndrome, cerebral palsy, you name the disability and you replace it with, my daughter is black, my daughter is, um, Chinese. And the example that, and the experiences that we both all have lived, the three of us. And I'm sure to the listeners who can relate that if you replace any disability with any...
/episode/index/show/8aaf3aa3-b129-477e-a3dc-410c47eff9f9/id/26366592
info_outline
How Having a Child with a Disability Transforms You with Jamie Bruen
02/28/2023
How Having a Child with a Disability Transforms You with Jamie Bruen
The moment you become a parent, your life is transformed forever. For parents of children with disabilities this transformation is on a whole other level. For some of us, it's a defining moment where our life is split in two: before and after. Because we're not just parents anymore. We're caregivers. The end to that caregiving role isn't after high school or college or when our child moves out. It's for life. And the heartbreaking reality is that we're caregivers until we die or, the unthinkable, our child dies before us. That part is rarely talked about because it's so painful, but also because the joy and honor of being our child's caregiver overshadows it. Jamie Bruen bravely opened up to The Odyssey about all of it. Who she was before she was a mother. The trauma of her son Liam's birth. The amazingness of who Liam is. The beauty of the family and community that surrounds her. And the evolution of her existence from a war veteran to an adaptive physical education teacher, to a mother and caregiver, and now a professional baker. Her journey is a powerful one, her story is worth every second of this nearly 90 minute listen. Join us. The Odyssey: Parenting. Caregiving. Disability. Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. You MUST take a look at Jamie's cookie and cake creations!! Facebook: Instagram: Email: If you want to learn more about Jamie's nutrition coach, you can check her out here. BONUS: Anyone who mentions the podcast gets a discount! Tobaccology, the cigar shop Jamie raves about: Maggie Austin's sugar flower immersion class: The Make-A-Wish Foundation: TRANSCRIPT: Speaker 1 (): Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down Syndrome. Arlo was the first person I met with what is the most common chromosomal condition in the United States. I was ready to be a parent, but I wasn't ready for this. No parenting book. No wisdom from the elders in my life had any insight on what it would be like to have a child who needed support for the rest of our lives. My search for answers and support brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. We provide families with emotional and informational support that is so desperately needed. Our podcast digs deep into the joys and hardships we face. We're gonna celebrate how amazing this odyssey of parenting, caregiving, and disability is, but we're not gonna shy away from the tough stuff either. And today we're doing all of it with our guest who happens to be a family navigator with the Center for Family Involvement. And someone I'm lucky enough to call my friend Jamie Bruen. (): Jamie, rather than formally introduce you, I want you to tell us who you are. Your life story is so compelling, and I've always been in awe of you. And like many of us, you're almost two completely different people. The one you were before your child and the one you became because of your son. Liam, why don't you start us off with who you were and what you did before you became a mother. Speaker 2 (): Sure. Um, I honestly think my whole life I've kind of been trying to figure out who I am or where I kind of fit into the world. It took me nine years to get my undergrad, and in between that time I joined the Army Reserve. I did one deployment, went to Iraq when we, um, invaded the country. Um, but after that, I decided after my six years, um, and being overseas, that wasn't, not that it wasn't for me, but that I eventually would love to have a family. And it's hard on any parent, but especially a mother. Um, not that I had any near future plans of being a parent, um, single no way. But, you know, just thinking down the line and, you know, war's, war's, not fun. So I stopped and finished up and I, I eventually, I had my, um, undergraduate in health and physical education teacher and I decided to go get my master's in adapted physical education. (): Um, the program was amazing, fully paid for, and a stipend. I wasn't sure if this is what I was going to actually be doing, but I figured, hey, if you can teach a child with different disabilities, everybody's on different skill levels cuz you could even have a child that does not have a disability whose skill levels are so poor that whatever you learn from working with people with disabilities that are stereotyped to having these horrible skills, it's gonna help because a good teacher should be able to target any child at their skill level, healthy, non-disabled. So it couldn't hurt and I wanted to go to UVA my whole life. So it was like a dream come true. So I did go get my master's in what a wonderful experience. The program was great. I loved working with the kids. Um, it was just amazing. But after I left, after I graduated, I should say I'd always wanted to live in Boston. (): So I figured, hey, let's go up and teach in the city because I don't know what I'm gonna be teaching adapted pe but I'm guessing stereotyping that city schools are not fully funded. Kids are probably lacking in certain skills, so let's go for it. And I wanna live in Boston. So I did. I went up and taught elementary and middle school, pe um, and yes, skill levels all over the place. Equipment underfunding a lot of the stereotypes about the inner city schools, but also some of the most amazing kids. It was, you know, I can't say it was a great experience, but it was an experience and still have communication with some of the kids and parents from 14 years ago. And it's been fun to see a lot of them succeed. Um, but while my last year of teaching, I became pregnant, um, single mom and I was like, okay, I'm gonna do this. (): I have a very supportive family. My first pregnancy, I was working full-time plus extra hours coaching and it was an extended school. So all the tests, everything came back fine. Looking back at it afterwards, I was like, oh, you know, there was no movement but I felt with a water moving around. So I was like, oh, that must be it. But I never had any of those kicks or anything like that. Um, and actually at one time I think they did a test in his marker came up that he could be positive for. He had a risk, he was at higher risk for down syndrome. And I was like, so you know, that's my kid. That's gonna be my kid. We're going forward no matter what because I'm connected to this child and he's gonna be loved. Little did I know that was not it. (): Um, so his birth, I don't, I don't, this this population that I'm talking to you guys right now, listeners, you'll, you'll understand this. I don't really talk about this much with other people cuz it is a very, very hard topic. Um, his birth was very traumatic. Um, you know, my water broke a month early. Um, my brother-in-law and sister came over, rushed me to the hospital, took a while. His heart rate was going up and down. They tried to induce me. Um, he didn't come out. So we went in for the emergency C-section. Um, and when that came, when that came, I remember sitting there and just at that point before he's come out, the reality of everything hit me. And I was talking to the anesthesiologist saying, please let everything be okay. My sister's there with me and I'm holding her hand and I'm saying, please let everything be okay. They get Liam out. I hear what a beautiful head of hair. And then silence and he's just rushed out of the room. Um, it was Memorial Day weekend, so there wasn't much staff there. It was horrible, horrible, horrible, horrible. Um, I was, since the C-section, they brought him up to the nicu, you know, they had him intubated, they brought him to the NICU and I had the C-section and I couldn't, um, do anything. And I'm still drugged up. And the questions coming in were, what drugs have you taken? What have you done? And I'm sitting there like nothing. What's going on with my son? (): What's going on with my son? Um, I didn't get to see him for a while. I forget exactly how long cuz everything was such a blur. Such a blur when I got up there. Most beautiful little boy ever. His head full of dark hair. Oh so much hair and not moving one bit. All these wires and tubes through him. And I just see this little kid sleeping peacefully and a Red Sox fan. Big Red Sox fan. And I remember sitting in there over his little, I forget what they're called, his little egg shell thing, whatever it is, plastic thing banging on it. Same please Liam, we'll take you to a Yankees game. Please, Liam, just move. Be okay. All you can, you can, you can, you can like any sports team you like, just be okay. Just be okay. I'm okay. So then we just had to wait. Um, the nursing staff were there was amazing. I think it took 48 hours for me able to be able to hold him where a nurse who had been like, I have a child with a disability. Have you held your son? And I'm sitting there saying no. She put him on my chest and I just held him and hugged him. (): Uh, um, and it was most beautiful thing ever. And so there began our journey, um, not knowing what was going on. (): No one could have known. There's no test for what he has. He was actually misdiagnosed. They did some a biopsy. They said he had a lot of glycogen storage, a glycogen buildup in his muscles. And um, they misdiagnosed him with glycogen storage Type four. I think there's no treatment. Um, there's no treatment for anything he was diagnosed with really. So not it would've mattered. But what I did was I, um, saw all his symptoms, how he presented what you needed to support with everything. I got online and I found congenital myopathies. Um, and the one that he seen the most, like was called mild tubular myopathy. N t ntm affects mostly boys. It can't be X-linked. So I reached out to them and they put me in touch with other people. Um, because now I had to go through the process where my son can't breathe, he can't move and he can't feed. (): What am I gonna do? Am I gonna bring 'em home? Or was uh, they put it, was I gonna let him expire? Um, is just a horrible way of saying it. Horrible. Who the hell says that? That's awful. Mind you, this is not the nurses. Nurses are amazing. Um, so I mean in truth is, and saying Am I gonna let him. Are you? Because it would be nature taking its course. It's not letting you know, it's not, I hate that because this is the worst. This is an extraordinary situation with pressures on parents. Um, and just the way to say, to say it just puts different pressures on people and people have no clue. Um, but the m t m people got in touch with me. Um, and I started talking to people online, to people that had let their sons peacefully leave this earth. (): And uh, one person in particular who had let one son leave instead of it was the worst thing she's ever done. Um, and then her next son she had who had the same condition and it's a hard life. It's a very hard life, but it was a harder life watching her son leave. It was the worst thing she ever did. And other people who had with their sons and felt that that was the correct thing for their children. Um, I even had one mom, her name is Erin. She's the most amazing woman in the world whose son was 12, I think about the same age as mine, who was at Boston Children's Hospital. He's so, like, he was so like Liam, come and visit me while I was in the NICU. And I remember I was so tired. I was like, I can't handle this. (): I didn't answer her calls and she came with her son anyways. I wouldn't recommend that to most people for, unless you live our lives. Don't, don't go be busting on people's doors or doing anything <laugh>, especially at that time. But I'm forever grateful. she will who passed away a year ago in February from his, my tubular, my apathy came and visit me in the hospital where she talked to me. I got to talk to him and see what life would be like real hand. Um, and the impact that has made on me was amazing. But I also did, um, have all the tests done to see what Liam's, well not tests, but just whatever they could do to see is Liam in any pain? Um, is Liam in any pain? Is he suffering? Cause he is. And he was. And he still is my number one. (): Everything is for him. Um, and there was nothing, there was one time where I came in and his stomach was distended and they weren't sure if he was gonna tolerate his needs. Um, so they decided to give him a G tube, or do the do feeding through the g tube. And he was fine. And I, I don't know, it could have just been a bad day cuz he has been fed through his G-tube by mistake from nurses and he is been fine. But that time I was like, I don't know if my kid's gonna even be able to have nourishment. Um, but he was fine. Um, so after that we, he was in no pain. He was just the most peaceful sweet little guy. Um, and I talked to my family, being a single mom and uh, just the support. I was so blessed. My dad was like, we can do this. (): We can do this. Not, not pressuring me, but we can do this. What do you want to do? And there I am thinking, okay, cause they're giving me all these timelines. What life's gonna be like. The doctors are telling me, I'm like, okay, it's gonna be a couple years. I can do this. Couple years. They're gonna tell me he's gonna die. And what they told me he had, no one had lived past seven months at that point, or very rare. There was only a couple people that had lived past seven months. And I'm like, you know what, if I've got seven months, I'm gonna make this the best. Um, oh boy that came into that seven month who was just like around there. It was just wow. Terrifying. Um, so I decided since as my mother's instinct, Liam was peaceful, happy. (): I was gonna give him a chance of life and whatever. People who don't live our life say quality of life here. I had this mom whose son came in to see me talking to me about the beauty and these moms, they never soft coated it. I would, they would've never told me this was gonna be easy, never once to try to influence me. I was so grateful for that. I mean, I went into this knowing it was gonna be hard, not fully understanding cause I hadn't lived how hard it's gonna be. But I also had this amazing support from my family, online people. Um, I said, okay, I'm gonna do this little did I know what I was getting myself into. Holy smokes, what the okay, <laugh>. Um, no regrets, trust me. No regrets. Um, so he was at the Boston for two months and we were actually able to have insurance pay for our flight down cuz my family lived in DC area, Virginia. And where he transferred Children's Hospital. And then we went to a hospital, they changed the name now, but it was called Hospital for Sick Children. Last time I looked, they, no, last time I looked they changed it to HSC, formerly known as Hospital for Sick Children. (): I felt, I'm like, oh yeah, that makes it a lot better. And cuz he came early. I hadn't been, I'd been teaching, obviously I had my time off. I was able to go see him every day. Every day. And I had two… one sister and another friend who lived up there, who were there, who came with me when I was in Boston. Mm-hmm. <affirmative> every day to the hospital pretty much every day. My mom drove up every day we were going in there, which was also crazy cause I was holding him. And I ended up having a blood clot a week later after he was born and having to call an ambulance cause I'm on the floor rubbing it, which is the worst thing in the world. Um, in my leg. A DVT, um Right. I'm jumping around cause I already got to DC but now I'm back to Virginia. (): I'm, I mean, as I already got to Virginia now I'm back to DC <laugh>. Um, so that was also in there too with the emotional postpartum, everything. But we did get to HSC where he was there between Children's and HSC for another two months. He came home at four months. We had to, we had to have a nurse come home with us. She worked one night I think and said good luck and left <laugh>. Oh wow. I know. Oh. So, uh, talking about nursing, as many of you all know in this home healthcare, the stories, whew. I, unfortunately, I have a very good network of three nurses. I could use a little more help. Two night nurses right now, and the one's been with us since that October. He came home in September and she started working that October. And she's been with us ever since. Speaker 1 (): Are you serious? Speaker 2 (): I am, but I also knew. Because she, she came in with a notebook, taking notes, walking around it, just her attention to detail. And I was like, Hmm. Then she … she talked to me later. She was like, I don't think I'm gonna be able to work because I need to be able to get home at this time to get my kids on the bus. But I said, okay, that's an hour earlier. We will be down. We will be down. You can leave earlier. Can you please work? And guess what, she's still here. Which, oh, sorry. Did you have a Speaker 1 (): Well, no, I was gonna say, let's stop for a second because Liam is how old now? Speaker 2 (): He's 13 now. He's 13 and a half. He'll be 14. She's been with us for over 13 years. And that is almost unheard of. Speaker 1 (): Oh. Uh, that as anyone with any, most of our listeners would have knowledge, I would think, given the topic. Right, Speaker 2 (): Right. Speaker 1 (): That is unheard of. That is a dream come true. I bet she must be like part of the family at this point. Speaker 2 (): She is all my nurses. Well I, like I said, I only have three, are part of the family, you know. But it has taken… I am blessed that my parents are able, they open their home to me, their finances, to Liam and myself. So I'm also, I, I know how fortunate I am where I've been able to adjust to adapt to her schedule where she'd have to leave a lot of times in the summer to go to Puerto Rico to visit her family. So I had that extra benefit of being like, okay, I need you here. She was working nights. She now brings Liam to school. I don't know if I could ever find another nurse that I trust like her. So there's been a lot like of give and take on both of our ends. That I'm in a situation that I know a lot of people aren't in. That situation to be able to adapt your own schedule when you have a good nurse. If I hadn't been able to adapt continuously, she wouldn't have been able to stay and then, and go through all this craziness with people. Speaker 1 (): I think that that in and of itself, Jamie, is something that we should have a whole separate podcast about. Because I think perhaps, uh, think about like, like how to work with someone who's amazing to keep them for as long as possible. That in and of itself is just, we can dive in. I wanna go back and I wanna first off, thank you because you were crying. I was crying and anyone listening, I, I can't imagine they have dry eyes because anyone who has been through something similar can very much relate to what you've been through. I mean, I know what it's like to not be able to hold your kid in the NICU. Speaker 2 (): Right, right. And I, I don't, I don't talk about it with people. And this is the first time I've gone over it in probably years. You know, every now and then I'll talk about it with other moms one-on-one that might be in a situation. And I might not go into all that detail, but they talk about PTSD. I mean the first six months, if anybody was having a baby about to have a baby where I'd be crawled up in a ball on the floor, on the floor crying and still sometimes it just, it hits you....
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Rare Diagnoses with Sarah Lepore, MSN, NNP-BC, Mother
01/29/2023
Rare Diagnoses with Sarah Lepore, MSN, NNP-BC, Mother
One of the hardest things families go through is when something seems wrong with their baby or child. When we envision becoming parents, the hopes and dreams we have usually do not include a disability. Socital norms focus so much on "healthy" babies that getting a diagnosis of intellectual or deveopmental disabilities shatters our preconceived notions of what being a parent is. Then there are rare diagnoses. The ones that have no name. The ones that might require extensive testing. The ones that don't have networks of support like autism and Down syndrome do. So on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support. That's why we had to talk to Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the Vice President of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own odyssey with her youngest son Charlie brought her to us. The Odyssey: Parenting. Caregiving. Disability. For more about the Center for Family Involvement: For more about the diagnostic odyssey: TRANSCRIPT: Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, creator and host. The Odyssey Podcast will explore the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down syndrome. Even though it's the most common chromosomal condition diagnosed in the United States, we still know so little. And at the time, as a new parent, I knew nothing. And so my journey has brought me here. Working with the Center for Family Involvement at VCUs, Partnership for People with Disabilities. We provide families with emotional and informational support. Our podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we're not gonna shy away from the tough stuff either. One of the hardest things families go through is the diagnosis itself. Parenting is portrayed a certain way in our world. So much focuses on the healthy baby. So if anything with a baby or child strays away from our society's notions of normal or healthy alarm bells go off. It shatters our preconceived notions of what being a parent is. Then there are rare diagnoses, the ones that have no name, the ones that might require extensive testing, the ones that don't have networks of support like autism and Down syndrome do. So, on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support. There's help though. A new statewide effort is helping Virginians navigate and access genetic services. The Virginia Department of Health and the CFI have launched a genetic navigator program to provide support at no charge to families in collaboration with our regional genetics network. If you need support with genetics or anything else relating to this odyssey we're on, you can call or email our helpline. All of that information is in the show notes. You should also keep listening because today we're joined by Sarah Lepore. Sarah has a Master of Science in Nursing, and is a board certified neonatal nurse practitioner. She is also one of the founders and the vice president of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own Odyssey brought her here today. So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray. And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital. And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis. So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been. And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal. And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together. Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be. I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you? Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help. So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to...
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