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. 

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities 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:

Carolyn Hax 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 units a day. I would say that's 30 minute units, chores, two units an hour a day, and again, think about the average laundry, cleaning up, picking up, yard work, just basics. It adds up basic correspondence. So texting, emails, phone calls. That's about an hour a day for most of us. And that's just for typical folks.

01:20:49:04 - 01:21:15:16
Erin Croyle
Now when you tack on parenting and caregiving duties, you're helping with your child's hygiene, which can range from total care to more general support. Here's the thing, though even with quote unquote typical children, this takes reminders and prodding well into their teen years. If you, disability and or neurodiversity into the mix, you might be trying visual schedules or augmentative communication or whatever.

01:21:15:18 - 01:21:42:15
Erin Croyle
So hygiene support, that's easily two units toileting. Let's say that's one unit. And we all know that can be so different depending on family and age of the children and all of that, which is why I have four units for behavioral supports. This is a generic category for caregivers that encompasses so much four units is the equivalent of two hours a day, and that's the average.

01:21:42:17 - 01:22:06:15
Erin Croyle
Think about things that might be tougher in your family that others would probably be clueless about. In my household, transitions are really tough for my oldest, most days, even getting him to go to activities he enjoys requires a gentle full court press filled with humor and patience. Any time I think about leaving the house with him, I build an ample extra time.

01:22:06:21 - 01:22:30:23
Erin Croyle
We're talking about 30 minutes at least, not counting loading the car and taking care of all of the things those 30 minutes just to ease him into it, to get him out the door, and includes building things like a support circle full of folks who really get it, like finding a stylist who's kind and understanding and willing to adjust their schedule if Arlo just isn't having it.

01:22:31:00 - 01:22:58:15
Erin Croyle
This stuff is hard, y'all. It is. Pull your hair out. Frustrating when your kiddos refuse to do things. Surrounding yourself with people who can laugh and cry with you through it, who either get it because they're in it to in their own way, or just truly know how to practice empathy. It makes all of this more doable, but it also takes time to build that which is part of the four units of behavioral support.

01:22:58:17 - 01:23:24:15
Erin Croyle
Now, with my youngest assistance with homework or really any on preferred activity takes a huge effort. The challenges that come with neurodiversity are for real, and they come with their own set of unique skills that you need to develop. And in many ways, it's harder for folks to see it and realize it. Because kiddos who are neurodiverse, they present as typical, but they don't.

01:23:24:19 - 01:23:46:17
Erin Croyle
They don't function that way. They need a lot of understanding and patience and time and kindness and firmness. And honestly, it's a mix I just truly don't fully get yet. And I'm working on it and it's hard now. Another example is my middle guy, who's 12, and I'm lucky enough that he still enjoys hanging out with me for the most part.

01:23:46:19 - 01:24:18:11
Erin Croyle
And we love shooting the breeze about Minecraft or baseball, or just watching movies together, making sure that each of my children get the attention and affection they need in their own specific way. As much as I love doing it, it's work. It's the greatest job I've ever had, don't get me wrong. But when children have complex needs, which can range from disabilities that require anything from, again, total care to high support needs to neurodiversity, to anxiety or mental health challenges.

01:24:18:13 - 01:24:57:07
Erin Croyle
It requires parents to tap into skills that many of us are not equipped with, nor do we have a community that can show us. And that's why talking about this stuff is so important. We need to be honest and real about the challenges we face. When you're supporting a child or children who are living in a world that's not designed for them, or they're functioning in spaces that are filled with people unwilling to consider or accommodate their needs, it can be a lot, and it takes a lot of time to break down those barriers and give these kids what they need.

01:24:57:09 - 01:25:26:17
Erin Croyle
And when we're spending that time with our children in meaningful ways, trying to fulfill their developmental and emotional needs, other things go on the backburner, like self-care, even little things like bringing a forgotten instrument to school that can end up taking an entire extra unit when all is said and done. And for me, and I'm sure others, those small but frequent interruptions wreak havoc on my day.

01:25:26:19 - 01:26:08:11
Erin Croyle
And that's partly due to my own neurodiversity. If I get sidetracked, it's really hard to get back on task and I get sidetracked all the time. So yeah, behavioral supports it is a lot. Caregiver correspondence is another thing that averages for units. Think IEP meetings and the preparation that comes with it. That includes 5 or 4 meetings, doctors, specialists, messaging on my chart, chasing down lab reports, filling out the piles of paperwork required for everything from waiver services or just participating.

01:26:08:13 - 01:26:40:09
Erin Croyle
It's all that regular stuff, plus so much more, because the world's just not accustomed to helping people who have additional needs. It's the caregiver stuff. I don't know about you, but I can easily spend a full workday each week managing medical bills, insurance, paperwork, emailing people from school care team, whatever, etc. etc. etc. and then I can do it again the next week and the next week.

01:26:40:11 - 01:27:12:17
Erin Croyle
It is so much. There's no time for us to even line up the support we need to free up time. The decks are stacked against us here. It's like treading water to keep from drowning, and the metaphorical life preservers thrown at us are impossible to reach because we're too busy getting through everything else. Those life preservers are just a few inches away, and just when we think we can reach it and and line up the support we need, we have to swim in the opposite direction to handle something else.

01:27:12:19 - 01:27:46:20
Erin Croyle
It is relentless, and we need to understand that and honor that and recognize that. Because it's not going away. Medical needs moving on. I put one unit, but for many of us, we all know it's way more than that. And finally, two units for transportation, extracurriculars and those, you know, basic transitions. This is that soccer mom territory that easily averages an hour a day.

01:27:46:22 - 01:28:00:15
Erin Croyle
Now, if you total all of these units up, it's 42 units. That's 42 units out of 48.

01:28:00:17 - 01:28:38:08
Erin Croyle
That means we have six units left in a 24 hour cycle. That's three hours out of 24. That's free. That's all. And this only accounts for family and caregiver duties. This isn't really taking into account our jobs or all the other things that we're managing. And so if we're trying to be the caregiver that our children need, we only have three hours left most days.

01:28:38:10 - 01:29:04:14
Erin Croyle
That's the reason we can never get it done. It's impossible. It is literally impossible to get it all done. So what are we supposed to do? Legit? Let's scoff at the idea of self-care, because we can barely get through the day. And folks, instead of seeing this, they just say, take time for ourselves. You need to take time for ourselves.

01:29:04:20 - 01:29:36:15
Erin Croyle
How are we supposed to take time for ourselves when there is no time? And this is what I'm learning. My son is going to be 15 this year, so it's taken a while and I'm still learning how to practice what I preach. First off, say no. We need to start saying no. We cannot do the impossible. So let's stop pretending that we can keep up and do all of the things that our parenting peers who also aren't caregivers can do.

01:29:36:17 - 01:30:05:17
Erin Croyle
Skip the PTA meeting. Don't sell the Girl Scout cookies. Don't coach the team. Say no. If it's Teacher Appreciation Week. You know what? Shoot off an email saying how important these teachers are and call it a day. Let the teachers know how much you appreciate them in your own way. That honors yourself. And that's the next thing. Honor yourself, okay?

01:30:05:19 - 01:30:32:06
Erin Croyle
Acknowledge the hardships. We don't have to explain ourselves, but once in a while I think that we should. If other people have no idea what it's like to live as an unpaid caregiver to a child with high support needs, how will they ever know that we're drowning? It's a really weird place because I hate doing this and I don't want to complain about my life.

01:30:32:08 - 01:31:04:14
Erin Croyle
But if we don't make it clear that we need more help and empathy and understand, other people won't know if we pretend everything is hunky dory, everyone's going to think everything's hunky dory. Think of ways that let people in while honoring and respecting your child's autonomy. So the way I like to do this is I will frequently remind folks that my child is not, and never has been a burden and never will be a burden.

01:31:04:16 - 01:31:29:11
Erin Croyle
The burden are the societal constructs that make it so hard to be in spaces when you have a disability, because of the lack of accessibility and understanding. And so in part of this whole practice, what I preach thing, I have started even trying to do this more. I have always stressed that disability isn't a bad thing. It's a natural part of the human condition.

01:31:29:13 - 01:31:50:17
Erin Croyle
I talk about disability openly whenever is necessary, but lately I've been realizing that maybe I need to take it to the next level. Because if I miss a meeting, maybe folks need to know it's not just because I'm mom, right? Especially as women. People are like, oh, she's a mom. So, you know, I get that it's hard being a mom.

01:31:50:19 - 01:32:21:02
Erin Croyle
No, it is hard being an unpaid caregiver in a world that doesn't really give, you know, what about people with disabilities? Let's be honest. It's true. And like I said, it, accessing the services that are available is a full time job in and of itself. Even though no one needs to know why I'm going to miss a meeting if it's something outside of the realm of my job.

01:32:21:04 - 01:32:52:06
Erin Croyle
So for a good example, and I don't like to talk about this often, but I serve on my local school board and it's an honor. And I love the work. But my son has been through some stuff, and there's been some really heavy medical components to his disability that have that have been devastating. And that, force me to face his mortality and I've had to deal with some heavy stuff.

01:32:52:08 - 01:33:16:12
Erin Croyle
And I think a lot of us do have to deal with heavy stuff personally. And because we know that it's no one's business, we don't say anything. But explaining that. Medically complex and medically fragile people. When you care for them.

01:33:16:14 - 01:33:49:03
Erin Croyle
It's hard to think of how to explain to someone what it's like to walk through this world thinking that you're going to lose your child in a few months or a few years. And I think that people can relate to that idea. And if you don't tell them that, that's something that is a tightrope that you walk from time to time as you figure out what the next medical anomaly is.

01:33:49:05 - 01:34:04:24
Erin Croyle
You're walking around and your soul is being crushed simultaneously, and you're expected to function in a way that is normal and you can't.

01:34:05:01 - 01:34:31:19
Erin Croyle
It's tough because you don't want to have to talk about it because of how painful it is, and because you're putting yourself out there and you're incredibly vulnerable. And in some spaces, you're carrying this weight of the world on your shoulders while also having to maintain composure, trying to figure out ways to share that, I think is important.

01:34:31:21 - 01:35:08:10
Erin Croyle
Being a little more real about how challenging certain aspects of our life are, while maintaining that fine line of. Privacy. It's really hard. And it's also something that is very necessary. And I'm still dealing with how to figure that out and respect my son, but also let people know that they need to respect the fact that if I'm not fully present, it's for a darn good reason.

01:35:08:10 - 01:35:31:03
Erin Croyle
Right? And I think that I think that a lot of times people see a caregiver and they just equate it to a stay at home mom or a stay at home dad or whoever, and they don't realize that we are dealing with some stuff, that it's truly unimaginable what we're carrying with us every day. And it's it's our normal.

01:35:31:05 - 01:36:04:04
Erin Croyle
We live in this completely different level of anxiety that other people, I don't think can fathom. And I think we need to start figuring out how to share that, because then maybe people will have a little more space and understanding and be allies in our advocacy. Guy that just got really heavy. I, I'm going to transition here and also say that we need to also honor our self by not listening to other people.

01:36:04:06 - 01:36:36:07
Erin Croyle
This means you have to recognize what self-care is for you. A good example that I have really figured out through therapy and, and, and understanding my neurodiversity, is that folks like to say to me to let it go, oh, don't worry, it's just a messy house. Or let this go. That is not possible for me. It causes actual pain for me to live in chaos, and some order is necessary for my children because of their neurodiversity.

01:36:36:12 - 01:37:06:11
Erin Croyle
So self-care for me is making sure my house is clean. It is putting away my kids laundry for them because they need some order in their own rooms. It's figuring out what works for you and what works for your family unit. So think about your needs to feel physically and mentally stable even. And I think it's important to recognize what true self-care is.

01:37:06:13 - 01:37:41:20
Erin Croyle
Like I mentioned earlier, it is not going to get a manicure or going get a massage. In its purest form. It's taking care of yourself. We're so busy taking care of our loved ones that will miss a mammogram or skip a well visit, but those things are essential. That stuff is self-care. So is taking a shower. So is eating something, or drinking enough water, or getting exercise, or talking to a friend.

01:37:41:22 - 01:38:10:05
Erin Croyle
Those pure forms of self-care are essential. Another thing we need to do for ourselves is to just take 5 or 10 when our days are jam packed, you got to think about ways that you can fit self-care into it naturally. So I find myself doing squats while I'm in a waiting room. Or if I'm waiting at pick up, I do push ups on a bench on a playground.

01:38:10:07 - 01:38:36:20
Erin Croyle
I keep nail clippers and floss in my car, along with hand sanitizer and hand wipes. Because, yo, sometimes just flossing isn't possible, but it's necessary. Just walk around the block. If you can answer an email on your phone while you're in a waiting room or wherever you can fit it in, pay your bills online. If you're in a meeting where you don't need to pay 100% attention, just get those little things done.

01:38:36:22 - 01:39:06:05
Erin Croyle
Take 5 or 10 minutes to just do them. I wear workout clothes almost everywhere I go. I wear tennis shoes everywhere I go. I have to do that partially because of my son's allotment of shoes. It became a habit. But then I realized that my comfort is more important. You have to do. You make your life functional in a way that you can figure out how to fit self-care in, instead of doing everything for others.

01:39:06:07 - 01:39:29:17
Erin Croyle
Yes, we don't have enough hours in the day, but what little tweaks can you make where you can pick a few minutes to do things you need? Because our physical fitness, it's not about what we look like. We know we have to take care of our loved ones. We don't get to become frail. We have to maintain our strength because we have to care for someone, and we likely will into our old age.

01:39:29:19 - 01:39:53:20
Erin Croyle
What can we do so we can live long enough to support our kiddos and feel good in our bodies doing so. It's also about embracing moments of joy. This stuff is hard. Joy and happiness. It's not a constant for anybody. Those fleeting moments of joy, man, just grab on to them. When my kiddos hug me, I soak it in.

01:39:53:22 - 01:40:11:01
Erin Croyle
I can't tell you how many meetings I'm late for because my kiddos want one more hug, and there's no way I'm going to say no to that. They're 14, 12, and ten. Those aren't going to have a much longer if they ask for a hug. I'm going to be five minutes late. I'm going to go get that hug.

01:40:11:03 - 01:40:37:09
Erin Croyle
If they're dancing, I dance with them sometimes, man, I got to put earplugs in and dance with them because it gets loud in my house. But the joy and smiles on their faces are everything and it lifts me up. If a friend wants to go on a walk and maybe gossip or whatever, I do whatever I can to push off other stuff because I don't get much adult interaction.

01:40:37:11 - 01:41:07:00
Erin Croyle
I could use some catty banter or hear about whatever TV show other people are able to watch that maybe I can start watching. We need it. We need to think about other things other than these daily struggles we're living in and indulging in brain candy. I know friends that watch Real Housewives and, as much of a news junkie as I am, I turn off the news and I find watching shows like Ted Lasso to be its own form of therapy.

01:41:07:02 - 01:41:33:18
Erin Croyle
Lately, we've been watching Parks and Rec, and it's just really joyful and sometimes funny and silly, but also almost always uplifting and and hopeful. And I need that because the rest of the world doesn't feel that way. I know I said that it was important to recognize what true self-care is, but also buy the darn latte. Just get the mammogram first, right?

01:41:33:20 - 01:42:01:03
Erin Croyle
If you can swing it, get a massage, get a manicure, get a pedicure. Even better, hire a cleaning service. Do whatever you can to make your life easier. Most importantly, we have to give ourselves grace. We only get one chance at this life of ours, right? If you miss a deadline or have to cancel a meeting, let it go.

01:42:01:05 - 01:42:26:11
Erin Croyle
I remember early in my career I was so focused on getting ahead and climbing the ladder. I struggle with whether I should take time off. I almost missed my brother's wedding because I didn't want to miss the launch of the National Geographic Channel. My dad would always say, when you look back on life, what do you think would matter more that you had perfect attendance, or that you got to spend a weekend with your family?

01:42:26:13 - 01:42:45:19
Erin Croyle
And he's right. My dad was the guy who, when I was, I was such an overachiever my whole life. Right. So in high school, I didn't want to do senior skip day. And he was like, Erin, come on. And he took me and a friend to some Amish restaurant because I grew up in Northeast Ohio and it was still is Amish country, right?

01:42:45:19 - 01:43:07:07
Erin Croyle
So I was Mary Yoder's or something, literally. That was the name of the place. And I still remember that and look on that so fondly, because not only did I get a chance to go to breakfast with my dad, I got taught one of the most important life lessons. I remember spending that time with my dad and he's not here anymore.

01:43:07:09 - 01:43:36:09
Erin Croyle
I don't regret missing school. Have you have you ever regretted missing a meeting right now? I might regret missing a, meeting that I had a month ago. But when we shift and look at stuff through a five year lens or even a one year lens, it's typically not meetings or work events that we regret missing. It's that band concert that my son had that I missed.

01:43:36:11 - 01:44:07:13
Erin Croyle
It's spending time with people that I love that aren't here anymore, when our days are nonstop and our lives are nonstop, and those moments of making a decision of what needs to come first and what we need to prioritize, try to take a step back and use that lens of what your future self would want to see you do, and use that to guide you.

01:44:07:15 - 01:44:39:03
Erin Croyle
Cokie Roberts, journalist who I interned under actually back way back in the day. Right. I was at this week with Sam Donaldson and Cokie Roberts. She said to remember that your parents are only old ones, and your children are only young once. Think about all the little things that matter. Give yourself grace. And breathe.

01:44:39:05 - 01:44:58:17
Erin Croyle
Thanks for listening. Be sure to share, review, subscribe, like, follow or whatever it is you need. So you get a ping when the next episode drops. This is the Odyssey Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.