The Magic of Disney, with Type 1 Diabetes (Classic Episode)
Release Date: 04/15/2021
Diabetes Connections with Stacey Simms Type 1 Diabetes
New information about kids with type 1 and COVID, a possible link between pollution and type 2, a look at Dexcom's latest earnings call and a lot more. We're trying something new for the next few weeks! Join Stacey live every Wednesday on Facebook for the top diabetes news and headlines or listen back via the podcast or on other social outlets. Full transcription and links/sources below. Watch the replay on our or ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Podcast intro: Hi...info_outline "The Whole Thing Seems Like a Blur" - Having a Child Diagnosed with T1D During COVID
Diabetes Connections with Stacey Simms Type 1 Diabetes
It's hard to imagine having a child diagnosed with type 1 diabetes during the COVID pandemic. Most of us rely on community support and in-person meet ups and events to help support and guide us during that first year. But when you're diagnosed during a time of isolation and social distancing, what do you do? Andrew & Emily Hollis join Stacey this week to share their story. Their toddler, Addison, was diagnosed a year ago, a time when only one parent could enter the hospital with her, due to COVID restrictions. The Hollis family connected with others online and even created a line of 3D...info_outline "You can take it to another level" - Sugar Surfing with Dr. Stephen Ponder (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Dr. Stephen Ponder coined the term "Sugar Surfing" in 2013 to describe a real-time, dynamic system of managing diabetes. In this "Classic" episode we take a deep dive into what Sugar Surfing is all about and get Dr. Ponder's perspective on everything from parenting teens with diabetes to how he feels after 50+ years of living with T1D himself. Dr. Ponder is the medical director at Texas Lions Diabetes camp where he’s volunteered for almost 40 years and in 2018 he was named Diabetes Educator of the Year It’s hard to believe now with CGMs and closed loop systems, but the thinking you’ll...info_outline Ben West: Using Diabetes Tech to Relieve the "Onus to Bolus"
Diabetes Connections with Stacey Simms Type 1 Diabetes
Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve. Ben is now the CEO at Medical Data Networks which has launched its first venture: ----- available to Diabetes Connections listeners! ----- Get the App and...info_outline "It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare. John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now...info_outline "If You Can Dream It, You Can Do It" - Don Muchow Ran From Disneyland to Disney World with T1D
Diabetes Connections with Stacey Simms Type 1 Diabetes
This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class! Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already...info_outline The Magic of Disney, with Type 1 Diabetes (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks. Stacey is joined by she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks. This episode first aired in December of 2015. ----- ...info_outline Going to "Regular" Sleepaway Camp with Type 1 Diabetes
Diabetes Connections with Stacey Simms Type 1 Diabetes
Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. This podcast is not intended as medical advice. If you have those kinds...info_outline "Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world. Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he . This interview with Jeremy took place in October 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- ...info_outline Ask the D-Moms: A Dad's Worry, First Jobs, Teen Travel
Diabetes Connections with Stacey Simms Type 1 Diabetes
Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad. In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections...info_outline
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks.
Stacey is joined by Disney expert Robyn Adams. Not only does she run the annual Diabetic Mousketeers event, she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks.
This episode first aired in December of 2015.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Episode Transcription (beta version)
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff?
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:19
Welcome to another classic episode of the show. As always, we're really glad to have you here. And these episodes, give me a chance to take a look back at some of the real early interviews we did here on the podcast, you might have missed this one. From December of 2015. All about going to Disney World. A Disney vacation is really like no other. And not only is it pretty expensive, but to get everything you want. You really need to have a plan. Seriously, have you been there, you need a plan. Now I have to tell you true confession. I am a bananas, Disney planner. I absolutely love planning trips like this, this may not be your cup of tea, maybe you're somebody who just goes with the flow. But I really think that if you have diabetes, you know if your kid or you as an adult, are going on a vacation, where you have to do this much walking this much line waiting, although we don't wait in lines, and I'll share my secret in just a moment.
This much weird food or strange food, the whole Enormousness that can be a Disney World vacation. Once you add diabetes to the mix, there's a lot to think about. That's why I was really excited to talk to Robin Adams. She is a Disney planner. She's a travel agent, she also runs a really big group that goes to Disney World there. They're on Facebook as well. She just knows her stuff. She also has a husband, a son, and a father in law who all live with type 1 diabetes. And as you're listening and planning vacations, you know after people have been vaccinated, and things are starting to open up again, as you're planning vacations and trips and you know, going back to Disney parks, or maybe the first time you're going I really hope this episode will help. I have to tell you though a little bit about my planning and why I am the way I am and I kid you not we really do not wait in lines. My family has been very lucky. We've taken several big trips to Disney World. We haven't been to Disneyland. But we've been to Disney World several times, not including quick trips. My parents are two hours south of there. And we do go to the friends for life conference which is in Orlando in July usually. So I'm not counting that because that's not a true what I would say you know, Disney couple of days or even a week in the park, that kind of thing. vacation. The very first time we went was with Lea was just four years old. And we just went for a day. We didn't even take Benny he was one left with my parents. We drove up from their house took that to overdrive. We ran all over the place. We had a great day it was in January, it was cold. So you know there really wasn't anybody there. But we met princesses. We had a princess dinner and then we headed home.
So that was the first time the second time when I took both kids. I didn't plan well at all. We arrived at one o'clock in the afternoon during spring break. Those of you who have been there and done that are either laughing at me or horrified. I've never seen that many people in one place in my entire life. We got to the Magic Kingdom at one o'clock. And it was so crowded. I didn't think we'd be able to move. And I was really concerned for my kids safety. We stayed I want to say an hour, I think we did. I don't even know if we went on a ride or did anything or saw parade. I think we saw one parade because we were just stuck there on Main Street. And then we left and we spent the afternoon at our hotel with the pool, which the kids thought was the greatest thing ever. I mean, they had such a fun time in the hotel. And then the next morning, we woke up super early and got to the park, I have a picture of us on the first boat from the Wilderness Lodge resort. And the moon is still out. I mean, we got to the park as it opened, you know, and it was spring break. So it's probably open at seven o'clock that morning and had a great, great three hours. And it was amazing. And that was the beginning of my Disney planning. And I have never gone back without a better plan that I'm going to talk more about it after the interview. Just some tips and tricks that I can share with you diabetes aside what I think you can do to make your vacation a lot more fun and make your money go further. But that is neither here nor there. We will get to Robin Adams to true Disney with diabetes expert in just a moment.
But first, this episode of Diabetes Connections is brought to you by inside the breakthrough. If you're intrigued by science, you don't get excited about the process of discovery and want to have the best stories at your next dinner party. This is the show for you. In the current episode they're asking and answering just snake oil actually contain snakes. Host Dan riskin is phenomenal. He is very entertaining and he really digs deep into these stories search inside the breakthrough anywhere he listen to podcasts. It'll be wherever you found this one. And this podcast is not intended as medical advice if you have those kinds of cases. Please contact your health care provider.
My guest for this classic episode is a travel agent, a Disney planner and the organizer of the diabetic Mouseketeers event. And that is happening this year, Memorial Day weekend, I will link up the information from her website. And you can learn more about how Robin Adams wants you to meet families share stories and experience the magic. It was excited to talk to Robin not just for the Disney experience here. But also because as I mentioned, she has three generations of type one in her family. So she really knows her stuff. quick heads up, we spend the first few minutes of this interview talking about her family and those three generations. If you're just here for the Disney stuff, then you should fast forward about seven, eight minutes in that we pick up the advice for going to the parks. Robin Adams, thank you for joining me. Welcome to Diabetes Connections.
Robyn Adams 5:59
Thank you for having me.
Stacey Simms 6:01
Before we talk Disney and we're going to talk a lot about Disney. Let's talk about about you tell me about your Diabetes Connections. Because this isn't just your child, your husband has type one as well.
Unknown Speaker 6:12
Yes, my husband had been married to for 19 years was diagnosed when he was 12 years old. So it's been an you know, part of my life for I've known him for 21 years now. So it's been there for a very long time. And then our son was diagnosed at age four, after we've been married for seven years.
Stacey Simms 6:32
What's that, like, from your perspective, and I'm sure your husband's is a bit different too. But when you have lived with type one with your spouse, but then your young child is diagnosed, how different was that?
It was very overwhelming because the way we handled it in our marriage is my husband already had a mother. So therefore, I did not mother him I did not hound him. I did not say Did you check your blood sugar today? Are you supposed to be eating that? You know, I had no involvement whatsoever. He handled everything. Then there's also the drawback to that in the essence of I didn't really have a fully under standing of the disease. Because I was, you know, I was always kind of at an arm's length distance a little bit out of respect to him. Because I didn't want to hound him. I didn't want to stand on top of him. And you know, mother him basically. So we always kept there a little bit of distance. So when my son was diagnosed, Rob was still doing it the old method of three shots a day, using two different types of using the in in the art, he was doing the old fashioned mph method. Wow. And so he was not carb counting. He was not on a pump or anything. So when my son was diagnosed I was I literally had this fear, go through my head, oh my gosh, we're gonna get divorced, I'm going to kill my child. I don't know what I'm doing. No clue whatsoever. And since Rob was doing it, the old method, it actually was a crash course for both of us, which was wonderful. And honestly, diabetes did nothing but bring our family closer together. It gave me much more insight as to how it affected him day to day. He helped me see what my son was going through. And just he really helped to keep me grounded from not overreacting to certain things to show him that yes, he can survive. Yes, he can do this. It's okay. Not hovering, and just helping him live a full and enriched life because that's what Rob did for years and years through college. He was an avid rock climber, camper, hiker, everything. And he did all of that on, which kind of astounds me doing it on the NVH method, and not carb counting kind of overwhelms me with that thought. Yeah. Wow. So
Stacey Simms 8:57
did he change his diabetes management at all, seeing what your son had access to?
Well, it was interesting the day that Robert was diagnosed, that Robert was diagnosed on a Tuesday, Rob was at his doctor on Monday right before getting fitted for his pump. Wow. And they he was supposed to be in his own carb counting education class Tuesday afternoon. Well, at that point, we are admitting Robert into the hospital for diabetes. And we had he had asked his doctor the day before he had said, we're starting to see a few signs and robber what, what do we need to do about this? And the doctor said, we'll go ahead and take a fasting blood sugar the next morning. And so we did it. We've checked Robert blood sugar ever since he was six months old. I checked it every six months pretty religiously, just keeping an eye on it. And but I tell you that one morning that was the hardest blood sugar to check because we had actually started seeing signs at that time. And we knew for a fact that's what it was and We checked his blood sugar was 158. And we called the pediatrician. We call him my husband's endo, and said his blood sugar is 158. And the guy said, well, that's not too bad. We said, this is fasting blood sugar. I said, Amy, call your pediatrician right away. And by the time we got into the pediatrician, his blood sugar was 425. And we were off to Scottish Rite. And that was it.
Stacey Simms 10:23
Now, from your son's point of view, though, you're four years old, and your dad has type one. And your dad is about to be doing the carb counting classes and the pump classes and a lot of things that you yourself as a four year old are going to be going through. Was he kind of do you think he thought at any point? Well, everybody's dad, everybody goes through this.
Already? That was cool. Oh, yeah. He can't wait for me to be diagnosed. Yes, Robert, is now 12. But uh, you know, for years, it was the topic of conversation of Okay, Mom, what are you gonna have diabetes? What are you gonna join our club? Yeah, he doesn't under you know, he understands. But at the same time, it's like everybody else has it. Why don't you you know, and see on top of that, to my husband's father also has type 1 diabetes. Wow. So it's just it's a family tradition for this whole sailing. And Robert is waiting for that shoe to drop for me. That's funny. We were very fortunate when he got diagnosed at four, because he just he doesn't understand life without it. And he grew up watching his dad do shots and check his blood. So he became more like his father. And it just became even more of a way of life for all of us. Wow,
Stacey Simms 11:33
that's a remarkable story. Is your husband's father still alive?
Stacey Simms 11:40
I always ask about things like that. Because I think for some of us, who had no experience with type one before my child was diagnosed nine years ago, and I didn't know anything about type one, really. So I'm always impressed. I think that's the right word. But I always like to hear about older people. How old is he?
He is 7374 74. And he was diagnosed in his 40s. Wow. Which is, to me just wonderful that they caught it at that time as type one and did not try to label him as type two,
Stacey Simms 12:15
right? We hear a lot about Miss diagnoses like that.
Exactly. That was that's always my biggest concern. When I do hear about adults going in and being diagnosed. And either their, you know, the parents of children that I know or spouses and I'm always so quick to say please, please make sure that they truly truly know that it's type one and not type two, just because when it goes overlooked for so long, they get so sick.
Stacey Simms 12:42
So, um, do the three of the boys talk about this? I mean, it just must be so funny to have. I don't know if that's the right word. Let me start again, is it do the three of them kind of compare notes?
They do to a point, Wesley does still do the mph method. He's 70 or 74 years old, he's been doing this for a long time, you're not gonna change his method. You know, that's just the way it is. So they do compare stories, and Rob will try to give them helpful tips or try to say, you know, I really wish he would try to do it this way. And now He's good. He's got his way down. But you know, you just have to look at it from the perspective of the individual with the disease. You know, they're the ones who juggle and manage and live with the disease, if they're setting their routine and their way of doing things. It's really hard to get somebody to change, you know, because change could mean big things, good or bad. It can mean big. So we just try to step back and, you know, respect and understand that that's his perspective. But they do they talk about it a lot. And it's nice to have, you know, to two boys in the kitchen, treating loads together, things like that, you know, there's just kind of that understanding in the household that okay, this is what it is. We've got to stop, take care of it, and then we'll move on from there.
Stacey Simms 14:07
Let's move on to talk about Disney. How did you get involved? Your certified Disney planner is something you always loved.
It is. I mean, I started going we started taking Robert when he was three. And it just kind of grew into a natural obsession to where we were going several times a year. And then a few years ago, we were in a position where the main business that I had, I was a home appraiser was starting to dwindle due to the economy. What gave you the idea to take your
Stacey Simms 14:40
Disney planning and diabetes and put the two together?
Seeing the need for it. Seeing the questions on Facebook pop up over and over again. I'm going to Disney What do I do? Seeing the overwhelming feeling and feeling the fear come through people's post of how they just needed somebody to hold their hand for a few minutes to say you can do this. A lot of people once you've done Disney, you do understand you know, the loops, you know everything. But especially when you've been a first timer and you've never been, first of all Disney in itself is such an expedition, just dealing with all the ins and the outs, the resorts, the dining plan, the tickets, the four parks, the two water parks, then you've got Disney Land with the two parks over there, the rides, the attractions, the characters, taking all of that in, because you're investing a lot of money into this trip. So you want it to be just perfect, then when you throw diabetes into the mix, knowing that that could make your magical trip that you want to be so perfect, quite imperfect. It's a very daunting task for individuals. So I started to hear that in the post and started to see it and just realize that there was a need for it. So I just decided that Well, um, you know, this is what I do, I'll just start kind of tailoring all of my planning towards focusing towards families with diabetes.
Stacey Simms 16:09
And you do an event, we'll talk about the event once a once a year, right for families with diabetes. But before we talk about the event, let's get some advice. I mean, we've been to Disney many times, I'm what I would call myself a crazy planner. So I I take care of stuff. I'm good to go. I wasn't all that concerned about diabetes. But that's me. So if for people who are concerned and really worry, you know, where do you start them because as you said, Disney, in and of itself is a huge, huge vacation to plan.
Really, I start mostly with explaining. For those who have never been to Disney, I explain what seems is basic knowledge to you and me who have been there 100 times explaining that they can take food into the parks, they can take a stroller into the parks, they can take their supplies into the parks. And you'd be amazed at just hearing those three things. Make them feel 100 times better. You know, just the simple fact that you can take in low blood sugar snaps you can take in your water, things like that just immediately helps parents feel a little bit better. Because that's their biggest fear is what if I get stuck in a line with a low blood sugar? What do I do? They need to know that they have access to their supplies at all times.
Stacey Simms 17:26
And you do I mean we've had that situation happen. We've had highs we've had lows, we've had to sit down in line for Peter Pan when my son was four and treat a low and we always had our stuff with us. And I love with Disney. You don't have to stash things in lockers like you do if you go to Universal.
Universal you do
Stacey Simms 17:44
right you do to put things in lockers, although I have to tell you I am always the fashionable one with the small fanny pack. I look so cool. But a fanny pack is they'll let you on the rides. Even universal so I love the fanny pack is in my opinion is the way to go. I don't care how silly you look. I rocket my kids are mortified. I am embarrassment level expert. But it's much easier. I don't have cargo pants. I don't have all those pockets. But I like the fanny pack. Alright, so you can bring your low supplies in. You can have a stroller for little kids, you can rent one or you can get one for free at Disney. What about i would i always warn people about the amount of walking because man even though we've been several times, I always forget how big it is.
Yes, you walk seven to 10 miles a day. Wow. Yep. And that's one reason why I push a stroller especially for anybody ages 10 and under. They they just don't realize the magnitude of what walking will do to the blood sugar. And even though I send children that are top athletes, you know as far as they are involved in a lot of competitive gymnastics, or baseball teams, football teams, all of that. She amusement parks are totally different creature. Totally different creature. You're just not prepared and no two children have the same reaction at the park. They can be high, they can be low, they can be both. It doesn't matter. You know, Robert started out when he was little, he would go low so often that we stopped doing insulin during the day and we would only do his lantis at night. That was all he needed. Yeah, because we would go into a meal and his blood sugar would be 80. And if we gave him his insulin within two hours, his blood sugar would be right back down to 80. And then we're having three lows the rest of the time. So we just when he This is when he was much younger. We just constantly treated semi loads. We stopped doing his mealtime insulin and he did great. Now as he's older I battle just as many highs as I do love all then he can spike up to 425 just as fast as he can drop drop to a 50
Stacey Simms 19:44
and I guess then the ultimate thing to bring some flexibility and some patients because a lot of people out there want the same result every day. And that's just not gonna happen.
They do. I remember hearing a story one day of someone who changed somebody's child Pump site for different times in one day, oh, perm, and that that's what it was. And it wasn't had nothing to do with pump site. It's all the adrenaline, all of the craziness, the excitement, the heat, the dehydration, anxiety, everything. And I know the one thing that everybody gets most frustrated with is the fact that Disney does not provide carp counts.
Stacey Simms 20:25
Yeah, what is with that? I mean, we're beyond it at the point where you can we guess pretty well and everything but
Right, exactly. That's kind of where we are.
Stacey Simms 20:32
I was really surprised they do so many things so well. But they don't do that.
They don't, that I have been told it's due to the ever changing menu, all the different restaurants, they're changing their menus constantly, that they just can't provide it. I think another reason could be liability. But then when you think of the allergy liability that they take on with saying that certain restaurants don't have cross contamination, things like that, it's as much of a risk, but I just wonder if it's the liability of truly saying, Okay, this is absolutely, you know, this item has 12 carbs in it,
Stacey Simms 21:09
well, they're gonna do carbs, they probably have to provide all of the nutritional information. That was my thinking is that for some reason, it's just become, it's too much for them. But I, I'm really still surprised by that, especially when they do allergies. So well, they, we don't have food allergies in my family. But I've heard from so many friends and family who go, who say that's the place where they feel safe.
It is that is that is the one thing that I hear over and over again, that is the one place that they do feel safe. So but one thing I do tell people is okay, so yes, it is true, Disney does not provide card counts. However, I have heard that a chef will come out and speak with you about how a meal is prepared. And that does help with any possible hidden ingredients that are in there. For example, over at the garden grill, they have a an oven roasted turkey that they do, well, they put a brown sugar like honey glaze on it. So that one little piece of information is kind of helpful, you know, for some maybe, you know, little spikes that you might say. But to be honest, when they I do try to explain to people is if you are used to eating out, it's going to be a lot of the same foods that you see eating out. So if you are familiar with going to Olive Garden and getting their pasta dishes or going to just Applebee's and Ruby Tuesday's things like that a lot of the meals you will recognize the buffets for the character meals do have fresh fruit in rolls and fresh salad, things like that. Once you see the food, it's not as daunting as it sounds. And usually what people will find is, a lot of the times they erratic blood sugars that they do start to see is not because they miscalculated the meal by 10 carbs, or 15 carbs. It's because of everything else compacting that blood sugar.
Stacey Simms 23:02
Does Disney supply water cups of water for free?
They do. Yes, at any of the quick service places you can walk in and request a free cup of water.
Stacey Simms 23:14
That's something that our we live near Carolyn's amusement park here in the Charlotte area. And that's something that they do. And we take full advantage of that, because that's where we go mostly in the summer. And I couldn't remember if Disney had that, because certainly if your child has high, you don't want to restrict access to water.
Right. So Talk
Stacey Simms 23:31
Talk to me a little bit, if you could about the passes now that Disney gives out my full disclosure is that we've never used or asked for a disability pass or guest assistance pass or whatever they're called. So I don't know much about them. Can you share a little bit about what they are and what your advice is about
them. It is called the Disability Assistance service accommodation. My advice is, not everybody needs it. And that's perfectly fine. It's nice to get to have just stored in your back pocket, just to have just in case. But just because you get it doesn't mean you have to use it. So sometimes it's nice to go ahead and get it and plan for it. But there's nothing saying that you have to use it. During Christmas time during Thanksgiving, the really, really high peak times it is nice to have it. The way it works is it works like an additional Fastpass. When you go to guest Relations at any of the four parks, everybody in your group must be with you. And when you're going to the Walt Disney World parks and if you're staying on site, then you have magic bands. If you're staying off site, then you have the hard tickets. The Disney the DTS is actually electronically linked to those items. So you're not having to carry anything extra around with you. But you need everybody who you want linked to it with with you so that they can get everybody linked appropriately. And Disney wants to cut down on the abuse. Disney wants to see everybody who's involved. Technically, they want only six people on there. However, Disney does not want to break up groups and break up families. They know that people really want to be together. So they will go, I've seen groups as large as 14 and 16 placed on the DS.
And what do you get for it?
What you'll do is, you'll get your accommodation added to your magic banner, your park ticket at guest relations. And then like let's say, if you're going to Walt Disney World, you set up a Fast Pass ahead of time to ride Space Mountain at 11 o'clock between 11 and 12. Well, what you do is as you're walking over to Space Mountain, the Buzz Lightyear Space Ranger ride is right next to it, you would make a pit stop, go to the Fastpass line, say we have the DA s, they're going to look at the standby time, the standby time, for example, is going to be 45 minutes, they're going to give you a return time for that standby time minus 10 minutes. So they're going to give you a return time for 1135. If you're standing there at 11 o'clock, for 35 minutes from the time that you're requesting it. So then you're going to go in ride, Space Mountain, use your Fastpass for that, come back to Buzz Lightyear at 1135 or anytime after go through and you'll be able to go through the Fast Pass line at that time. It works as a secondary Fast Pass.
Stacey Simms 26:44
I'm going to ask you a gentle question. Do you think people with type 1 diabetes need this?
I do. But I think it is very specific per person. There are a lot of children that go that don't need it. And that's perfectly fine. But there are a lot of children that go whose blood sugars are so much all over the place, that they feel rotten. And this just helps to expedite their day, it helps them to go through the day a little bit faster when they can use the Fast Pass and the DA s together. There are children that have seizures that are heat induced. So it just kind of helps to keep them when you're in the lines at Disney. Like especially like Thunder Mountain, in that you know all of that wood structure. And you're there in June and July when it's so hot. When you're packed in that line of all those people it gets really, really hot and stuffy. If you can be in the Fastpass line, it keeps you on the outside of those people for as long as possible. When you're in the standby line, you're in the heart of all of those people. So it just kind of exasperates the heat that the children might be going through?
Stacey Simms 27:59
Well, because I know you've seen this on on Facebook, you know, some will ask a question. And then it's five pages of judgment. And I asked you that question, because I think it's important that you make the decision as a family. If you think your child needs this and will benefit from it, it's available to you. If your child can stand in lines, and you're fine. And you know, like I said, we've never needed it. So we've never gotten it. I don't know much about it. But I would never judge someone else who feels that they need to use that. And I think it's unfortunate that that happens. Do you have to do you have to prove to Disney that you have type one? What do you do?
Know and to be blatantly honest, type 1 diabetes is not technically approved in Disney's mind to receive accommodations. They do not understand diabetes.
Stacey Simms 28:45
So what do you what do you tell them? You say I have blood sugar issues?
Yes, just like with any disease or condition that you are going to Disney with an African accommodations. Disney does not want to know the diagnosis, diagnosis period. The cast members themselves are not doctors and they're not therapists, psychologists or anything, so they don't have a full understanding of all of the hundreds of 1000s of different cognitive and medical conditions out there. Okay, so even children with ADHD and autism, there's such a broad spectrum of everything, that one cast member cannot make the determining factor of whether or not you need an accommodation simply based on a diagnosis. So it definitely does not help especially when in when diabetes is concerned to state diabetes by any means whatsoever. So what you do is you go in and you focus on the conditions and what you are most concerned about how you are concerned about lows could possibly induce a seizure, how highs could cause organ damaging ketones, things like that. You want to express another thing reason why I am an advocate of the DEA s pass for Children with diabetes, because it keeps you in that outside lane. Since the Fastpass line wraps around the standby line. It gives you an easier exit. So if you're is if your child is dropping from a low and the resources that you have on you are not enough to bring them up and bring them stable, you can exit that line a lot quicker. Or if your child is having problems with highs and is needing to use the bathroom a lot, they can exit the line a lot quicker to access the bathroom.
Stacey Simms 30:32
So what do you love about disney world? What brings you back time and
time again? For us, we feel like it's an escape from our everyday world. It is so interesting how when you walk through those gates, it just literally does seem like you're transformed into another world. It just seems as though everything that you've just dealt with for whatever for the past six months or a year just seem to completely melt away. And you're in another zone.
Stacey Simms 31:00
That's how I feel like let me play make believe for a little while. What do you have? Do you have a particular ride or character experience or dining experience that you love?
our favorites are even though my son is 12 years old, we still do Crystal Palace with every single trip. That's right. It's way the Yes. It is Winnie the Pooh. He is a die hard for that restaurant. And if we skip it on one trip, darn it if I don't have to take him twice on the next one. is just that as part of our team. Another love favorite is Thunder Mountain for him. And he also just still to this day love seeing as many characters as he can.
Stacey Simms 31:46
I was really sad when the last time we went, we went and I wanted to see the fireworks. I just wanted to sit and watch the fireworks and my children have no patience for that. That was not going to happen. And we did Thunder Mountain, but we did it during fireworks. That was really cool. Isn't
that amazing? Yeah, that was great. We've done that too. And my son absolutely loves doing that.
Stacey Simms 32:06
Tell me about diabetic Mouseketeers. This is an event that's happening in May. What's that all about?
diabetic Mouseketeers is a trip I organized five years ago, specifically for families with diabetes. And it can be type one, type two type one and a half, it doesn't matter. It is designed as an opportunity for families with diabetes to go and meet at the parks. It's very relaxed, very laid back. It's just a chance to play. Basically, what it gives is it gives families the opportunity to know that there are other families just like them in the parks at the same time going through the same thing they are. So a lot of the families do end up we end up meeting up most of the time throughout the same throughout every trip every now and then we do have one or two families that get caught up in doing their own thing. And I think that is absolutely wonderful. I want families to know that we're there to support them and be there and hang out with them. But I also want families to feel the freedom to be able to do what they want to do. I organized several different events so that the families do have time to meet. Once they're going to be character greets doing character meals together dining experiences together. I think this year we're going to go to the beach at the Polynesian together and watch the movie out on the beach and maybe under the stars, different things like that. Just to kind of bring that unity in that time for the kids to be together. We usually spend a lot of time at Animal Kingdom doing the Patagonia forest and the conservation station and the safari train or the safari ride just good times for the children to just relax and be together and so my favorite things is watching the children all check their blood sugar's together. Yeah, their favorite pastimes did knowing that they're not the only one.
Stacey Simms 33:58
Do the characters ever react to that? Have you ever had somebody at Disney react?
I personally never have. We've just we've never had anybody say anything negative or anything. I've heard stories of it happening. Just somebody might say a or something like that. But we've never run into it. I was
Stacey Simms 34:18
actually thinking the opposite. Like one of the characters would say wow, like give the kids an Attaboy. I wasn't even thinking about the negative but thankfully we haven't run it. Oh,
okay. So never, never have just, we've always kind of ducked over to the side. And you know, it's usually because usually the lows come after attractions. Right after being like, for one year, we all were going to ride the safari together. But we needed to kill a little bit of time to wait for our return time for the DA s. And so we went through the Patagonian forest together did lots of walking and everything. Then we finally went on the safari ride together and it was about 1130 and all the kids walked off and every single child except One was under 90. We all went to lunch together. That's funny. Yeah, you just kind of hear all these. I'm low. Caffeine down all the children were dropping like flies.
Stacey Simms 35:15
I'll link up the information for the the diabetic Mouseketeers event that's coming up. Before I let you go. I mean, any advice for someone who's going to Disney World with their child with type one, this holiday they haven't used you to plan. They think they're set any last minute advice.
First of all, they are more than welcome to contact me directly for any last minute advice. Just because they haven't used me to plan does not mean that I am not willing to talk to anyone, and answer any of their questions and just help them. biggest piece of advice is definitely take it slow. Take it slow, enjoy it. There's going to be highs there's going to be lows, take in your low blood sugar snacks, take in the snacks that you know work for your child. If you know that Skittles are the dead ringer to bring them up fast, bring that don't bring chocolates don't bring peanut butter crackers, the chocolate will melt, the crackers will crush and juice boxes will pop and sober. So well Capri Sun pouches that comes from experience. definitely take a backpack and just pack it with everything that you feel that your child will need. Your bag will be searched at the time of entering each Park, but they're not looking for food, they're not going to worry about that at all. They're looking for other items. So just bring in everything that you need to take care of your child, we usually walk in with about three bottles of water and two bottles of Powerade. And by the end of the day, it's all gone. Yeah,
Stacey Simms 36:49
I think that's great advice. And I would just pop in and add, it is going to take you longer to get there and longer to walk around than you think. And I'm one of the people who I plan where we're going to be at 911 to eat or we're doing this, we're doing that, and we never get to everything. And that's fine. Just stop, right? Sit down, slow down, do what you can, you're not going to do at all, don't even try.
You're not I know people who have been over 100 times and they still don't Wow, at all, and Disney is not going anywhere. I understand that for so many people. This is either a once in a lifetime trip or this is going to be the trip for the next 10 years. And that's perfectly fine. But the bottom line is it's not going anywhere. So whether you're not going back for six months or not going back for 20 years, it will still be there. So it's not worth trying to pack it all in. It's not physically possible.
Stacey Simms 37:40
And Mickey bars do have carb counts on them because they're packaged the Mickey ice cream. Yes,
a lot of the free packets items do have the carb counts, or you're going to recognize it. Like for example, in the dining plan for the kids menu comes with a little bitty applesauce on it. Well, that's just like the little knots applesauce that you would have at home. So if you're familiar with that item, there you go.
Stacey Simms 38:04
It's like 12 carbs, that's like a lunchbox thing.
Yeah, it's just like the little lunchbox size thing. So and then they've got prepackaged little things are great. You can do that. One thing that families might want to know is especially just for any reason whatsoever. When you have a children's menu, you're given adequate service, like let's say you go to cosmic rays, where you're going to get a hamburger fries, you're gonna get your main dish, you're going to get your side item, and then you're going to get a drink and a dessert, we got really tired of the desserts. And my son is just really picky. He doesn't like them. I always traded my dessert in for an extra bottle of water or an extra bag of grapes. Oh, there was a problem with it. I wouldn't do it. I wouldn't mention anything when I was at the cash register like cuz you know, when you walk up, you talk to the first person and give them your money or your dining plan information when you're placing your order. And then you walk the next 10 feet and go up to the counter. I would always mentioned to the person at the actual counter, it was much easier than for them just to swap out whatever I didn't want. Rather than trying to make the the nice lady at the cash register try to make exceptions or substitutions. That just doesn't work. But yeah, I just asked him to swap it out. And we would always have an extra bottle of water at that point.
Stacey Simms 39:25
Well, Robin Adams, thank you so much for sharing your expertise. I will definitely link up your information about the upcoming weekend in May for kids with diabetes and their families at Disney and your contact information as well so that people who have holiday season is here disease pack so they can get in touch with you and get some last minute advice about Disney and diabetes. Thanks so much for joining me.
Thank you. I appreciate it.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:00
I'm going to link up all the information about the Memorial Day weekend, the diabetic Mouseketeers weekend that Robin plans. And she's got a really a bunch of good information on her website, not just about that, but about tips for people with diabetes at Disney, and she can book a vacation for you. She's not just about that one weekend. And she is as you would imagine an authorized Disney vacation planner, I want to take another second here and just talk about that disability path that Robin mentioned. And it's always a good idea to check up on that it does change here and there. So I will link up Disney's own explanation about that. So you can make sure you understand it before going in. And I also want to follow up on my comments about why we didn't use it with Benny, we never have. And as Robin said, you know, use it if you need it, no doubt. And the reason that we never used it, well, first of all, was my planning, which again, I will get to in just a moment tell you a little bit more about how I do it. We just never needed it. But also because this was interesting, I didn't realize this until years later, when Benny was about four I think was the first time we took him. And he'd been living with type one for two years already at that point. And the disability pass was presented to me by a very well meaning other parent, I'm sure as like a golden ticket like a prize, you know, it's bad enough that he has diabetes, at least this is one good thing that can come out of it is kind of how they said it. And he was presented as a reward. And to me that made no sense at all, you know, we had been focused on saying we're gonna raise him with, you know, the knowledge that this was a really challenging condition, but that it wouldn't stop him from doing anything. And you know, I know that we've gone back and forth about that. But I'm trying to put you in my mindset of where I was at the time because Sure, we still say you can do anything. But now we know it'll slow you down, it'll stop you. This is a good thing having this pass if you need it. But at the time, we were not looking at it that way. And we thought Why do we want to teach him that he can cut the line just because he has type 1 diabetes. And now looking back that isn't at all what that house is about. It's not about cutting the line as a reward for you know, having to use an insulin pump. It's about as Robin said, If you know your child goes high in the heat goes low in the heat, God forbid, has seizures has real problems, things like that, you know, if you know that there are going to be circumstances where this will really help you then please please, please go get it. I think sometimes it's it's a more of a hassle in some ways, you have to actually go and get it and do all this stuff. So it's not an easy thing where you just swing mine skip the line. Also, if you're doing this as a reward, and that's your personal philosophy, right? Like a diabetes stinks. This is a good thing I can get out of it. I'm not sure that I can judge you either. I mean, I'm not sure that I don't have the same mindset that I used to, you know, we all do this differently. And whatever it takes to get you through the day, you know, the only thing is obviously, we never want anybody to abuse the disability pass. That's one of the reasons why they changed it, it actually used to be a lot easier. I want to say it was maybe 10 years ago that Disney made a lot of changes to the disability pass because people were really abusing it, not people with type 1 diabetes people who didn't need it at all. So just keep that in mind. Okay, so how do I get no lines? How do I do this? Well, my secret weapon is a website called touringplans.com. This is an amazing resource. It's the unofficial guide to Disney World, they used to have a book I mean, the first time we went, I used a book, right? Remember that you'd like read the book and mark the pages. But now it's a website and you can make a plan, you can make a physical plan with them like, these are all the rides I want to do, they will pop it into their little computer, and it will spit out here's where to start. Here's where to go. Here's what to get a fast pass for all this amazing stuff. And the other thing I do with my kids is I say, give me one thing we're going to do today, what's your one choice for today? You know, what's your one thing you want to do in this park, and then I build things around that so that we're not going to do everything we want to do is you know, that's impossible. But we know we're going to hit the one thing they really wanted to. And I plan really far out in advance. I have a friend who was going to Disney in I want to say September, October. And God she's given me hives because she's gonna wing it. And I'm looking at the calendar going, is it 190 days? Do you have your advanced dining reservations? When can you are you staying on property? So does that mean you can get your fast passes earlier? You know, you need to schedule your rides, pick your top three. And she would look at me like I had three heads if I suggested that. And you know, a lot of people just wing it and have a great time that I need to know, you know, if we're going to go on flight of passage, then I'm getting up at five or six in the morning, the day that my fast past opens, you know, 30 or 60 days before we're there. So I can book that right. So I'm not waiting in line for three hours when the day comes. Now I'm sure a lot has changed at Disney because of COVID. So definitely talk to Robin or check out touringplans I think it's something like six or $7 to get onto touringplans and get their information. And if you're spending 1000s of dollars, another six or seven bucks is not going to make a big difference in your budget, but it will make your money go so much further. They don't pay me. I'm not a affiliate of them. But interesting fact, Len testa who runs that whole thing he's been on the show before he's been on this show because he had been working in the type two diabetes sphere. With a medication algorithm to help people figure out I'm not sure this ever made it to market, but it's called glucose path. And it was all about looking at the varieties of medication people are taking, looking at their health insurance and things like that and trying to figure out what made sense for them to take in terms of what was covered. I don't remember all the fine details about it. But he is just an information guy who loves Disney. So that's how it all came together. It's a whole bunch of algorithms. And if he's applying it to other things now, including diabetes, I thought that was really interesting.
Stacey Simms 45:30
not done with Disney. Next week, I will be releasing an episode Fingers crossed. This goes well, because I've been scheduled to talk to him a couple of times, and it hasn't worked out, but I think we're good. The gentlemen Don Moo Chow, who ran from Disneyland to Disney World. He will be on the show next week. And I'm going to ask him a lot of questions, including Why Why did he do this? You ran he ran by foot from California to Florida. He lives with type 1 diabetes. Obviously, this is a big awareness campaign. But Holy cow. Alright, thank you so much for joining me. Thank you to my editor john pupkin is from audio editing solutions. I will see you back here next week for more Disney and until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.