The Odyssey: Parenting. Caregiving. Disability.

Most of us are well aware of America's mental health crisis, but lack to tools to support each others and help ourselves.  As mental health specialist and CDC Children's Mental Health Champion Patrice Beard shares, learning to spot the pink flags - those early warning signs that show up before the big red flags - can make a big difference!   he 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: 988 LIFELINE: 24/7 Support for suicide and crisis prevention. Using the 988 Lifeline is free. When you call, text, or chat the 988 lifeline, your conversation is confidential. The 988 Lifeline provides judgement-free care. Talking with someone can help save your life. Mental illness warning signs and symptoms. Understanding what depression looks like in teens. National Alliance on Mental Illness (NAMI) NAMI Virginia More about Kevin Hines, who attmepted to kill himself by jumping off the Golden Gate Bridge and is now a powerful advocate for suicde prevention.  Centers for Disease Control statistics on children's mental health REALISTIC Self Care Strategies for Caregivers How dangerous are phones and screens for teens?     TRANSCRIPT: 01:00:06:18 - 01:00:35:11 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. It's something I became intimately familiar with when my first child was born with Down syndrome in 2010. Now I work with the center for Family Involvement Advocates partnership for people with disabilities.   01:00:35:13 - 01:01:05:09 Erin Croyle This podcast explores the triumphs and hardships that we face. We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. But there's no sugarcoating of the tough stuff. Sure, we can do hard things. There's a whole podcast dedicated to the idea, but this caregiving life that we're living, it is next level. It's all consuming in a way that no one can understand unless they're living it too.   01:01:05:11 - 01:01:39:07 Erin Croyle We're so busy doing the hard things, thinking this is just how it is, that we don't even realize how tapped out and burnt out we are. This is why I had to have the CFI's mental health specialist and one of the CDC's children's mental health champions, Patrice Beard, on the show to talk about how we can better support everyone from those close to us, to acquaintances, to strangers, to ourselves.   01:01:39:09 - 01:01:56:03 Erin Croyle Patrice, part of what makes what we do at the center for Family Involvement so unique is that all of us have lived experience that informs our work. Can you tell us how you got started down this path to mental health awareness and education?   01:01:56:05 - 01:02:17:02 Patrice Beard Sure. I started off. I had been off work for a few years. I had originally worked for a medical home, plus, and I got familiar with Danny Yarbrough, our Dana, and, I was looking for a job, and she said, hey, the Partnership's got some admin opportunity part time. Do you want to come work for us? I was like, sure.   01:02:17:02 - 01:02:43:05 Patrice Beard So I started working for Admin Center for Family Involvement and got familiar with the center for Family Involvement. What they do, and then reaching out and helping families and that whole lived experience. I realized that there was nobody on the team. What that mental health look experience that I had. And so then we talked and I said, you know, I can help families with this.   01:02:43:05 - 01:03:11:08 Patrice Beard And she said, okay, well, you'll have to go through the navigator program. So I started talking to families and helping families through that. And then at the partnership, I was struggling. One day I came into work and I was having my daughter, who has some mental health conditions. I was just struggling with her in school and somebody said, hey, have you heard of NAMI, which is the National Alliance on Mental Illness?   01:03:11:10 - 01:03:37:15 Patrice Beard And I realized I had all these amazing programs for families. So I started taking these programs. So I took like family, a family, I took children's challenging behavior. And this was so amazing. And I was sitting in a room with other families who knew my exact experience and who I could talk with, and I could learn. It was an amazing to me that there were all these people that had the same kind of experiences that I had.   01:03:37:17 - 01:03:59:03 Patrice Beard It was just awesome. So I just started soaking it up and taking all these classes. I'm like, okay, I like classes so much now I'm going to learn how to teach them. I would take the training, the trainer classes, and through all of these processes, I was able to get better and better at understanding how to handle and how to handle the situation with mental illness and my daughter and then my family.   01:03:59:05 - 01:04:27:03 Patrice Beard And then I was using those resources to help other family members that would call in to the set up for family involvement. From there, it just kind of snowballed. Anything I could get Ahold of and learn and take and get a certification in is what I would do. With that, Dana saw that, she just allowed me to grow, and then it just kind of developed, and then she kind of said, hey, I think we need a mental health specialist on staff, and here you are.   01:04:27:04 - 01:04:49:16 Patrice Beard So I was able to join the center for Family Involvement team as a mental health specialist. So that's what I do now. And I'm still always taking webinars, and I'm always trying to learn more things so I can help families ultimately, as always, to help families. And now I'm on boards like the Department of Behavioral Health Mental Health Advisory Board.   01:04:49:18 - 01:05:01:01 Patrice Beard I'm asked to do presentations. And so it's amazing. So it's really totally just from all of the experience and having the opportunity at the partnership to evolve.   01:05:01:03 - 01:05:34:19 Erin Croyle Amazing. I'm going to mute real quick and close my door. My mom is visiting, so it's normally really quiet in my house. And she's puttering around in the background. And it's a really beautiful thing I don't get to experience and I love it, but I had to close my door. I want to explain for our listeners, you know, we talk about family navigators, and that's part of what makes the center for Family Involvement so unique, so we have staff who specialize in many things, but we also have volunteer family navigators who are trained.   01:05:34:21 - 01:06:01:06 Erin Croyle And the beauty of family navigators is that they also bring in lived experience, and we're able to connect people who reach out to us. So I'll put that information in the show notes for y'all so people can reach out to us and we find other families with lived experience similar to yours to connect to. And it's such a beautiful thing that even us as colleagues will reach out to one another.   01:06:01:07 - 01:06:21:16 Erin Croyle Just yesterday, I was struggling with something and I reached out to Nikki Brandon Berger, who is my supervisor, and I said, hey, you know, if you know anyone going through this, like, I'm really struggling, can you help me? And it's a very unique thing because when you mix disability and mental health and caregiving and aging parents and.   01:06:21:18 - 01:06:24:16 Patrice Beard All of it.   01:06:24:18 - 01:06:48:19 Erin Croyle It's a lot. And there's not a lot of help for people out there. And I know, like a lot of professionals that we see in the field, they don't have that lived experience. And that's what's so beautiful to me about the work that we do. In fact, you know, Patrice, I'm always looking for reasons to talk to you because I adore you and you just cut through the B.S. and you always tell it like it is.   01:06:48:21 - 01:07:13:06 Erin Croyle And I wanted to talk to you today because there was a moment a few months back when we were all in a staff meeting together, and there was an icebreaker question asking folks to mention their proudest accomplishments of the years. And, you know, all of us have tough times. I'm telling my kids this all the time to look out for the people around you because we put on brave faces, but we don't know what's going on behind the facade.   01:07:13:08 - 01:07:30:08 Erin Croyle And I tried to casually say something in that meeting like, I made it, or I'm still here, and you call me right after that meeting to ask how I was doing. And we hadn't talked for a while. It's not like we call each other every day or every month. It's like a couple times a year that we really talk.   01:07:30:09 - 01:07:52:13 Erin Croyle And so that phone call meant so much to me. And you said that my answer to that question raised a pink flag for you. And that was just such an intriguing concept that I've been wanting to talk to you about it on the podcast. So here we are, and I want to know, what exactly is a pink flag?   01:07:52:15 - 01:08:21:19 Patrice Beard To me, a pink flag is when you know something's off, something's different. There's a concern. It's easy for me to have a pink fly with you because I know you and I know I'm in meetings with you. I know your personality. Sometimes having a pink flag is just being really intuitive and just watching. Just observe things. So when you commented the way you commented, that's not typically how you comment.   01:08:21:21 - 01:08:44:07 Patrice Beard That's not a standard answer for Erin. I'm here is not a standard answer for Erin. I could actually hear a break in your voice when you said it, but I don't kno

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 typicall

A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink. The Odyssey: Parenting. Caregiving. Disability.  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: Parenting Special Needs Magazine Simplified self-care There is limited research on the connection between caregiving and problem drinking.  There is some recognition that caregiver burden can cause anxiety, depression, social isolation, and stress which are predictors of increased alcohol use.  The slope to addiction is a slippery one. "It's 5 o'clock somewhere" loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on the slide.  I speak from experience. I remember the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I chased over and over again at countless venues - dorms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually play dates.  Information on how ADHD impacts substance use. 2023 survey of 1600 mothers by Parents found that 48% had tried to curb their drinking, one in three admitted they might be drinking too much, and 12% were worried they might have a dependency problem.    Most folks pour way more than a standard serving when imbibing.      In early 2025, the current U.S. Surgeon General Dr. Vivek Murthy urged warning labels be updated to include a heightened risk of at least seven different types of cancers including breast, throat, and colon.      According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.      WHY ALCOHOL IS SO RISKY FOR CAREGIVERS For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need - respite, support, empathy, space, to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality.  The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgement, and a whole host of other things that can make caregiving more difficult. If you are unable to recognize that alcohol use is exacerbating what ails you; a cycle is established - drinking to ease what ails you, in turn causing more ailment which leads to more drinking which can lead to problem drinking and eventually, potentially dependence. There are many self-assessment tools available online, you just need to be brutally honest with yourself when taking them.  As difficult as cutting back can be, finding help is easier than ever.      TRANSCRIPT: 01:00:06:21 - 01:00:38:09 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:38:11 - 01:01:19:00 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating the tough stuff. I'm all about keeping it real, so I'm just going to come out and say. I've been recovering from surgery. So while I have some amazing interviews coming your way, this episode, I'm going to share a somewhat personal article I wrote for Parenting Special Needs Magazine about one of the hardest yet best things I've ever done for myself.   01:01:19:02 - 01:01:53:10 Erin Croyle The allure of sipping on an adult beverage at the end of a hard day is real and for good reason. A glass of wine or a stiff drink are long romanticized ways to chill and unwind. A sort of easy pass into the fast lane of relaxation. But what happens when nearly every day is hard? Kind of like the unending mental and physical labor that comes with being both a parent and a primary caregiver for your child.   01:01:53:12 - 01:02:27:08 Erin Croyle Reaching for a bottle of booze may seem like simplified self-care when your days are often both incredibly demanding. Yet super mundane. While there's virtually no research on the connection between caregiving and problem drinking, there is recognition that caregiver burden can cause anxiety, depression, social isolation and stress, which are all predictors of increased alcohol use. The slope to addiction is a slippery one.   01:02:27:10 - 01:03:14:02 Erin Croyle It's 5 o'clock somewhere, loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on that slide. I speak from experience. I remember so well the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I've chased over and over again at countless venues, dorm rooms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually playdates.   01:03:14:04 - 01:03:42:10 Erin Croyle The way our culture normalizes alcohol use made it easy for me to enjoy a glass of wine or three while making dinner for my children. That is up until I quietly quit drinking when they were ages five, three and one. Mommy, happy hours at a playground are a thing. One that I partook in, enjoyed and instigated. I felt like I deserved it.   01:03:42:12 - 01:04:12:13 Erin Croyle My oldest son has Down syndrome and has eloped since he could walk. I now know that all three of my children have ADHD and so do I. What felt like the only attainable self-care I could find at the time was actually me self-medicating with some really heavy dosing. Caregivers operate at a whole other level of intensity than peers who are simply just parents.   01:04:12:15 - 01:04:42:13 Erin Croyle When there is literally no time in the day to just be taking the edge off with a drink can be dangerously appealing. In fact, a 2023 survey of 1600 mothers by Parents magazine found that 48% had tried to curb their drinking. One in three admitted they might be drinking too much and 12% were worried they might have a dependency problem.   01:04:42:15 - 01:05:19:07 Erin Croyle Everything in moderation is not always the way sober curious movements abound these days, from theme months like dry January and sober October to expensive mocktails popping up in beverage sections at the grocery store. It's easier than ever to be a teetotaler. Staying sober, however, is a whole other story. Drinking is ingrained in our lifestyles. Mimosas at brunch, celebratory toasts at wherever.   01:05:19:09 - 01:05:49:13 Erin Croyle Honorary toasts at wherever. When I first stopped drinking, the pressure to have just one came from virtually every adult around me. Nearly a decade later, and I still rehearsed responses as to why I'm abstaining. It's just assumed that everyone old enough to drink would drink. And if they're not drinking, they're expected to explain why. As if it's anyone's business.   01:05:49:15 - 01:06:19:11 Erin Croyle The thing is, if moderation requires thought or effort, it might be time to examine your habits more closely. This idea that a glass of red wine with dinner every night is healthy is a complete fallacy on many fronts. First off, how much is in that drink of yours? A serving size of wine is five ounces. That is way smaller than most people's pores.   01:06:19:13 - 01:07:02:12 Erin Croyle The same goes for most drinks, from beer to hard booze to malt liquor. And I'll have graphs and more info on that in the show notes. Another consideration is that many people who drink too much don't realize they're drinking in excess, and they certainly don't see themselves as dependent on alcohol. Furthermore, statistics on alcohol consumption are self-reported. If we were to factor in human error and perception, most people are probably both over serving themselves while simultaneously underreporting their consumption to medical professionals.   01:07:02:14 - 01:07:38:02 Erin Croyle In fact, the CDC reports that nine out of ten excessive drinkers are not alcohol dependent. But how would they know that? What's the measurement there? If you're an excessive drinker, what makes you think that you're not dependent on alcohol? It is a very blurred line. And even if you're truly one of those people who can have a few sips and walk away, the old adage that alcohol in moderation is good for us is patently false.   01:07:38:04 - 01:08:16:20 Erin Croyle For decades, we've been led to believe that a drink or two several days a week could help in preventing heart attacks and strokes. But in early 2025, the U.S. surgeon general at the time, Dr. Vivek Murthy, urged warning labels be updated to include a heightened risk of at least seven different cancers, including breast, throat and colon. According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.   01:08:16:22 - 01:09:01:05 Erin Croyle Let me repeat that and remember what I just said earlier. We are overconsuming and underreporting. So in his report, he said even consuming just one drink per week, one five ounce glass of wine per week increases cancer risk by 10% in men and 16% in women. Why is alcohol so risky for caregivers? For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need.   01:09:01:07 -

When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why. But what happens when test after test just leads to more questions?  Rare diseases are more common than we realize; research surrounding them is what's lacking.  We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey.   The Odyssey: Parenting. Caregiving. Disability.  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: The Center for Family Involvement offers specialized one to one support specific to rare diseases through our Genetic Navigator program.  Learn more about rare diseases and Rare Disease Day. Smith-Kingsmore Syndrome Foundation       TRANSCRIPT:  Welcome to The Odyssey: Parenting. Caregiving. Disability.  I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. It's a seismic shift I experienced myself, when my first child was born with Down syndrome in 2010.  Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and the hardships we face.  One of the hardest things families go through is the diagnosis itself.  There are an estimated 300 million people with rare diseases worldwide. A disease is considered RARE when it affects fewer than 1 in 2,000 people.  Lack of scientific knowledge often leads to delayed diagnoses and inadequate treatment and care. All of this places a heavy social and financial burden on patients, and in turn their caregivers.    To highlight these issues and in honor of Rare Disease Day this February 28th, I dug deep into The Odyssey vault to revisit my   interview with Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the President of the Smith-Kingsmore Syndrome Foundation. Her now 13-year-old son Charlie is one of less than 300 people living with SKS. The story of their diagnostic odyssey is just one example of what so many families go through.   So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing i

How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that? It's gotta stop! There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.  If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude! The Odyssey: Parenting. Caregiving. Disability.  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: There are very few studies on how women tolerate pain. This 2022 study explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false.  While there is evidence that period pain is comprable to the pain of a heart attack; renowned gynecologist Dr. Jen Gunter warns that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks.   Research continues to show the importance of limiting screen time for children.    TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk. If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story. Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section. My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero. She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened. So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December. And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier. Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it. I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive. That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school. And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care. So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm. And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack. And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain. And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion. When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver. Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term. These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids. So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress. If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time. And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight. And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and

We're trying something different this episode: our first ever anonymous "airing of grievances." Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.  When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.  What about you? What secrets do you wish you could share?   The Odyssey: Parenting. Caregiving. Disability.  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.    TRANSCRIPTION: 01:00:06:19 - 01:00:36:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:36:13 - 01:01:03:16 Erin Croyle One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.   01:01:03:18 - 01:01:35:14 Erin Croyle It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.   01:01:35:16 - 01:02:04:18 Erin Croyle It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.   01:02:04:20 - 01:02:21:05 Erin Croyle For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.   01:02:21:07 - 01:02:45:01 Erin Croyle My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.   01:02:45:03 - 01:03:13:14 Erin Croyle Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.   01:03:13:16 - 01:03:45:13 Erin Croyle And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.   01:03:45:15 - 01:04:14:11 Erin Croyle What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.   01:04:14:13 - 01:04:48:13 Erin Croyle Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?   01:04:48:15 - 01:05:14:09 Erin Croyle One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.   01:05:14:11 - 01:05:37:14 Erin Croyle Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.   01:05:37:16 - 01:06:05:05 Erin Croyle I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.   01:06:05:07 - 01:06:30:14 Erin Croyle Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.   01:06:30:16 - 01:06:57:11 Erin Croyle Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.   01:06:57:12 - 01:07:28:02 Erin Croyle Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.   01:07:28:03 - 01:07:50:20 Erin Croyle So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else.   01:07:50:22 - 01:08:19:06 Erin Croyle My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion.   01:08:19:08 - 01:08:42:14 Erin Croyle Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us.   01:08:42:16 - 01:09:05:22 Erin Croyle The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite.   01:09:05:24 - 01:09:30:04 Erin Croyle They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children.   01:09:3

Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the National Council on Aging, that's an economic value that totals more than $470 billion. Since November is National Family Caregivers Month, we wanted to highlight what it means to be a caregiver and why everyone should be looking out for the caregivers in their lives. The Odyssey: Parenting. Caregiving. Disability.  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: Read more about how different caregiving and parenting are on the Center for Family Involvement's blog: CAREGIVING AND PARENTING ARE NOT THE SAME CAREGIVING AND PARENTING ARE NOT THE SAME: BACK TO SCHOOL EDITION Learn more about disability services and how to become a paid caregiver.     TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work with the Center for Family Involvement and VCU's Partnership for People with Disabilities.   01:00:37:05 - 01:00:47:20 Erin Croyle I started this podcast because the media rarely highlights the issues that impact us so deeply. Caregiving is one of them.   01:00:47:22 - 01:01:10:03 Erin Croyle More and more, we're seeing the term caregiving lumped in with general parenting duties, diluting what it truly means to be a caregiver. In honor of November being National Family Caregivers Month. I'm going to break down how parenting and caregiving are fundamentally different.   01:01:10:05 - 01:01:38:17 Erin Croyle I'm going to keep it real with you. Listener. This episode is really late. It should have been out last month and that episode is still coming. It's in honor of October being National Disability Employment Awareness Month, and I've interviewed two wonderful guests already and that will be out soon. But like so many parents and caregivers, I know things are just relentless.   01:01:38:19 - 01:02:07:08 Erin Croyle And I am at the point in my life where I recognize that it is impossible to meet all of the demands placed on us as parents who are also caregivers. But it's almost as impossible to realize that what we as parents and caregivers come to know is our normal is not the norm and it is so important to point this out, not to wallow in how hard it can be because nobody has time to wallow.   01:02:07:14 - 01:02:33:23 Erin Croyle And who the heck wants to anyway, right? But it's important to validate the feelings of overwhelm and burnout and exhaustion and sadness and frustration that we feel this society we live in isn't designed for kids like ours, and it's not kind to caregivers either. Even politics. And we don't really get into politics, right? I leave that out of this.   01:02:34:00 - 01:03:03:20 Erin Croyle But for caregivers, there are things you need to know during voting cycles about the way that our government structures work that most people don't even know are there. You have to understand health care and Medicaid and waivers and supports that your children will need when you're gone. And you have to face the extreme difficulty of knowing that you could very well outlive your child.   01:03:03:22 - 01:03:33:20 Erin Croyle Do you have to set up things for when you're gone to make sure that your kid is going to be okay? It's something else. And I don't think that as caregivers, we really talk about that openly. That kind of melancholy that we live in. And this isn't just about those significant disabilities where someone will need care their whole life.   01:03:33:21 - 01:04:08:11 Erin Croyle I mean, that's certainly part of it. But I've got to be honest, my own able isn't blind in me to how difficult it can be to care for someone with ADHD or mental health struggles. Neurodiversity. Physical Disabilities. Even though someone will be able to live on their own one day with less supports does not mean that the caregiving to get them to that point is not substantial.   01:04:08:13 - 01:04:41:04 Erin Croyle It's a lot. And just getting a diagnosis for these invisible disabilities in rare conditions is really hard. And that alone takes time. Believe me, I'm there. I have three kids and neurodiversity is through and through in our household. And and we didn't really see that until later because my oldest child's needs were so great. The idea that there was neurodiversity in my youngest, I don't think that I picked that up soon enough.   01:04:41:04 - 01:05:12:15 Erin Croyle And I'm still struggling to recognize what they need and the differences. And that's coming from me. Who was diagnosed late in life with ADHD, who's understanding my own nerd adversity and how that's impacted me my whole life. There's such a stigma to so many disabilities. Neurodiversity is whatever you want to call them that we fail to recognize the accommodations and supports and understanding that is needed.   01:05:12:17 - 01:05:44:09 Erin Croyle And unless you experience that, you're not going to understand it. And in fact, I know in some ways those invisible disabilities can be harder because you have to constantly prove to people that it's not a spoiled kid, that it's not a bad child, that it's not bad parenting. It's not. I used to joke that no, doesn't really work in our house and I could feel the eye rolls from the family elders.   01:05:44:11 - 01:06:31:03 Erin Croyle And I'll tell you what. No does not work in our house. It just doesn't. And it's hard. My kids aren't spoiled. Just had to take a completely different route of how I view parenting than what I thought it would be. And I often wonder who I would be if my kids were non-disabled and neurotypical. And I'm actually really grateful that the differences in my kids have enlightened me to the differences that we need to accept in this world, in this society, in our schools, everywhere.   01:06:31:05 - 01:07:01:01 Erin Croyle And we're still not there. That's why we really need to highlight how complicated and different the caregiving component of being a parent caregiver can be. My first child, Arlo, as I mentioned in the intro, was diagnosed with Down syndrome soon after he was born. Later came other diagnoses hearing loss, sleep apnea, ADHD for him as well. Anxiety. He's immunocompromised.   01:07:01:03 - 01:07:28:14 Erin Croyle We've dealt with heart issues both early on and then later asthma, and then most recently something called ITP or chronic thrombocytopenia. This is low platelet counts that you discover in routine bloodwork, and that routine blood work is routine for my kid with Down's syndrome. But most kids don't have to have annual bloodwork to monitor thyroid and iron and all of these things, right?   01:07:28:14 - 01:07:56:06 Erin Croyle That's just another caregiving aspect that is necessary and important, but it's a lot. And thankfully, my son is very good with doctors, but early on he wasn't. And it was torture. Taking him to see an EMT and have to hold him down to get his ears cleaned or literally wrap my body around him for his blood draws. It rips your heart out.   01:07:56:08 - 01:08:21:19 Erin Croyle And in so many cases, we don't really have anyone to talk to because if you turn to family elders who haven't been impacted by disability, I mean, I remember one person saying to me how parenting is all about disappointment and letdowns and you got it all at once when your son was born with Down syndrome. As a new parent, I just kind of nodded and thought, okay.   01:08:21:21 - 01:09:00:17 Erin Croyle And that is the biggest bunch of baloney I've ever heard for children who are neurotypical non-disabled. The decks aren't stacked against them at birth right. But if you're in a wheelchair, if you have hearing loss, if you have any sort of thing that needs extra help or assistance, even though it's there, my gosh, it's hard to find. And it takes someone who can have the tenacity, the patience, the time and the energy to find all the supports that are there.   01:09:00:19 - 01:09:27:06 Erin Croyle And even the supports that are there are so tough to get. I mean, waivers, my son has elopement issues and we have a waiver for him. And we wanted a fence as an environmental modification to help keep him safe in our yard without having to be out there constantly just to give him space without someone hovering over him.   01:09:27:08 - 01:09:53:04 Erin Croyle And it took five years to get that approved. Much of that because of errors from the people working in the waiver system. I mean, that's the sort of thing that people are dealing with, the supports in place like respite care, personal care attendants, the hoops you have to jump through to get those supports are so tough to get.   01:09:53:06 - 01:10:21:22 Erin Croyle And the people in those roles, they don't get paid enough or they're not really invested or they're college students, so they're in and out and gone. And as parents you have to train them. So you have to train a caregiver every couple of months. It's exhausting. And when parents or family members are providing the care, it is really difficult for them to be paid as caregivers.   01:10:21:24 - 01:11:12:10 Erin Croyle Most states don't allow it, certainly not under 18. And the income loss that you face as a family who has to support children with disabilities, even if you have help around, it's substantial and it just creates this extra stress in your life that you really don't need. Even the term caregiving is being watered down. I get the grandparents an

Meaningful inclusion is possible, if we're being honest though, it's so rare that most folks don't even know what it looks like. In part two of this episode on inclusion in public schools (be sure to check out part one!), Erin Croyle has educator and advocate Trina Allen break down what co-teaching is, how it works, and what can be done to make truly inclusive education a reality.  The Odyssey: Parenting. Caregiving. Disability.  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: Talia A. Lewis' Working Definiciton of Ableism. How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done. National Center for Education Statistics releases various annual reports and as well as topical studies.  More on the Ithaca City School District.  Inclusion benefits EVERYone. Learn more about the Individuals with Disabilities Education Act (IDEA).         TRANSCRIPT: 01:00:07:11 - 01:00:39:01 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I joined the caregiver club 14 years ago when my first child was born with Down syndrome. My journey weaved its way here, working for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:39:03 - 01:01:09:07 Erin Croyle This podcast highlights the joys and hardships we face. Celebrating how amazing the odyssey of parenting, caregiving and disability can be. While examining the spiderweb of complex issues, we're tangled in, The fight for meaningful inclusion in our schools is a struggle for so many of us. In our last episode, I spoke with special education teacher advocate, activist and parent Trina Allen.   01:01:09:09 - 01:01:31:21 Erin Croyle We left off talking about how gut wrenching advocating for an inclusive education can be, especially as our kids get older. And we're picking up right there with Trina telling us not only that it can be done, but how we can do it.   01:01:31:23 - 01:01:47:19 Erin Croyle I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track. The thing is, like a kid with Down syndrome is one kid with Down syndrome.   01:01:47:22 - 01:01:50:04 Trina Allen Thank you!   01:01:50:06 - 01:02:17:19 Erin Croyle Yes, Autism is one kid with autism. CP And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is. I think that our schools, once we get to a certain level, it's not parents failing, but it's their schools not offering enough options for kids with more significant needs.   01:02:17:19 - 01:02:34:24 Erin Croyle Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that. Trina Allen Fix it! Erin Croyle They reach a certain age and there's no choice anymore, right? No other option anymore.   Trina Allen So while we're on the fight for inclusion, it cannot be on the back of our individual child and listening to what he needs in the moment is the biggest fight of ableism. Listening to him is the biggest fight of Abel's that you will ever do with him. The issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things.   01:03:03:03 - 01:03:27:24 Trina Allen That math class needs to be structured on. These are the standards, and every single kid in it is at a different place and it needs to be supported in that way. And so do I think it can be done? my God. Math is like the easiest. You know, it becomes more complicated in like history and English, but it doesn't have to be if the design is universal.   01:03:28:01 - 01:03:47:17 Trina Allen Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son. That curriculum needs to be created with him and created with the kid at a different level and created with a kid at the different level and created with the kid in a different level.   01:03:47:19 - 01:04:27:00 Trina Allen And it needs to be individualized. And that is doable with time and space. And what I do like about the current district that, you know, that we both are dealing with is that's the goal. And when the systems have not created all of those levels of curriculum and are displayed by the slide show and are displayed in all those quiet ways that are as equal and that are that his production is as integrated and valued as what they expectation is that his production is the expectation.   01:04:27:00 - 01:04:54:03 Trina Allen Right. And that there are multiple other children in the class with interesting and independent and specialized production. That model is doable. You know, it's so doable and I can see it and I know how to do it. I just need some time and I know that other teachers want that. And with all liberatory struggles, we need to understand that we are not working.   01:04:54:03 - 01:05:25:24 Trina Allen For now, boys. We have to harm reduce in the now, right, Because it can't be on the back of our own children. But to know that we are creating a world in which that loves them better is important. All of those kids in the class that sees what a truly universal design lesson is are benefited right, whether they're disabled or neurotypical or not.   01:05:26:01 - 01:05:37:10 Trina Allen I think that that is happening. It's just not happening fast enough and it's not happening in every classroom. It depends on the teacher. The teacher. It depends on the there needs to be a good teacher herself.   01:05:37:12 - 01:05:40:05 Erin Croyle yeah, absolutely. And that doesn't exist everywhere.   01:05:40:09 - 01:05:48:10 Trina Allen No. And in most places it doesn't. And most places pull out of teaching is what they're just talking about. Reasons for it. They say, Coach Jane, you're talking about racism.   01:05:48:12 - 01:05:57:10 Erin Croyle And what in fact, I think I think briefly, I think it's important because I believe that there are going to be people listening who don't even know what a co teaching model is. Do you want to explain that?   01:05:57:15 - 01:06:47:11 Trina Allen Yes. Okay. You're right. Okay. So there are multiple ways in which co teaching can look well we talk about co teaching is just like term is meaningless unless we're talking about the individual place in which it's practice. When I say co teaching and I actually mean it as opposed to placement, I mean a classroom with two teachers who create the lessons together who are based off of whatever it is that you're trying to teach, whether it be art or history or math or whatever, so that you are creating it together in a universal design, meaning that every standard from pre-K to 12th grade So you're going to have some kids that go are reading at   01:06:47:11 - 01:07:32:01 Trina Allen the 12th grade level, you better hit them right? You are making the instruction to meet an understanding at each space. Right? And that I expected outcomes are somewhere on that distribution and you don't pick which one is right. You just portfolio out there where that kid is right and you teach them. The next thing we can talk about seventh grade standards and we can say, yes, this is where we're hoping that kids are at with the understanding that not everyone's going to be at that place and with the understanding that some kids might be in ninth grade and some kids might be a fifth grade.   01:07:32:04 - 01:07:51:01 Trina Allen And that is fine for the kids at fifth grade, we're looking at the sixth grade standards for the kids. At ninth grade, we're looking at the 10th grade standards. So we're moving them where they want to go. And also based on their personal needs, let's say they really hate math and they're just getting through it. But my God, they love English.   01:07:51:01 - 01:08:23:13 Trina Allen So, you know, let's let's push them a little harder on that. Let's show them all this wealth of information that they're very interested. It's individualized based both on where they're at in that particular subject and also personal understanding and ways in which they learn. And it also needs to be, if it's a student who is not speaking and needs to be completely accessible with their AC, and it needs to be provided in multiple output ways, everything needs to be using the technology assistance that they need and have, and it needs to be titrated to their individual.   01:08:23:13 - 01:08:57:07 Trina Allen And that is a big ask for Koti to write. That's just one lesson and I think I've said a lot. So is it doable in every time and every way? If you're teaching five different periods and you have 100 kids and no, it's really, really hard to do that, especially when you're often not giving a co teacher or when people misunderstand the model and think that the co teacher is to adapt the work, that there is an expected work.   01:08:57:09 - 01:09:24:02 Trina Allen And it's this narrow standard that you're teaching for the class and then everything else is an adaptation you make, you do with your kids that is not co teaching, that is placement in a generic classroom. It needs to be the curriculum needs to be created with guidelines at everyone's level. Otherwise kids fall through the cracks, right, right. Or disabled or not.   01:09:24:04 - 01:09:58:14 Trina Allen And that co teaching model is great. It also, in my opinion, needs to have it can't just be one student that is multiple disabled, ha

Imagine being treated as a guest in your own school.  For many students, not only is that their reality - it's by design.  In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond.  The Odyssey: Parenting. Caregiving. Disability.  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: Talia A. Lewis' Working Definiciton of Ableism. How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done. What is the Affordable Care Act? National Center for Education Statistics releases various annual reports and as well as topical studies.  More on the Ithaca City School District.  Inclusion benefits EVERYone. Learn more about the Individuals with Disabilities Education Act (IDEA).     TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities.   01:00:39:04 - 01:01:08:18 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know.   01:01:08:20 - 01:01:28:22 Erin Croyle She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me.   01:01:28:24 - 01:01:38:13 Erin Croyle Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place?   01:01:38:16 - 01:01:59:07 Trina Allen Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on.   01:01:59:07 - 01:02:22:07 Trina Allen And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students.   01:02:22:09 - 01:02:48:19 Trina Allen And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education.   01:02:48:19 - 01:03:20:16 Trina Allen And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation.   01:03:20:18 - 01:03:38:24 Trina Allen It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen.   01:03:39:03 - 01:04:16:08 Trina Allen And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions.   01:04:16:10 - 01:04:40:06 Trina Allen And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website.   01:04:40:08 - 01:05:06:15 Trina Allen What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices.   01:05:06:15 - 01:05:08:20 Trina Allen That's sort of where I'm.   01:05:08:22 - 01:05:20:06 Erin Croyle Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices?   01:05:20:08 - 01:06:06:22 Trina Allen Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own   01:06:06:22 - 01:06:31:07 Trina Allen heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best.   01:06:31:09 - 01:06:39:20 Trina Allen And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research.   01:06:39:22 - 01:07:06:23 Erin Croyle Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available.   01:07:07:00 - 01:07:51:18 Erin Croyle The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith.   01:07:51:20 - 01:08:10:04 Erin Croyle But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it?   01:08:10:06 - 01:08:52:00 Trina Allen The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right?   01:08:52:02 - 01:09:24:09 Trina Allen It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that.   01:09:24:09 - 0

Looking to feel better? Want to help your children feel better?  It might be time for a detox. And the one we're talking about actually works.   The Odyssey: Parenting. Caregiving. Disability.  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: Details on the United States Surgeon General's Advisory About Effects of Social Media on Youth Mental Health.    Surgeon General Dr. Vivek Murthy's Op Ed Essay on why he's calling for a warning label for social media.    Here is a full review of the book The Anxious Generation by Jonathan Haidt.    Looking for ways to protect your family when they are online? Check out Erin's article on how to make that happen: Time for Some Screen Cleaning. Want to share your own experiences attempting a digital detox? Send Erin an email!   TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement and Lisa's Partnership for People with Disabilities.   01:00:34:17 - 01:01:06:12 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating of the tough stuff for so many of us. Everything feels harder than it should lately. Most everyone I know is just sort of getting by. That whole living your best life vibe that we had going around several years ago is mocked in a lot of circles.   01:01:06:14 - 01:01:22:15 Erin Croyle So what's going on and what can we do to change it? Dare I say, a detox is in order and the one I'm recommending is something virtually everyone needs.   01:01:22:17 - 01:01:46:01 Erin Croyle Is anyone okay right now? I'm living in this fog that's just clinging to every part of my being. My brain, my body, my soul. It lightens now and then and even lifts for a bit once in a while. But most of the time, it's so dense. I feel it pulling me down. When I talk to people close to me, most of them are in this metaphorical fog too.   01:01:46:03 - 01:02:10:05 Erin Croyle I'm sure that some of what my age said is feeling is partly part of middle age, but I see it in my children and other kids their ages. I see it in. I see it across the board. This is an unprecedented mental health crisis that we're in. Our whole country is living under a heaviness like never before. So how do we feel?   01:02:10:05 - 01:02:39:01 Erin Croyle Better. Look, I'm a journalist, not a doctor. Over the years, I've read, listened to, watched and or tried practically every bit of healthy living advice out there clean eating, running, tracking macros, fitness watches, apps, sleep hygiene, skipping breakfast, and sometimes lunch, also known as intermittent fasting. And even though I know that they're ridiculous, I love the idea of a detox.   01:02:39:03 - 01:03:12:01 Erin Croyle The problem is none of them work. Even if I feel better for a little bit once, whatever I've cut out comes back into my life. All that work is for naught except for one. As my daughter would say. Drum roll, please. The Digital Detox. My first true digital detox happened by accident nearly a decade ago. We were on a family vacation in Michigan's Upper Peninsula and we had absolutely no service.   01:03:12:03 - 01:03:41:09 Erin Croyle So imagine a week without a ping, a ring or a vibration interrupting a darn thing. There were no new notifications on social media. I didn't have the ability to post anything and therefore there was no need to see if there were any reactions. I didn't have any breaking news, no texts. It was amazing. That week was transforming. We live in an era of information overload that is beyond comprehension.   01:03:41:11 - 01:04:15:03 Erin Croyle The only way to realize this is to pull yourself out of it. Pretty much everything you pull up on your phone is designed to get you to use your phone or that app or that website even more. This podcast, same thing. Every entity has their own reasons to get you to go down the rabbit hole. Now, for the work I do, it's so that people with disabilities and their families, whether it's ADHD or cerebral palsy or mental health or Down's syndrome or whatever, it's to have meaningful content with relatable stories that we can all listen to.   01:04:15:05 - 01:04:44:08 Erin Croyle It's to connect people through digital media or in person, because this experience can be so isolating. It's providing information and resources for people with disabilities and their caregivers. It's collaborating with professionals and community members to make the world a better place for everyone. Ours is a well meaning rabbit hole, as are many others. But there are plenty of other holes that we fall down, and they range from harmless fun to vapid to downright dangerous.   01:04:44:10 - 01:05:16:17 Erin Croyle Now, as an adult, I'm aware of the social media suck. My children, however, are in defiant denial of the pull it has on them. I finally have some research to back up my concerns. Our surgeon General, Dr. Vivek Murthy, is calling for a warning label for social media platforms. He points out that it's clear that it's a contributor to our mental health crisis and that we have to act now, even though the information we might have is imperfect.   01:05:16:19 - 01:05:46:04 Erin Croyle In his latest book, The Anxious Generation How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness. Social psychologist Jonathan Haidt demonstrates the direct correlation between the introduction turned widespread use of smartphones. Social media, video games and other online platforms to the increasingly worrisome rise of the mental health crisis that we've witnessed over the last decade plus.   01:05:46:06 - 01:06:17:23 Erin Croyle He does this using copious amounts of research. I'll put the links to the Surgeon General's initiative and more about the book and its author in the show notes. Reading his book confirms so many things that I've heard anecdotally from other parents and educators, particularly the term forever elsewhere. It's how they describe children today, especially in school, where they should be engaging and interacting, but they always seem sort of absent.   01:06:18:00 - 01:06:45:12 Erin Croyle If you talk to educators who've been in the field for a while, they'll tell you they see a dramatic change in students today and they'll describe something that sounds just like that forever elsewhere phenomenon. It's really interesting to me how our society puts Steve Jobs on this pedestal because he created the iPhone and the iPad and so many people just hand their children these iPads and kids have their own tablets.   01:06:45:14 - 01:07:14:00 Erin Croyle But Steve Jobs wouldn't let his kids use either of these devices in their home. Bill Gates talked about how he limited screen time for his own children. So our tech leaders know about the dangers. And we now have plenty of evidence that our social media companies are in the business of creating addictive platforms to draw us and especially children in to be heavy users.   01:07:14:02 - 01:07:45:13 Erin Croyle I mean, if you think about it, we are creating content and making them money, most of us, for free. Now, I know it's hard because it can be so much fun and it connects us with people that we know. But I don't know when you think about it, do you really need all that connection? And when I look at all my friends on Facebook and Instagram, these hundreds of people, I mean, no offense to many of you, but do we need to know what's going on in each other's lives?   01:07:45:15 - 01:08:26:12 Erin Croyle Do I really want to be connected to my entire graduating high school class anymore? I'm 46, and the way that our online interactions impact our in-person interactions is palpable. It's desensitized us to being humane and empathetic. It's so easy to write a flippant comment on someone's post that we would never dream of saying to that person to their face.   01:08:26:14 - 01:09:22:03 Erin Croyle It's impacting humanity. It's impacting our caring, our kindness, our tolerance. We really need to look at that. Beyond that, though, just that constant stimulation, we aren't even aware of what it's doing to our brains. But what I can tell you from my own experience when I do quote unquote detox or make intentional efforts to not have my phone or not be online or not check anything, I feel better when we're in the throes of the busiest times of the year and you get the vibration or the text or the ping.   01:09:22:05 - 01:09:52:00 Erin Croyle It can just set you off. It's impossible to relax because we are constantly interrupted and there's a sense of urgency that we never had to deal with before. Someone texts you and they expect to have the response right away. What is that doing to our nervous system? Could part of this be why we are all so tapped out?   01:09:52:02 - 01:10:28:21 Erin Croyle A lot of people like to blame the mental health crisis on the pandemic and the isolation we experienced while we were figuring out just how contagious and awful COVID is. In what in that time, I know that I saw my own children grade school age children, online hours every day. And what I can tell you is even my youngest, who was a kindergartner at the time, was able to circumvent so many safeguards to just go on to YouTube.   01:10:28:23 - 01:10:54:16 Erin Croyle These were school devices and they could figure out how to skip school at home. It advanced the ways that

In this epiosde we get an insider's perspective of the world of special education from someone who sees it from both sides.  Eleanor Janek is a dedicated special education teacher and a mother two two children with disabilties.  Her insight is both eye opening and incredibly useful for virtually anyone who is a teacher or a parent. The Odyssey: Parenting. Caregiving. Disability.  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: Here's a link to the Virginia Department of Education's Critical Decision Points resource that Eleanor talked about.            01:00:07:14 - 01:00:37:23 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the unique journey where sent on when a loved one has a disability. I started down this path in 2010 when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:38:00 - 01:01:05:17 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is, but we don't shy away from the tough stuff. For many of us, advocating for and navigating special education services is one of those hard things. But we often don't realize that it's no walk in the park for educators either.   01:01:05:19 - 01:01:21:16 Erin Croyle That's why I made it my mission to talk to a special education teacher who is also a parent whose children also have disabilities. Which brings me to today's guest, Eleanor Janek.   01:01:21:18 - 01:01:25:04 Erin Croyle Eleanor, thank you so much for joining me.   01:01:25:06 - 01:01:26:20 Eleanor Janek Thank you.   01:01:26:22 - 01:01:33:12 Erin Croyle Eleanor, can we start by you giving us a little bit of a background about who you are and what you do?   01:01:33:14 - 01:02:07:17 Eleanor Janek So I am a special education teacher in Virginia. This is my 16th year as a teacher, but my 25th year in education and I am 44 and I've been married for almost 19 years with two children. One is 16. She is deaf with cochlear implants and she has autism. And then I also have a seven year old who has ADHD and currently undergoing evaluations for autism as well.   01:02:07:19 - 01:02:15:19 Erin Croyle so you have quite the perspective. I'm curious what drew you to education and special education.   01:02:15:21 - 01:02:46:04 Eleanor Janek As a middle school student? I worked with students who had disabilities because mainly they were isolated from the general education students. So then I started working as an instructional assistant. When I was fresh out of high school. I was 19 when I started. So I was still, you know, pretty much a kid myself as an instructional assistant. But I had a career or established, you know, working with the school system, they say, is pretty much the best thing that you can do.   01:02:46:06 - 01:03:10:14 Eleanor Janek You get paid. You have your summers off. It's great, right? But then I quickly realized that without a college education, you did not get much respect from the educational community. So I pursued my degree in Psychology first and then my master's in education. So I've been doing I've been teaching special education for the last six years at a middle school.   01:03:10:16 - 01:03:38:05 Erin Croyle Eleanor, I'm really curious. You know, you mentioned to me before we were recording, you and I are very similar ages, and I think we have very similar experiences growing up in schools where even though special education existed, we never saw our peers who were disabled. We never really saw special education teachers. What was your experience growing up? Can you tell me what a typical classroom look like and then tell me what classes look like today?   01:03:38:10 - 01:04:09:20 Eleanor Janek Exactly like you just said. You know, our students with disabilities, the ones who had the more physical disabilities where you could kind of tell that they were different. One room all day long. Probably a special education teacher or an instructional assistant within that room with them. In my experience, as far as high school or middle school, you never saw students with disabilities or visible disabilities as they're now known in the mainstream setting.   01:04:09:22 - 01:04:35:11 Eleanor Janek I had a teacher who was my homeroom teacher who was a special education teacher. But other than seeing him in my home base, I never saw him out in the school anywhere. Whereas today, you know, when we introduce ourselves at the beginning of the year, we always introduce ourselves as teachers, myself and my general education partner. And we always tell the kids, you know, you're lucky.   01:04:35:11 - 01:05:00:11 Eleanor Janek You get two teachers in here, you're the bonus teacher represented in that way. But at the same time, now you see two teachers in a lot of classrooms where 20 years ago or almost 30 years ago when I was in school, you didn't see that it was just one teacher in the classroom. And our students with disabilities were pulled out into what they call a resource classroom.   01:05:00:13 - 01:05:16:14 Erin Croyle I mean, we still see a lot of students pulled out into self-contained and resource classroom today, but it's very different. So are you in a room then with co teaching and are you you're working together with the general ed teacher to adapt and modify curriculum then?   01:05:16:16 - 01:05:59:19 Eleanor Janek I am so I am primarily science. I do sixth, seventh and eighth grade science collaborative. More pull out happens at the elementary level and I'm at the middle school level, so I do work collaboratively with my teaching partners. For the past couple of years, I've been doing a schedule that's been kind of crazy and hectic as far as my teaching goes because I've been split into 45 minute chunks during the block and may only have one two at most three classes where I'm actually in the classroom for a full 90 minutes so I can have as many as ten classes in a two day period.   01:05:59:21 - 01:06:31:05 Eleanor Janek That's mainly because of the teacher shortage in Virginia and all states that are going on right now. I would love to have my full 90 minute classes back so I can work with my teachers for a full 90 minutes and my students for a full 90 minutes instead of doing 45 minute chunks or even 20 minute chunks, because that's what I ended up doing in two of my classes this year was working in one class for 20 minutes, going to another class for 20 minutes, going back to another class for 20 minutes.   01:06:31:07 - 01:06:34:03 Eleanor Janek It can get really crazy sometimes.   01:06:34:05 - 01:06:36:14 Erin Croyle That sounds like a lot.   01:06:36:16 - 01:06:38:07 Eleanor Janek And yes.   01:06:38:09 - 01:07:08:02 Erin Croyle Yeah. My understanding is to one of the one of the hurdles that special education teachers experience is a lack of planning time to really meaningfully do the work they need to accommodate these students. I'm curious what you see in the classroom and also how that shifted as we're in this teacher shortage. Was it easier before and now you're just hoping it will get easier again.   01:07:08:04 - 01:07:10:09 Erin Croyle Tell me a little bit about that experience.   01:07:10:11 - 01:07:40:18 Eleanor Janek So pre-COVID, all of my classes were 90 minute blocks. I had six classes and they were all 90 minutes. Since I am in the middle school setting, I do have the luxury of having a 90 minute planning block each day. Now, that being said, I also have six different teachers. Let me count. One, two, three, four, seven different teachers that I work with.   01:07:40:20 - 01:08:13:08 Eleanor Janek And it's only by luck of the draw that I might have a planning period in common with one of those teachers, maybe two. So a common planning period with them is not the norm for special education teacher, especially in science or middle school science, because sixth and seventh grade science do not have vessels. Eighth grade science has the flow that encompasses seventh and eighth grade science.   01:08:13:10 - 01:08:45:07 Eleanor Janek So the priority is not with science, unfortunately. It's kind of thing of the in my opinion and some of my general education teachers share this opinion that we're kind of the catch all sciences, the content that students with more significant disabilities can be placed in because it's supposed to be hands on learning and labs all the time in a place where they can socialize.   01:08:45:07 - 01:09:16:04 Eleanor Janek And that's a misconception with science. Like I said, pre-COVID, I got those 90 minute blocks during COVID. The county that I'm in was the only county in Virginia to be open full time. We didn't have any remote learning going on. We had an online school, but we were open full time. Kids were in the classroom. But our middle school students were in one classroom all day long, and they were rotated together.   01:09:16:06 - 01:09:42:06 Eleanor Janek They had the same electives together. They had the same lunch in the classroom with me. I was with them wherever every subject, all day long. I felt like I was the room mama of that calculus. After things got back to normal. Our middle school students weren't in the same classroom all day long, but they traveled with the same co-op of students.   01:09:42:08 - 01:10:21:14 Eleanor Janek Unless they had, like, a higher level math or language arts or they had a different elective. But for their core content classes, for the most part, they traveled with the same group to keep them kind

In this episode, host Erin Croyle and guest Dr. Kathryn Rooth talk about just how much, or how little, medical professionals know about treating patients with disabilities.  Is there a topic you want to learn more about? Something you want to ask Dr. Rooth? Feel free to contact Erin via email.   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.        TRANSCRIPT: 01:00:07:20 - 01:00:37:15 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. The creator and host of The Odyssey podcast explores the unique journey were sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:37:17 - 01:01:10:09 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is. While tackling the tough stuff to an unfortunate truth, many of us learn early on is how antiquated and ablest our health care systems can be when it comes to treating people with disabilities. Joining me today is Dr. Kathryn Rooth, board certified internist and pediatrician.   01:01:10:11 - 01:01:19:17 Erin Croyle She's also a strong advocate for people with disabilities and a mother of three.   01:01:19:19 - 01:01:25:06 Erin Croyle Kathryn, thank you so much for coming on. Can I call you Kathryn or should I call you Dr. Rooth?   01:01:25:08 - 01:01:29:20 Dr. Kathryn Rooth ERIN Of course you can call me Kathryn. We're friends. Thank you for having me.   01:01:29:21 - 01:01:43:04 Erin Croyle Thanks. Yes. Full disclosure, we're friends. But Kathryn is also just an authority on this, so I'm very excited to finally have you here. I want to start with your own journey. What made you want to become a doctor?   01:01:43:06 - 01:02:06:24 Dr. Kathryn Rooth It's kind of cliche, but I wanted to help people. As I got older and was in college, I took an interest in children with developmental disabilities and really wanted to advocate for them. I had this job where I worked for an organization that tried to integrate kids into the Boys and Girls Club who had developmental disabilities. That was my job.   01:02:06:24 - 01:02:23:02 Dr. Kathryn Rooth I really had no training, didn't know what I was doing as a college student, but I really recognized the need then and I took an interest then it kind of took off from there, like wanting to pursue something in the health care field and always kind of leaning towards becoming a doctor.   01:02:23:04 - 01:02:37:12 Erin Croyle I'm curious because with my own personal experience, I feel like my whole life I was so segregated from people with disabilities. What do you think drew you to helping people with it?   01:02:37:14 - 01:03:05:01 Dr. Kathryn Rooth I honestly, Erin, I don't know. I, I took psychology classes and so I kind of started learning about a lot of the developmental disabilities. And I thought it was very interesting and how underserved and vulnerable they were and really took an interest in that patient population that they kind of drove me in that direction. I wasn't sure if I was going to be a special ed teacher or something, but I wanted to do something with this population.   01:03:05:01 - 01:03:19:00 Erin Croyle And for so many of us, our understanding of med school, residency and beyond comes from television like Gray's Anatomy. Or if you're as old as I am, E.R. and Scrubs. So what is the process actually like?   01:03:19:02 - 01:03:46:04 Dr. Kathryn Rooth I mean, it's a long process. And first you have to get into medical school, which is incredibly hard. It took me on more than one occasion to apply to get in. And then once you're in, you do two years of lecture where you're in the classroom or you're doing a lot of basic sciences and chemistry pathology, and then your last two years, you're doing mostly rotations in different hospitals and clinics settings to kind of figure out what type of doctor you want to be, right?   01:03:46:04 - 01:04:07:16 Dr. Kathryn Rooth Because in medical school you're just becoming a doctor. And then once you figure out what type of doctor, then you apply to a specific residency. So I wanted to be an internist and a pediatrician, which was a combined residency. So then you apply to residency programs and depending on what type of specialty determines how long that training is.   01:04:07:16 - 01:04:30:03 Dr. Kathryn Rooth So mine was four years. So four years of medical school. Then you go through this very stressful match where you rank, where you want to go, and all the residency programs rank who they want, and then you kind of have this cluster and you hopefully get, you know, where you want it to go in your in your list, which I was fortunate to go to Baystate Medical Center and Springfield, Massachusetts.   01:04:30:03 - 01:04:52:03 Dr. Kathryn Rooth And I had a wonderful experience. So and I was there for four years. But essentially back then it was 80 hour workweeks, often 30 hour shifts every fourth day on a lot of the inpatient rotations. So it was exhausting. You know, they talk about like a firehose coming at you of information and knowledge and learning. That's what it was.   01:04:52:03 - 01:04:59:13 Dr. Kathryn Rooth It was just it was a great experience. I would do it again. I could not do it again. At this age, though.   01:04:59:15 - 01:05:04:06 Erin Croyle I mean, you're in school for so long and there's so much to learn about the human body.   01:05:04:08 - 01:05:05:05 Dr. Kathryn Rooth Yeah.   01:05:05:07 - 01:05:11:19 Erin Croyle Where does disability fall into all of that? And more specifically, intellectual and developmental disabilities.   01:05:11:21 - 01:05:30:10 Dr. Kathryn Rooth Right. So in medical school, I'm trying to think back it was a long time ago when I went to med school between 2004 and 2008. I don't recall very much at all, if any. No desk to my medical school, but I just think there was a lot of other priorities. I don't even want to say priorities, but just wasn't on the radar.   01:05:30:11 - 01:05:56:19 Dr. Kathryn Rooth I'm not sure exactly in residency because I was a pediatrician, I did get a good exposure to developmental disabilities, and I also picked electives in genetics and developmental disability rotation. So I chose to have more exposure to that because I was interested in that in my internal medicine side, not not that much.   01:05:56:21 - 01:06:24:18 Erin Croyle So I find it really interesting that you say that because, for example, growing up I was like a really healthy kid. I didn't even do annual well visits. I just did like vaccines and physicals. And as a young adult, the only medication I took was birth control. So my knowledge of anything and navigating medical systems was minimal. And then all of a sudden, as a first time mom, I have a child with Down syndrome.   01:06:24:19 - 01:07:00:01 Erin Croyle And he also had medical complexities. And I was thrown into navigating our health care systems on hyperdrive. I remember reading early on trying to find the right pediatrician for my son. It could be difficult. And I did find that because if a doctor didn't really care to understand and the differences in anatomy that come with Trisomy 21 or I think of all my friends whose children have even more rare genetic conditions, if there was no special interest there, the medical care really did lack.   01:07:00:03 - 01:07:12:07 Erin Croyle So, you know, as someone who works in this field, what would you recommend for parents who are just starting out navigating this, trying to find the right pediatrician?   01:07:12:09 - 01:07:37:19 Dr. Kathryn Rooth My heart breaks for people who can't navigate the health care system, who are not in the medical world and don't know how to navigate it, because it is a huge, daunting undertaking. You have to be comfortable with your doctor, right? I mean, when I relocated to a different city, I wasn't completely comfortable with the pediatrician. Like, I have to be comfortable with them, you know, I have to make sure they're hearing me so I change.   01:07:37:19 - 01:08:01:15 Dr. Kathryn Rooth It is okay to change doctors if you feel like they're not hearing me. My comfort level is not what it should be. Then it's okay to find a different fit. Pediatricians understand this. They're not going to connect with every single patient. They want you to find a good fed. Some pediatricians are better at certain diagnoses and others and sometimes even on their website.   01:08:01:17 - 01:08:17:13 Dr. Kathryn Rooth I'll look even now as a health care professional trying to find a specialist. What is their specific interest and is it ADHD? Is it autism? You know, is it this? And they're like, okay, this is what they are more passionate about. I'm going to try to see if I can get in with that one.   01:08:17:15 - 01:08:41:07 Erin Croyle Yeah, and I love that you brought up specialist, because I know this might sound ridiculous, but I just want to be honest about this because I'm sure I can't be the only one. I went to school. I am an educated person. I was worked internationally as a journalist, and then I was thrown into the medical system and trying to seek out specialists.   01:08:41:09 - 01:09:07:06 Erin Croyle You know, I didn't quite even understand their titles. They were so new to me. So, you know, I think pulmonology and endocrinologist and hematologist and I got endocrinology and oncology mixed up because it's just this entire new world of jargo

Modern day parenting can be so isolating.  It's an unfortunate reality many of us are struggling with.  If you have a child or children with neurodiversity, medically complexities, or disabilities, it can feel downright lonely.  But you are NEVER alone in this journey.   The Odyssey: Parenting. Caregiving. Disability.  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:  Need to talk to someone? The Center for Family Involvement has family navigators ready to listen! They provide 1:1 emotional and informational support as well as community service and systems navigational support. These are volunteers with lived experience who are trained to meet families where they are.  Call or email our help line and someone will be in touch within 48 hours. If you live outside of Virginia, we can connect you with a sister network in your area. Helpline: 877.567.1122 Email: cfihelpline@vcu.edu   David Egan is an advocate, speaker, author, and extraordinary person who you can learn more about here.   John Franklin "Frank" Stephens is a disability advocate, actor, and athlete who penned this brilliant rebuttlle to Ann Coulter following her referring to President Barack Obama as "the retard" in 2012.   TRANSCRIPT: 01:00:07:17 - 01:00:37:00 Speaker 1 Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down  Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:02 - 01:01:05:13 Speaker 1 This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we've tackled the tough stuff, too. There's been a whole lot of hard in my life lately, so I'm changing it up. Rather than an interview, it's just going to be me. So without further ado, here I go.   01:01:05:15 - 01:01:32:23 Speaker 1 Parenting can be so isolating if you add disability, neurodiversity, medical complexities into the mix, it's often even more so. And it starts from the very beginning. When I was pregnant with my son. I remember so distinctly how excited my husband and I were when the doctor did the ultrasound and said, Everything's good. You have a perfectly healthy baby.   01:01:33:00 - 01:01:58:05 Speaker 1 And now I find the term perfectly healthy to be kind of triggering because what is healthy? My son is perfect. This was in 2010. So this was before we had all the blood tests that come now. The ultrasound didn't show anything of concern, and we went ahead and decided not to do the amniocentesis because there was a risk of miscarriage.   01:01:58:05 - 01:02:26:22 Speaker 1 And we just thought, okay, well, everything looks okay. There's nothing to worry about. We'll continue on. And I had this really lovely pregnancy and we were living in Malaysia at the time. So we traveled. We went to a friend's wedding in India and a babymoon in Bali and all of these wonderful, fun things. I just have the best memories and honestly, I'm really thankful for that because it was just this really great worry.   01:02:26:22 - 01:02:59:03 Speaker 1 Free pregnancy and all of a sudden at 39 weeks, his movement slowed and virtually stopped. It's interesting to me, though, I have this beautiful, beautiful pregnancy. I was reading all the baby books and all of the things and then poof, everything changed. My son stopped moving. We went into the doctor. We were told to have an emergency C-section.   01:02:59:05 - 01:03:27:01 Speaker 1 And because of all the things I read, it made me question all those things. And so I was thinking that I shouldn't have an emergency C-section. What if the doctor's wrong? What if the doctor just wants to have the weekend off? Because I think it was a Friday. It just set me up for so much more hurt than was necessary.   01:03:27:03 - 01:03:53:02 Speaker 1 This doctor was brilliant. She was able to calmly convince me to have this C-section and not to wait. She calmly stressed that waiting would be bad so that doctors saved my son's life. Had we waited, had I not gone in when he stopped moving and had we waited to try to push, Arlo probably would not be here today.   01:03:53:04 - 01:04:17:03 Speaker 1 When he was born, he was my first child, so I didn't realize until I had my other two children that the silence that we experienced after they got him out was actually eerie and scary. I was allowed to give Arlo a kiss on the head and they took him away and he went to the Nikko and I went to the recovery room.   01:04:17:05 - 01:04:42:21 Speaker 1 When I came to and was up in our room, room. The pediatrician came in and told my husband and I that he suspected that Arlo had Down syndrome. And this came as a total shock to us, just absolutely floored and honestly devastated.   01:04:42:23 - 01:05:10:16 Speaker 2 Which is a terrible feeling to have when you just had your first child. Arlo Having Down syndrome is one of the best things that ever happened to me. He has taught me more about life and myself and this world than I could ever imagine. But the fact is he is the first person I met in this entire world with Down syndrome.   01:05:10:18 - 01:05:49:02 Speaker 2 I was 33 at the time. I mean, that alone just felt lonely to have no understanding of what my child's life would be. And then sitting there while he was basically in a bubble with oxygen, reading about Down syndrome and learning about life expectancy and all of these things that our world considers wrong because we are so scared to say the word disability or celebrate the word disability or understand or accept or embrace it.   01:05:49:04 - 01:05:52:21 Speaker 2 And it's really frustrating to me in retrospect because.   01:05:52:23 - 01:06:39:03 Speaker 1 One in four Americans have a disability that impact their everyday life. Down syndrome is fairly common. We know more about it than a lot of other conditions, but yet we know so little about it. I know now because I've been in this for 14 years and I've been able to really think about things. Part of the reason it felt so devastating and so shocking is because we still segregate our world between people who are disabled and not disabled, especially when it comes to intellectual and developmental disabilities.   01:06:39:03 - 01:06:55:24 Speaker 1 Because anyone who speaks in an untraditional way and communicate differently and looks or behaves in a way that doesn't conform to what we think are societal norms is looked at differently.   01:06:56:01 - 01:07:24:16 Speaker 1 My son has Down syndrome. It's common, but he still gets stared at in stores and it stinks. I think about how this world is and how people look at my son and friends of his and friends of mine who have other disability sees and how my peers, adults my age, older and younger as well. They're in similar positions that I was in when Arlo was born.   01:07:24:18 - 01:07:56:19 Speaker 1 They've probably not had an actual meaningful interaction with anyone who's disabled. I'm certainly not anyone with an intellectual or developmental disability, and I think that's a challenge that we as parents of kids who have disabilities don't talk about enough. Not only are we learning to navigate the world with our child and for our child because we are our child's voice for the foreseeable future.   01:07:56:21 - 01:08:06:12 Speaker 1 And as much as I help my son advocate for himself, even at the age of 13, he doesn't communicate in a traditional way. He doesn't.   01:08:06:15 - 01:08:08:02 Speaker 2 Really.   01:08:08:04 - 01:08:44:16 Speaker 1 Care about a lot of the things that I'm fighting for for him. I don't know if he understands them or not. I am trying to help him find his voice. Until then, I am his voice and there is a lot of learning that we have to do as parents to be able to do that. Disability is such a separate condition that if you're someone who has never been a part of the disability community and you have a child with a disability, you have a tremendous learning curve.   01:08:44:18 - 01:09:02:18 Speaker 1 In addition to being that person's parent and learning how to be a parent. You also have to learn about the medical components that go into caring for your child, the community based living components that go with taking care of your child, which.   01:09:02:20 - 01:09:04:11 Speaker 2 My gosh.   01:09:04:13 - 01:09:58:13 Speaker 1 Are so hard to figure out. And they vary from state to state. There's early intervention, which is fabulous, but it varies from state to state, and you've got to figure that out. And then the schools. I still remember being at the farmer's market with Arlo when he was a wee one and a mother of an adult child with a disability, just coming to me and almost tearfully telling me how hard it was helping her child navigate the schools and said to me how she still feels the bruises from that time in her life because the schools just don't understand or don't have the funds or don't have the want to support students with disabilities.   01:09:58:15 - 01:10:53:24 Speaker 1 It's hard. So we have to learn all this new jargon and learn all of this medical staff and understand the finances of supporting someone for their entire life. And my gosh, the mounds of paperwork that you have to do. I have three kids. The paperwork for Arlo, because of his disability is three times as much as my other two children and then while we're doing all of this work to help our child and advocate for our child and help our child learn to a

You are what you eat. That adage has been around forever for a reason.  The foods we consume have changed drastically over the last few decades. Packaged, highly processed foods have flooded groceries, gas stations, schools, sporting events, and gatherings. It's practically impossible for a child or adult to go a day without having ultra-processed fare offered or simply sitting out to grab.  We're still learning the full impact this has on our minds and bodies. So far the data and anecdotal evidence show it's not good. And to be clear, this has nothing to do with weight or appearance. We're talking overall health, growth, behavior, and how we feel.  Shunta Summers sees this every day. She is the owner and president of Foundations Learning Academy. She's dedicated her life's work to childhood education and nutrition because she understands how it impacts the lives and futures of young people. The Odyssey: Parenting. Caregiving. Disability.  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.    TRANSCRIPT: 01:00:07:20 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I join the club, so to speak, in 2010, when my first child was born with Down's Syndrome. I left my career as a television journalist to immerse myself in parenting and understanding all things disability.   01:00:36:09 - 01:01:03:01 Erin Croyle This eventually led to my work at the Center for Family Involvement at VCU's Partnership for People with Disabilities as a communications specialist. The impact our diets have on our brains and bodies has always interested me. Becoming a parent of three very different children and learning what families and schools are dealing with when it comes to nutrition made me realize how complicated feeding children can be.   01:01:03:03 - 01:01:21:01 Erin Croyle Shunta Summers is going to break this down with me today. She's the owner and president of Foundations Learning Academy in Richmond, Virginia. Her child care center has a focus on early childhood education and nutrition.   01:01:21:03 - 01:01:44:22 Erin Croyle Shunta, thank you so much for joining me. You have such an interesting background. Born in Queens, graduate from high school in Chesterfield, majored in food science at North Carolina State University. You own and run a successful business. You do volunteer and advocacy work. You're a mother of four. I don't know how you do it all. Maybe we should start with a what I eat in a day quiz.   01:01:44:22 - 01:01:49:00 Erin Croyle Right to figure it out. Seriously, though, how do you do it all?   01:01:49:02 - 01:02:16:08 Shunta Summers Well, thank you so much, Erin, for having me today. I like all of you. We're in this together. We're growing and learning as we live. One of the things that I do is I try to plan as much as possible, but life happens, throws us curveballs. We can't always do what we planned to do in the day. So that's one of the reasons why one of the key things is prepping.   01:02:16:10 - 01:02:37:16 Shunta Summers I'm a big advocate for prepping at the center as well as at my home, because a lot of times I have to spend more time at the center. There are times that I don't get to provide the home cooked meals that I want to at home. So my alternative is to have meals prepped for my children so that they can grab and go.   01:02:37:17 - 01:03:00:15 Shunta Summers It makes a lot easier that they're getting older, but I still want to make sure that they're given the best choices as possible, knowing that there's so many alternatives at their fingertips that they could just order food to come to their homes whenever. So I do understand the importance of having food too readily available at home as well as at the center.   01:03:00:15 - 01:03:05:05 Shunta Summers And that's one of the things we try to educate our families about as well.   01:03:05:07 - 01:03:23:03 Erin Croyle And we're going to get into what you suggested prep later on. I'm writing it down on my notes to make sure we follow up with that question. But I want to give you a little bit more background to who you are. I'm really interested in what got you interested in food science and the connection to early childhood.   01:03:23:05 - 01:03:47:15 Shunta Summers One of the things was I was actually pre-med in school and then I did well, biochemistry, organic chemistry, loved it. But then once I had to start getting into working with humans and blood, I just didn't enjoy it. But then I also was fascinated me was how much food really does affect our bodies on a daily basis. So that's one of the reasons why I went into food science.   01:03:47:17 - 01:04:25:15 Shunta Summers And I absolutely loved it because what I learned at school, a lot of times people say, what you learn school you don't really use in the real world. But those basic concepts that I learned early on still provides the framework for what I do now, even with early childhood development, because I take it our holistic approach. We don't just look at the educational needs, we look at social, emotional, plus the nutritional needs of these children, because we're actually helping families too, because a lot of our families, they don't know how to properly feed their children.   01:04:25:15 - 01:04:53:17 Shunta Summers There's a lot of processed food, so introducing the child as early as possible to healthy, nutritious meals, you can really help their tastebuds very early on so that they don't want and need and crave the highly processed, salty, sugary, sweet foods that don't have high nutritional value that's going to last and help them grow and develop either.   01:04:53:19 - 01:05:25:05 Erin Croyle I am so glad that you brought that up because something that so many parents struggle with is how hard it is to feed our kiddos. Right? And by right I don't mean right versus wrong or good food versus bad food. This conversation is not going to be about more diet culture nonsense. It's about nourishment. And in my experience as a parent, as someone who is involved in schools and someone who's at sporting events, when I say it's hard to feed our children, right, I mean that they are inundated with heavily in ultra processed foods.   01:05:25:11 - 01:05:45:10 Erin Croyle Everywhere they go. There is these things called Scooby Snacks that are like on the label. They say they're good for kids and multigrain. But if you look at the actual packaging, I mean, it's all refined ingredients. Yes. Sugar. So much of the convenient stuff for toddlers and children and adults, for that matter. It's engineered for all of us to want more, right?   01:05:45:11 - 01:05:55:15 Erin Croyle Yes. And then you couple that with food aversions and all these other things, it's really hard to establish and maintain a palate for foods. So tell me more about your experience with this.   01:05:55:17 - 01:06:25:23 Shunta Summers So it is very challenging just from even the childcare perspective is because you want to do especially post-COVID, you want to have as many individually wrapped items as possible, but then that also means highly processed foods that are the lower nutritional value. So just last week I was at a food show. They know that we're vegetarian, So one of the things that they had was Kellogg's.   01:06:26:00 - 01:07:01:00 Shunta Summers They came in, we went to to them and I saw the stuff. But then I also know there's another smaller company that has a whole grain that uses oats versus the refined and the enriched flour. Those type of things where you have to be aware of. Yes, the packaging is not as pretty, but at the end of the day, when I can serve crisp rice over wheat cracker, that goes a lot longer, especially when I have so many children with allergies.   01:07:01:02 - 01:07:25:09 Shunta Summers So that's one of the things is just looking at it like with meal prepping, just like as far as our yogurt, we would just get the tubs of the nonfat yogurt and we would make our own parfaits. But that's a part of prepping. And then at home, that's what I would do too. So we would have the oats or a granola and then we'd have the yogurt and then we'd have the fresh fruit.   01:07:25:11 - 01:07:52:18 Shunta Summers So that's one of the things that we do with the children. We give them the exercise of putting their parfaits together. But on the go, you would have that ready to go. It is very challenging because it takes more time to cut up fruits and vegetables. It takes more time to look at all of the ingredients that goes into a product versus just looking at the big names that's on the front of the product.   01:07:52:21 - 01:07:55:11 Shunta Summers It is very, very challenging.   01:07:55:13 - 01:08:16:09 Erin Croyle Let's talk more about those challenges. Like you mentioned with yogurt. I know I ran into this when my kids were younger, where I would try to give them all that plain yogurt and then just put some fruit in it and maybe a little honey. And then they went out and were introduced to all the other stuff, and they don't like that anymore.   01:08:16:11 - 01:08:28:01 Erin Croyle So what are some ways that we can prep and help keep our our children's palates kind of geared towards less processed stuff?   01:08:28:03 - 01:08:54:01 Shunta Summers It's either be honest with you, it's so much easier birth to five and then once they get into school, you can't help. They're introduced with so many different things, like you said, with the yogurt, because the schools are going to do the prepackaged yogurts. And even when you pack your child's lunch, after a while, they're going to

People with intellectual disabilities are sexually assaulted at a rate SEVEN TIMES HIGHER than people without disabilities. And that figure is likely a substantial underestimate, as it doesn't take into account repeated abuse or people living in institutions and group homes.  There are steps we can take to prevent abuse and empower our loved ones to protect themselves and understand the difference between healthy and unhealthy relationships.  We spoke with Molly Dellinger-Wray who leads LEAP - Leadership for Empowerment and Abuse Prevention - at VCU's Partnership for People with Disabilities and LEAP trainer Rose Sutton.   The Odyssey: Parenting. Caregiving. Disability.  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:  As Rose mentioned, caregivers need to take care of themselves, too!!  To register for the upcoming LEAP webinar on March 18th, click here! For more about Healthy Relationships and Abuse Prevention, check out LEAP's website. LEAP is currently funded by the Individual and Family Support Program at Virginia's Department of Behavioral Health and Human Services.  Partners in Policymaking is a leadership development and advocacy education program for people with disabilities and family members. This free program is offered across the country and online in some areas. PIP started in Minnesota in the late 1980s.  The NPR report on abuse can be found here. The latest statistics on abuse are here.  The Adult Down Syndrome Center/Advocate Health Care webpage has many adaptive visual aids to help people with IDD with various things. Including:  Bathing and Showering Sexual Health and Relationships Self Care and Hygiene Social Skills   01:00:07:20 - 01:00:34:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. My new path started in 2010, when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities a few years after he was born.   01:00:34:12 - 01:00:47:05 Erin Croyle Using my journalism and television producer background as a communication specialist, I have the privilege of bringing much needed attention to issues facing our community.   01:00:47:07 - 01:01:20:02 Erin Croyle Unfortunately, rampant abuse is one of them. NPR's 2018 report The Sexual Assault Epidemic No one talks About brought this to light. Correspondent Joseph Shapiro's yearlong investigation found that people with intellectual disabilities are sexually assaulted at a rate seven times higher than people without disabilities. And that's likely an underestimate, as the report notes, because government surveys used to compile this data don't include people living in institutions or group homes.   01:01:20:04 - 01:01:51:19 Erin Croyle These statistics are integrating heartbreaking and terrifying, but there are steps we can take to prevent abuse. That's why I asked Molly Dellinger-Wray and Rose Sutton to join me. Molly leads a program at VCU called LEAP, which stands for Leadership for Empowerment and Abuse Prevention. LEAP provides training on healthy relationships and information for preventing abuse to adults and teens with intellectual and developmental disabilities.   01:01:51:21 - 01:02:18:10 Erin Croyle LEAP was founded in 2014 and is currently funded through the Individual and Family Support PrOgram at Virginia's Department of Behavioral Health and Developmental Services. Rose Sutton is a disability advocate, autism specialist, mother and a sleep trainer. Molly and Rose. Thank you for joining me. Molly, let's start with you telling us more about LEAP and your involvement with it.   01:02:18:11 - 01:02:48:20 Molly Dellinger-Wray The Partnership for People with Disabilities has been addressing the problem of abuse and neglect of children with disabilities since, I think, 2015. They used to have a grant, a multi-disciplinary grant about teaching multidisciplinary teams about child abuse. And I got involved with that project and felt like we were providing training for law enforcement for school social workers, for court personnel, and for lots of adults.   01:02:48:20 - 01:03:06:10 Molly Dellinger-Wray But we weren't. No one was actually providing training to the people who really needed it, and that's people with disabilities. And so LEAP is taught by a person with a disability and a coach trainer to teach people with disabilities about healthy relationships in Molly.   01:03:06:12 - 01:03:14:05 Erin Croyle What is your role? So what brought you to the partnership and what got you interested in this sort of work?   01:03:14:07 - 01:03:51:10 Molly Dellinger-Wray My role started in positive behavior support and one of the things that we know on positive behavior support is we're always looking. We're like trying to solve a puzzle of why people may be struggling and exhibiting behaviors that make people around them frustrated and angry. And one of the big reasons for that is past trauma. And when you look at the statistics and the data surrounding the numbers of people who have experienced trauma and abuse, that can often lead to some challenging behaviors.   01:03:51:10 - 01:04:14:14 Molly Dellinger-Wray And so that sort of pulled me down the rabbit hole of thinking, you know, we really want to help people with the quality of life. We need to think about their past trauma. And because my background is in special education, I always think, you know, I would much rather prevent abuse than have to help someone work through it on the other side.   01:04:14:16 - 01:04:38:05 Erin Croyle Rose You and I actually know each other from Partners in Policy making the Virginia Class of 2013, which is a long time ago now for folks not familiar Partners in Policy Making is a leadership development and advocacy education program for people with disabilities and family members. The three programs offered in most states and I can put more information about that and leap in the show notes.   01:04:38:07 - 01:04:44:03 Erin Croyle ROSE Can you tell us a little more about yourself and what led you to become a lead trainer?   01:04:44:05 - 01:05:02:19 Rose Sutton So thank you for having me. For myself, what brought me to leap was after we had good partners in policymaking, I had learned how to advocate since where military family. I wanted to know what the rules and regulations were for the state of Virginia. So I went through that class and that opened doors for me. On being able to speak freely about different things.   01:05:02:21 - 01:05:25:15 Rose Sutton So when I found the AR that they were looking for late trainers, I was really interested in that because of my four children, two of them have autism. And at one point they were moderate to severe. And so I wanted to know for myself as a mother how I can help teach them how to be safe with relationships of all different types.   01:05:25:17 - 01:05:45:04 Rose Sutton And when we think about relationships, a lot of times you hear them think about only like boyfriend or girlfriend, those type of things. But we don't talk about paid staff members or are those type of things. And people with disabilities sometimes do not know that they have the right to say no to something or may not even know how.   01:05:45:06 - 01:06:02:05 Rose Sutton So I think that leap was able to give them practice on what it looks like, as well as being able to practice it while we're doing trainings, And I think that that's been very powerful, not only in my own home with my own children when we first started doing it, but I was able to practice on them to see how it was working.   01:06:02:07 - 01:06:22:22 Rose Sutton But I think that it's just very empowering to be able to catch them before end, to end, to help them really some of that energy and to be able to have a safe space, to be able to practice what it means that to have a relationship is not just if you have a boyfriend or girlfriend. It's all relationships, whether you're friends, whether you're strangers, anybody within your in your space or in your world.   01:06:22:24 - 01:06:43:15 Molly Dellinger-Wray And I just want to ask Rose, when we first got started with the leap and we had like a three day training program to train the trainers where we taught people about the problem of abuse happening and about relationship maps and setting boundaries. What was that like for you as a mom?   01:06:43:17 - 01:07:07:24 Rose Sutton For myself, coming from a family of abuse, also, but from the mother's perspective, having children with disabilities, my children can sometimes be very affectionate and very trusting. We see a lot of different specialists, a lot of different types of people daily, and they needed to know what it look like for when someone's trying to help you or when someone's trying to hurt you.   01:07:08:01 - 01:07:37:10 Rose Sutton And so it was important for me, especially when we started, because VCU and and, and Virginia board with people with disabilities, you guys had a program already set up. So we were learning it, but we also were able to give feedback on what that was like and if there was any types of things that maybe we needed to add or not or take out, which is really beneficial for me as a mom, as we were learning it back then, I was able to practice that on my children and see how it affected them and what they were learning.   01:07:37:10 - 01:07:58:05 Rose Sutton And with them being on different ends of the spectrum, it was really empowering. And so for me it's more of a passion of teaching this course, and that's why I'm still here, to give other people a c

Self-care is something we all need to do. But for many of us, it's an elusive practice. Caregivers are working harder than ever. Which makes self-care more important than ever. Knowing how real this struggle is, I reached out to my friend and chiropractor Dr. Sarah Gardner. She gets it, and has so many practical, doable ideas for how we can make self-care happen!   The Odyssey: Parenting. Caregiving. Disability.  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:   Dr. Sarah Gardner is co-founder and co-owner of FLX Athlete Retreat.    All of the suggestions for movement, hydration, nutrition, apps, and much more are here.      TRANSCRIPT: 01:00:07:23 - 01:00:35:00 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. My beautiful tangent came in 2010 when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities. A few years after he was born.   01:00:35:02 - 01:00:58:14 Erin Croyle Utilizing my journalism and television producer background as a communications specialist, it's amazing to be in a position where I can share stories unique to families like ours. One thing we talk about in our circles, but certainly don't do enough of is self-care. In fact, many caregivers I know scoff at the idea, myself included. It's not that we don't see its value.   01:00:58:18 - 01:01:21:22 Erin Croyle We just can't seem to make it happen. The lives of folks like us who are caring for a loved one for life are just different. The physical, mental and emotional demands are constant. Even if you manage to get some time away, there's no time off when someone you love needs constant support. This is why basic self-care is so critical for us.   01:01:21:24 - 01:01:46:11 Erin Croyle So how do we make it happen? To talk about this, I've invited my friend and my chiropractor, Dr. Sarah Gardner, on. She and I have been shooting the breeze for nearly two years. I found this amazing woman while recovering from hip surgery. Dr. Sarah gets it. She provides care with compassion and understanding in our many hours together, we've laughed at how ridiculous fad diets are.   01:01:46:13 - 01:02:00:22 Erin Croyle We commiserate on how impossible it is to juggle it all as parents. We praise the Almighty Oatmilk latte and we swear way too much.   01:02:00:24 - 01:02:25:02 Erin Croyle Sarah, thank you for spending some of your precious free time with me. For our listeners, I just want to paint a picture here. You're a mother of two, a business owner and ultra marathoner who's married to a CrossFit instructor. You're all about body positivity and health at any size. You stressed the importance of rest and having fun. The times when I've come in and admitted to you that I haven't done any of the things I should have.   01:02:25:03 - 01:02:49:07 Erin Croyle You validated how hard it is and encouraged me to just try to do one or two things. I always leave our appointments feeling heard, understood, and more hopeful. The business, by the way, is Flex Athlete Retreat, located in the Finger Lakes, Ithaca, New York, to be precise. It's this little haven where you have chiropractic services. Your colleagues do massage therapy and acupuncture.   01:02:49:09 - 01:02:56:01 Erin Croyle The space is this oasis with an amazing green velvet couch. Did I sum it up correctly?   01:02:56:03 - 01:03:16:16 Dr. Sarah Gardner Yeah, I think you summed it up. Thank you for the introduction. I think the first time I met Arlo was on the green couch, so some good memories there. And yeah, absolutely. The almighty book Milk Latte is what powers me through my day most of the time. Yeah, I'm pretty in it in terms of trying to figure out that work life balance.   01:03:16:17 - 01:03:26:11 Dr. Sarah Gardner My kids are two and seven and this business basically eats up my entire life. So I think I think you got it all correct there.   01:03:26:13 - 01:03:38:05 Erin Croyle I always love hearing people's origin stories. So what drew you to this kind of work? And then also, I'm really curious how your perspective has changed over the years, seeing so many different people.   01:03:38:07 - 01:03:59:06 Dr. Sarah Gardner Yeah, so I was a collegiate track and field athlete. I read Cross Country as well, and then I had an injury my freshman year and I was just really kind of underwhelmed with the way my Western med practitioners handled it. They weren't making contact with the problem area, vaguely listening, but kind of just throwing and NZ at it.   01:03:59:06 - 01:04:36:15 Dr. Sarah Gardner And I just felt like we could have managed that a lot better as a team. So I became kind of disenchanted with Western medicine. My undergraduate studies were an exercise physiology, which is just pretty broad spectrum. Learning a lot about human movement and biomechanics and just general health and biology. And we actually had a chiropractor come and speak to one of my survey classes and described what he did, and it was one of those moments for me where it was like, I can take everything I learned and have loved about biomechanics from being an athlete and really combine it with health care and caring for people and sort of contribute to the world   01:04:36:15 - 01:05:05:23 Dr. Sarah Gardner of sport for years after when I'm able to be a competitive athlete myself, I think my my goal when I started out was to just kind of create a space where people felt safe and listened to just because that hadn't been my experience, the whole other podcast. But yeah, and I think breaking down that doctor patient boundary and fostering trust and open communication with my patients with the goal of creating better outcomes and I do think that that's worked over the years.   01:05:06:03 - 01:05:36:08 Dr. Sarah Gardner And then as far as my perspectives changing, it really has I started off marketing specifically to athletes just because that's the world I came from. But I get to talk to, let's say 6 to 14 people a day, one on one for 30 to 60 minutes. And so my understanding of how we define athlete has definitely evolved over the past ten years, just because I've learned and appreciate so much differently the physical, emotional and mental demands of everybody's day to day.   01:05:36:09 - 01:05:55:23 Dr. Sarah Gardner So when my business is called athlete retreat, but really we  treat everybody. I mean, we have people in the perimenopausal stage, we have people giving birth, we have teenagers, we have older adults, we have people recovering from surgery like yourself. So, yeah, it's we get to see a pretty diverse patient population. So yeah.   01:05:55:24 - 01:06:18:02 Erin Croyle Yeah, you must see caregivers that some of us have a lot of strain on our body just because we care for another person so intensely. It's really a lot of effort. In some ways, I know that some of my friends, some of the lifting that they do and some of the work that they do is is on par with heavy lifting and athletics.   01:06:18:02 - 01:06:19:03 Erin Croyle Yeah.   01:06:19:05 - 01:06:41:08 Dr. Sarah Gardner my God. I think that I mean, really what it boils down to it, everybody I see is a caregiver in some way. I have a ton of parents with children with or without disability. I have people caring for their parents, which I think is very challenging and a new chapter in a lot of their lives. So a lot of emotional stress which can manifest physically.   01:06:41:10 - 01:07:03:19 Dr. Sarah Gardner Everybody has these different things that they're caring for that are occupying a lot of space in their mind and body. Obviously, the most obvious definition of caregiver comes with caring for children, caring for an elderly relative, or caring for a child with disability. And those are where I see the most physical challenges versus the emotional strain that can also be very pervasive.   01:07:03:21 - 01:07:22:19 Erin Croyle One of the other things that I just love about you and why I just have to talk about this is that you keep it so real. You know, when I share with you in our sessions how hard it is to fit in strength training and you share your own struggles, like how you're doing this ten minute a day movement challenge.   01:07:22:21 - 01:07:44:22 Erin Croyle And then even though you're this accomplished athlete, it was hard at times. yeah. So when you're thinking about caregivers who are just up to their ears in it all the time, what can they do to build and maintain strength? Think about the beginners out there who might just be getting started. You have people who they get started and then things hit the fan.   01:07:44:22 - 01:07:46:18 Erin Croyle Kind of like me.   01:07:46:20 - 01:08:05:13 Dr. Sarah Gardner Sir. Well, I think the first thing we can do is take it just to define strength training. I think the form of exercise that everyone is the most familiar with is cardio. And that's where you're you're running, you're on the bike, you're getting your heart rate up, you're sweating, and you're really working your cardiovascular system and your circulatory system.   01:08:05:19 - 01:08:26:19 Dr. Sarah Gardner And that's incredibly important as well. And I don't think people struggle as much to identify ways that they can get cardio and. Right. You know, we all know we can take a walk. We all know we can we can bike whatever strength training is a little harder to pin down in strength. Training is any form of exercise where you use resistance to strengthen your muscles.   01:08:26:21 - 01:08:49:06 Dr. Sarah Gardner So I think that the go t

This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it.  This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives.  The Odyssey: Parenting. Caregiving. Disability.  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:  Nickie Brandenburger is the Director of the CFI's Family to Family Network.  More about I'm Determined. Interview with I'm Determined founding member Dr. John McNaught.  More about the sibling perspective.  Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Rural Outreach Specialist.  Lisa is also a part of the Genetic Navigator Program.  More about Carilion which Lisa mentioned.   River's Way is the community organization that Lisa's children find benificial. Lisa was a guest on the podcast back in May, sharing her experiences as a parent, advocate, and person.   Jen Reese is the Regional Network Coordinator for Northern Virginia and part of the Genetic Navigator Program.  The STXBP1 Disorders website features the lattest on the condition as well as the FDA recording that Jen participated in. A podcast on the diagnostic odyssey one mother faced for her child's rare genetic condition.   Parenting Special Needs feature on transitioning to the empty nest.  Mauretta, Edgar, Lisa, and Patrice are all part of the CFI's Cultural Broker Initiative Elderhood and Aging Families.      TRANSCRIPT:   01:00:07:21 - 01:00:37:14 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities.   01:00:37:20 - 01:01:05:11 Erin Croyle He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families.   01:01:05:13 - 01:01:36:22 Erin Croyle People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things.   01:01:36:24 - 01:02:03:05 Erin Croyle The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023.   01:02:03:07 - 01:02:29:08 Erin Croyle We're celebrating the Center for Family involvement by sharing what exactly it is we do all day, why we do what we do, and why this work is so important. We start with the director of the CFI Family two Family Network, Nickie Brandenburger. Nickie, I'm so glad you're here. You came to CFI in 2015 after working as a service coordinator for nearly two decades.   01:02:29:10 - 01:02:38:19 Erin Croyle Can you tell us how you ended up with the Center for Family Involvement and how your professional and lived experiences have informed your work?   01:02:38:21 - 01:03:02:11 Nickie Brandenburger So I am a special education teacher by trade. I went to college with the intent to be a special ed teacher end of my college career. I was having a difficult time thinking about being within the four walls of a classroom. I was really fascinated and couldn't stop thinking about what was happening when that child got off the school bus.   01:03:02:11 - 01:03:33:22 Nickie Brandenburger At the end of the day and went home. What was their family life situation like? Who were those other people that were involved in their life? What happened after graduation? During the summer, when school sessions not end, I could not stop thinking about life outside of the school system for families that are raising children with disabilities. So I sort of shifted gears and got a job right out of school at 22, working with a community services board in Lynchburg, Virginia, providing what's called support coordination.   01:03:33:23 - 01:04:04:14 Nickie Brandenburger Back then, the phrase was case management, basically providing support to families of children and adults with developmental disabilities. So I did that for about 21 years. Was exposed to so many different types of families, different dynamics. And it was I love the work. About 11 years into the work, I became a mother and I had my son Thomas, in 2005 and perfectly normal pregnancy and delivery.   01:04:04:14 - 01:04:31:02 Nickie Brandenburger But around three months we started to notice, you know, something was a little off and he was having difficulty feeding and eating. He started to he stopped gaining weight. And I can remember taking him to the pediatrician because he was refusing to nurse and wasn't sleeping well. And something was off. And I remember looking over the physician shoulder to the notes that he was writing, and I saw the term failure to thrive.   01:04:31:02 - 01:04:51:17 Nickie Brandenburger And I thought, my gosh, what does this mean? So that kind of began us trying to find diagnosis and what exactly was happening with him and with Thomas. It was hard. You can't really label it with one thing. There were a lot of little things that kind of combined made things more difficult for him. Around 18 months, he really didn't have language.   01:04:51:19 - 01:05:16:15 Nickie Brandenburger He would go from 0 to 10 really quickly, biting, difficulty sleeping. So we were assessed by our local community Services Board in Henrico County, and he qualified for early intervention. They determined that he had some sensory processing issues and just a global greater than 25% delay. And that's sort of kind of how you begin to access early intervention services.   01:05:16:15 - 01:05:38:11 Nickie Brandenburger And at the time, you know, I was very overwhelmed and I can definitely remember being confused about what my next steps were. But I was pretty tough on myself in that I was suddenly accessing services from a service delivery system that I'd been a part of for 11 years. And suddenly I was wearing this parent hat and it was very uncomfortable for me.   01:05:38:12 - 01:06:00:20 Nickie Brandenburger You know, there were professionals that were trying to support us in our early intervention journey with our son that knew me, you know, as a professional. And suddenly I was a parent, too. And I didn't know how to handle that and process it at the time. So, you know, now that my son is 18, I can look back and acknowledge and say that there was definitely a little bit of shame and maybe some embarrassment.   01:06:00:20 - 01:06:23:11 Nickie Brandenburger And I didn't know how to articulate that. So that probably resulted in making it harder for myself than it really had to be, because I was trying to process exactly what was happening. And I think there's something to be said about parents if you're blissfully clueless about disabilities. But I knew enough to make it a little scary, so that was pretty tough for us.   01:06:23:11 - 01:06:48:16 Nickie Brandenburger So I had great support from friends and family. My husband and I benefit from having family members that are in the field. My husband is a public school educator. His sister is a special education teacher. My mother in law's occupational therapist, father in law is a physical therapist. My brother's wife is a special ed teacher and has a brother with Down's syndrome, you know.   01:06:48:18 - 01:07:05:10 Nickie Brandenburger So we had all of these family members and professionals kind of around us that knew. So there was a lot of support, but I was definitely hard on myself. So fast forward to, you know, 2015 and I was actually when I found out about the job at the Center for Family Involvement, I wasn't looking for a job change.   01:07:05:11 - 01:07:25:06 Nickie Brandenburger I was happy where I was, but I was trying to find resources for a family that I was supporting and I was trying to find some resources for them, Other parents that had children with disabilities that were also Latino. And so I kind of came across the website. I knew about the Partnership for People with Disabilities. I didn't know specifically about the Center for Family involvement.   01:07:25:08 - 01:07:58:12 Nickie Brandenburger So I kind of fell upon the website and saw I notice about a job position and I read the job description and the director for family, the Family Services, and I thought, my gosh, I could do this. This is a perfect way to sort of marry my two very specific experiences. Being a

It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost? In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)   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: Heather Trammell is the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch. More about IDEA - the Individuals with Disabilities Education Act. More about the ADA - the Americans with Disabilities Act.     TRANSCRIPT 01:00:07:18 - 01:00:36:21 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:11 - 01:01:01:24 Erin Croyle This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.   01:01:02:14 - 01:01:30:20 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.   01:01:31:05 - 01:02:01:21 Erin Croyle These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.   01:02:02:08 - 01:02:15:19 Erin Croyle Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?   01:02:16:00 - 01:02:43:20 Heather Trammell Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.   01:02:44:04 - 01:03:20:19 Heather Trammell I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings.   01:03:21:03 - 01:03:47:19 Heather Trammell They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it.   01:03:48:05 - 01:04:16:14 Heather Trammell Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books?   01:04:16:19 - 01:04:41:18 Heather Trammell I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious.   01:04:42:00 - 01:05:07:07 Heather Trammell We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose.   01:05:09:09 - 01:05:36:00 Erin Croyle Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more?   01:05:36:12 - 01:06:01:21 Heather Trammell I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity.   01:06:02:07 - 01:06:26:00 Heather Trammell That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person?   01:06:26:17 - 01:06:50:10 Heather Trammell Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us.   01:06:50:16 - 01:07:18:07 Heather Trammell They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more worthy of a human being. We're asking ourselves, who is making my life easier? How does it affect me? It can be kind of self-centered.   01:07:18:19 - 01:07:46:11 Heather Trammell It also doesn't actually tell us everything we really need to know. Really. So if I drop my child off at camp and they're asking me, is she high functioning or low functioning? Answering that question will not give them the information that they need. What they really need to know is she does need help in the bathroom. But if you guys go on a two mile hike, she'll be fine.   01:07:47:10 - 01:08:06:10 Heather Trammell She does not speak very well or very clearly, but believe me, she has everything you say. She'll she'll let you know when things are not going right. So it doesn't really tell us what we need to know. It also doesn't. I mean, you tell me if you agree or not, does it? It kind of put people in a box.   01:08:06:11 - 01:08:34:13 Heather Trammell Oh, yeah. Like they never change. Yeah. Like this is this. You are high functioning. Therefore you will always be high functioning. You will be high functioning. Every situation. You'll be as high functioning at ten as you are at 21. It's not giving people room for growth. Right. I know that my daughter with Down syndrome is much more communicative in certain situations than she is in other situations.   01:08:35:04 - 01:08:59:07 Heather Trammell Does that mean she's high functioning or low function? What area are we talking about? High functioning, low voice. And you can just tell me what area we're talking about. My daughter with Down Syndrome can read, but she does not do math. High functioning or low functioning is kind of a broad term that doesn't really tell us what we need to know.   01:09:00:10 - 01:09:33:18 Heather Trammell And it divides parents in every possible crushing way. I just could not go into how disappointing it is to me to hear parents talk to each other about high functioning and low functioning, or to have to insinuate that Parent A has better because their child is quote unquote high functioning and then Parent B has a much harder time because their child is low functioning.   01:09:34:19 - 01:09:58:02 Heather Trammell We're not saying that quote unquote, high functioning kids don't have needs. If we go ahead and categorize somebody as high functioning, we could go down the path of thinking they need no help at all. Well, sometimes they actually do. Or I think, conversely, that if we categorize someone as low functioning, they have nothing to say, but they don't have nothing to

When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us "parent-caregiver hybrids" have a lot to learn about supporting a child with a lifelong disability.    Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; "waiving" the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.     Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website.    While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the "DD Waiver" and the Commonwealth Coordinated Care Plus Waiver or the "CCC Plus Waiver."    Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you're not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there.    Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It's critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That's because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families.    The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That's why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more.    SHOW NOTES:   IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248 My Life, My Community   IFSP Resources   For more IFSP Council Information email and to apply: ifspcommunity@dbhds.virginia.gov   Facebook Pages for IFSP Councils: https://mylifemycommunityvirginia.org/taxonomy/mlmc-menu-zone/connect-ifsps-regional-councils             TRANSCRIPT: 01:00:07:17 - 01:00:34:18 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability.   01:00:34:20 - 01:01:04:16 Erin Croyle Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC.   01:01:04:18 - 01:01:29:14 Erin Croyle The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently.   01:01:54:09 - 01:02:19:13 Erin Croyle It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families.   01:02:19:15 - 01:02:39:14 Erin Croyle It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines.   01:02:39:16 - 01:02:50:08 Erin Croyle Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP?   01:02:50:10 - 01:03:24:16 Heather Hines Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils.   01:03:24:18 - 01:03:56:02 Heather Hines But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs.   01:03:56:04 - 01:04:24:20 Heather Hines So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through.   01:04:25:01 - 01:04:45:13 Heather Hines Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program.   01:04:45:15 - 01:05:11:15 Heather Hines So, as you know, Erin, we have a partnership with your team, the Center for Family Involvement, and we fund some of the work that you all do to support families. And we truly believe that family mentoring is extremely valuable and that families deserve to be able to talk to someone who has been where they are and can provide that emotional support while also helping them figure out what to do, where to go next.   01:05:11:17 - 01:05:50:17 Heather Hines And that is wherever they are on their journey. Our partnership with VCU is very important. It also includes LEAP training, which stands for Leadership for Empowerment and Abuse Prevention training. We're excited to partner with you on that. Another partnership we have is with The Arc of Virginia, and that is to provide peer mentoring opportunities. Peer mentors are people with developmental disabilities who are hired, trained and paid to provide guidance and support and resources to other people with developmental disabilities to help those people achieve the life that they want.   01:05:50:19 - 01:06:11:17 Heather Hines Peer mentors are dedicated to helping others reach new levels of independence and inclusion in their communities. Then we have our community coordination program that supports community action and engages individuals and families through our regional and state councils. And you will hear when Rhonda gets to talk a little bit more, she'll tell you a little bit more about those.   01:06:11:18 - 01:06:40:05 Heather Hines We also have a partnership with Senior Navigator, which provides education information and general referrals through the My Life My Community website. I'm sure you're going to have links to that website in your show notes. Some families may have used this website for reference to my life, my community website, the IFSP resource for Family page, A specifically for families, individuals who are looking for resources, waiver, non waiver, anything goes here.   01:06:40:05 - 01:07:04:07 Heather Hines But we just want to make sure people have information that is important to them in one place and folks need help navigating the system or finding services support. There's actually a call center that we have with my life, my community. There's a toll free number that maybe we can add in your notes as well. Anyone can call and speak to a live person between nine and four on Monday through Friday.   01:07:04:09 - 01:07:31:05 Heather Hines So that's a great partnership as well. We encourage families to check out that website and we hope it's helpful for folks. And then we have a communication component. We have a monthly digest that we

The wishes, hopes, and dreams of expectant parents are many.  Their baby having a lifelong disability usually is not one of them.  When that happens, it can be devastating for families.  The staff and volunteers at the  Center for Family Involvement have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be. So does Heather Trammell. She's the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness.  In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be.    The Odyssey: Parenting. Caregiving. Disability.  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.    TRANSCRIPT: 01:00:07:18 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host.  The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:36:09 - 01:00:59:17 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking.   01:00:59:19 - 01:01:26:21 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud.   01:01:26:23 - 01:01:47:15 Erin Croyle Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after.   01:01:47:19 - 01:02:04:06 Erin Croyle And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you?   01:02:04:08 - 01:02:32:15 Heather Trammell Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment.   01:02:32:17 - 01:02:55:09 Heather Trammell So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction.   01:02:55:09 - 01:03:25:00 Heather Trammell Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties.   01:03:25:06 - 01:04:00:10 Heather Trammell And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome.   01:04:00:12 - 01:04:26:20 Heather Trammell Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me?   01:04:26:22 - 01:04:54:00 Heather Trammell And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it.   01:04:54:02 - 01:05:20:07 Heather Trammell Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio.   01:05:20:09 - 01:05:53:07 Heather Trammell And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked.   01:05:53:09 - 01:06:18:10 Heather Trammell And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday?   01:06:18:12 - 01:06:44:21 Heather Trammell He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore.   01:06:44:23 - 01:07:11:17 Heather Trammell You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon station, which at that time was completely closed.   01:07:11:17 - 01:07:37:10 Heather Trammell Then you could still smell the smoke from the Pentagon attack as you passed by. So my mood did not get better all the way at the office. So my my husband and I met at the train station. We went to his office. He sat across his big oak desk with a very serious expression on his face. He didn't say anything like nothing at all.   01:07:37:12 - 01:08:02:03 Heather Trammell We weren't sure what to say either, so we. We just picked things out of the air where we weren't even sure what to ask. We said so is the baby okay? He said, Well, we're going to get a level two ultrasound. Here's your prescription, and that'll tell us more. Great. Am I okay? He said, Oh, you know, your health is good.   01:08:02:03 - 01:08:32:05 Heather Trammell This will not affect your health. Good. And then we're still fishing for things to say. We said, Well, so is it a girl or a boy? And he shuffled some papers and he said, it's female. And in my mind now, my husband is much more generous and thoughtful than I am. But in my mind he had just reduced my unborn child to a tadpole experiment.   01:08:32:07 - 01:09:01:20 Heather Trammell And I thought that was just it was really unreasonable of him medically. Yes, he's right. Female ex-wife. Got your exit? Sorry. Got it. But we were having a girl or a boy. I'm not giving birth to a thing. Giving birth to a real person so we could leave of his office. He didn't give us any other information. No books to read, websites to consult people to talk to.   01:09:01:22 - 01:09:29:23 Heather Trammell That was either because he forgot he didn't know or I'm not sure why he didn't, but or he maybe he expected the maternal fetal medicine people to do that. Whatever his reason was. We spent the rest of the day deciding on a name for our little girl because she was no longer going to be known