The Odyssey: Parenting. Caregiving. Disability.

Erin Croyle
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The Odyssey podcast explores the unique journey we're sent on when a loved one has a disability. We dig deep into the joys and hardships. We celebrate how amazing the odyssey of parenting, caregiving, and disability are. But we don't shy away from the tough stuff either. Each episode will explore topics that hit a little different because of our life experience. Our guests' perspective will sometimes bring comfort and other times challenge the way we see the world. https://centerforfamilyinvolvementblog.org/

  1. JAN 12

    New Year, Same $h!t, Fresh Perspective

    When the clock strikes midnight as we ring in a new year, our problems don't magically resolve. Everything from the previous year carries over and more piles on as we get back up and running. But there's nothing wrong with setting our cynism aside to embrace a new year as a sort of clean slate. January is the perfect time to look at life from a different lens and maybe adopt a fresh perspective.  And perhaps that perspective is inside us, and 2026 is the year we start listening to ourselves and trusting our insticts.    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;13;29 - 01;00;15;20 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's Syndrome in 2010.   This podcast explores the triumphs and hardships we face.   We celebrate the joys of the odyssey of parenting, caregiving, and disability bring.   But we don't shy away from the tough stuff.   Since I'm all about keeping it real, I'm going to jump right in and say 2025 was probably the hardest year of my life to date.   And it's not like the clock strikes midnight on New Year's and poof, that all goes away.   Y'all, BLEEP is still hard as BLEEP. And that's not going to change any time soon.   But the one thing that I love about the New year is it can offer a fresh perspective if you allow it too.   And that's where I'll begin.   So about that fresh perspective.   I am a perfectionist. And it makes it really hard to be the creator, host, producer, editor, all the things of a podcast it's a lot of work. And, in addition to my work at the Center for Family Involvement; in 2025, I was lucky enough to join on, at ACT for Youth at Cornell University, working there as part of the communications unit.   And I absolutely love it. And it allows me to also work with families and professionals who are dealing with special health care needs and disabilities. It is a deep, deep passion of mine. I am a journalist by trade and so production volume, production value is really important to me. And so it's very hard to do a podcast and not edit the living daylights out of it for any little errors or mistakes that I make, especially right now when I'm just kind of spit-balling.   But like I mentioned in the intro, I've had a really hard year and that came with technical difficulties and life difficulties and just difficulties, y'all. And so that fresh perspective that I'm trying to welcome into my life is just to not try to be so perfect in all aspects of it. And so maybe this podcast will be a little messier and maybe they'll be a little more.   I don't know. More pauses. See, even there I am, I have I'm having a hard time because I didn't get the grammar right. But there'll be more pauses, more ums, more whatever. When I start bringing interviews back on, when I have the bandwidth to edit them, maybe I won't edit them so much. I have a few in the can that I need to do, but   I'm used to working with a team, and I'm a one man band here, and when you're juggling all of these things in life, you just can't do it all. And you certainly can't do it all perfectly. And I recognize and talk openly about disability and neurodiversity, and my own neurodiversity is got this perfectionism trap. And man, does it really, really, really, really get in the way of getting stuff done.   I don't know, I just had a notification and   in previous iterations I would have started over and I'm not going to start over. So if that got through on the audio, so be it. If my dog barks on the audio, so be it. I'm going to roll with it.   And I got to tell you, you know, speaking about that neurodiversity piece, man, I don't know.   I want to be honest, like the ADHD thing where, some tasks are hard and having three kids with neurodiversity and differing support needs, seeing the the avoidance of non-preferred tasks, as we like to call them. I have the technical difficulties on this podcast and trying to figure those out like it's it's this thing where, I don't know, you work around the clock, but your brain cannot focus on what you need to get done.   And I, I like to I think of it as like a chainsaw, like where, you know, or to push them out or whatever, where you have to pull the, not the lever, but the string thingamabob. Right. And it's been a long time since I've done it. But like, if you can't pull it hard enough, if your arms not long enough.   I mean, talk about not being tall or not being a man or whatever. Everything designed for someone other than who you are, right? It's really hard to start up. That's my brain. When I'm trying to do technical things. It just. It just it just gets so bored with, with the minutia of, of some aspects of understanding things. I just want to know how to do it so I can do it.     I don't want to go through the process of trying to figure it out. You know, it's similar with   many, many, many things like reading a book that you don't want to read. You just it's like pulling teeth to try to get it started and think about it.   But I spend a lot of time thinking about other things. And, part of me really wishes I could have went live with the podcast on Wednesday. So that whole caregiving piece, and a whole hard talking about heart and the things in life that are hard. So not only does my oldest have multiple disabilities, you know, he has down syndrome, he has ADHD as hearing loss.   I talk about these things openly. And Arlo, that's his name. He would too. So I want to be clear that, like, I try not to overshare too many things about his life, and I get I get consent from him   And I think it's important to share things because I'm able to advocate for him in a way that a lot of people can't.   And what's interesting about Arlo and my life and my work is that it's all interwoven. So I was a journalist living overseas when he was born, and I didn't know he was going to have Down's syndrome, and I've literally had to advocate for him since before he was born. He stopped moving when I was 39 weeks pregnant, and had we not gone to the hospital because of that,   even though I say this, because or at the time I remember saying, oh, you know, just drink cold water. I remember drinking cold water. And, the night before we went into the hospital and I was at a party with my friend Tommy. Hey, Uncle TomI, if you're listening,   I miss you,   I know, we were all there and talking and and I later took a sip of really cold water, or might have even been Coca-Cola, and I, like I felt a kick, but I had felt his movement slowing and something inside me was like,   But everyone said, oh no, that slows at that time, you know, oh, it's okay. You know, babies get bigger and so their movements slow. That morning we went to the the next morning and went to the E.R. and had we not Arlo would not be here today. Right. So that advocacy started by saying, okay, it wasn't moving enough.   So I'm going to listen to my own concerns and not everybody else telling me. And sure enough, an emergency C-section totally traumatic. And out he came. And he is an ICU for two weeks and I swear this week I was we were at the doctor and his his pulse ox rate has oxygen levels dropped while he was getting this treatment, and it's like PTSD.   It took me right back to his little head in the box, you know, with oxygen and just watching the machines and looking at the beeping, wondering if I'd ever be able to bring him home. And I know for a lot of caregivers, two weeks isn't that long. But man, it feels like forever when you just want to hold your kiddo, right?   And that that advocacy has continued. So when he was like two, you know, he started, he would get pneumonia and he'd be really, really sick. And I was just sharing with my colleague this week about this, like, no one said, like, hey, he shouldn't be getting pneumonia this often. It was my advocacy when I took him to the pulmonologist and or anyone that doesn't know a pulmonologist is a doctor that, studies respiratory and lungs.   Right. Took him to the pulmonologist and I said, hey, we're doing, like, two antibiotics and steroids at a time here. I don't want to keep treating this. How do we start preventing this? And it wasn't until I said that that someone said, oh, well, we can test his IgG levels, meaning they can test his immune system to see what his body is responding to and where things are at.   I had to ask for it. I didn't even know what I was asking for. I just had to present my son in a different way and ask a question that for some reason nobody was thinking. And sure enough, we found out. I can't even remember at this point. But you know, somewhere between the ages of two and four that he has immune system deficiencies, which are quite common when you have down syndrome, because having an extra copy of the 21st chromosome messes with your immune system.   There's a direct correlation we know from mapping the human genome about that. Right. And so that advocacy led to him getting these IVIg treatments and, you know, similar advocacy led to him getting hearing aids. And, you know, similar advocacy led him to playing sports and doing this and doing that. But the medical component has always been this different sort of thing, because as I found out this week, it's.   Much more rare. To have a kiddo with special healthcare ne

    32 min

  2. 07/02/2025

    Spotting the Subtle Signs of Mental Health Struggles

    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

    59 min

  3. 05/07/2025

    Self-Care is a Joke (That We Need to Take Seriously)

    For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves. Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable!  The Odyssey: Parenting. Caregiving. Disability.  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 secon

    45 min

  4. 03/30/2025

    Raise a Glass to Sobriety

    A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink. The Odyssey: Parenting. Caregiving. Disability.  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 o

    13 min

  5. 02/27/2025

    Rare Diseases Can Impact Anyone

    When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why. But what happens when test after test just leads to more questions?  Rare diseases are more common than we realize; research surrounding them is what's lacking.  We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey.   The Odyssey: Parenting. Caregiving. Disability.  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 off

    49 min

  6. 02/01/2025

    New Year, Same You, Different Attitude

    How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that? It's gotta stop! There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.  If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude! The Odyssey: Parenting. Caregiving. Disability.  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 e

    23 min

  7. 12/23/2024

    2024 Airing of Grievances: Sharing our Secret Lives

    We're trying something different this episode: our first ever anonymous "airing of grievances." Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.  When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.  What about you? What secrets do you wish you could share?   The Odyssey: Parenting. Caregiving. Disability.  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 fri

    18 min

  8. 11/18/2024

    Caregiving and Parenting Are NOT the Same

    Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the 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 thi

    23 min
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About

The Odyssey podcast explores the unique journey we're sent on when a loved one has a disability. We dig deep into the joys and hardships. We celebrate how amazing the odyssey of parenting, caregiving, and disability are. But we don't shy away from the tough stuff either. Each episode will explore topics that hit a little different because of our life experience. Our guests' perspective will sometimes bring comfort and other times challenge the way we see the world. https://centerforfamilyinvolvementblog.org/

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