Episodes

  • 2024 Airing of Grievances: Sharing our Secret Lives

    2024 Airing of Grievances: Sharing our Secret Lives
    Dec 23 2024
    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...
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    18 mins
  • Caregiving and Parenting Are NOT the Same

    Caregiving and Parenting Are NOT the Same
    Nov 18 2024
    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 ...
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    23 mins
  • Are Inclusive Schools Even Possible? Part 2

    Are Inclusive Schools Even Possible? Part 2
    Oct 1 2024
    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 ...
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    1 hr and 12 mins
  • Are Inclusive Schools Even Possible? Part 1

    Are Inclusive Schools Even Possible? Part 1
    Aug 27 2024
    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...
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    1 hr and 7 mins
  • The Only Detox Worth Doing

    The Only Detox Worth Doing
    Aug 1 2024
    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...
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    36 mins
  • Dual Perspectives: Navigating Special Education as a Teacher and a Parent

    Dual Perspectives: Navigating Special Education as a Teacher and a Parent
    Jun 30 2024
    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 ...
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    1 hr and 8 mins
  • Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective

    Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective
    May 31 2024
    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 ...
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    38 mins
  • You Are Not Alone

    You Are Not Alone
    Apr 30 2024
    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 ...
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    33 mins