The Odyssey: Parenting. Caregiving. Disability.

Erin Croyle
  • 5.0 (2)
  • PARENTING
  • UPDATED MONTHLY
The Odyssey: Parenting. Caregiving. Disability.

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. 3 DAYS AGO

    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

  2. NOV 18

    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

  3. OCT 1

    Are Inclusive Schools Even Possible? Part 2

    Meaningful inclusion is possible, if we’re being honest though, it’s so rare that most folks don’t even know what it looks like. In part two of this episode on inclusion in public schools (be sure to check out part one!), Erin Croyle has educator and advocate Trina Allen break down what co-teaching is, how it works, and what can be done to make truly inclusive education a reality.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.      SHOW NOTES: Talia A. Lewis' Working Definiciton of Ableism. How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done. National Center for Education Statistics releases various annual reports and as well as topical studies.  More on the Ithaca City School District.  Inclusion benefits EVERYone. Learn more about the Individuals with Disabilities Education Act (IDEA).         TRANSCRIPT: 01:00:07:11 - 01:00:39:01 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I joined the caregiver club 14 years ago when my first child was born with Down syndrome. My journey weaved its way here, working for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:39:03 - 01:01:09:07 Erin Croyle This podcast highlights the joys and hardships we face. Celebrating how amazing the odyssey of parenting, caregiving and disability can be. While examining the spiderweb of complex issues, we're tangled in, The fight for meaningful inclusion in our schools is a struggle for so many of us. In our last episode, I spoke with special education teacher advocate, activist and parent Trina Allen.   01:01:09:09 - 01:01:31:21 Erin Croyle We left off talking about how gut wrenching advocating for an inclusive education can be, especially as our kids get older. And we're picking up right there with Trina telling us not only that it can be done, but how we can do it.   01:01:31:23 - 01:01:47:19 Erin Croyle I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track. The thing is, like a kid with Down syndrome is one kid with Down syndrome.   01:01:47:22 - 01:01:50:04 Trina Allen Thank you!   01:01:50:06 - 01:02:17:19 Erin Croyle Yes, Autism is one kid with autism. CP And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is. I think that our schools, once we get to a certain level, it's not parents failing, but it's their schools not offering enough options for kids with more significant needs.   01:02:17:19 - 01:02:34:24 Erin Croyle Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that. Trina Allen Fix it! Erin Croyle They reach a certain age and there's no choice anymore, right? No other option anymore.   Trina Allen So while we're on the fight for inclusion, it cannot be on the back of our individual child and listening to what he needs in the moment is the biggest fight of ableism. Listening to him is the biggest fight of Abel's that you will ever do with him. The issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things.   01:03:03:03 - 01:03:27:24 Trina Allen That math class needs to be structured on. These are the standards, and every single kid in it is at a different place and it needs to be supported in that way. And so do I think it can be done? my God. Math is like the easiest. You know, it becomes more complicated in like history and English, but it doesn't have to be if the design is universal.   01:03:28:01 - 01:03:47:17 Trina Allen Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son. That curriculum needs to be created with him and created with the kid at a different level and created with a kid at the different level and created with the kid in a different level.   01:03:47:19 - 01:04:27:00 Trina Allen And it needs to be individualized. And that is doable with time and space. And what I do like about the current district that, you know, that we both are dealing with is that's the goal. And when the systems have not created all of those levels of curriculum and are displayed by the slide show and are displayed in all those quiet ways that are as equal and that are that his production is as integrated and valued as what they expectation is that his production is the expectation.   01:04:27:00 - 01:04:54:03 Trina Allen Right. And that there are multiple other children in the class with interesting and independent and specialized production. That model is doable. You know, it's so doable and I can see it and I know how to do it. I just need some time and I know that other teachers want that. And with all liberatory struggles, we need to understand that we are not working.   01:04:54:03 - 01:05:25:24 Trina Allen For now, boys. We have to harm reduce in the now, right, Because it can't be on the back of our own children. But to know that we are creating a world in which that loves them better is important. All of those kids in the class that sees what a truly universal design lesson is are benefited right, whether they're disabled or neurotypical or not.   01:05:26:01 - 01:05:37:10 Trina Allen I think that that is happening. It's just not happening fast enough and it's not happening in every classroom. It depends on the teacher. The teacher. It depends on the there needs to be a good teacher herself.   01:05:37:12 - 01:05:40:05 Erin Croyle yeah, absolutely. And that doesn't exist everywhere.   01:05:40:09 - 01:05:48:10 Trina Allen No. And in most places it doesn't. And most places pull out of teaching is what they're just talking about. Reasons for it. They say, Coach Jane, you're talking about racism.   01:05:48:12 - 01:05:57:10 Erin Croyle And what in fact, I think I think briefly, I think it's important because I believe that there are going to be people listening who don't even know what a co teaching model is. Do you want to explain that?   01:05:57:15 - 01:06:47:11 Trina Allen Yes. Okay. You're right. Okay. So there are multiple ways in which co teaching can look well we talk about co teaching is just like term is meaningless unless we're talking about the individual place in which it's practice. When I say co teaching and I actually mean it as opposed to placement, I mean a classroom with two teachers who create the lessons together who are based off of whatever it is that you're trying to teach, whether it be art or history or math or whatever, so that you are creating it together in a universal design, meaning that every standard from pre-K to 12th grade So you're going to have some kids that go are reading at   01:06:47:11 - 01:07:32:01 Trina Allen the 12th grade level, you better hit them right? You are making the instruction to meet an understanding at each space. Right? And that I expected outcomes are somewhere on that distribution and you don't pick which one is right. You just portfolio out there where that kid is right and you teach them. The next thing we can talk about seventh grade standards and we can say, yes, this is where we're hoping that kids are at with the understanding that not everyone's going to be at that place and with the understanding that some kids might be in ninth grade and some kids might be a fifth grade.   01:07:32:04 - 01:07:51:01 Trina Allen And that is fine for the kids at fifth grade, we're looking at the sixth grade standards for the kids. At ninth grade, we're looking at the 10th grade standards. So we're moving them where they want to go. And also based on their personal needs, let's say they really hate math and they're just getting through it. But my God, they love English.   01:07:51:01 - 01:08:23:13 Trina Allen So, you know, let's let's push them a little harder on that. Let's show them all this wealth of information that they're very interested. It's individualized based both on where they're at in that particular subject and also personal understanding and ways in which they learn. And it also needs to be, if it's a student who is not speaking and needs to be completely accessible with their AC, and it needs to be provided in multiple output ways, everything needs to be using the technology assistance that they need and have, and it needs to be titrated to their individual.   01:08:23:13 - 01:08:57:07 Trina Allen And that is a big ask for Koti to write. That's just one lesson and I think I've said a lot. So is it doable in every time and every way? If you're teaching five different periods and you have 100 kids and no, it's really, really hard to do that, especially when you're often not giving a co teacher or when people misunderstand the model and think that the co teacher is to adapt the work, that there is an expected work.   01:08:57:09 - 01:09:24:02 Trina Allen And it's this narrow standard that you're teaching for the class and then everything else is an adaptation you make, you do with your kids that is not co teaching, that is placement in a generic classroom. It needs to be the curriculum needs to be created with guidelines at everyone's level. Otherwise kids fall through the cracks, right, right. Or disabled or not.   01:09:24:04 - 0

    1h 12m

  4. AUG 27

    Are Inclusive Schools Even Possible? Part 1

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

    1h 7m

  5. AUG 1

    The Only Detox Worth Doing

    Looking to feel better? Want to help your children feel better?  It might be time for a detox. And the one we’re talking about actually works.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Details on the United States Surgeon General’s Advisory About Effects of Social Media on Youth Mental Health.    Surgeon General Dr. Vivek Murthy’s Op Ed Essay on why he’s calling for a warning label for social media.    Here is a full review of the book The Anxious Generation by Jonathan Haidt.    Looking for ways to protect your family when they are online? Check out Erin’s article on how to make that happen: Time for Some Screen Cleaning. Want to share your own experiences attempting a digital detox? Send Erin an email!   TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement and Lisa's Partnership for People with Disabilities.   01:00:34:17 - 01:01:06:12 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating of the tough stuff for so many of us. Everything feels harder than it should lately. Most everyone I know is just sort of getting by. That whole living your best life vibe that we had going around several years ago is mocked in a lot of circles.   01:01:06:14 - 01:01:22:15 Erin Croyle So what's going on and what can we do to change it? Dare I say, a detox is in order and the one I'm recommending is something virtually everyone needs.   01:01:22:17 - 01:01:46:01 Erin Croyle Is anyone okay right now? I'm living in this fog that's just clinging to every part of my being. My brain, my body, my soul. It lightens now and then and even lifts for a bit once in a while. But most of the time, it's so dense. I feel it pulling me down. When I talk to people close to me, most of them are in this metaphorical fog too.   01:01:46:03 - 01:02:10:05 Erin Croyle I'm sure that some of what my age said is feeling is partly part of middle age, but I see it in my children and other kids their ages. I see it in. I see it across the board. This is an unprecedented mental health crisis that we're in. Our whole country is living under a heaviness like never before. So how do we feel?   01:02:10:05 - 01:02:39:01 Erin Croyle Better. Look, I'm a journalist, not a doctor. Over the years, I've read, listened to, watched and or tried practically every bit of healthy living advice out there clean eating, running, tracking macros, fitness watches, apps, sleep hygiene, skipping breakfast, and sometimes lunch, also known as intermittent fasting. And even though I know that they're ridiculous, I love the idea of a detox.   01:02:39:03 - 01:03:12:01 Erin Croyle The problem is none of them work. Even if I feel better for a little bit once, whatever I've cut out comes back into my life. All that work is for naught except for one. As my daughter would say. Drum roll, please. The Digital Detox. My first true digital detox happened by accident nearly a decade ago. We were on a family vacation in Michigan's Upper Peninsula and we had absolutely no service.   01:03:12:03 - 01:03:41:09 Erin Croyle So imagine a week without a ping, a ring or a vibration interrupting a darn thing. There were no new notifications on social media. I didn't have the ability to post anything and therefore there was no need to see if there were any reactions. I didn't have any breaking news, no texts. It was amazing. That week was transforming. We live in an era of information overload that is beyond comprehension.   01:03:41:11 - 01:04:15:03 Erin Croyle The only way to realize this is to pull yourself out of it. Pretty much everything you pull up on your phone is designed to get you to use your phone or that app or that website even more. This podcast, same thing. Every entity has their own reasons to get you to go down the rabbit hole. Now, for the work I do, it's so that people with disabilities and their families, whether it's ADHD or cerebral palsy or mental health or Down's syndrome or whatever, it's to have meaningful content with relatable stories that we can all listen to.   01:04:15:05 - 01:04:44:08 Erin Croyle It's to connect people through digital media or in person, because this experience can be so isolating. It's providing information and resources for people with disabilities and their caregivers. It's collaborating with professionals and community members to make the world a better place for everyone. Ours is a well meaning rabbit hole, as are many others. But there are plenty of other holes that we fall down, and they range from harmless fun to vapid to downright dangerous.   01:04:44:10 - 01:05:16:17 Erin Croyle Now, as an adult, I'm aware of the social media suck. My children, however, are in defiant denial of the pull it has on them. I finally have some research to back up my concerns. Our surgeon General, Dr. Vivek Murthy, is calling for a warning label for social media platforms. He points out that it's clear that it's a contributor to our mental health crisis and that we have to act now, even though the information we might have is imperfect.   01:05:16:19 - 01:05:46:04 Erin Croyle In his latest book, The Anxious Generation How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness. Social psychologist Jonathan Haidt demonstrates the direct correlation between the introduction turned widespread use of smartphones. Social media, video games and other online platforms to the increasingly worrisome rise of the mental health crisis that we've witnessed over the last decade plus.   01:05:46:06 - 01:06:17:23 Erin Croyle He does this using copious amounts of research. I'll put the links to the Surgeon General's initiative and more about the book and its author in the show notes. Reading his book confirms so many things that I've heard anecdotally from other parents and educators, particularly the term forever elsewhere. It's how they describe children today, especially in school, where they should be engaging and interacting, but they always seem sort of absent.   01:06:18:00 - 01:06:45:12 Erin Croyle If you talk to educators who've been in the field for a while, they'll tell you they see a dramatic change in students today and they'll describe something that sounds just like that forever elsewhere phenomenon. It's really interesting to me how our society puts Steve Jobs on this pedestal because he created the iPhone and the iPad and so many people just hand their children these iPads and kids have their own tablets.   01:06:45:14 - 01:07:14:00 Erin Croyle But Steve Jobs wouldn't let his kids use either of these devices in their home. Bill Gates talked about how he limited screen time for his own children. So our tech leaders know about the dangers. And we now have plenty of evidence that our social media companies are in the business of creating addictive platforms to draw us and especially children in to be heavy users.   01:07:14:02 - 01:07:45:13 Erin Croyle I mean, if you think about it, we are creating content and making them money, most of us, for free. Now, I know it's hard because it can be so much fun and it connects us with people that we know. But I don't know when you think about it, do you really need all that connection? And when I look at all my friends on Facebook and Instagram, these hundreds of people, I mean, no offense to many of you, but do we need to know what's going on in each other's lives?   01:07:45:15 - 01:08:26:12 Erin Croyle Do I really want to be connected to my entire graduating high school class anymore? I'm 46, and the way that our online interactions impact our in-person interactions is palpable. It's desensitized us to being humane and empathetic. It's so easy to write a flippant comment on someone's post that we would never dream of saying to that person to their face.   01:08:26:14 - 01:09:22:03 Erin Croyle It's impacting humanity. It's impacting our caring, our kindness, our tolerance. We really need to look at that. Beyond that, though, just that constant stimulation, we aren't even aware of what it's doing to our brains. But what I can tell you from my own experience when I do quote unquote detox or make intentional efforts to not have my phone or not be online or not check anything, I feel better when we're in the throes of the busiest times of the year and you get the vibration or the text or the ping.   01:09:22:05 - 01:09:52:00 Erin Croyle It can just set you off. It's impossible to relax because we are constantly interrupted and there's a sense of urgency that we never had to deal with before. Someone texts you and they expect to have the response right away. What is that doing to our nervous system? Could part of this be why we are all so tapped out?   01:09:52:02 - 01:10:28:21 Erin Croyle A lot of people like to blame the mental health crisis on the pandemic and the isolation we experienced while we were figuring out just how contagious and awful COVID is. In what in that time, I know that I saw my own children grade school age children, online hours every day. And what I can tell you is even my youngest, who was a kindergartner at the time, was able to circumvent so many safeguards to just go on to YouTube.   01:1

    36 min

  6. JUN 30

    Dual Perspectives: Navigating Special Education as a Teacher and a Parent

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

    1h 8m

  7. MAY 31

    Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective

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

    38 min

  8. APR 30

    You Are Not Alone

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

    33 min
See All (23)

Ratings & Reviews

5
out of 5
2 Ratings

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/

Information

To listen to explicit episodes, sign in.

Stay up to date with this show

Sign in or sign up to follow shows, save episodes, and get the latest updates.
Select a country or region

Africa, Middle East, and India

Asia Pacific

Europe

Latin America and the Caribbean

The United States and Canada