The Odyssey: Parenting. Caregiving. Disability‪.‬ Erin Croyle

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.

You are what you eat. That adage has been around forever for a reason. 
The foods we consume have changed drastically over the last few decades. Packaged, highly processed foods have flooded groceries, gas stations, schools, sporting events, and gatherings. It's practically impossible for a child or adult to go a day without having ultra-processed fare offered or simply sitting out to grab. 
We're still learning the full impact this has on our minds and bodies. So far the data and anecdotal evidence show it's not good. And to be clear, this has nothing to do with weight or appearance. We're talking overall health, growth, behavior, and how we feel. 
Shunta Summers sees this every day. She is the owner and president of Foundations Learning Academy. She's dedicated her life's work to childhood education and nutrition because she understands how it impacts the lives and futures of young people.
The Odyssey: Parenting. Caregiving. Disability. 
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 
 
TRANSCRIPT:
01:00:07:20 - 01:00:36:07
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I join the club, so to speak, in 2010, when my first child was born with Down's Syndrome. I left my career as a television journalist to immerse myself in parenting and understanding all things disability.
 
01:00:36:09 - 01:01:03:01
Erin Croyle
This eventually led to my work at the Center for Family Involvement at VCU's Partnership for People with Disabilities as a communications specialist. The impact our diets have on our brains and bodies has always interested me. Becoming a parent of three very different children and learning what families and schools are dealing with when it comes to nutrition made me realize how complicated feeding children can be.
 
01:01:03:03 - 01:01:21:01
Erin Croyle
Shunta Summers is going to break this down with me today. She's the owner and president of Foundations Learning Academy in Richmond, Virginia. Her child care center has a focus on early childhood education and nutrition.
 
01:01:21:03 - 01:01:44:22
Erin Croyle
Shunta, thank you so much for joining me. You have such an interesting background. Born in Queens, graduate from high school in Chesterfield, majored in food science at North Carolina State University. You own and run a successful business. You do volunteer and advocacy work. You're a mother of four. I don't know how you do it all. Maybe we should start with a what I eat in a day quiz.
 
01:01:44:22 - 01:01:49:00
Erin Croyle
Right to figure it out. Seriously, though, how do you do it all?
 
01:01:49:02 - 01:02:16:08
Shunta Summers
Well, thank you so much, Erin, for having me today. I like all of you. We're in this together. We're growing and learning as we live. One of the things that I do is I try to plan as much as possible, but life happens, throws us curveballs. We can't always do what we planned to do in the day. So that's one of the reasons why one of the key things is prepping.
 
01:02:16:10 - 01:02:37:16
Shunta Summers
I'm a big advocate for prepping at the center as well as at my home, because a lot of times I have to spend more time at the center. There are times that I don't get to provide the home cooked meals that I want to at home. So my alternative is to have meals prepped for my children so that they can grab and go.
 
01:02:37:17 - 01:03:00:15
Shunta Summers
It makes a lot easier that they're getting older, but I still want to make sure that they're given the best choices as possible, knowing that there's so many alternatives at their f

People with intellectual disabilities are sexually assaulted at a rate SEVEN TIMES HIGHER than people without disabilities. And that figure is likely a substantial underestimate, as it doesn't take into account repeated abuse or people living in institutions and group homes. 
There are steps we can take to prevent abuse and empower our loved ones to protect themselves and understand the difference between healthy and unhealthy relationships. 
We spoke with Molly Dellinger-Wray who leads LEAP - Leadership for Empowerment and Abuse Prevention - at VCU's Partnership for People with Disabilities and LEAP trainer Rose Sutton.
 
The Odyssey: Parenting. Caregiving. Disability. 
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 
 
SHOW NOTES: 
As Rose mentioned, caregivers need to take care of themselves, too!! 
To register for the upcoming LEAP webinar on March 18th, click here!
For more about Healthy Relationships and Abuse Prevention, check out LEAP’s website. LEAP is currently funded by the Individual and Family Support Program at Virginia’s Department of Behavioral Health and Human Services. 
Partners in Policymaking is a leadership development and advocacy education program for people with disabilities and family members. This free program is offered across the country and online in some areas. PIP started in Minnesota in the late 1980s. 
The NPR report on abuse can be found here. The latest statistics on abuse are here. 
The Adult Down Syndrome Center/Advocate Health Care webpage has many adaptive visual aids to help people with IDD with various things. Including: 
Bathing and Showering
Sexual Health and Relationships
Self Care and Hygiene
Social Skills
 
01:00:07:20 - 01:00:34:11
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. My new path started in 2010, when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities a few years after he was born.
 
01:00:34:12 - 01:00:47:05
Erin Croyle
Using my journalism and television producer background as a communication specialist, I have the privilege of bringing much needed attention to issues facing our community.
 
01:00:47:07 - 01:01:20:02
Erin Croyle
Unfortunately, rampant abuse is one of them. NPR's 2018 report The Sexual Assault Epidemic No one talks About brought this to light. Correspondent Joseph Shapiro's yearlong investigation found that people with intellectual disabilities are sexually assaulted at a rate seven times higher than people without disabilities. And that's likely an underestimate, as the report notes, because government surveys used to compile this data don't include people living in institutions or group homes.
 
01:01:20:04 - 01:01:51:19
Erin Croyle
These statistics are integrating heartbreaking and terrifying, but there are steps we can take to prevent abuse. That's why I asked Molly Dellinger-Wray and Rose Sutton to join me. Molly leads a program at VCU called LEAP, which stands for Leadership for Empowerment and Abuse Prevention. LEAP provides training on healthy relationships and information for preventing abuse to adults and teens with intellectual and developmental disabilities.
 
01:01:51:21 - 01:02:18:10
Erin Croyle
LEAP was founded in 2014 and is currently funded through the Individual and Family Support PrOgram at Virginia's Department of Behavioral Health and Developmental Services. Rose Sutton is a disability advocate, autism specialist, mother and a sleep trainer. Molly and Rose. Thank you for joining me.

Self-care is something we all need to do. But for many of us, it's an elusive practice.
Caregivers are working harder than ever. Which makes self-care more important than ever.
Knowing how real this struggle is, I reached out to my friend and chiropractor Dr. Sarah Gardner. She gets it, and has so many practical, doable ideas for how we can make self-care happen!
 
The Odyssey: Parenting. Caregiving. Disability. 
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 
 
SHOW NOTES:
 
Dr. Sarah Gardner is co-founder and co-owner of FLX Athlete Retreat. 
 
All of the suggestions for movement, hydration, nutrition, apps, and much more are here. 
 
 
TRANSCRIPT:
01:00:07:23 - 01:00:35:00
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. My beautiful tangent came in 2010 when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities. A few years after he was born.
 
01:00:35:02 - 01:00:58:14
Erin Croyle
Utilizing my journalism and television producer background as a communications specialist, it's amazing to be in a position where I can share stories unique to families like ours. One thing we talk about in our circles, but certainly don't do enough of is self-care. In fact, many caregivers I know scoff at the idea, myself included. It's not that we don't see its value.
 
01:00:58:18 - 01:01:21:22
Erin Croyle
We just can't seem to make it happen. The lives of folks like us who are caring for a loved one for life are just different. The physical, mental and emotional demands are constant. Even if you manage to get some time away, there's no time off when someone you love needs constant support. This is why basic self-care is so critical for us.
 
01:01:21:24 - 01:01:46:11
Erin Croyle
So how do we make it happen? To talk about this, I've invited my friend and my chiropractor, Dr. Sarah Gardner, on. She and I have been shooting the breeze for nearly two years. I found this amazing woman while recovering from hip surgery. Dr. Sarah gets it. She provides care with compassion and understanding in our many hours together, we've laughed at how ridiculous fad diets are.
 
01:01:46:13 - 01:02:00:22
Erin Croyle
We commiserate on how impossible it is to juggle it all as parents. We praise the Almighty Oatmilk latte and we swear way too much.
 
01:02:00:24 - 01:02:25:02
Erin Croyle
Sarah, thank you for spending some of your precious free time with me. For our listeners, I just want to paint a picture here. You're a mother of two, a business owner and ultra marathoner who's married to a CrossFit instructor. You're all about body positivity and health at any size. You stressed the importance of rest and having fun. The times when I've come in and admitted to you that I haven't done any of the things I should have.
 
01:02:25:03 - 01:02:49:07
Erin Croyle
You validated how hard it is and encouraged me to just try to do one or two things. I always leave our appointments feeling heard, understood, and more hopeful. The business, by the way, is Flex Athlete Retreat, located in the Finger Lakes, Ithaca, New York, to be precise. It's this little haven where you have chiropractic services. Your colleagues do massage therapy and acupuncture.
 
01:02:49:09 - 01:02:56:01
Erin Croyle
The space is this oasis with an amazing green velvet couch. Did I sum it up correctly?
 
01:02:56:03 - 01:03:16:16
Dr. Sarah Gardner
Yeah, I think you summed it up. Thank you for the introduction. I think the first time I met Arlo was o

This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it. 
This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives. 
The Odyssey: Parenting. Caregiving. Disability. 
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 
 
SHOW NOTES: 
Nickie Brandenburger is the Director of the CFI's Family to Family Network. 
More about I'm Determined.
Interview with I'm Determined founding member Dr. John McNaught. 
More about the sibling perspective. 
Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Rural Outreach Specialist. 
Lisa is also a part of the Genetic Navigator Program. 
More about Carilion which Lisa mentioned.  
River's Way is the community organization that Lisa's children find benificial.
Lisa was a guest on the podcast back in May, sharing her experiences as a parent, advocate, and person.  
Jen Reese is the Regional Network Coordinator for Northern Virginia and part of the Genetic Navigator Program. 
The STXBP1 Disorders website features the lattest on the condition as well as the FDA recording that Jen participated in.
A podcast on the diagnostic odyssey one mother faced for her child's rare genetic condition.  
Parenting Special Needs feature on transitioning to the empty nest. 
Mauretta, Edgar, Lisa, and Patrice are all part of the CFI's Cultural Broker Initiative
Elderhood and Aging Families. 
 
 
TRANSCRIPT:
 
01:00:07:21 - 01:00:37:14
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities.
 
01:00:37:20 - 01:01:05:11
Erin Croyle
He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families.
 
01:01:05:13 - 01:01:36:22
Erin Croyle
People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things.
 
01:01:36:24 - 01:02:03:05
Erin Croyle
The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023.
 
01:02:03:07 - 01:02:29:08
Erin Croy

It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost?
In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)
 
The Odyssey: Parenting. Caregiving. Disability. 
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 
 
SHOW NOTES:
Heather Trammell is the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago. 
Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch.
More about IDEA - the Individuals with Disabilities Education Act.
More about the ADA - the Americans with Disabilities Act.
 
 
TRANSCRIPT
01:00:07:18 - 01:00:36:21
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU’s Partnership for People with Disabilities.
 
01:00:37:11 - 01:01:01:24
Erin Croyle
This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.
 
01:01:02:14 - 01:01:30:20
Erin Croyle
After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.
 
01:01:31:05 - 01:02:01:21
Erin Croyle
These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.
 
01:02:02:08 - 01:02:15:19
Erin Croyle
Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?
 
01:02:16:00 - 01:02:43:20
Heather Trammell
Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.
 
01:02:44:04 - 01:03:20:19
Heather Trammell
I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether