2024 Airing of Grievances: Sharing our Secret Lives

The Odyssey: Parenting. Caregiving. Disability.

We're trying something different this episode: our first ever anonymous "airing of grievances."

Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.

When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.

What about you? What secrets do you wish you could share?

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

TRANSCRIPTION:

01:00:06:19 - 01:00:36:11

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

01:00:36:13 - 01:01:03:16

Erin Croyle

One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.

01:01:03:18 - 01:01:35:14

Erin Croyle

It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.

01:01:35:16 - 01:02:04:18

Erin Croyle

It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.

01:02:04:20 - 01:02:21:05

Erin Croyle

For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.

01:02:21:07 - 01:02:45:01

Erin Croyle

My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.

01:02:45:03 - 01:03:13:14

Erin Croyle

Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.

01:03:13:16 - 01:03:45:13

Erin Croyle

And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.

01:03:45:15 - 01:04:14:11

Erin Croyle

What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.

01:04:14:13 - 01:04:48:13

Erin Croyle

Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?

01:04:48:15 - 01:05:14:09

Erin Croyle

One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.

01:05:14:11 - 01:05:37:14

Erin Croyle

Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.

01:05:37:16 - 01:06:05:05

Erin Croyle

I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.

01:06:05:07 - 01:06:30:14

Erin Croyle

Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.

01:06:30:16 - 01:06:57:11

Erin Croyle

Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.

01:06:57:12 - 01:07:28:02

Erin Croyle

Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.

01:07:28:03 - 01:07:50:20

Erin Croyle

So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else.

01:07:50:22 - 01:08:19:06

Erin Croyle

My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion.

01:08:19:08 - 01:08:42:14

Erin Croyle

Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us.

01:08:42:16 - 01:09:05:22

Erin Croyle

The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite.

01:09:05:24 - 01:09:30:04

Erin Croyle

They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children.

01:09:30:06 - 01:09:57:17

Erin Croyle

I keep trying to let people know that you just have to talk to them as you would anyone else. They're wonderful human beings and have many things to share and give to our community. As a professional with a disability, I can feel overwhelmed and frustrated when reasonable accommodations are asked for and not given. Another parent says, Just because my teenage child doesn't communicate traditionally doesn't mean you should talk to him like he's a toddler.

01:09:57:23 - 01:10:24:04

Erin Croyle

He's a teenager, for crying out loud. Another parent says, I wish my peers understood how complicated caregiving is. I don't talk about this openly because it's nobody's darn business. But total care means total toileting, shaving, teeth brushing, dressing, feeding. For girls, this means feminine hygiene. For boys, it's washing their privates. It's navigating through puberty. And later, sexual needs.

01:10:24:06 - 01:10:49:03

Erin Croyle

That whole birds and bees talk that parents get all stressed about with their typically developing kids. Imagine having to search for and hand over a social story about erections and masturbation to your teen. Everything in our lives is just next level. It's wild. Another parent said, I love my child and will do anything for them. But I hope God never gives you more than you can handle.

01:10:49:08 - 01:11:11:21

Erin Croyle

It is patently false. I'm hanging on by a thread most days. Screaming mercy on the inside. But I can't say that out loud because my child does not deserve to hear that. Sometimes I wish I could just be a parent. I'm tired. I'm getting old. My body needs a break. What you're not prepared for is that caregiving last so long.

01:11:11:23 - 01:11:35:03

Erin Croyle

My adult child with a disability still needs so much care. That includes toileting. Health care. Transportation. Preparing meals, coordinating appointments, and more. When my other kids were young, it was just part of the drill because I was taking care of everyone. But the siblings are grown now and all of my friends have moved on. There are no more school programs or playdates, but I'm still providing the same level of care for my adult child.

01:11:35:05 - 01:11:56:14

Erin Croyle

Most days I don't mind, but sometimes it can feel really overwhelming. A parent of an adult child with a disability shares. I fantasize about getting divorced, but the hardship it would create is far worse than remaining in a miserable marriage. When you have a child with significant support needs, there is so much more to consider than personal contentment.

01:11:56:16 - 01:12:24:22

Erin Croyle

Everything is more complicated finances, employment, health care and being tied to your co-parent forever because there is no when they turn 18 for us. I mean, there is. But it actually gets harder when our kids become adults. Not easier. Another parent shares. I thought that when my child became an adult, things would get easier. I was wrong. Sometimes I feel like I can't trust hope and happiness when it comes to her living her life.

01:12:24:24 - 01:12:47:16

Erin Croyle

I feel like I'm always waiting for the other foot to drop, which it usually does, And somehow I'm always shocked. And then I mourn what I wish her life could be. I remember her as a happy child, and it breaks my heart. So I try not to dwell on that too long. There are times I feel like a hypocrite when I help other families because I can't fix my own.

01:12:47:18 - 01:13:05:11

Erin Croyle

Another person wrote, People ignore me. Now they leave me alone. I'm sorry if I have not taken the time to connect with you, but I am dealing with my adult children who are not like your adult children. We have the best time and I absolutely enjoy spending time with my kiddos. But it seems apparent that they will never leave home.

01:13:05:11 - 01:13:32:18

Erin Croyle

And I'm absolutely overwhelmed. Exhausted. So freaking tired. And I just want to go hibernate somewhere. But I cannot. My children need me. I have a new disability diagnosis thanks to having had COVID and not recovering fully. I wish you could understand COVID is most certainly real and it has affected so many people with lingering issues. We have had to deal with, even after COVID has supposedly gone away.

01:13:32:20 - 01:13:56:10

Erin Croyle

A family member of an adult with developmental disabilities who's also a professional at the Partnership for People with Disabilities, says it's always interesting to share what I do with others. When I do share my profession with other professionals or friends who have not had personal or professional experience with people with intellectual disabilities. There's always a visible change in their demeanor.

01:13:56:12 - 01:14:24:13

Erin Croyle

Usually shock or confusion. I then have to explain what intellectual disabilities are and how my job works. I wish more people recognized that there's this whole population of people living and breathing in their world. People with ID live and work in their community and access the same level of community based amenities, services and supports. But it's as if most people never consider their existence.

01:14:24:15 - 01:14:59:12

Erin Croyle

I think this reaction speaks to the lack of integration of people with intellectual and developmental disabilities in our lives. Beyond the school setting, another professional who has a family member with disabilities said I wish more health care providers understood the importance of and prioritize spending more time with patients with intellectual and developmental disabilities during appointments. People with I want to be involved in their own health care, but they need more time and direction to do so.

01:14:59:14 - 01:15:29:06

Erin Croyle

I also wish more health care and community based providers like local health departments and public services on the city and county level understood that using plain language in their communications doesn't just benefit people with modifying materials, so they're universally easier to read and understand is beneficial for many other populations and could increase the uptake of programing or health care recommendations.

01:15:29:08 - 01:15:58:03

Erin Croyle

And this last one is from someone who does not want to remain anonymous. My friend and colleague Jill Rose is just the epitome of positivity most times and had this beautiful sort of grand finale of a story to end on. Thank you, Joe. When my daughter was born 14 years ago with Down's Syndrome, one of my many initial fears was that I wouldn't be able to communicate with her.

01:15:58:05 - 01:16:22:05

Erin Croyle

While her verbal skills are at the lower end. We do still communicate in our own ways. We sing and dance a lot. We've developed our own language and words. For example, we call each other Mushi, which is just a word she made up years ago. She's much more brave than I am. She rides all of the scary rollercoasters with hubby while I sit on a bench and watch the bags.

01:16:22:07 - 01:16:44:21

Erin Croyle

When we go to the doctors and I have blood taken or need a shot, she knowing how nervous I get, grabs my hand and says, Be brave. She can sense when I'm sad or anxious. It is her unique gift when she senses it, she says It's my turn as she comes to me with open arms. Her healing energy always helps.

01:16:44:23 - 01:17:03:21

Erin Croyle

I gave birth to Sophia, 14 years ago, and if I could go back in time and speak to my younger, fearful self, I would say, Don't be scared. Because in this scenario you're the lucky one.

01:17:03:23 - 01:17:30:02

Erin Croyle

Thank you, Jill. Thank you to everyone who contributed. And thank you listeners. Be sure to rate me as you subscribe. Like follow or whatever it is you need so you get a pain when the next show drops. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

Happy Festivus.