By Beth Davis
As parents of disabled children, most of us are on a journey where the feeling of grief is not an unfamiliar one. This same time last year I was throwing around ideas for my daughter’s 10th birthday. It seems like it’s in those moments, moments that probably feel so normal for any typical parent, that grief hits hard. The reality is, I wasn’t planning a typical birthday party. I was trying to plan the perfect day for my child who can’t voice what her dreams are.
What kind of cake would she want?
What gift is she hoping for?
What will we do?
Will her cousins who are so far ahead of her developmentally have a good time? Will she feel left out on her own birthday?
Suddenly, I felt it all over again.
I was so frustrated at myself.
It had almost been ten years and yet I felt like I was still.
Frozen in my own grief.
I grabbed my phone and began searching blogs, hashtags, keywords…anything I could think of to try to find something that I could relate to. It didn’t really matter what. If I found something that told me I was wrong for feeling such complex emotions after ten long years it would be fine. If I found something justifying the way I felt after a decade on this journey, that would be ok too. I just needed something. Anything.
What I found was not what I expected.
In my desperate search I happened to come across a few Instagram accounts run by disabled adults that, upon first glance, seemed to be dedicated to “attacking” parents like myself. Those of us who speak out about our grief, those of us that use the phrase “special needs,” those of us that make sure our children are in therapy routinely, and the list goes on. I was livid. I went into defense mode immediately. I was so shocked by this disconnect that seemed to exist between the disabled adult community and parents of disabled children.
I decided to dive into this disconnect head first, no matter how angry it made me. I needed to understand how someone could say such things about parents who love their children and just want the best for them. I went directly to the comments on a few of these Instagram posts that fueled me. There were several from defensive parents like myself and it was evident that I wasn’t alone in the way I interpreted these posts. The disconnect wasn’t contrived. It’s existence is real and I was so disheartened at the brokenness that had come to light.
Over the next few weeks I Googled and I read. I processed and I Googled more. I stumbled on a podcast and it was exactly the source of understanding that I was searching for. I know this is a huge claim, but it changed my life.
I need to make it clear that this is my experience. No one should tell you how to feel or process this journey, so please know that’s not what I’m doing here. I also feel like there is SO much to unpack on this subject and there is no way I could discuss all of it in this article. I encourage you to do some reading if this subject sparks anything inside of you. Having a non-verbal child means that she can’t express anything she’s feeling or thinking right now. It was important for me to see the perspective of disabled adults and to understand the conflict that I’d known nothing about.
In Episode 40 of the Unexceptional Moms Podcast, Ellen Stumbo interviews Marin Hann. Marin is a disabled adult who grew up with non-disabled parents. She discusses her perspective with such grace and it provided me with such good insight as to why a divide exists. Again, there is so much information on this subject, but I’m going to share the points that really impacted my own journey.
A few things disabled adults want parents of disabled children to know…
“Disabled” is preferred to being called “Special Needs.” I am exhibit A. Up until I realized disabled individuals wanted to be referred to as “disabled” I always referred to my child as “special needs”. I honestly had no idea there were negative feelings around this subject. I have found that when parents are still trying to adjust to a new life with a disabled child they are more comfortable with “special needs”. If that’s you, it’s ok. Everyone’s journey is different. It’s just something to keep in mind and maybe educate yourself on when you’re ready.
Don’t separate your child from their disability. The disabled community takes pride in who they are, their whole self. That includes their disability. The absence of my daughter’s Corpus Callosum is what causes her to process things the way she does. It gives her such a unique perspective on the world around her. It is who she is. I want to fully embrace that. Let’s educate ourselves and our children to love their whole self including their disability.
Sometimes certain therapies or excessive therapies can make them feel like we as parents are trying to change them & that they aren’t accepted as they are. This one was difficult for me to sort through. PT, OT, & ST are the reason my child is capable of everything she can do. As parents, it’s our job to prepare our children for their future. We want to make things easier for them. That’s natural as a parent. Maybe there’s a line we need to be aware of though. I think as long as we have an awareness, we can avoid crossing that line. After hearing Marin Hann’s story, I try to keep the mindset that my child’s team needs to provide tools to accommodate a task and not to force her to try to function like a neurotypical child would. For example, using an augmentative and alternative communication (AAC) device to communicate versus having her sit through therapies trying to force her to use spoken words. We aren’t ruling anything out and we still encourage spoken words, but again, I want to remain aware of the boundary.
Be an ally. Don’t take on your child’s disability. I’m just going to wrap this up with the quote that blew my mind and one that I keep at the forefront of thoughts when I’m having a hard day: “It’s hard for me to feel a lot of sympathy or empathy when people talk about how hard it is to be a caregiver. Because as a caree I don’t get a lot of sympathy. And there’s no caree support group, where we can go and complain about our caregivers.” — Marin Hann
Learning more about how disabled adults viewed life made such a difference for me. I never want my child to think that I want her to be someone else. I never want her to feel like this life was a burden. I stop and think often about how many times she would probably complain about my caregiving skills if she could. A lot, it’s a lot. I never want to pretend like I know what her life is like as a disabled individual.
I hope that if she’s ever able to read anything I’ve written, where I’ve spoken about grief, that she knows it had to be part of this journey. The disabled community may not agree with such a bold statement and that’s okay. Parents want to give our children the best lives we can and when we feel like we can’t, that emotion is going to surface. There’s room for that. I think the important part is that we also examine other perspectives and learn and grow.
A few months passed after my awakening and I began to wonder if what felt like healing would be temporary. Then sitting in the front row of my niece’s dance recital, my daughter’s favorite song came on while a group of girls danced their hearts out and for a moment I lost it. I was a puddle. My daughter would never be able to be in a dance recital. Was this the grief coming back? Was I right back where I started? Maybe grief was trying to rear its ugly head, but I was more prepared.
I was able to take a mental step back and try to look at this moment from my daughter’s perspective. She doesn’t need a stage and a pretty costume to dance. She prefers her dance parties in our kitchen with me by her side.
I hope one day when she’s using her AAC device (or spoken words) to have conversations with her disabled community about their parents, that she remembers two things. That everything her parents did for her was because they loved her more than anything and that dance parties in the kitchen are always a good idea.
Beth Davis is a storyteller about life, style, motherhood and more. She lives in the south with her husband and daughter. Follow along with Beth on Instagram @thesouthernmess.