Parenting a Disabled Child: When Your To Do List is Your Yoga by Kelley Coleman

Remember when you read What to Expect When You’re Expecting and it had all the answers? I remember that too. That was fun. 

I also remember when my second child was born, and no book had the answers that worked for him … which meant there was no handbook for me … which meant I was a wreck. 

When you’re the parent of a disabled child, you quickly learn that being a wreck is part of the job description. Why might you be a wreck? Well, loads of reasons. For some, your child may have medical issues that bounce you in and out of the hospital. For others, there’s the chorus of “oh, I’m so sorry” that you keep hearing when all you really want to hear is “wow, your baby has amazing hair,” or some variation of how beautiful they are. And, for all of us, there’s all the paperwork and planning acronyms and appointments and just generally figuring out which way is up. It’s an unexpected path for the vast majority of us. And, a path that leaves us floundering. So, yes, rest assured that if you’re a wreck, you’re not alone. 

As parents, we expect that the caregiving experience will evolve and will reach a point where our children are fully independent, and we no longer consider ourselves their caregivers. As parents of disabled children, we may face a different reality – one that includes fulltime caregiving for the rest of our lives. I say “our lives” because I’m right there with you. Both of my children are remarkable, hilarious, brilliant humans. One of them will one day lead an independent life, one where he does his own laundry and hopefully supports me in my old age. The other will lead an equally meaningful life, but one that will require full-time care and well-orchestrated supports throughout his life. 

This sounds way more articulate than it felt at the beginning of our journey. If you’re at the beginning of your journey on a similar path, you may recognize the state I was in when Aaron was a baby: Sweat pants and loads of crying and eating dry cereal straight out of the box. For months. Because no one had ever told me anything about parenting a disabled child, about what my future would look like, and that our future with our son would actually be pretty great. All anyone ever said was “I’m so sorry.” Over and over and over. 

Wanting to want something more than sweat pants and dry cereal, I went to therapy. I highly recommend it. After several sessions, I vented to my therapist: “None of my friends understand. They keep telling me: ‘I’m worried about you, you should take a yoga class.’ But, I don’t want to take a yoga class. There’s just so much I need to do, and I’m overwhelmed by all of the stuff.” 

“Right now, your To Do list is your yoga,” my therapist replied. 

And, a lightbulb went on in my head. We talked about what self-care actually looks like. Sometimes it looks like yoga and spa days. Other times, it looks like preparing for an appointment with your child’s neurologist or tracking down the medical supply order that never showed up. And that’s okay. 

So, I shifted my idea of self-care. I shifted it to what makes me feel better. And, sometimes that is a yoga class. Other times, I just need to take care of business. 

Sometimes your To Do list is your yoga. 

When you’re parenting a disabled child, that’s part of the job description too. You won’t be a wreck forever. You’ll reevaluate what you need to take care of yourself. You’ll find other amazing parents who are walking this path with you. And, somehow, you’ll manage to do all the things – including loving your children exactly as they are. 

And, in case anyone hasn’t told you lately, your baby does have amazing hair. 

Kelley Coleman is the author of the book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports. Her writing draws upon over a decade of advocating for parent caregivers and individuals with disabilities, including her own rather amazing son.  www.kelleycoleman.com  / @hellokelleycoleman. Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports (Hachette, publish date March 12, 2024) is available now for preorder at all booksellers.