Adaptive Parenting: Life as a Disabled Mom in Kansas City

“Don’t tell me what I can’t do.” – John Locke (“LOST”)

It doesn’t really matter if you were ever a fan of the TV show “LOST,” but this will forever be one of my favorite mantras. It’s been influential in how I view my experience as a disabled person and mom.

I have a unique perspective that allows me to truly say that all moms experiences are valid, special and difficult in their own right. However, adaptive parenting is a completely different level of parenting. And I can reasonably predict that you or someone you know has to adapt on some level due to chronic illness, pain or disability. 

My core friend group is composed of all able-bodied moms and as we share our mothering experiences very openly, I can say with a great deal of certainty, adaptive parenting is exceedingly more physically and mentally taxing than it is for the able-bodied mom. The bright side to this is that I’ve figured out a way around most of these challenges and that’s what I want to share with you all. 

I was born with mild to moderate Spastic Diplegia Cerebral Palsy. I wore braces on my legs until I was about 8 years old and had a few intensive surgeries as a child. Other than that, I was very high functioning. I even hiked mountains. It wasn’t until my late 20s that I began to notice degeneration.

My parents and I were told CP was non-degenerative. The doctors were wrong. As a now 36-year-old woman, I can stand for no more than five minutes without severe pain. I use a cane when I’m in public, use walls and counters at home, and for long outings I have a scooter lovingly nicknamed “scoober”. 

Now that you know my story, I’m sure you can imagine having three boys under 5 (while also navigating the intensity of my disability) is strenuous, to say the least. 

Here’s what I’ve found that helps.

I have help. And I accept it.

I’m aware this can be a luxury. I’m not ignorant enough to assume that every mom out there has a huge group of friends or family living nearby. I have friends who, for one reason or another, have to move around frequently to locations in which they’re basically starting from scratch. In my mind, they’re true warriors. I can’t even imagine because I literally wouldn’t survive. I have the security of having a support system that includes both family and friends who are able and willing to drop anything and come to my rescue. If I have a bad fall, my brother and sister-in-law live about five minutes away, and my parents are only about 15 minutes from me.

Asking for help can be hard. It can make you feel vulnerable and downright embarrassed. But accepting help is normal, basic and necessary in order to thrive in adaptive parenting. They say it takes a village. My village just looks like a city. 

I’m innovative.

Ask any of your friends who are adaptive moms all the number of ways they have to figure out how to parent differently. This is why we are extremely creative at knowing how to parent in ways that keep our kids safe. While I can definitively say the baby and young toddler phases are the hardest stages to do this, it gets easier as the kids become more self-sufficient. 

I live in a two-story home so, as I’ve had young babies here, I’ve used a wrap to keep them safe as I go up and down the stairs. The front yard is strictly off limits unless Daddy is home. My kids are great at accepting these adaptations and limitations. Never underestimate a child’s ability to be empathetic. The energy it takes to figure out these mobility hurdles can be exhausting, however, innovation has been, and will continue to be, my friend.

I know my way around.

Knowing locations where handicap adaptability is made a priority in Kansas City is exceedingly helpful, but it can take a bit of energy and time to research. Here’s a list of a few places I’ve found to be extremely adaptive parenting friendly. (Parks that are fully fenced are a huge help, for example.) And remember, the majority of people out there really do want to help you and your children have great experiences. Don’t be shy in asking for assistance or advice from any location in our area. This is one of the many advantages of living in a city smack dab in the middle of the Midwest. Everyone’s friendly. 

• Deanna Rose Children’s Farmstead – City of Overland Park, Kansas
• GEHA Field at Arrowhead Stadium Accessibility Services | Kansas City Chiefs
• Guests with Disabilities | Accessibility | Worlds of Fun
• Stilwell Community Park
• John Anderson Park | Grandview, MO

I give myself space to grieve.

You know those sweet moments in commercials or pictures of mom’s effortlessly swinging their smiling children around in circles? Of course you do because it’s an extremely normal thing for a mom to be able to do. When I see that, my heart drops. I’ll never be able to do that.

I can’t push my kids on swings or play chase or dance with them in my arms. It’s not a constant grief, but it’s just as potent because it comes and goes throughout everyday moments when I’m reminded of what I can’t do as a mom. It’s OK to grieve. It’s OK to sometimes acknowledge that the cards I’ve been dealt absolutely stink. The key to this acknowledgement is to not get stuck in it. I allow myself to totally feel the grief and give space for it. I allow it to be my truth, and then I let it go and focus on the moment I’m in. 

I see my sadness, make space for it and then let it go. 

Being an adaptive parent isn’t an experience someone can understand unless they’ve lived it. We can do anything — we just may need a bit more help.

If you have a Kansas City area mom in your life who is an adaptive parent, please honor their experience. It takes its toll and, whether or not they tell you, they’re exhausted. 

And they could use some grace. Just like you.