One of the gifts that The Baby’s developmental delays gives us is that he doesn’t care what people think about him. Once, I had him in a backpack and The Kid and I were ordering snow cones. The Baby leaned over and emptied his stomach of all the water I had just painstakingly given him. The woman at the window looked extremely alarmed and asked if he was okay. The Kid and I shrugged our shoulders and explained that, “It was very normal for him to do that and could you make that banana a medium?”
Things that are normal to us can feel shockingly abnormal to others people. It’s easy to forget this.
An inclusive playground opened up near our house so we go every once and a while. I’ve never seen another kid with special needs there but I’m hopeful. Usually, we strap him into his gait trainer so he can practice walking while he plays. A gait trainer makes him look a little like The Terminator and I understand it can be intimidating. Last summer, we were working our way up a ramp and a little girl, maybe about 5, stopped and gawked at him for a moment. She looked at me and asked, “Is he dead?” but with serious attitude. I stared in shock for a second before responding, “No. He’s not dead. Do you see how he’s moving and looking at you?” She ran off, satisfied apparently that I had not dragged my dead boy onto the playground but I was left wondering how I could have done better to educate her.
Parenting is a tough gig. You take this squalling sack of soft bones and you’re supposed to teach it how to be a good human. You have 18 years. The clock starts…NOW! There are so many things that we want to impart on our kids- financial literacy, the enjoyment of reading, how to pump gas, how to keep a job, how to deal with failure. The list of things we need to teach them is literally endless so I’m not mad that families who don’t have immediate access to someone with disabilities don’t know how to help their kids understand disabilities.
I understand freezing up when your kid loudly asks in a store about the woman who is missing an arm or the man who is rocking back and forth. We don’t see enough disabilities in media- books, movies, TV- and so their first experiences often happen in public. Unless you’ve thought through your response, when it happens in the moment, you try to shut them up and hope that the person didn’t hear. Some people with disabilities are willing to educate the general public and some, understandably, aren’t and they don’t wear buttons to let us know what their opinion is on it.
My responses have gotten better over the year. I’ve never been angry about kids asking questions. They sometimes don’t have the language or life experience to express their curiosity appropriately. I also realize that it’s taken me several years to get to this point and I have a kid with a disability.
With this in mind, my sister and I are planning to write a children’s book in 2022. We want to figure out a way to expose kids, at a young age, to different disabilities and encourage their questions and curiosity in a safe way. We want to include a parents’ guide on how to answer questions and encourage inclusion in their kids.
More on that after our writer’s retreat (ahem) in Arkansas later this month. If you have stories or questions or comments, I’m interested to know what you think about this topic.
And, by the way, here was my most recent answer when a kid at an indoor playground asked me, “What’s wrong with him?”
“He has Down Syndrome. He was born with it and you can’t catch it. He can’t communicate with words yet and he needs some help walking. His name is XXXXX and this slide is his favorite. What’s yours?”