Monthly Archives: March 2017

Speculation

Wooden-Backyard-Fences

Parents of neurotypical or typical children look on us, we parents with children with disabilities with pity—but mostly with relief. They say a prayer quietly to themselves, “Thank God that’s not me.”

I know that “we,” “we” parents of children with disabilities “get it.” In fact, my 280-page dissertation was about his intangible idea of about “getting it.” About how “we,” because of our unique experiences with our children, have been transformed and have an ethereal and grounded metacognitive awareness of our purpose in life. “We” are closer to understanding the meaning of life than “they” will ever be.

But what do “they,” as in parents of neurotypical children, think about us? That’s a question I never thought about until today. I’ve been so consumed with reading and researching families of children with disabilities for the last ten years, that I realized I know nothing about neurotypical parents. I’ve never been one. I only have one child, and he is disabled. Is it fair that I judge them — maybe even more harshly than I think they are judging me?

So, I decided to take a random neighbor and watch her, watch me. And get in her head and speculate what she might be thinking about me. I have lots of unfavorable opinions about neurotypical parents of children with disabilities. It’s driven by my experiences of my kid being ignored, disregarded, of not being included (him and me), but if I’m honest, it’s also driven by a little jealousy.   While I consider myself all-knowing compared to them, I’d take ignorance any day if it meant that my kid hadn’t had to endure 37 surgeries and procedures in 13 years and live a life that includes yes, joy, but also exclusion and pain.

Here is what I imagine she might be thinking, saying to herself…

You have a child in a wheelchair. I don’t think he’s right, you know in the head because he hoops and hollers and rocks back and forth. You are always coming and going— I don’t understand what you do or if you work. But, then sometimes I see you dressed up in business attire. Someone else told me that you are a professor and a writer, but you are not gone every day and sometimes you have him, your son, with you and sometimes you don’t. I’ve tried to engage you in conversation, but you keep your eyes and head down and rush in and out of the garage. You can’t be that busy. All of us in the neighborhood chat over the fence or at the mailboxes or in the park.   You never join us.

 Maybe you are embarrassed. I imagine it would be hard to live here and have the only kid in a wheelchair. All of our kids play sports and are expected to go to college. You were once lingering in your driveway, getting something out of your van, and I walked over. I offered to let your son pet my dog and you said, “Thank you, but he doesn’t like dogs” and you and quickly walked away. I thought that was rude— I mean, I was trying. I never see any kids come over to visit or play with your son, so I thought perhaps he could come play with my dog in the backyard. I mean, what do I even say to you next? I feel sorry for you? I’d like to know more about you and your kid, but I don’t how to ask?  

 I’ve seen the ambulances come and go over the years at her house, and I’d like to help, but besides a wave sometimes, you never smile. I never see you at the park or on your porch. You simply rush in and out of the garage. You never join our neighborhood events.   I wonder, do you even like us? Maybe you think you are better than us. On the weekends, I see you on your deck hidden into the darkest corner that is the furthest from street view with a cocktail in hand, grilling late at night and listening to soft music. I’d like to stop by on my evening walk to say hello, but you remain with your head and eyes down. You don’t want to interact with us. Maybe, there is something wrong with you too, and that’s why your son is like that.  

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