“So what’s his special?”
The affable, nose-pierced young woman who takes our order at the local Panera is curious. We have just ordered our Caesar salad (Gus) and turkey-club Panini (me). She asks how old are you? Gus answers 13. Then he runs off to self serve some fruit punch.
I fumble for cash and blink. Huh?
“His special. I like to ask because my nephew is autistic. Your son doesn’t look 13.”
Calgon, take me away.
I think of Matthew. His “special” is CP. He was Gus’ best and only friend and classmate in the “special” class at the local public school. One day, after meeting with our sons’ teacher, Matthew’s mother and I walked out together. “Kids are mean,” she said, “but grownups are meaner.” When we got to her car, she looked at me and said: “most of the time I forget that he is different.”
A long hungry line forms behind me. I stand like a statue holding a $20 bill. To describe the many ways in which Gus is special seems off-topic, at best. Defensive at worst.
Grownups are meaner. We use shorthand when no shorthand will do. And little kids in schools all over the world become the opposite of special when they are labeled and dismissed. Mothers too.
“If you have a child with a disability, you are forever the parent of a disabled child; it is one of the primary facts about you, fundamental to the way other people perceive and decipher you.” writes Andrew Solomon in Far From the Tree. “Such parents tend to view aberrance as illness until habituation and love enable them to cope with their odd new reality – often by introducing the language of identity.”
When Gus was (finally!) diagnosed with dyslexia, we left New Jersey for Kentucky so that he could go to a school that specializes in dyslexia. There, as Andrew Soloman writes, we discovered that “differences unite us.”
Like Matthew’s mother, I could forget that Gus was different, or special, or whatever word they’re using at lunch counters across the mid-West. Not only was Gus happy to have friends with struggles like his, I was happy to meet mothers with struggles like mine.
Nevertheless, I do not want to perform like a trick pony for the woman at Panera. I mumble something about dyslexia and run away. For the rest of the lunch, I silently resent Gus’ exuberance. I want him to show the woman — and everyone else for that matter — that there is nothing special going on at our table. Which is sad, because there usually is.
Soloman writes about neurodiversity – the movement that rejects the idea that learning disabilities should be fixed or cured, but instead embraced as the natural progression of the human genome. But I think this identity as illness thing is complicated. Our children with learning differences are much more than their diagnoses.
Some dismiss the Arrowsmith Program because its cognitive exercises increase the brain’s capacity to learn. Instead, they prefer to wear their disability like a badge of honor – their struggles have defined them for so long it would be like a betrayal to “fix” or “cure” them.
But the kids in the Program are not broken or sick. They are in pain. And nothing about that feels very special.