This summer, around the same time John started working to climb real staircases, I introduced the concept of a name for some of his disabilities.
He has so many conditions and potential conditions, so many acronyms, in his chart. I had to pick one. I picked the most recognizable - CP. I told him that he uses a walker right now because he has CP. Sometimes I would remind him, when he was trying to write letters or scoop food, about CP. So now, there could be John, and there could be this thing John has. He took to it fine.
When he started public school this year, we discovered one other child just his size at school, walking with exactly the same red-handled walker. John had never seen anyone walking with the same walker before. They became friends. Soon they got to have PE together. I was thrilled for them both.
We've been watching episodes of the Curious George PBS series. After each animated monkey adventure there is a short video of children doing something that relates to the episode: discovering a scientific principle, making ice cream, drawing their skeletons. Last week John and I were lying on the floor watching Curious George visit a kindergarten class. We both love it when George tips over the bookshelves, dumps the sand out of the sand table, and accidentally pulls the plug from the water table. The real-life piece that followed was about a preschooler who was visiting a kindergarten class to see what they do there.
"What are they doing?"
"That girl is visiting kindergarten. She wants to see what it's like, so she'll know when she goes there next year. Those kids are kindergarteners."
"Oh." He shifts on his elbows. "Why don't they have CP?"
I can't tell if my heart is lifting or sinking, but it happens quickly enough that I can still answer.
"Are there no kids with CP in that class?" I look at the kids on the screen. "You haven't seen any walkers or wheelchairs in this video?"
"Hmm. Maybe the kids with CP are in the kindergarten class next door to this one."
"Oh." He sounds kind of bummed out.
"Do you want to see a story where kids with CP are going to school?"
"Okay." I'm not sure what I've gotten myself into, but this has to become a reality for him. Something, of some size, in some format. Something.
There have been a few books we saw at libraries, but they were either dated or poorly illustrated or covering a different disability than any of his. His favorite books don't mention this stuff. Don't mention learning Braille or using the walker or taking medicines; or sitting in a lot of specialists' offices being talked about, and occasionally talked with. I would joke about the titles: Curious George Runs over Sister's Toe with his Walker, or Dora and Diego Don't Play Tag Because They Can't Run and Also Because They Can't Understand the Social Concept. But realizing that John feels somewhat alone in the literature and media around him doesn't put me in a very joking mood, not even a sarcastic one. Because stories contain meaning. We find ourselves in stories, and sometimes we find the other. It's wonderful that John enjoys Curious George getting into all sorts of scrapes and that it can have meaning for him. But surely there is a place for how hard it is for some little monkey to get into the car or how he wants to play with the neighbors and sometimes they don't want to play with him. For how the other students stepped on his fingers on the playscape because he still crawls on it. For how embarrassingly thrilled his mom was when, at age 6, he brought home school notes for several days on his new, positive toileting accomplishments.
Or if not those, then for whatever child moments that do have meaning for John, that could be portrayed and given to him to view or read. Maybe just getting around school with the red-handled walker. Something.
I'm in Australia, and I make kids TV. I'm working hard to try and make John's concept a reality somehow. I've got a plan to try and get an autistic character in there too.
Anytime you want to talk, give me a yell. It has to be possible.