Friday, August 2, 2013

Disability and Dinosaurs - with thoughts from Jane Yolen

Here's the conversation between me and my son, Nico, last night, as he headed to use the toilet.

Me: Nico, do you need a book?
Nico: Di-no
Me: Dino?
Nico: Okay!

So I handed him our shiny new copy of How do Dinosaurs Go to School.

Nico has Down syndrome. More relevant: he has speech apraxia, and every word represents hours and hours and hours of work from him, his therapists, his teachers, his parents, and especially the aforementioned him. One of my  experiences of disability involves the intense joy and pride that each tiny accomplishment brings, a joy directly related to the amount of work that went into it. 

The comparison I like to make involves my kids learning to walk. I was proud of both them for when they walked. Nico stood up for the first time at 12 months, learned to take two steps between objects (say a chair and a table) about six months later, started walking on a treadmill with hands held that year, and became a real walker at 2 and a half - so there was an 18-month period in which we worked. And worked. And worked. Ellie stood up for the first time at around 4:00 when she was 11 months old. She had learned to walk by 7:00 that night. I was proud of her, and I worry a lot about making sure we celebrate her accomplishments sufficiently (the subject for another post). But 3 hrs vs 18 months; easy natural development vs intensive work. This matters.

So now we focus a lot of our attention on language, carve out words, and then try to reinforce them (as words come and go with apraxia) and make them part of his regular pattern of communication. 

In sharing Nico's "Di-no" locution, Jane Yolen, the author of the book series (her son, daughter-in-law, and grandkids are friends of ours), chimed in to say that she had heard from many parents of kids with disabilities to say that the Dino books were special favorites and useful in helping the kids through their day. I wondered if it was visual, that the images of giant dinos making their way through a tiny world somehow echoed cognitively for kids who often feel out of place in the world. She replied (quoted with permission):
"I think it begins with the dinos having a lack of control over themselves, and how they slowly (after the NO. . .) get that control. And so the readers/listener by becoming like the dino can see themselves getting a measure of control. But also, even when the dinos are at their most misbehaving, the message is (as much as I ever put messages in my books) that mommy and daddy always love them. But as it's all done with humor, it doesn't feel like a lesson. I hear over and over the children say to their parents, "I'm a good dinosaur.""
So that's beautiful.  The /children/ say to their parents, "I'm a good dinosaur," even though in the books it's the parents/author speaking to the kids.

Now if only I could Nico to eat some vegetables.

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