Wires and Code

Last week AJ and I presented to his class about CDG and life with Teddy. AJ spent an hour making notes on things he wanted to share with his class, focusing on how CDG affects Teddy, ways people can communicate without talking and things Teddy does well.

I'm quite sure AJ lost his classmates when he talked about Teddy's code (aka genes), but I think they got my explanation that it's why some of us have blue eyes instead of green eyes or brown hair instead of blond hair. AJ also lost his classmates when he talked about Teddy's wires not being connected right. (That would be his neural pathways, folks.) But his classmates got the gist of the explanation that there's something that makes life different for Teddy, that he has to work harder to do things that are easy for them and that he's still learning how to talk.

I brought in Teddy's chair (almost as an afterthought) and backpack carrier. I explained that we use these because Teddy has trouble walking long distances and falls often, so these let us do lots of exploring or walk longer distances. I told them that carrying Teddy in the backpack let's us go hiking places where his chair can't go. (Although, trust me, we've taken his Kimba Kruze a lot further on trails that most people would and then just switched out to the backpack carrier. Seriously, who's going to steal a pediatric transport wheelchair 1.5 miles up a trail?)

We shared a picture of Teddy with the class to show his great smile since that was one of AJ's notes. AJ did a nice job explaining ways that people can communicate without talking, whether sign language, gestures or Teddy's iPad.

I tried to end our discussion that even though someone may not respond at the playground when they say hi or may not be able to do everything just like them, that all children want to play and have fun. I told them that even if a child like Teddy doesn't say hi back to them that they can still include that child in their game.

Twinning for a good reason.

Then we divided the class into groups to play charades. I put together simple phrases like "Hi!" or "I want to eat." to help the kids understand how they can send a message without talking. Some of the charades were really easy, and some were more difficult (and my group tried to cheat by listening to what I was telling the person who was acting).

I'm grateful that AJ's teacher gave us the time to share with her class. I know it's important to AJ to educate people about CDG because he wants to share his knowledge and that he loves to talk about Teddy. I like raising awareness of CDG, but I realize a group of kindergarten students isn't going to remember much about a particular diagnosis. My hope and goal is that it raises more awareness and acceptance of others who may be different. These kiddos will be AJ's peers and friends. Even though Teddy won't be at their school, I want them to be accepting of Teddy and all children with different needs.

And I couldn't be more proud of AJ. He loves his brother fiercely and advocates for him, even though he doesn't know that word ... yet.