Tonight, Ray asked me if he could talk to his class about his Tourette’s. Let me say that again- MY son, my relatively happy-go-lucky, HATES attention, son who is now grappling with what Tourette’s means, wants to step in front of his class and speak up about it. I almost cried, but very casually said “Sure- Let’s see what we can do”.
He has had Tourette’s symptoms for several years now, but it’s been relatively minor. Some eye blinks, some neck rolls and one particularly wild spring when he was almost seizing. But the other kids were little, he didn’t care, no one seemed to mind, and it went by with only some panic from me. Since then, it’s been hardly noticeable. Until now.
Now he’s grimacing his mouth and drawing it back over his teeth. Now, he’s stretching his head waaaay back. Now, he’s opening his eyes VERY wide. Now, he’s making swallowing grunts every 5 seconds. Now, he’s spitting. Now, people are noticing.
Now he’s seven. Now, he’s figuring out that there is a”normal” behavior. Now, kids are asking questions. Now, others are starting to say “Why are you doing that?”, and “Stop that!”. Today, he was told “You’re weird” for the first time.
Today, he asked me about it. Today, we went on the Internet to find out kid-friendly information. Today, he learned some retorts. He learned that he can say “No, I can’t stop it, just like I can’t stop a sneeze.” And today, he watched another kid speak to that class about what Tourette’s is, in the wonderful video “I have Tourette’s but Tourette’s doesn’t have me”.
“I want to do that, Mommy,” he told me.
“What? You want to talk to the class? Do you want me to help?” I offered.
“Yes. But I want to do it… maybe next month. In third grade.. Soon,” he said.
I’m not going to push himinto it, but today- he learned about what he has.
We stayed up late to watch most of the Lifetime movie that someone recorded and posted on Youtube in 10 minute clips called “Front of the Class” by Brad Cohen. He watched another person who moved like he did and who grunted like he did. I could see him trying on the issues that Brad and other Internet posters described…. I could almost see his mind trying it so much of it for size. “Is this MY future? Is this what I’ll be doing/feeling/acting like?” More disturbingly, I watched him trying on the actions of the others- he practiced a bark, he practiced a few head shakes- seeing if their motions could ease the “itch” he feels. The “itch” that can only be soothed by gulping, by grimacing, by rolling his eyes.
Today- I worried that Ray has new role models for Tourette’s. I tried to focus on the idea that he has Tourette’s, but that Tourette’s is not who he is. I tried to provide information without overwhelming him. I tried to show him how Tourette’s comes in many different varieties. I tried to act matter-of-fact, and not let him see me grieve. I tried to give him tools to handle bullies. I tried to empower him without taking over.
I am trying not to focus on me. I am trying not to wail and scream that we just got through autism; that we just got to a place where it was workable- we have a handle on my daughter’s issues and can appreciate her strengths and challenges. I just wrote a book about it that helped me put things into perspective, and will hopefully, help fellow parents. I’m currently working on a Teachers’ Guide to help educators as well. I am ready to be past crisis and into activism. I am ready to turn around to others and say “Here- this is what we did/what we learned. I can help you”. I am not ready to take on another issue, to learn a whole new set of lingo, a whole new set of professionals, a whole new set of worries. I am trying not to feel sorry for myself. I am trying very hard not to grieve that my beautiful golden baby boy has… this.
I’m not sure I succeeded at any of this, but I was extremely conscious of walking into a very new landscape. Today was a big day…