In my son’s brain are lots of neurons and electrons, doing their thing. For children with Tourette Syndrome, like my son, the messages sent to his body can say some pretty funky things. Instead of pay attention in class, those messages might say hum with a squeaky noise, or make an odd smile with your lips. Sometimes those messages can remember something someone else said, and they make my son repeat it over and over. This is his life. This is his world. I can imagine it, and empathize with him, but I will never be able to truly understand.
Last week, he had that humming and squeaking tic. It lasted for three days- morning, noon and night. By the end of the 2nd night, we were hanging out, and he started screaming. He couldn’t stand the tic anymore and he wanted it gone. But this reaction made it worse. Sometimes the more you try to stop it, the worse it gets. He started to bang his head with his hand, as if he could just knock it out of his head. It was one of the darker moments I’ve seen where a tic just completely took over and rendered him in absolute helplessness. Eventually he fell asleep and I said a prayer for my little warrior. I would trade places with him in a heartbeat if I could.
Tourette Syndrome (TS) is not a common disability. If there is more than one person in a school with it, that’s a lot. It is very difficult for someone who doesn’t live with it to understand. I’ve heard a lot of folks say “I understand, I had a child with ADHD.” While I appreciate the sympathy, it is very disconcerting. For comparisons sake, it would be like telling someone in a wheelchair “I understand, I had a sprained ankle once.” I’m not saying this to be offensive, but it needs to be said.
My son is beginning to advocate for himself, but he is at the very beginning. He doesn’t know all the right ways to do this without offending others. It’s a steep learning curve. I feel comfortable he will get there eventually. But in the meantime, I have to understand that he needs me more than ever. To help teach him the right paths to take. Sometime I feel like it’s a lesson in futility, but then he takes my advice on something and tries it out, and it works. These are the small victories that I will take any day of the week.
The good days are great, but the bad days can be really bad. Any parent with a TS child knows this. The best we can do is love our child even more, and be there when they need that hug or a listening ear. I’m looking at my child now, and I am filled with such a sense of gratitude that right now, he is content with the world. That can change in a minute, an hour, or any time. The trick for him will be learning how to deal with this invisible enemy. To suppress or not suppress is the question he deals with daily. Most times he couldn’t suppress them even if he wanted to. But he is my son, and I love him no matter what.
This is who he is- a ten year old boy with his whole life ahead of him. He has some stumbling blocks most kids don’t have. But he also has a compassion inside of him, and he feels things so deeply. He’s an amazing kid, and I think the best thing I can do is not worry so much and stop trying to fix everything for him. I ponder on the what ifs way too often. My biggest wish is for people to see him like I see him. But he’s still not taking the Smarter Balanced Assessment!