My son Silas is ten years old. He has been ticcing since he was four. This is what he has to say about Tourette Syndrome, as dictated to me.
When I don’t take my medicine, it feels like I can’t control my body. I get mad easily, and I don’t have a lot of self-control. My body feels energetic or hyper, constantly moving. I feel like I wouldn’t be able to really be around people because I feel like I’m going crazy. My body moves without me controlling it.
I can’t really remember a time before tics.
Sometimes when something isn’t that big a deal to other people, Tourette’s makes me feel like it is a big deal to me. Like if my brother accidentally bumps into me or accidentally kills me on a video game, then it is a big deal to me and I feel almost out of control of my anger. My medicine helps me have more self-control.
Some of my tics are clicking with my mouth, stomping my feet, shaking my head, flapping my arms, drumming with my fingers, bending my knees. If I’m walking and one foot goes left a little bit, then I have to go left with the other foot and then go straight.
At school, tics sometimes distract me. I might put the wrong answer down. Or I get stressed out about how long a test is and I just kind of freeze up. I need my teacher to break up a big long test into small parts.
Before, I’ve had to check math work over and over and see if it’s the right answer. I would be afraid I didn’t do it right, so I’d check it again and again and again. Or sometimes if I’m pressured and have only a certain amount of time, it stalls me up and I can’t do as good a job as if I have as much time as I think I need.
Sometimes I try to hold in noises I have to make or tapping my feet or something, because I don’t want to disrupt my classmates. That distracts me from doing my work.
Tourette Syndrome is a very difficult thing to have. It distracts you from doing things you’re focusing on. Sometimes when you lose self-control, you regret what you do or how you act. I need patience and encouragement from other people so I can do the things I need to do. I need teachers to chunk my tests or help me stay focused so I can do my work.
Nobody has ever made fun of me or tried to act weird to make me feel bad. Only once or twice in school someone said, “Can you stop?” so I tried to stop ticcing.
Tourette’s isn’t all I’m about. I have other abilities. I don’t have to keep thinking about Tourette’s all the time. I’m a normal kid. I do what everybody else does. I play sports during recess just like everyone else. I play video games. I play soccer. I’m going to be on a traveling soccer team in the fall. So Tourette’s doesn’t get in the way of things I do in life.
Tomorrow, in the final post, Part 5, I will share how I’m equipping Rachel and Silas to be successful in school, advocate for themselves and educate others about Tourette’s.