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Tourette? Is it a big deal or not?

camden-alexander

As I write this I’m in seventh grade. I’m in a local rock band and I play electric guitar. I’ve been playing since I was nine and by now I’m pretty good. I like to play music like Green Day and The Offspring, other times classic rock like Led Zeppelin. I’ve been lucky and get to play on stage in front of people. Some people who have seen me play think it’s a big deal to play lead guitar on stage. I don’t think it is. I was given a guitar, I’ve had great teachers and I’m blessed to play with other kids who are experienced. If everyone had those opportunities they’d be on stage too.

I like to be on stage in other ways. I’ve played roles in plays such as You’re a Good Man Charlie Brown, Wiley and the Hairy Man, and Hamlet. It’s a blast! I’m not doing it this year, but for a while I danced in a breakdancing company. I love the shows and being on stage. Some people say they could never go on stage, they’d get nervous and have an anxiety meltdown. That would have been me too except I was given early stage opportunities. The summer before first grade my parents had me read at a Toastmasters Club in front of a few adults. In 1st grade I spoke in front of a wedding. In 2nd grade they asked me to talk about Tourette syndrome – which I have – for a teacher in-service training. I was nervous each time, but each experience prepared me for the next and now speaking in front of crowds is second nature. A big deal? Not now. If I hadn’t had those experiences, you’d better believe it would be a big deal.

I have Tourette syndrome. I’ve never been bullied because of it. I have been bullied though. Back in the first grade a couple of kids in my neighborhood used to mess with me, just in general, no real reason, but they bullied me pretty good. My Dad helped me understand why and how people bully others, and how to safely respond and how to turn the tables, and even turn bullies into non bullies and friends. By 2nd grade, and for a few more years, my Tourette was bad...really bad! However, by this point in my life, I had mastered the art of bully prevention so I wasn’t bullied. Because of that, even when Tourette was really bad my school life was good. If I had not been taught how to avoid being bullied, I would have been doomed.

This is my first year of middle school. In my town it starts in 7th grade. I’m in advanced classes and I’m friends with most everyone and my report cards have been good. I’ve had nearly all As so far this year! That doesn’t sound like that big of a deal but if you go back in time, it definitely is.

In first grade my Tourette was so bad I was kicked out of my Montessori school with 12 hours’ notice. I had screaming tics and falling on the ground tics and I couldn’t write a sentence without having a meltdown. It was hard to do what I was supposed to even though I so badly wanted to do the right thing. Each school year after that though, from second grade on, I got the support I needed. I got a strong IEP and went to schools with great teachers and special education Teams. My parents were able to set up situations in school and out, where people began to understand Tourette, and me.

I know a lot of kids with Tourette have it hard. I know for a lot of kids, Tourette is a big deal. A big deal in a bad way. One thing that made it better for me was this program called the Youth Ambassador program. It’s sponsored by the Tourette Association of America and it trains kids ages 12 – 17 to put on presentations about Tourette to other kids. Youth Ambassadors go to schools and present. I had a couple of Youth Ambassadors come to my school. They’d lived Tourette and could talk about it. I got to speak with them on stage at my school when I was younger, and It made a huge difference. Teachers who heard the presentation learned a bit more and cut me some slack. Kids didn’t think I was weird because now they understood why I was doing the things I did.

Is Tourette a big deal or not?

If I wasn’t given a guitar and provided guitar teachers, I couldn’t play lead today. If I wasn’t given experience on stage I’d have stage fright. If I wasn’t provided strong support for my Tourette, my Tourette would be a giant, enormous, massive deal and my life would be a train wreck.

Is Tourette a big deal or not? It can go either way.  It all depends on the support kids get.

Camden Alexander, age 13, is a student in Marblehead, Massachusetts. Camden is a former resident of Hudson, New Hampshire, and still has great affection for his former school, Hills Garrison Elementary, and the amazing teachers that supported him even when his Tourette was, “really bad”. As well, Camden and his family gratefully thank the Parent Information Center of NH for their support over the years. Camden and his family participated in many PIC training, workshops and conferences, all of which contribute to Cam’s ongoing success.

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