More education about Tourette Syndrome, anti-bullying is needed

EmilyF was the 2010 National Youth Ambassador from New Jersey for the Tourette Syndrome Association. Here is her third of three posts about her peer-to-peer in-service presentation to elementary school students. You can read the first here and the second here.

I’m a fun-loving teenager. I have Tourette Syndrome, but I don’t let it define my life. I’m a normal person, leading a normal life — I just happen to have TS. That’s one of the things I told the kids when I gave my latest presentation. But it’s not just about that. The main thing I wanted them to take away was to not bully other kids because they are different.

It’s OK to be yourself, and other people should never take that away. I held in my tics so I wouldn’t be bullied. It took me a long time to learn that it’s OK to be different, that people shouldn’t bully you, and that if someone bullies you, they’re not your friend.

It hurts to hold in tics. When I was younger, I suffered from eye-blinking, the need to touch things, throat-clearing and the need to say “I love you mommy” over and over again. Having tics and having to hold them in can be physically painful. When you add someone bullying you, it can make life even worse.

The more children and adults learn about what bullying can actually do to someone, the more it might decrease in schools, homes and other places. Education is key, and that is why I give presentations to schools, girl scout troops and other people.

I learned how to do it from the National Youth Ambassador program and really look up to Jen Zwilling, who was one of the pioneers in this area. My presentation is based a lot off of hers, and I really think people can identify with it. It’s really helpful and fun. 

Families need to get much more education and information. I think more people should visit NJCTS. I didn’t know they had all these programs and retreats until last year. I went to camp for the day last year and got to meet so many other people with Tourette’s. It was nice to interact with them and hear their stories.

Another key to the education is process is having supportive parents. It’s very important to have parents that say, “You need to understand that it’s OK and you didn’t do anything wrong.” You need to have parents that don’t think or say that you’re weird. If I didn’t have that, I’d be really upset and be working so hard to control my tics that I wouldn’t be doing well in school. I’m starting to look at colleges, and I really like Rutgers University. I’ve seen all the Tourette programs they have there, and it’s a great place.

I just hope that this story and the presentations can help get the word out there. The more people know about Tourette and learn to not bully others, the more people with Tourette can lead a normal life like they deserve — just like everyone else.



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