You can do anything … even drive!

Hi everyone! My name is Emma, I’m 14 years old, and I have Tourette Syndrome. I can be a bit of a worrier since I also have Anxiety Disorder. I have pondered many things and also worried about many things in my life. I’m really anxious about the things I can and cannot do.

I always try really hard to do the things my brain tells me I can’t do. One of the things I’m not sure I’ll be able to do with Tourettes is drive. This worries me a lot since I am going to start Driver’s Ed in March.

What if I get one of those old, crabby teachers and they don’t have any patience with me to start with? What will I do if I have to tic? I have to be in the car for at least two hours! Those Driver Ed cars are kind of small. Will I have any leg room?

When I have to drive in the car, and I have to straighten my legs, what will I do? Floor it? What about when I need to squat? Take my feet off the pedals? When I need to blink real hard? Not look at the road? When I have to scrunch up my arms? To clap? To rub my wrists together? Will I just take my hands off the wheel? Continue reading

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. Continue reading

Inside a Tourette Syndrome presentation to students

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

Here’s a look at some of the power-point slides I put together for my presentation to the students at Roosevelt School in River Edge. It was a lot of work but a lot of fun to do this. I am so glad it was received as well as it was! At the bottom, you will find a collage of famous people, some of whom have been my role models, who have Tourette Syndrome. Enjoy!

Continue reading

Answering questions about Tourette Syndrome can be fun

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

I had the privilege the other day of getting to talk to fifth- and sixth-graders at the Roosevelt School in River Edge about Tourette Syndrome. They were really attentive, great kids who asked a lot of great questions. They took it really seriously, and that made me very happy.

I just want to get the message out there that people with Tourette Syndrome are normal, shouldn‟t be bullied and should be treated like everyone else. I remember telling them, “Should we ever bully someone? No.”

When I was done with my presentation — I was really nervous, but it went really well — the kids got to ask me questions. Some were fairly simple to answer, while others could have thrown me for a loop. Here are some of them:

  • How old you were you when you first had Tourette Syndrome?
  • Where did you get it from?
  • Have you been made fun of for it? Continue reading

Merry Christmas and Happy Holidays from Teens4TS!

On behalf of the entire staff and network of board members, presenters and volunteers that make the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) what it is, I would like to wish a very Merry Christmas and Happy Holidays to all of the contributors and readers who have helped make the Teens4TS blog a rousing success over the first six-plus weeks of its existence.

We already have received several thousands of page hits from all over the world — England, Belgium, the Netherlands, Canada, Denmark, France, Spain and Indonesia, among others — on our posts and comments. That might not sound like a lot in the grand scheme of things, but for a fairly new blog by an organization our size, it is a tremendous — even positively overwhelming! — response.

In the next few weeks and months, we expect the blog to continue to grow — especially after receiving several submissions from teen authors who already have successful blogs of their own. Be sure to check out our links section and give them a shout-out on their pages!

We would love to double our already sizable contributor list, and all we need to bring that to fruition is to hear from you, the teens! So if you are interested in participating in the Teens4TS blog, please drop us a note today by e-mailing teens@njcts.org.

There’s nothing quite like being part of a community that is doing something big to help others, especially those in the Tourette Syndrome community — for which there just aren’t that many resources outside of the magnificent ones NJCTS provides.

So what are you waiting for? Open up your e-mail browser and drop us a line. We would love to hear from you. And after that, go join your family, open some presents, reflect on what this season means to you and get ready for an even better 2012!

Happy Holidays!

Jeff Weber

Teens4TS Blog Administrator

teens@njcts.org

Tourette's Syndrome: The Wild Tiger Inside of Me

I feel the underside of your black paws

as you find your way through my dark and bloody veins

and as your strong yet wobbly newborn legs

suddenly feel the urge to jolt forward.

I feel how you teethe at my muscles

like the fresh meat of a gazelle,

and how you nudge your head,

forcefully against the inside of

my shoulders, my arms, my neck

until I move,

until I can’t stop.

I feel that desperation with which you wish

for the wind to play gently across your face

and for the metallic nighttime grasses

to sweep against the stripes of your fur.

I feel it every time your paws scrape and pound

against the sides of my body. Continue reading

Missing medication leads to a long outburst of tics

This is the second of two introductory posts from new contributor EmmaO, who has her blog called Life’s A Twitch. We at Teens4TS are excited that Emma will be writing in this space on a regular basis. Enjoy, and be sure to ready her first post if you missed it!

I am extremely grateful that I am heavily medicated for my moderate-severe Tourette’s. I know some kids have families that cannot afford health care or medication. The doctors have said that it would be painful to live a day in my life if I did not take my medication. They aren’t just saying that to make me take pills.

I accidentally left one of my medications in Pennsylvania and did not take it for a few days. I ended up in the emergency room. I wonder what would have happened if I hadn’t taken ALL of my medications for a few days. Well, I’m not going to try that out.

Anyways, I had been doing two specific tics nonstop for about 52 hours straight. One of them was rolling my abs, so at least it was like doing crunches for 52 hours. That gives you some hardcore abs. It was a painful workout, though.

I didn’t even know that I had missed a whole week of school, since I was so drugged up in the hospital. I found out I had missed a week when I got nominated for the “Spotlight on Student” award.

My teacher was giving a speech about me, and at one point said I had missed that long of school and made up all my work. At first, I thought she was exaggerating so that I would have a better chance of winning the larger award, but when I got home, I asked my parents about it. It turns out I really did miss a whole week.

Point is, I know a ton of people have it harder than me. I can barely imagine how life is for them. But I am glad that I am strong enough to persevere through each day. I’m blessed.

Life's A Twitch author takes tics, reactions to them as they come

This is the first of two introductory posts from new contributor EmmaO, who has her blog called Life’s A Twitch. We at Teens4TS are excited that Emma will be writing in this space on a regular basis. Enjoy!

Hey people! I love to sing, dance, act and play the guitar! I have Tourette Syndrome, OCD and Anxiety Disorder. What can I say? I’m in high school. It takes up a lot of time.

Anyways, something just happened. I thought it was slightly funny. A girl I know posted a status with some weird joke I didn’t understand, but it involved Tourette’s. OK, it wasn’t “slightly funny,” it was just that I laughed when she spelled Tourette’s wrong. People always spell it: Turrets. HAHAHA.

Yeah, no. We don’t have some castle turret disorder or anything like that… Turrets… hehe. Anyways, I’ve been pretty stressed and anxious lately. Blah blah blah, the usual. You know, that’s pretty much my daily life. Part of being a teenager… plus someone with Anxiety Disorder.

So, my squatting tic has been on the rise. Or low… Get it? I don’t rise when I squat, I go low. And I said the rise because it’s been worse, but rise means up, and when you squat you don’t go up, and… OK, I think you get it. 😉 Continue reading

College student's 504 plan helped get her through high school

This entry from AlissaJ originally was posted on the TSParentsOnline blog in response to the Finding The Right Balance With School Can Be Stressful entry. Please welcome her to Teens4TS, as she’ll be posting here from now on!

Hi, I’m Alissa and I’m a sophomore in college. I was diagnosed with TS late compared to others (eighth grade). When I first was diagnosed, I was very embarrassed and refused to go to school for a week. By the time I got to high school, school started becoming extremely difficult.

What helped me most was vocalizing. I arranged for a 504, which made me able to have extended time on exams and projects. This helped a lot. I also was able to have many class absences without being penalized so I could stay home on bad tic days. Most schools are able to accommodate you very well. I was also very friendly with the school nurse. She made it easy for me by letting me rest there when I was tired from my tics or if I just needed a break from class.

Lastly, in my high school freshman year English class I wrote a paper about TS and had a friend read it aloud to the class. The paper was then published in the school’s “journal” for anyone to read. This really helped me because I didn’t feel I needed to hide my tics anymore. I hope this helps!! If you need anymore help, you can e-mail me at alissadjuliana@gmail.com.