Teens: What do you think about the mystery NY Tourette Syndrome cases?

By now, many of you likely have heard about the case of the now more than two dozen LeRoy, N.Y., students who developed Tourette Syndrome-like symptoms and tics in December. Various news reports, medical claims and reports by experts since have been all over the Internet.

There are many different theories out there about what exactly contributed to the onset of these TS-like symptoms, but according to Wikipedia, the school was tested for toxins and all other factors for their symptoms were ruled out, the students were diagnosed with a “mass psychogenic illness” resulting from stress.

What we at Teens4TS want to know is this: What do you think of this entire case? Does it help or hurt Tourette Syndrome advocacy? If you or someone you know has TS, how does this entire case make you feel? Do you agree with the ultimate diagnosis of these students? Do you think they are faking? What is your opinion about some of the things said by the doctors and experts in this case?

Several parents from all over the country already have weighed in with their thoughts, which you can check out on the TSParentsOnline blog. We would love to hear your opinion, too, and you can let your voice be known about this very important, trending topic in one or more of several ways: Continue reading

Stressing over school and medication

“If there is no struggle, there is no progress.”

~ Frederick Douglass

Hello everyone! This my first real post. I’m so excited to be a part of this blog. So, this past week has been extra stressful for me. School has been a drag. Since I am home-schooled online, I have to talk to my teachers over the phone. We have these assignments called DBA’s (Discussion-Based Assessments). The teachers talk to you about the material that you learned and ask you questions.

I am always nervous because of my social anxiety. If I have to talk to a male teacher, then my nerves are higher. I have two DBA’s to get done before midnight tonight. For a while now, when I got really agitated or extremely nervous, my tics were very strong. When I’m not feeling that way, they only come up once in a while.

Also, math is my worst subject. I am learning Geometry this year, and it has been a pain in the neck for months now. But, I will make it through. If I could get through Algebra 1 with a lot of struggling, I can do this. Continue reading

New term, new me, same school

I just started going back to school after being homeschooled for about four months, and I am loving every minute of it. I get really tired by the end of the day sometimes, but I am so grateful to be back.

But with coming back, there still are the challenges of teasing and bullies. But you know what, I’m OK with people talking behind my back. I’m OK with kids laughing and mocking me. No, it’s not anywhere near as bad as it was four months ago, but even if it goes back to that level, I truly don’t care.

It has taken me so long to figure out that it doesn’t matter what people think. People make fun of me, but the majority of people that I know don’t. If you are feeling like everyone doesn’t want to accept you, make some friends. Go out and do something. But don’t feel bad for yourself, because the more you feel that way, the more it’s going to pull you down.

I would like to express my appreciation to everyone who has helped me get back to school. But most of all, I am thankful to my mom and dad for their support through all of this. Continue reading

Switch to homeschooling saved AND enhanced my life

I remember it being a Friday when my mom pulled me out of school for good. I never knew I would be homeschooled. I used to make fun of it, but it essentially saved my life. All of my teachers are have been kind and supportive so far. They care about me and they make sure I am successful when it comes to education. I have learned more than I ever have, and I even have made new friends. 

The advantage to it is that I can keep my sanity and not be made fun of. The disadvantage is that I don’t go out very much, and my social anxiety worsens. But I have been working on that, and I am a lot better at talking to people than I used to be. I would deal with a vicious cycle in the outside world. My normal nerves would make my social anxiety worse, making my tics higher, making my nerves worse, and so forth. 

At 14 years old, I decided I wanted to make a page on Facebook. At first, I didn’t know what my page would be about. I ticked, and then the Tourette’s Syndrome idea happened. I decided I would make a Tourette’s page. Then, I had to figure out what to name it. I couldn’t think of anything until my second mom gave me the idea of the title sounding like a tic. Continue reading

Tourette's gets tougher when even teachers poke fun

My name is Rowena, and I was diagnosed with Tourette Syndrome at 11 years old. I was in sixth grade when it happened. Before 11 years old, I was making weird movements and sounds, such as tapping and humming.

I went, and am still going to, Rothman Center in St. Petersburg. The first appointment took six hours until we were finally done. My doctors are amazing and have helped me so much the past five years. I went to West Hernando Christian school when I was diagnosed.

My sixth-grade teacher was very judgmental and disrespectful toward me. I didn’t know why she was acting this way. It was as if she was a completely different person. But one day she asked my mom if they could talk privately.

After they talked, my mom came out of the classroom and rushed me to the car. I asked her what happened. She told me that my teacher thought that I was lying about my Tourette’s. Of course, mom was very angry, and so was I.  Continue reading

Attention bullies: People with Tourette are NOT different

My name is Ashley Craig, I am 15 years old and I live in New Jersey. The past two years have been very busy for me. From May of my eighth-grade year to now I have been dreaming up, designing, implementing and facilitating my own anti-bullying campaign.

My campaign, also known as S.A.B.B. – Students Against Being Bullied – consists of three phases:

  1. Student Involvement
  2. Spreading Awareness
  3. Parent Involvement

Student Involvement includes two text lines, bi-monthly afterschool meetings and safe rooms. Spreading Awareness consists of spreading the word. In this phase, I also have designed systems to help further inform repeat offenders that their actions no longer will be tolerated and systems to help victims cope while putting more eyes on the situation.

I started this because in seventh grade I was bullied by five older boys. The tormenting went on for about four months before I couldn’t take it anymore, and during the summer before my eighth grade year, I started to think of what I could do to make a difference. But it wasn’t until May 2010 that I really started dreaming up S.A.B.B. Continue reading

Anonymous poem "Nobody Knows" as real today as it was in 1989

Following is a beautiful piece of poetry that was anonymously submitted to the New Jersey Center for Tourette Syndrome. The author wrote it in 1989, when they were a teenager with TS.

Nobody seems to ever understand,

the painful things I feel.

Nobody knows what’s inside my head,

or ever if it’s real.

Nobody knows what it feels like,

to constantly feel confused.

Nobody knows how sad I feel,

when I feel that I’m being used.

Nobody knows what it feels like,

to be afraid to go to sleep.

The far of never waking up again,

the fear of sinking so deep.

Maybe someday they’ll find the key,

that unlocks the mystery of my mind.

From that day on I’ll finally be free,

and happiness will be mine.

But until that day, nobody knows,

the feeling of being me.

Maybe they’re not looking had enough,

maybe they just can’t see.

Poetry has become a big part of the Teens4TS blog. You can read other poems from teens with Tourette Syndrome by clicking here.

Back at Montclair with a message of hope

Hey guys, I’m back at Montclair! It was a rough day with homesickness and OCD, but I pulled through it with the love of great friends and family members! It’s so crazy being back here. I haven’t been here since 3 1/2 weeks ago.

I met with some friends for dinner to celebrate my birthday, which was on the 14th, and spent some time with some other friends while back at my dorm later on in the night. Honestly, it is so great to be back. I was afraid I would want to drop out because of the homesickness, but I’m feeling better and know I’m gonna stick it through this semester. It is going to be better then lasts, I can just feel it!

I just want you guys to know, you can do anything you set your mind to. It might be hard now, but you’ll get through it. I have a great friend who always tells me, “God has great plans for you — I know it.”

And she’s right. Just because I wasn’t dealt the best deck of cards doesn’t mean that I can’t play them to the best of my ability! God has a plan for all of you guys, too, and I know it’s a good one. Just keep staying strong, and remember — God doesn’t give the good to the ones who deserve it until they have fought long and hard for it.

Missed Katie’s Teens4TS blog entry from earlier today? You can read it here!

Inspirational Tourette story from Tae Kwon Do

So the other day was my second time at Tae Kwon Do. It was a lot of fun and I learned so much! It is helping my a lot with my OCD. My instructor told me such an inspirational story about a boy who had Tourette’s who went there. He had said that the young boy’s Tourette’s was pretty bad.

They used to do what I guess you would call “exercises,” and he used to have a hard time doing them. He used to just fall to the ground as he ticked. At the beginning, he would not be able to stand still during one of the drills in which they had to — you guessed it — try to stand still for a while.

At first, he wasn’t able stand still for more then a few seconds, but toward the end, he was able to beat everyone and stand still the longest. All the kids in the class would moan and be like, “Awww, he won again!”

I found that story to be so cool and inspirational — that he could overcome his Tourette’s and be able beat everyone in the class was just awesome!

Distractions: A different side of Tourette's

Hi everyone, I went to see my psychiatrist the other day, and I talked to her about how I happen to forget things a lot. I wanted to know if it was from one of the medicines I’m taking. It turns out that it’s just from Tourette’s.

She explained to me that TS basically takes up a part of my brain and makes it so I can’t control it. This apparently takes up a lot of “data usage” in my brain, so I don’t have a lot of space left to remember small things such as phone numbers or adresses.

To show me my small data usage in action, she recited a phone number with a lot of patterned numbers in it. I could recite it back to her pretty easily. But when she told me a phone number that had no patterns or repeated numbers, and told me to repeat it back to her, I couldn’t.

Even though it was just a second later, I didn’t remember the number at all. Then, she told me the number in fragments and had me repeat the fragments back to her. For instance: Continue reading