May 15-June 15 is Tourette Syndrome Awareness Month

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Please join Teens4TS, the New Jersey Center for Tourette Syndrome, the Tourette Syndrome Association and the hundreds of thousands of Americans with TS in celebrating Tourette Syndrome Awareness Month, May 15 to June 15.

Tourette Syndrome is a misdiagnosed, misunderstood neurological disorder that affects 1 in 100 people, especially teenagers. Marked by involuntary body movements and vocal sounds called tics, Tourette Syndrome affects more than 200,000 American families. Also affecting those families are the many associated conditions such as OCD, ADD, ADHD and anxiety.

So take a moment today, or at any time during this month, to show your support for those who have Tourette. There are scores of different ways to do that. Here are a few:

  • Leave a comment on one of these blog entries. The people that write them would love to talk with you about Tourette Syndrome.
  • Head to the New Jersey Center for Tourette Syndrome website and check out the myriad programs and services offered for those with TS — not just in New Jersey, but around the United States and world, too.
  • Go to POPVOX and check out the pending TS legislations — H.R. 3760 and S. 2321 — and show your support for them by leaving a comment, which will be sent directly to your U.S. Congressman.
  • Head to the Definite Possibilities website, started by a teen with TS, and buy a Tourette Syndrome pin for just $6.
  • Want to take part in this blog personally? Send an e-mail to teens@njcts.org and ask to be a blog contributor.
  • Head over to the Teens4TS Facebook page and give us a “like.” Or, wander on over to our Twitter page and “follow” us.
  • Lastly, leave a comment on THIS blog entry and tell us about how Tourette Syndrome has impacted your life. We would love to hear your story.

My poetry: A trip down memory lane, part 3

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“There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered.”
~Nelson Mandela

I’ve decided to post a collection of all my poetry from Twitch and Jerk. I am starting at the beginning from when I founded TaJ. Here they are, in three parts. The first part is from the beginning through June 2011. The second part is July-December 2011. And the third part is January 2012 through now. I hope you enjoy them. :)

January 11, 2012:

I step outside into the rushing wind. The pouring rain. The moisture in the air. The cloudy skies. The waving trees. Leaves falling. Feeling the drops of water fall onto my skin, seeping into my soul. I feel cleansed. I feel free. My worries are gone. Even if they come back after a moment, that moment was worth it. Breath in the crisp air. Smell of wet grass and damp wood. Tics are flying out, freeing my body from the ache to let them out. I am myself again. I am refreshed once more.

January 19, 2012:

Dawn. Where the sun’s rays pour into the sky, the ground. The smell of dew on fresh leaves. The cool, settled air resting on my face. Close my eyes. Take a deep breath in. The sun rises like bread in the oven. Red to orange to pink to yellow. The trees’ colors brighten. The birds chirp their sweet song of, “Good Morning!” A feeling of reassurance that the world is okay, that we all are okay. This is what happens when I start to doubt myself. Belief comes flying back. The morning is my confidence, rising like the sun

January 22, 2012:

Memories, my memories. How sour they were. How my heart broke when I was laughed at. How I was a monster for a while. How I was horrified, vulnerable, feeling broken about my disorder. How sweet my memories became. My life was changed. My heart mending, slowly. Used to the pain, annoyance, staring, giggles, scorns, whispers. Learning to smile. Learning to fight. Learning to love who I am. And I do. I am proud. I am weird, different. That’s what makes this world go round. Continue reading →

Teens4TS exists because of conversations like this

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The following conversation took place the other day on the Teens4TS Facebook page. One of our newest bloggers, RoxanneSix, introduced herself this way:

“Hey, I’m 15 and I’ve had Tourette since I was nearly 2 or 3. I got paralyzed, and the docs said I would never walk again, but I did, and something didn’t work out, and I developed Tourette. I’m the first one in my family history to have it, but I’m proud of it because it makes me unique.”

Then after a series of piercing, unacceptable bullying by two users that had to be blocked and their comments removed, an exchange between our new Facebook moderator, RuthieP; Roxanne; and several other Facebook users took place. Here is how it went down:

RuthieP: “If you cannot respect people with Tourette’s, I will ask you to leave this page and stop commenting if you can’t contain your rude comments. I have had Tourette’s all of my life and I know more about the condition than most adults. I can tell you both, with 100% certainty, that EVERY case of Tourette’s is different. Some people have little control over their tics, and you will see them tic a good majority of the time, while other people have found a lot of control and can hold back their tics almost all day until they can get home to let out their tics. For some people, you would never know they have Tourette’s unless they told you.” Continue reading →

Not one person with Tourette Syndrome is the same

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Hi, my name is Jaden. I am 9. I actually want people to know what Tourette Syndrome is so they can accept me for who I am. I want to become a blogger so other people can understand what it’s like to have TS and share my experience.

It is actually pretty cool to have TS because it sets you apart from other people, and no one is the same.  My mom told me a couple months ago I had TS.  Throughout my whole kindergarten, first-grade and second-grade experience, I noticed that I had to make one or two letter sounds consecutively.

I also have OCD. I have to have certain things or know certain things. I must have cereal in MY cereal bowl; if not, I feel I’m not having actual cereal. It feels unnatural to me.  Whenever I go somewhere, I must know where I’m going, why I’m going and how long will I be there.  I must have the TV on at night, if not I get freaked out.

Marc Elliot’s book “What Makes You Tic?” has changed my life

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I just finished Marc Elliot’s book “What Makes You Tic?” and I absolutely loved it! I recommend that anyone with Tourette Syndrome read it, and I also recommend it in general for anyone out there — no matter what their challenges might be. And I say this because everyone has challenges.

You might have Tourette or OCD; you might have a child with these disorders; you might be deaf or hard of hearing; or you might think you are too skinny or too fat. Or you might just be too judgmental or have a short temper. Whatever you challenges, big or small, noticeable or hidden, you need to read this book!

Marc’s message truly has changed my life and the way I think about not only myself and my TS, but it also changed the way I think about every other person around me. “Live and Let Live” is a message everyone should hear, and it is a message I have been trying to live by ever since I heard Marc’s speech for the first time back in September.

Here is a 10-minute YouTube documentary about Marc, and here is where you can buy his book.

Don’t let Tourette cause you to not take pride in who you are!

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I’ve had Tourette Syndrome since I was nearly 2 or 3, and I got TS because I had meningitis, from which I later got paralyzed. The doctors told me I would never walk again, but my mum wasn’t about to give up, so she eventually got me walking again. But I developed TS because something never healed in me, and I also have trouble feeling hotness and coldness in my finger tips.

I also have OCD. At school, people look at me like I’m a normal girl, but if I told them I had TS, they would start saying I didn’t, start calling me a liar and start bullying me because of it. At school, I can calm my Tourette down, and it rarley happens at school, but it’s a lot worse when I get home because I had to hold it in even thought I know I shouldn’t.

At the end of the day, if you have Tourette you should be proud of it because it makes you unique!