My Youth Advocate speech

Hi everyone! I just wanted to drop by to post my speech from Sunday’s NJ Walks For TS at Ramapo College! It was an amazing time! I was delivering a speech there because I was being honored as the New Jersey Center for Tourette Syndrome‘s Youth Advocate of the Year. I am so honored! So here is my speech. It pretty much says it all:

Good afternoon everyone, and on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders, I want to welcome you to the NJ Walks For TS at Ramapo College! Thank you for coming out to the walk today! Your support for TS is amazing and appreciated!

I want to thank NJCTS very, very much for honoring me with this very prestigious award. I am flattered and thrilled beyond words. Now, I want to tell you a little about my experience with TS and how I ended up here today.

I was diagnosed with Tourette Syndrome and Obsessive Compulsive Disorder when I was 6 years old.  As I got older, I tried to control my “tics” because I was embarrassed and afraid someone would make fun of me. I would try to hold my tics in all day long while at school and couldn’t wait till I got home so I could tick all I wanted.  Similarly, I rarely went on playdates after school because I wanted to go home so I could tic, and I never went on sleepovers because of the same reasons.

I continued to try to hide the “real me” until my freshman year in high school, when my doctor suggested I tell a few close friends about my TS and OCD. She related it to diabetes – a problem that you cannot control. I was hesitant about the idea and not convinced that it was okay, normal, cool, or any combination of those words to have Tourette Syndrome — until my mother and I came across the New Jersey Center for Tourette Syndrome website.

Two weeks after the discovery of NJCTS, I told my two best friends about my TS and OCD and my tics. They were wonderful and understanding. It became so much easier to relax with them, since I did not have to worry about hiding my tics. I even slept at one of their houses that night!

In April of 2010, my life really changed forever for the better! I was selected to represent NJCTS at the national Youth Ambassador training in Washington, DC. There I met other teenagers with TS, and from then I understood that I was not alone and that I was really OK.

After training, I began speaking with students and teachers on a regular basis at schools about TS — a disorder that affects 1 in 100 people. I would explain what TS is and why you should not bully a person with TS or with any disorder that they cannot control. To reach an even wider audience, I wrote, illustrated, and published the children’s book, Emily’s Tic. This book depicts the pain and fears of children afflicted with Tourette Syndrome.

The sour diagnosis of Tourette Syndrome, has turned into a sweet experience, helping me to become the person I am today. It was truly a turning lemons into lemonade moment- when I found the New Jersey Center for Tourette Syndrome. NJCTS and its staff and programs and participants have given me the courage to be ME!

Because of what I learned through NJCTS, I now know, and you should know too, that it is OK to have TS, we did nothing wrong to get it, we are not ashamed of who we are, we are just like everyone else, and no one is going to bully us!!!

With the support of NJCTS, I have come clean and will tell anyone and everyone that I have TS! And I will openly discuss my experiences — especially in the hopes that I can help someone else who has TS or any other disorder be proud of who they are.

So….. thank you NJCTS, thank you Faith Rice for being the backbone, Marty Butterfield for getting me started in this incredible program, thank you Jeff Weber and Melissa Fowler.

Thank you Mom, Dad, and brother Alex for your continuous support and love, and for driving me back and forth to doctors and other appointments, and meeting with my teachers when necessary, and driving me to NJCTS and schools so I could advocate and for your patience and advice.

I would not be the TS advocate I am today if it weren’t for NJCTS. Thank you again for helping me become the person I am. Everyone here, thank you for supporting NJCTS.  Let’s hope that no one else with TS will ever again feel ashamed or hide who they are because of this disorder. All teenagers please reach out to NJCTS and explore their leadership program! We are always looking for Youth Ambassadors to speak about TS and bullying. The experience is life-changing!

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