NJ Walks for TS really making a difference all over New Jersey

My name is Sarah. I’m a senior in high school, a Youth Advocate for the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) and Youth Co-Chair of the 5th annual NJ Walks for TS event in Mendham, NJ.

I am writing to urge you, your family and friends to come out and join us when NJ Walks for TS at Mendham on November 15. Click here to register.

All proceeds from this very special event support the NJCTS Education Outreach Program which provides information and training to teachers, doctors and students statewide to ensure greater understanding and acceptance for kids and adults living with Tourette Syndrome.

I have been a part of this program for the past four years and have personally presented a message of acceptance and stigma-conquering facts to well over a thousand school kids, teachers and doctors.

Not only does the program educate professionals but it provides kids like me with an opportunity to develop skills as a public speaker and advocate; and it also strengthens my ability to deal with my own Tourette Syndrome diagnosis.

Parents of kids with TS also present workshops to teachers and doctors and TS experts join our team to present grand rounds at hospitals in every part of New Jersey.

To date, more than 60,000 NJ teachers and doctors have attended our presentations. Please help this program to continue to grow by giving generously to our Walk and throughout the year.

We are happy to provide any additional information on this and other NJCTS program offerings. Thanks for helping us make an enormous difference in the lives of so many kids and families.

See you on November 15 when NJ Walks for TS at Mendham. Here is another way you can participate, too!

Tic-tic BOOM!

Hello all! I’m going to be frank; I’m new to the blog-world. Please forgive me if I sound too formal/don’t sound formal enough/don’t interest you/etc. etc. etc. I’m trying this out, and we’ll have to see if I have ANY skill. Perhaps I’m the next “Reality Steve”. Who knows?

OK. Since I’m aware this is ACTUALLY a wholesome teen blog (by the teens, for the teens) about Tourette Syndrome, I’m going to change topics. Hi! I’m Sarah! *Cue the “Hiiiiiiii Sarahs”* I’m a 17-year-old high school senior. When I was 7, I was diagnosed with Tourette Syndrome in 10 minutes flat. My parents were left with an uncomfortable diagnosis, no direction, and a tic-ing time bomb (see what I did there?). Not knowing what to do, they decided to keep quiet. No one knew about my TS until I hit the third grade. Only then did we realize as a family that silence only led to confusion and misunderstanding.

Since then I’ve been certified as a Youth Ambassador for Tourette Syndrome, and I’ve spent a great amount of time and effort presenting to more than 3,000 children, teachers, and doctors in order to displace the myths and stereotypes associated with this medical condition. It’s been a long ride, but also a great one. Now I’m here.

I sing, dance, act, and play a host of sports. I love long walks on the beach, and I’m a total catch ;) haha. However, jokes aside, I’m a girl who has learned, with a lot of practice, to overcome any obstacle Tourette Syndrome has ever thrown my way. I’m proud to say I can do anything and EVERYTHING I set my mind to, and I live for that challenge. My advice? Show everyone what you can do, and don’t apologize for everything that makes you great—including your TS. It’s a part of you. It’s a part of me. But it ISN’T ME. I’m greater than a diagnosis, stronger than the sum of my parts. I can’t wait to share myself with you.

Tic-tic BOOM!

Things Tim Howard Could Save … the world?

Today I was standing in line to get lunch and was doing a bunch of vocal tics and the person standing in front of me wasn’t reacting a whole bunch, so I thought to myself, “Maybe she knows what Tourette’s is because of Tim Howard. Maybe one day everyone will know what Tourette’s is and people will stop staring at me in public when i’m ticcing.” What a nice thought it was.

Also Tim Howard is becoming an internet sensation!!! #ThingsTimHowardCouldSave is trending right now on Twitter and if he could save your parents divorce and the save the citizens from being eaten by Jaws, maybe just maybe he could save my sanity one of these days!!! Lol, OK maybe i’m being a bit dramatic, stares in public don’t make me loose my sanity completely, but I sure would feel a lot better if people stared less often!

2014 NJCTS Children’s Scholarship Award Essay: “I Have No Regrets”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

When the word “disease” is said, overcoming is definitely not the first thing that comes to peoples’ minds. In my opinion, having Tourette’s is a battle. I have been bullied, ridiculed, and laughed at. I think a lot about the kid I could have become, that is, if I surrendered. But luckily, I didn’t.

I managed to muster the strength and courage to face my problem. In fact, I sometimes convince myself that I no longer have TS. I have accepted the fact that I will never be cured of this. So what does this mean for me? Hide behind excuses for the rest of my life? Succumb to being a nobody? Not anymore.

Ever since I entered high school, I slowly started to see the best out of every situation. I have used my tics to my advantage by channeling my energy into something positive: setting goals and achieving them. Why should I let TS get in the way of challenging myself? I found that I can use this obstacle to my advantage.

When I was in middle school, I definitely didn’t have the same optimism about having TS as I do now. Unfortunately back then, I fell into the trap of self-pity. I would always make excuses for myself. I didn’t challenge myself in school because I thought my mental abilities weren’t sufficient for mainstream classes.

My bizarre motor tics made me feel out of place and ashamed. My fear was that people would make fun of me, especially this one tic in particular (that I still have today) where I tweak my neck to the side to feel temporary relief. If I held my tics in, I felt like exploding. Often times I would tic then nonchalantly try to cover it up by using “normal” gestures, such as cracking my neck.

Once I gained the courage to move into mainstream classes in my last year of middle school, things weren’t as bad as I had anticipated.

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2014 NJCTS Children’s Scholarship Award Essay: “Born to Stand Out”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

At a young age, I was faced with a choice. Let the diagnosis I just received define me, or accept it as part of who I am and embrace life head on. I chose the latter. I was diagnosed with Tourette’s, OCD and ADHD.

When some people hear Tourette’s, they automatically think of society’s inaccurate portrayal of a disorder where people shout out obscenities or inappropriate words. They treat it as a joke, as if people who live with Tourette’s choose to do the things they do, or could stop it if they wanted to. Very few people understand what having Tourette’s is really like.

Over the years, l’ve experienced a wide range of tics. My motor tics included excessive blinking, sniffing, jerking my neck, and popping my shoulder, often making everyday life uncomfortable and awkward. l’ve had vocal tics where I would constantly clear my throat, grun! or make strange noises that would often draw confused and disapproving looks from those around me.

Living with this disorder has been far from easy, fraught with physical pain and many ups and downs. When I was younger and just learning to cope with my Tourette’s, my tics would make it difficult to focus in class. Having an eye blinking tic or neck tic would make it difficult to read. Nevertheless, I pushed myself to make the honor roll every marking period from third grade on.

Whenever the classroom got quiet and the teacher was speaking, I would feel the eyes of my classmates burning deep into the back of my neck. lt was as if they had laser vision, with eyes fixated on me, examining my every move. Regardless of whether anyone was looking or not, I was different, I stood out and thought they were staring at me.

I would try to suppress the tic. But that’s just like trying to stifle a sneeze or resisting scratching an itch. Eventually you just have to do it, just as I do when the urge reaches that point of becoming no longer bearable. With time, therapy, and educating myself on Tourette’s, l’ve learned to adapt to the struggles this disorder entails.

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