2016 NJCTS Youth Scholarship Award Essay: “Thank you, Tourette’s”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

SeanK

SeanK

The piercing frequency of my alarm clock shattered the barrier between an unconscious dream of mine and the cruel reality of Monday morning. With eyes half open and hair protruding in all directions, I made my way to the shower. As I flicked the light switch on in the bathroom, I stared at the mirror long enough to witness myself clench my left arm, throw my right arm to my side, and make a faint noise in my throat. Following these tics, I exposed to my mirror a gigantic smile; today was going to be a good day.

I have Tourette’s, and although it’s contrary to the above paragraph, I didn’t always embrace my tics. Learning to live with, accept, and at times even love my Tourette’s was a long, hard journey. I wouldn’t say I was ever depressed, though I was often frustrated. Not only was I dealing with the physical effects of Tourette’s, but also the psychological aspect. Any time I twitched, clenched my jaw, or made any faint noise in my throat, I felt anything but normal. Though the truth was that I was a teenager and with this title came normal teenager worries such as insecurity. Whenever someone asked me why I continuously did some movement with my body, I’d make up some stupid excuse then quickly change the subject. Though, it wasn’t until the summer of my junior year that everything changed for the better.

As the school year ended and summer got closer, I started to prepare my trek to Hardwick New Jersey where my friends and I decided to kick off our summer by volunteering as camp counselors at a Muscular Dystrophy Camp. The format of the camp is that each volunteer gets assigned a kid diagnosed with some form of muscular dystrophy, and we spend the week doing everything in our power to make it the best week of their lives. My camper’s name was Ethan, and although he was a little shy at first, we left the camp best of friends and even keep in touch to this day. From the beginning of camp, I sensed that Ethan’s muscular dystrophy, much like my Tourette’s, had him dealing with psychological effects. I did all I could to make him feel like he could talk to me about anything; that I would hear him out and be there for him.

One particular day Ethan was feeling especially frustrated due to the amount of medicine he had to take at breakfast and I immediately sensed this. After about ten minutes of silence, I said “Man I hate taking medicine everyday it’s so annoying.” I saw Ethan’s head perk up, and we had one of the most moving talks I’ve ever been a part of. I told Ethan about my Tourette’s and how everyone has something in their life that they struggle with; I told him it’s what makes us unique. I told him to never be ashamed of what makes you different because the toughest battles are given to the strongest soldiers. I didn’t know where my words were coming from, but I knew they were helping and that they were true. I didn’t sleep much that night, but rather stayed awake all night thinking about what I had said. I realized how much I needed to take my own advice, and vowed from that night on that I would no longer hide my insecurities but rather embrace them.

It was the camp that catalyzed this realization, but it was my Tourette’s that was trying to teach me this lesson all along. So, how has Tourette’s played a part in my life? It’s made me realize that it’s ok to be different and that instead of hiding our insecurities we should embrace them as things that make us wonderfully unique. Everyone has their insecurities, but the way that I now see it is that we can either let them rule our lives or we can embrace them and learn to love ourselves. Although it might sound odd, I am forever grateful for my Tourette’s; it has taught me to love and accept myself for who I am, and this lesson is priceless.

Hillsdale Teen Inspires his Community to Tackle Tourette Syndrome

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette's walk on May 22, 2016.

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette’s walk.

Mike Hayden is taking his Tourette Syndrome advocacy efforts to the next level.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Hayden, now 16-years-old, was diagnosed with TS in fourth grade although he started showing symptoms in kindergarten. In 2012, he decided that he wasn’t going to let his diagnosis hold him back so he stepped up to become a Youth Advocate for the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

NJCTS Youth Advocates lead presentations about TS in schools and community groups to raise awareness, promote understanding and tolerance, and deliver a strong anti-bullying message. They also present with NJCTS-partner doctors at hospitals to educate medical professionals about TS.

When it was time for Hayden’s honors English class at Pascack Valley High School to choose an issue to which to bring attention for their final project, Hayden shared his personal journey with TS and the class was instantly inspired. They organized the group “Teens Tackle Tourette’s” and spent the school year organizing, promoting, and producing a fundraising walk.

“It was an incredible feeling to know that my class truly cared about this cause,” said Hayden. “They knew it was close to my heart and I had many people tell me that there was no question in their mind that this is the cause they wanted to support. It is amazing that they would support me in raising awareness for this issue that many people are incorrectly educated on.”

Hayden recalled that when his family needed help after he received his TS diagnosis they called NJCTS for education and support. To better educate his classmates, he decided to partner with NJCTS Education Outreach Coordinator Gina Maria Jones and Executive Director Faith Rice for a series of in-class presentations about Tourette Syndrome and associated disorders.

“I figured that if we were going to learn about TS, we might as well get the experts in to help teach us,” said Hayden on reaching out to NJCTS for guidance. “I have had many years of experience with NJCTS, so I know that they are truly the best of the best when it comes to education and outreach.”

The Teens Tackle Tourette’s T3 walk took place on May 22 at the Pascack Valley High School Campus and raised more than $1,120 which was donated to NJCTS. During the walk, there were several guest speakers as well as food, games, and giveaways.

“NJCTS is proud to work with young people who take the initiative to raise awareness,” said Education Outreach Coordinator Gina Maria Jones. “It is because of Youth Advocates like Mike that our Youth Development programs are so successful and we hope that all kids living with TS will follow in his footsteps.”

Soon after hosting the Teens Tackle Tourette’s walk, Hayden led a Youth Advocate presentation to 150 fifth graders at Fairmount School in Hackensack on May 24 and delivered the keynote address at the Dare to Dream Student Leadership Conference at William Paterson University in Wayne, NJ on May 25.

“Youth Advocates like Mike Hayden live out the mission of NJCTS and advance public perception, understanding and acceptance of people with TS and associated disorders,” said NJCTS Executive Director Faith Rice. “We are so proud of everything Mike has accomplished.

BRTV Morning Show interviews Girl Scouts about their efforts to raise awareness of TS

Ilina, Jaclyn, and Cami from Girl Scout Troop 60808 were interviewed by the Bridgewater Raritan High School’s morning news show about their effort to raise awareness for Tourette Syndrome. They want everyone to wear blue on Friday in recognition of Tourette Syndrome Awareness Day in New Jersey on June 4th. Way to go, girls!

Teens tackle Tourette’s with fundraising walk

NJCTS Youth Advocate Mike Hayden inspired his high school English class to organize, promote, and host a TS awareness event with “Teens Tackle Tourette’s.” They recently held their main event by hosting an awareness walk on their HS campus. Over the past few months, NJCTS and Mike have educated his class about Tourette Syndrome and answered questions about the misunderstood disorder. The T3 students are a passionate group and we are so proud of all they have accomplished. Check back soon for more pictures and details.

A group of students enjoy the Teens Tackle Tourette's (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

A group of students enjoy the Teens Tackle Tourette’s (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

Read the story in Pascack Valley Community Life.

Watch NJCTS Youth Advocate Tess Kowalski’s interview on ABC’ NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! If you missed the segment that aired on Sunday you can watch it here. Bravo!

Skier races toward Tourette Syndrome Awareness

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler of Oak Ridge, NJ, is making a name for herself not only as one of the top skiers in the tri-state area but also as an advocate for Tourette Syndrome.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Kyla was diagnosed with Tourette Syndrome in third grade but she never let it hold her back. This past March, Kyla represented the state of New Jersey in Gilford, New Hampshire at the Pice Invitational Ski Race for the second year in a row. She was invited to participate in this race after placing in the top 10 in her age group and third in New Jersey this year.

Now, this sixth grader strives to raise awareness of this misunderstood, misdiagnosed disorder and she is starting in her own backyard. On May 18, 2016, Kyla met with Mayor Russell Felter and asked him to recognize June 4th as Tourette Syndrome Awareness Day in Jefferson Township.

Kyla encourages everyone to learn more about Tourette Syndrome to combat the stigma these children face. Her efforts represent the spirit of The GreaTS movement which recently was launched by the NJ Center for Tourette Syndrome and Associated Disorders, Inc (NJCTS) and soccer star Tim Howard. The GreaTS is a worldwide movement which aims to help individuals with TS and associated mental health disorders develop the confidence, leadership, and self-advocacy skills necessary to overcome their challenges and find their own paths to personal greatness.

“We applaud Kyla’s good work and she is part of a statewide effort to have June 4th recognized as Tourette Syndrome Awareness Day in every corner of New Jersey,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making biases a thing of the past. Kyla is truly One of The GreaTS!”

The Butler Family proudly displays their Mayor's proclamation

The Butler Family proudly displays their Mayor’s proclamation

Struggling with tics and anxiety and looking for support

Hi! My name is Hannah, and I have been struggling with Tourette’s for about 6-7 years now. I was never formally diagnosed, though. However, I was diagnosed with depression, ocd, and have multiple symptoms of ADD, however I don’t know if that’s just because of my tics or not. Ever since I was a kid I have done weird tics that made others look at me like I was crazy. I used to push in on my stomach almost as if I was trying to hurt myself. That was where it started. I then developed head-banging & hand shaking symptoms. That was in 4-5 grade. (I still have those 2 to this day & I am a junior in high school) My first vocal tic was a noise I would make as if I was trying to mock a frog. Followed by constant throat clearing and grunting. Those two have also lasted to this day, however the frog noise lasted around 2 years. By seventh grade, I started feeling extremely depressed and I got prescribed 40mg of Prozac to try and help my depression and anxiety. Once I started taking that, my tics continued to get worse. I was still feeling depressed for about 2 years and I developed new tics. They included eye blinking, kicking my leg, having to touch something with my right hand after it touches my left, mocking facial gestures of others (especially on tv), mocking others noises, thumb clicking, shoulder shrugging, jaw clenching, and a few others that were minor. (One that I have developed recently (within the past year) is that a few nights a week or when I am taking a nap, I’ll be in the middle of sleeping/ falling asleep, and I will wake myself up by shouting a random word that I have no control over.)They seem to get worse when I’m thinking about them, but they get better when I’m either doing math or art. I am an honors student in Highschool and make all a’s, which is why my mother never felt like it truly affected me as much as it does. It may not affect me so much academically, but socially and physically it is terrible. Yes, I have a small friend group that knows about my symptoms and makes sure to accept my flaws, but in an uncomfortable situation, or around new people, my tics begin to spiral out of control to where I even sometimes have minutes at a time where my whole body starts shaking and all of my tics go off at once. A lot of the time, I can suppress my tics when I am trying to attract as little attention to myself as possible. However, the longer I hold it in, the worse the urges get. Once I let it out, it all comes out at once and I can’t control it until it takes its toll. I am scared that this will be difficult for me when I apply for a job or try to do anything on my own when I graduate highschool. I have extremely bad social anxiety as well, so the job interview is the scariest part of a job for me. If I am not familiar with the person I get nervous and my tics start to spiral, motor and vocal. I always feel like an outcast because people just don’t understand. I would be so thankful if you would accept all of my efforts to join this blog! I have been looking for a support group and people to talk to that share similar struggles as me and this would be an amazing opportunity! Thank you so much for reading this it really means a lot to me.

Side note:

There are also other minor tics that I do excessively that I never knew were tics until I researched this subject. Such as nail biting, lip biting, knuckle cracking, etc. I didn’t know if those were relevant or not as many people do those things when they get nervous.

Watch for One of The GreaTS on ABC’s NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were recently interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! Tune in to ABC on May 29 at 5:30am. And in case you miss it, we’ll be sharing the clip here too. #StandWithTheGreaTS

ABC Host Ken Rosato interviewed NJCTS Youth Advocate Tess Kowalski and Tim Kowalski for an upcoming episode of NJ Viewpoint.

ABC Host Ken Rosato interviewed NJCTS Youth Advocate Tess Kowalski and Tim Kowalski for an upcoming episode of NJ Viewpoint.

ABC Host Ken Rosato sits down with Tim and Tess Kowalski and John Miller of the Tourette Association of America to discuss TS advocacy in the region.

ABC Host Ken Rosato sits down with Tim and Tess Kowalski of NJCTS and John Miller of the Tourette Association of America to discuss TS advocacy in the region.

NJCTS Youth Advocate Mary Kate Donahue delivers keynote address at Dare to Dream Conference

NJCTS Youth Advocate Mary Kate Donahue delivered the keynote address at the 2016 Dare to Dream Student Leadership Conference at Stockton University on May 9.

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This wasn’t Mary Kate’s first rodeo. She is an accomplished speaker and children’s book author and she loves sharing her story. As a student at Stockton University, she was honored to have the opportunity to inspire high school students visiting her campus.

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“This was an amazing experience,” said Mary Kate. “The kids were awesome and ready to be educated. They were so eager to learn and they are the reason I love doing things like this!”

We’re proud of you, Mary Kate! You are One of The GreaTS!

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NJCTS Youth Advocate Mary Kate Donahue with Dare to Dream MC LeDerick Horne

 

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.