2016 NJCTS Youth Scholarship Award Essay: “Visible”

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!



My parents always wondered why I could not stop sniffling. I did not have any other symptoms of a cold, and my sniffling was continuous, far longer than a cold would have lasted. I was prescribed a nasal steroid spray. The doctor thought I had allergies. As it turned out, my sniffling was not a result of allergies but was rather one of my earliest identified tics. I have Tourette Syndrome. My mother noticed my odd, seemingly involuntary movements and brought me to a neurologist. I was diagnosed with Tourette Syndrome, and we realized that my sniffling was actually a tic. As the years have gone by I have expressed a multitude of different tics, most of which were motor tics. I had a few minor vocal ones dispersed within the rest, but as a whole my tics are motor tics.

When I was young I was a walking paradox. I adored attention and loved being in front of people, but at the same time I was dreadfully shy when it came to people I did not know very well. I would dance in the school talent show and not sweat it but I could not hold a conversation with another fourth grader for the life of me. This weird mix of feelings made having Tourette’s very difficult. I loved having people look at me, but when people looked at me because of how my face moved on its own accord I felt uncomfortable. It felt like the wrong kind of attention. I already struggled to fit in because of my inherent social anxiety and lack of friends, so feeling like something was fundamentally wrong with me made my social life and self-esteem pretty pathetic. I could not even control my own body. How was I supposed to blend in? Kids at church made fun of me for my tics. They imitated them and counted how many times I would tic per minute. It was a fun game for them, but I cannot describe how anxious and hurt it made me feel.

As happens to many children, my tics have subsided a bit with age. In fact, most people

in my new town do not even realize I have Tourette Syndrome. The tics are most visible when I am anxious, and they are far more manageable. I do not find myself frequently sporting sore muscles and joints as a result of ticking anymore. The tics still exist, but they are less frequent and less exhausting. I am pursuing acting as a profession. I am glad that I have grown to accept my condition for what it is. I have selected a career path that I am passionate about, and it happens to be a career which is very visible. People will be watching me, whether I am on stage or on screen or in an audition room. Yes, I have Tourette’s. Yes, I do have involuntary motor tics. But they do not significantly distract from the artistry of what I am performing. And they have shaped me into who I am. Would I be the same person if two boys did not count each tic for minutes on end? I probably would not. I am incredibly conscious of other people’s insecurities and disabilities. Would I be the same person writing this today had I not overheard the other cheerleaders whispering to each other about the weird throat-clearing noise I made? No, I would not. I make it a point not to talk about people like that. Would I be the same person if I did not have a peer ask me “What’s wrong with your face?” No.

Having Tourette Syndrome has afforded me skills and life lessons which are unique to the condition. I am coping with it every day, and I am succeeding. I no longer mind when people look at me. I am strong and can even explain what is happening if they would like. I have Tourette’ s. And it is visible. But it’s me.

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

NJCTS Youth Advocate featured on ABC’s “Protect Our Children” special

PROTECT_OUR_CHILDREN_Date Time WABCOn April 16th, ABC aired the, “PROTECT OUR CHILDREN: COPING, STRESS, & MOVING FORWARD” special hosted by Eyewitness News Anchor, Diana Williams. This special describes what experts are referring to as an epidemic of stress-related problems plaguing our children. It’s not easy being a kid these days and the American Psychological Association says one in three teens is stressed. Doctors report they are treating kids as young as six for Migraines and Ulcers. NJCTS Youth Advocate Tom Licato of South Plainfield, NJ, was featured in the program along with other young people dealing with physical, mental, and economic stress-related problems.

“Meeting a 17 year old High School Junior on a mission to educate others about Tourette Syndrome, he’s clearly a leader and a powerful advocate,” said the special’s producer, Jeelu Billimoria. “Finally being diagnosed in 6th grade was a relief for him and he continues to be treated at Overlook Medical Center’s Neuroscience Institute.”

Click here to watch one of NJCTS’s finest advocates on ABC.


October is National Bullying Prevention Month

The NJ Center for Tourette Syndrome joins the movement to prevent bullying,

expanding its Youth Advocate Program

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

This October, schools and organizations all across the country are observing National Bullying Prevention Month. All students should feel safe in school and have the opportunity to grow and thrive, academically and socially, and through its  Youth Advocate program, the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is taking special steps to prevent bullying.

NJCTS Youth Advocate presentations inform youth about Tourette Syndrome (TS)—a misunderstood and misdiagnosed disorder that affects 1 in 100 school-aged children who are often the targets of bullying. Advocates are 13- to 18-years-old and either have a TS diagnosis or live with a sibling or family member with TS. In addition to providing an overview of the neurological disorder, the Advocates promote understanding and tolerance, and deliver a strong anti-bullying message. The presentations have grown to include a discussion of the Six Pillars of Character: Trustworthiness, Respect, Responsibility, Fairness, Caring, and Citizenship.

“NJCTS has long been and continues to be one of the most important organizations addressing childhood bullying in NJ schools,” said Dr. Stuart Green, Director of NJ Coalition for Bullying Awareness and Prevention and Associate Director of Overlook Family Medicine. “Their innovative youth advocacy program provides a much-needed service. The program empowers and gives voice to youth with TS, shines a light on a commonly misunderstood and stigmatized condition, and helps NJ youth and their teachers strengthen their empathy for those who are vulnerable and targeted. The NJCTS Youth Advocates are heroes for an important cause – they deserve our recognition and support.”

In recognition of the efforts to improve school climate and reduce rates of bullying, NJCTS regularly coordinates Youth Advocate presentations in schools and community groups, reaching thousands of students throughout New Jersey. Since the program’s launch in 2009, NJCTS Youth Advocates have conducted more than 250 presentations, raising awareness and increasing sensitivity and understanding.

“Our Youth Advocates foster understanding, sensitivity, and tolerance of TS while displacing the myths and stereotypes that are often associated with this misunderstood and misdiagnosed disorder,” 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.”

During National Bullying Prevention Month, NJCTS will be training a new “class” of Advocates on Saturday, October 24 from 10 a.m. to 4 p.m. at the Morris County Library, 30 East Hanover Ave., Whippany, NJ 07981.

For more information or to attend the training, please contact Gina Maria Jones, M.Ed, NJCTS Education Outreach Coordinator, at gjones@njcts.org or 908-575-7350.

Award-winning Dawson Coyle to perform at Sunday’s NJ Walks for TS at Medford Lakes

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

The first South Jersey 5K for Tourette Syndrome is coming to Medford Lakes this Sunday and Dawson Coyle can’t wait.

The Gloucester County native is making a name for himself throughout the region as an award-winning singer/songwriter and will bring his sound to NJ Walks for TS.  He says encouraging audiences with his music is a big part of what he does, but this event holds an even deeper meaning for the 16-year-old.

Dawson was diagnosed with Tourette Syndrome (TS) at the age of five. A neurological disorder, TS is characterized by involuntary movements or sounds known as tics. As many as 1 in 100 children exhibit symptoms of TS which is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues, and learning disabilities.

“Having TS and being aware of the everyday struggle of all that comes along with it makes it a very real issue for me,” he said.

NJ Walks for TS is a day of advocacy and awareness, started for kids, by kids to benefit kids with Tourette Syndrome. In addition to encouraging peers and younger kids to embrace life by connecting with something they enjoy doing, Dawson would like to help bring the public to a greater understanding of TS.

“This is not a joke,” he said, “I’ve heard the term [Tourette] negatively in describing others as a joke my whole life and it’s not funny.”

“For me, personally, when I hold back my motor tics, it’s like holding back a blink but in every part of your body—it’s exhausting,” he said. “[TS] waxes and wanes, it’s very possible to see me not ticking for extended periods of time…there is no rhyme or reason.”

For Dawson, and many of the other 20,000 school aged children and teens with TS, the outward appearance is the tip of the iceberg.

“Many times we struggle with our thoughts,” he said. “Depression, anxiety, OCD and so many other things come along with it.”

Ultimately, he wants everyone—especially those struggling with the disorder—to know that “those things do not have to overtake someone with TS.”

Dawson credits his faith, parents and music for helping him keep a positive mindset.

“I really want to be an encouragement to others with TS,” he said, “to show them that they can find something they’re good at, work hard at it and, in return, can also encourage and inspire others.”

All proceeds from NJ Walks for TS at Medford Lakes will benefit the NJ Center for Tourette Syndrome’s (NJCTS) Education Outreach Program, which delivers in-service trainings to schools and hospitals across the state, youth leadership training, and scholarships.

To register or donate, visit http://njcts.org/walk. On-site check-in begins at 8 a.m., Sunday, Sept. 20 at Beach 1/Vaughan Hall (Tabernacle Road) in Medford Lakes.

For more information on Dawson Coyle, visit http://www.dawsonmusic11.com/

2015 NJCTS Youth Scholarship Award Essay: “I Am Who I Need To Be”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!



Growing up I never really understood much about Tourette syndrome other than it made me twitch all the time and I never made many friends because of it. I was quickly rooted out as the weird kid in the third grade, when it first developed, and it didn’t get much better the following year, or the one after that. I was never very popular and I was typecast as the weird twitchy kid with no friends up threw middle school. It’s not that I was bullied; rather everyone in school always ignored me so that I was never included in games or parties because I guess sitting near the kid who had a twitch was too uncomfortable for all of them and it was easier to push me aside. But what really bothered me was that if they thought it was uncomfortable for them then they really didn’t understand how much the twitching bothered me. Needless to say I spent most of my time alone when I was younger because of this and even though most would probably be very upset about this I learned to manage it. Yes it would have been nice to have a few friends growing up, but more importantly this taught me a sort of independence that is very important to me now.

Even though Tourette’s makes focusing on a single spot very difficult for me when I’m constantly jerking my head from side I have loved reading ever since I was young. In middle school, when I still didn’t have any friends I’d read every day to pass the time simply because it was better than doing nothing. I read because I’m bored and I have a lot of free time on my hands in and out of school. Or at least that’s how it started back then because as time went on I realized that reading wasn’t just a passing interest, it became necessary for me and it still is.

Eventually all the childish bullying stopped bothering me when I began to realize that I am who I am and there’s simply nothing anyone can do to change it, and I don’t want to change. So if I’m stuck like this I had might as well prepare to be like this for the rest of my life, and I am.

And eventually the bullying stopped all together; my classmates forgot what it was that made them not like me and they forgot that they didn’t like me to begin with after I learned how to control the Tourette’s on my own a little bit better, or maybe they just decided let it go. But unfortunately the damage was done, the end result to all this was I never learned how to interact socially, and I didn’t even realize it until high school. Whenever someone wanting to talk approached me I didn’t know what to say or how I should say it. Should I be serious or joking, sincere or sarcastic, should I try to continue the conversation or try to break away? The idea of having to talk to someone became anxiety, and the Tourette’s didn’t stop, it wasn’t as bad as when I was younger but I was still struggling to focus and not lose control of my head, making any confrontation that much more nerve racking because I really didn’t want anyone to notice.

But that doesn’t mean that I’ve become some sort of social pariah who hides away behind a book all the time. It’s true that Tourette’s was never easy to deal with but that just meant that I had to work through it if I wanted to take back a normal life that I always wanted. Medication was always out of the question because that would only cover the problem, not fix the problem and. I would just be running away from my personal reality. If I couldn’t face that I cant face anything. I had to learn that even though having Tourette syndrome had a big effect on how I ultimately turned out it doesn’t define who I am, and even though I didn’t turn out how I wanted to, I am who I need to be.

New Jersey students get lessons about Tourette from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

“Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all,” NJCTS Education Outreach Coordinator Gina Jones said. “He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion.” Continue reading

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading

I’m still at it!

5 years post National Youth Ambassador Training in Washington, DC and I am still at it!

Following my fall semester at SUNY-Binghamton I was asked to return to Memorial Middle School in Fairlawn, N.J., to speak with the 7th-graders about Tourette Syndrome and bullying. During the back-to-back presentations, I had the opportunity to tell my TS story, as well as explain what the disorder is and why you should not bully anyone.

The students were engaged throughout the entire presentation and had a bunch of questions. For example:

  • Were you ever bullied in school?
  • Do you still tic?
  • Do you know alot of other people with TS?

They were all shocked at how difficult it was to hold in a tic when I compared it to a scratch on their head and did not allow them to touch their heads for two minutes; everyone was squiriming in their seats.

All of the students promised me that they understood my message and that they would not bully their peers.

I encourage all of you readers to speak out about Tourette Syndrome, bullying and your own personal story. If you have any quesitons about how to get involved, please contact the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).