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!

NoelleG

NoelleG

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.