2016 NJCTS Youth Scholarship Award Essay: “Living with Tourettes”

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!

EricR

EricR

I was diagnosed with Tourette’s Syndrome at the age often. My tics were much worse when I was younger, but have started to dissipate as I have grown. The diagnosis of Tourette’s is central to my identity and matters a great deal, as it has shaped who I am and how I interact with the world.

Having Tourette’s does not define me, however, it was a pivotal player in the shaping of my early years. I started showing symptoms around the age of six. The first observable tics included humming and blinking. My family had no idea what was happening, so they took me to see multiple doctors. At first the doctors said that I had transient tics. They could not make the diagnosis of Tourette’s until I displayed both motor and vocal tics consistently for over a year. This was a problem because my tics would change constantly. I could have one or a combination of multiple tics occur simultaneously and then they would suddenly disappear for months at a time. This occurred for a number of years. Therefore, it wasn’t until the age often, that a doctor officially made the diagnosis.

Tourette’s has come to shape my personal identity in different ways over the years. I have had to learn how to deal with it every day of my life, since elementary school. When I was younger, my tics were at their worst, so I had to focus more on controlling them than on the lessons being taught at school. As a result, my parents often had to re-teach the lessons to me, and at times I also needed tutoring. Once I became a teenager my vocal tics were the most noticeable and disruptive. Fortunately, my teachers and classmates were compassionate and understanding. They knew that I had Tourette’s and that I wasn’t making strange noises on purpose. It was during this time that various medications were attempted, but they only made my tics worse and gave me bad side effects. Despite the downside of distracting me from my early education, many positive things have come out of my condition.

Having Tourette’s Syndrome has allowed me to understand myself on a deeper level. I have become more confident as I grow and adapt to my disorder. Because of the confidence I have acquired, I am a more focused and dedicated student.

As a result of this dedication, I have been on the honor roll every year since entering middle school. I also hold memberships in both the St. Thomas Aquinas Honor Society and the National Honor Society of High School Scholars. During my sophomore and junior years, I received several Outstanding Academic Achievement Awards. In addition, I have been recognized as a member of the Sapientia Sanctitas Society.

My success did not come easy. Many hours of studying and tutoring occurred throughout my elementary and high school years. I knew that if I wanted to succeed, I would need to focus and concentrate on doing well. My determination and perseverance paid off, as I have been accepted into three colleges to study architecture.

Experiencing challenges at an early age caused me to have a unique and positive perspective of the world. I see the world in a different way. I am not quick to judge other people, as I understand what it feels like to be looked at oddly. When I was younger, I used to be very introverted. Now that I am older and my tics are more manageable, I have become more extroverted. I am no longer afraid of what others will think of me and I now welcome new challenges.

Tourette’s has helped shape my personal identity as it has exposed me to diverse and challenging situations. I have become less introverted and have formed a positive opinion of the world around me because of the confidence I have gained from adapting to my disability. I look forward to experiencing new challenges and more opportunities for growth, as I continue my education as an architecture student.

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

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.

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.

 

The Application for the 2016 NJCTS Tim Howard Leadership Academy is now Available!

Leadership Academy logoThe NJCTS Tim Howard Leadership Academy is a unique and invaluable learning experience for teens with Tourette Syndrome. Over the course of these rigorous four days, participants will stay overnight at Rutgers University, attend engaging workshops that provide a deeper understanding of their diagnoses, participate in small group discussions and be encouraged to share personal triumphs and challenges, and will be challenged through numerous educational activities to develop their sense of self-leadership, self-empowerment, and resilience. Eligible applicants:

  • Have a diagnosis of Tourette Syndrome from a qualified medical practitioner
  • Are entering their Sophomore year of high school through having just completed their Senior year of high school by the summer of 2016
  • Have an active interest in, and commitment to, their vision of themselves as leaders
  • Are comfortable being away from home for four consecutive days and nights
  • Can comfortably and meaningfully participate in an intensive, demanding learning experience with others who share their diagnoses, which includes comfort interacting with others and sharing information about themselves, comfort discussing their diagnosis, and comfort being around others who tic and have anxiety disorders.
  • Ability to sit in a workshop setting for up to an hour at a time

Top THLA 2015Please note that the application has changed significantly for 2016:

  • Requires feedback and a questionnaire from a medical practitioner who has seen the applicant within the past 12 months.
  • Requires feedback from an educator who has worked with the applicant in a classroom setting in the past 12 months.

Because consideration for admittance is dependent on all aspects of the application being completed, you are advised to begin the application process as soon as possible to ensure a completed application is submitted by the deadline. 

APPLICATIONS ARE DUE BY MARCH 1, 2016.   

Participants form lasting connections, gain a better understanding of themselves, and walk away with a toolkit that prepares them for a successful future! Interested applicants should request an application by contacting Academy Director, Melissa Fowler, via email at mfowler@njcts.org. Applicants who are being considered for admittance will be contacted for an interview by March 20th, 2016.

Thank you for your interest, and best of luck!

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/

Youth Wish for Crowd of Support at NJ Walks for TS at Medford Lakes

Ava and Anna Heicklen with Tim Howard at Team Up with Tim Howard, kicking off a year of TS awareness.

If you ask young people what they wish for, many of them are pre-occupied with the material wonders of childhood. But for three girls in the Medford area, their simple request is far from child’s play.

They’re inviting everyone who reads this to stand with them on September 20th in support of a large community of children in New Jersey living with a misunderstood neurological disorder.

They are the inspiration behind the first South Jersey walk to benefit the Tourette Syndrome community. NJ Walks for TS at Medford Lakes is an off-shoot of popular NJ Walks events in North and Central Jersey by the NJ Center for Tourette Syndrome (NJCTS).

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. TS is frequently accompanied by ADHD, OCD, mental health and learning disabilities. NJ Walks for TS was founded for kids, by kids and all proceeds from the event will support the Education Outreach Programs of NJCTS which deliver in-service trainings to hospitals and schools across the state, youth leadership training and scholarships.

Jen Heicklen of Medford Lakes and Maureen Faber of Medford are the moms behind the event and their daughters are following in their footsteps in bringing the public’s attention to TS.

“Ever since my little sister was diagnosed, too, I wanted to help spread awareness,” said 11-year-old Anna Heicklen. “I thought the walk would be a great way to do this.”

Ava Heicklen, 10, said she’s part of the movement because Anna “wanted us to work together to help teach our friends and school about Tourette.”

Through NJ Walks for TS at Medford Lakes, they hope to raise support and awareness of TS, which is an often misunderstood condition.

When asked what she’d like the public to understand about TS, Anna replied, “It isn’t easy, it interferes with your daily life. I just want people to be understanding.”

Hayley Faber, who is now a college freshman, adds “the more people understand about TS, the more accepting they are which makes it easier for kids with to explain things to our friends.”

Her hope is that the event will educate the community so that “it makes it easier and more comfortable for kids who have TS to live with this disorder.”

Ava, speaking on behalf of the 1 in 100 school aged kids with TS said, “We are not different from you. Our brains are just wired differently.”

All three girls invite kids and their families to gather on September 20th to learn more about TS and to stand up for the 20,000 New Jersey kids with TS and its associated disorders.

“We want everyone to support us so my sister and I can continue to spread awareness in the schools,” said Anna. “It would mean the world to us to have a ton of people to show up and support us.”

Ava concluded, “Because it would show that people support us like we support them.”

Registration begins at 8 a.m. at Vaughan Hall on Tabernacle Road, pre-registration is suggested at njcts.org/walk.  All registrants will receive a free, one-month family membership to Medford Fitness.

Academy Empowers a New Class of Teen Leaders

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

The NJCTS Tim Howard Leadership Academy honors a new set of leaders in the Class of 2015.  Each of the 35 participants took part in an intensive four-day training promoting self-empowerment, self-leadership, and resilience—all important skills to succeed while living with Tourette Syndrome.

Tourette Syndrome (TS) is a neurological disorder characterized by uncontrollable movements known as tics. As many as 1 in 100 people show signs of TS which is frequently accompanied by other disorders including ADHD, OCD, and learning disabilities.

Created in 2014 in partnership with U.S. Men’s Soccer goalkeeper and TS advocate Tim Howard, the Academy is the only leadership program for teens diagnosed with Tourette Syndrome in the nation. During the opening ceremony, Howard’s inspiring video message welcoming the Class of 2015 encouraged them to “learn as much as you can from the expert team we have assembled and enjoy the time together with others who will guide and inspire you.”

Our partners at creative agency BNO introduced The GreaTS movement during opening ceremonies. This powerful movement aims to spread awareness of TS around the world and inspire individuals with TS to come out from behind the shadows, which is also a primary goal of the Leadership Academy. BNO premiered a video about The GreaTS featuring Tim Howard and the room erupted with applause.

The Academy took place at Rutgers University from August 6-9 and emphasized the biological, psychological, and social components surrounding a TS diagnosis. Leading TS experts from area Universities including Rutgers, Yale, and the University of Pennsylvania led presentations and workshops throughout the program. Participants had the opportunity to learn from the neurologists, geneticists, psychologists, and social workers and were able to ask their most burning questions about their diagnoses.

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

“We want them to leave as experts, ready to face a public who is misinformed about TS,” said Leadership Academy Director Melissa Fowler. “They have a unique opportunity to learn more about their diagnosis from our expert presenters.”

Each of the 35 participants—who hailed from New Jersey, New York, Pennsylvania, Illinois, Maryland, Indiana, Washington, Virginia, and California—contributed thoughtful questions and were eager to share life-skills tips with one another. They were assigned to teams led by coaches—successful young adults with TS.

In smaller “Team Talk” sessions, personal, powerful, and emotional discussions continued about the four pillars and developing the goals participants set for themselves as a final project. The coaches were asked about driving, getting accommodations in college, how TS affects them at work, and dating.

“It means so much to teens to engage with coaches and presenters who are the ideal role models,” said NJCTS Executive Director Faith W. Rice. “Learning from others who are living successful lives with a TS diagnosis is invaluable.”

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

Over the course of the Academy, participants spoke of resilience and leadership and defined personal goals for themselves. With the lessons and skills they gained, this class will step up to be the voice of awareness in their own communities.

The 2016 NJCTS Tim Howard Leadership Academy dates will be announced soon. For more information visit www.njcts.org/teamup.

2015 NJCTS Youth Scholarship Award Essay: “The Climb”

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!

JordanS

JordanS

l’m sitting in class and it is completely silent. l’m terrified of silence. I get an urge, an urge so powerful that I can physically feel it traveling through my body. My heart is pounding as I tell myself, “Don’t do it. Don’t do it.” But I have no control. The sound comes out loud and clear. The next thing I hear is giggling, snickering, mocking. I look around and I see cruel eyes glaring at me, burning holes in my skin. I feel like a bug under a microscope. I have Tourette Syndrome.

I’ve always thought of school as a battle ground; a place full of people who just don’t understand. Weekday mornings were always a struggle. I didn’t want to go to school. I didn’t want to feel inferior. I barely even understood my condition. All I knew was that I make noises and movements that were unwanted, and everybody found them funny; but I didn’t find them funny. Every insult, dirty look, and whisper knocked me down a little more, to the point where I couldn’t stick up for myself because the bullies stole my last bit of self-esteem. For once, I wanted to fit in, to not be the oddball, to be respected, to be understood. Most of all, to be accepted. Obviously, these wishes weren’t just going to be handed over, that’s unfortunately not how the world works. My family and I wanted things to be different; but we would have to make the difference ourselves.

I decided, as a terrified ten year old, to educate the whole school on my condition. lt was something I never thought I could do, but desperate times call for desperate measures. Each class watched a movie explaining Tourette Syndrome, and then I went in and answered questions that they had. Standing up in front of the first class, I had never been so nervous in my life. But as the day went on, it got a little easier. I could feel confidence growing in me again. I could feel that fire; the fire that was put out by the people who I once feared.

In just one day, I went from being taunted, to being admired. people are actually more accepting than I could have ever imagined. The world is brighter than I ever thought it could be. That day was so successful that I’ve done the same presentation all throughout middle school and high school. I now have thicker skin, self confidence, and an amazing support system. I walk through school with my head held high; which is a complete revolution from staring at my feet when I walk.

It has been said that many kids with Tourette’s are musically inclined. It was in sixth grade that I finally had the confidence to be in talent shows. I remember being so nervous about the possibility of having a tic on stage, but it was the exact opposite. As soon as I opened my mouth and sang, all of the tics went away. lt was like magic. Those three minutes of “The Climb” by Miley Cyrus showed everyone, including myself, that I am more than just a girl with Tourette Syndrome” I am a senior in high school now and I still haven’t stopped singing. I went from being “the girl with Tourette’s” to “the singer”. lt was a dream come true.

Although having Tourette’s isn’t easy, l wouldn’t change it. I no longer see it as a flaw, it makes me, me. I realized that it’s not the nightmare that I thought it was. It really has shaped me into the person I am today. When a new problem arises in my life, it’s easier to handle because I’ve already faced and conquered my biggest obstacle. I have finally accepted that my Tourette’s is a part of me. However, it isn’t all of me; because I have Tourette’s but Tourette’s doesn’t have me.

2015 NJCTS Youth Scholarship Award Essay: “My Journey with Tourette”

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!

SanjitS

SanjitS

As each student finished presenting, another one would go up. My turn drew closer, and I felt like my heart was beating out of my chest. I could feel my tics getting worse. I was shrieking, hitting myself, and sweating profusely with each passing second. What if I fail this project? What if people laugh at me? Will I embarrass myself? These questions haunted my mind and created a vicious cycle that would translate into loud vocal tics. After what felt like an eternity, it was finally my turn to present. I got through my presentation and to my surprise, I received cheering and applause. My name is Sanjit Singh and I have had Tourette syndrome since the 4th grade.

My journey towards reaching that milestone presentation was anything but an easy one. As my vocal and physical tics became more severe, so did the glances and stares from random strangers. I wished they would realize that the level of inconvenience they felt from my tics was nothing compared to all the hardships I had to deal with my entire life. Mundane tasks such as sitting in a library or going to concerts always made me second-guess myself because I was afraid that my tics would ruin the peace of others. Despite my considerate intentions, I endured years of bullying for a medical condition I have absolutely no control over. My confidence and self-esteem were at an all-time low, and I finally decided that it was time for me to define my life rather than let Tourette syndrome define it for me.

I choose to let my experiences inspire me. I started going to class with more confidence and eventually stopped caring about how others perceived me. With the help of the excellent support system in place at my high school for students like me, I started to do well on my homework and exams. I started to believe that being different didn’t always have to mean being worse. Having Tourette syndrome gives me a deeper understanding of human nature and puts me in the unique position to study Psychology and become a Special Education teacher for Elementary school. I love finding creative ways to reach out to young children. I have been known for my storytelling among preschoolers, as it riles up their enthusiasm and gets their imaginations running. I truly understand that all people go through their own battles. I never “judge a book by its cover”. I have developed much patience with people and have a strong desire to help them become the best versions of themselves. My goal is to use my experiences with Tourette syndrome to make the world a better place, by helping each person realize his full potential.