2017 NJCTS Youth Scholarship Award Essay: “That’s Life”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

TommyL

When I was twelve years old, I was sitting in the lunch room, and in an instant, the school went into lockdown. For most students this is not a serious issue. They stay quiet and out of sight. For me, lockdowns are a challenge because I have Tourette Syndrome (TS), a disorder characterized by involuntary movements and sounds called tics. While the rest of the cafeteria was quiet, I couldn’t help but involuntarily yelp and twitch my neck. It felt as though the eyes of the world were glaring at me with their ears wide open to the noises I was making. I was not expecting the comment that would hurt worse than the constant staring and whispers from that school year. This unlikely offender was a quiet, but kind person who sat in front of me and asked, “Why are you doing that? What’s wrong with you? Someone should put you in a cage or something!” It was at that moment that I knew that I had to speak out about Tourette Syndrome and advocate for myself.

About a month later, a person from the New Jersey Center for Tourette Syndrome and
Associated Disorders, Inc., came to my school and educated my peers about TS. During both presentations I stood up and stated that I had TS and I deserved respect. Through speaking out at the presentation, I became more confident and unafraid to say I have TS. In a span of six months, I went from being bullied, and afraid to feeling confident and free to be me. I learned through that entire experience that I wanted to be the one up in front of a crowd helping kids with TS come out of their shells. I later became a National Youth Ambassador and Patient Educator for Tourette Syndrome. I continued on to speak at schools, hospitals, and universities. My most rewarding experiences were when I spoke to children with TS and their peers.

Out of the adversity I have faced, I have learned to be resilient. I have developed thick
skin that has made every comment and stare bounce right off. I have learned to get back up after each defeat and push through to every victory. Throughout every tough event in life, I have turned to music to get through them. It is a known phenomenon that people with TS don’t tic while performing. Music is the reason that I wake up at 5:00 every morning to be at my before school choir class. Throughout my life I have had two passions: music and Tourette Syndrome. It is my hope to combine them into a career in music therapy. I hope to do research to figure out the correlation between the reprieve from tics and music in Tourette Syndrome patients. Hopefully, one day I will come up with a viable way to treat people with TS through music.

Through my past experiences I have learned to see each challenge as a gift. If I didn’t go through what I have in life, I wouldn’t be me or have done half the things I’ve accomplished over the years. My past experiences are what made me who I am today, and I wouldn’t change any part of them. They are what gave me the drive to be successful and create a positive change in the world. I will meet each new challenge and goal with the same intensity. I will continue to be resilient, because no matter what I do in life there will be staring, comments, and people who say I won’t succeed. If there is one thing I have learned, it is that people say many things, but they aren’t always right. Someday I will be living proof that nothing, and no one, will stop me from accomplishing my goals in life.

2017 NJCTS Youth Scholarship Award Essay: “Tourette Syndrome will always be a part of me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Trevor S.

At ten years old, I was diagnosed with Tourette Syndrome and it has had an impact on my life at first. Being so young, I did not really understand what Tourette Syndrome was, or what I was diagnosed with. It made it a little difficult to communicate with friends and let them know exactly what I was doing or why I ticced. One of the things that I wanted to do when I grew up was to learn more about Tourette Syndrome so I would learn more about me as a person. I moved to New Jersey two days before the start of my freshmen year. At the start of junior year, my mom found out about the [NJCTS Tim Howard Leadership] academy and it was an awesome experience. It helped me learned more about myself as I learned a lot more about TS than I previously had. The time I had at the academy left me feeling great that I finally understood who I was and I could explain to people about TS. I explained what TS was to my friends who were curious and I ended up becoming a youth advocate for TS. During the first couple months of school, I attended a presentation and answered questions for the students about TS. I have also attended two TS walks. I have recently been accepted to the academy again and look forward to attending it. Tourette Syndrome has had such an impact on my life that I do not believe I can imagine my life any other way. My letter for college was about Tourette Syndrome and how it had affected my life. I have been accepted into all but one of my colleges and have received the presidential scholarship at every university. Tourette Syndrome is, and will always be a part of me. It does make certain things interesting such as school and sports but it invites me to see new things. In school, I do well and I get to have extra times on my tests when it is needed. While there are some negatives, the positives outweigh the few negatives by a lot. I have made many new friends through the academy and other places and my knowledge in general has increased.

2017 NJCTS Youth Scholarship Award Essay: “Growth Through Opportunity”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest. 

James P.

Even though many people in the outside world regard Tourette syndrome as a disability and hindrance towards a person’s overall success, I believe Tourette’s has been a God-given gift that has shaped me into the strong-minded and resolute individual that I am today. When I was six, I was officially diagnosed with Tourette’s syndrome, but did not begin to experience the effects of my disorder until a few years later. Growing up, I attended a private, Catholic school that had about twenty students per class. In the fourth grade, word quickly spread around that I was the “weird kid” as more of my peers realized that I was the only one who moved his face in strange ways. Although none of my classmates were bothered by my tics, a couple of boys from the grade above me took this as an opportunity to tease me every time I saw them. After a few months of ignoring the endless bombardment of name-calling and insults, I unfortunately decided to fight back with my fists instead of my words. Predictably, I ended up in the office of our principal, an authoritarian nun who had zero tolerance for violence. Expecting to be scolded by her for my actions, I was surprised to hear her say that Tourette syndrome was a blessing from God and not to worry about what other people thought or said about it. While what she said still resonates in my mind to this day, I only started to believe her after I attended the NJCTS Tim Howard Leadership Academy this past summer.

Before I attended the Academy, I chose to ignore the fact that Tourette’s is an important part of my identity, despite what my principal told me seven years ago. Heading into the Academy, I thought I was just going to learn about coping mechanisms, for when my tics become unbearable, and how to explain to new acquaintances that I have Tourette syndrome. What I took away the most from the Academy though, was how to successfully use resilience, courage, and grit in my pursuit of playing collegiate baseball. During my time at Rutgers, I was in the midst of the recruiting process and was preparing for the largest showcase I would be attending the next week. I was undoubtedly afraid of not performing to the best of my abilities that stemmed from a lack of confidence. However, at the Academy I learned that in order to compete amongst the elite baseball players in the United States, I must overcome the hardships I faced in the past, athletically and psychologically, so I could confidently develop into a better pitcher. Of the three traits, nonetheless, grit was the characteristic that I believe helped me the most during that showcase. Baseball has and always will be a game that tests a person’s strength of character and distinguishes the best players from the rest of the field. The same can be said about how I started to live with my Tourette’s after I left the Academy. Instead of continuing to hide my tics from the outside world and let insecurity consume me, I chose to dive into life with an open mind ready to accept the curveballs God sends my way. With this new mentality and approach to adversity, I was able to pitch my way into the hearts of a handful of college coaches and am happy to say that I will be continuing my baseball career at Kenyon College next year.

2017 NJCTS Youth Scholarship Award Essay: “Life’s a Twitch”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Anna B.

One of my all time favorite quotes is by Scott Hamilton, “The only disability in life is a bad attitude.” From my own experience, I can honestly say this is very true. Life with Tourette is very unpredictable and sometimes you just have to learn to roll with the punches. I am not always the best at this, according to my parents my attitude is, “less than awesome.” At least it used to be, with age and acceptance it has improved tremendously.  

As a twelve year old who’s tics were becoming more obvious by the day, I decided to make a difference. I wasn’t going to let my so called ‘disability’ hold me back. I knew without explaining myself the kids at school were going to make fun of me because they didn’t understand. That’s why I did research and wrote my own speech to present. If the kids are uneducated and pick on me it’s just because they don’t understand, but if they understand and still are unwilling to accept me then that’s their problem. I gave my very first speech to my class in the sixth grade which coincidentally was also the day I got my diagnoses. All the positive reactions empowered me. During my research I came across the National Tourette Syndrome Association’s Youth Ambassador Training program in Washington, DC, and the New Jersey Center for Tourette Syndrome (NJCTS). I was trained to be an advocate for TS and given a presentation to use in schools. I began presenting professionally to small classrooms but it wasn’t until I became involved with NJCTS that I really began making a difference. I attended the first patient center education training and another training on how to present in classrooms. My sophomore year of high school I spoke to around 50 doctors and other medical professionals about Tourette. Every presentation I did gave me a little boost of confidence, which for a shy kid was life changing.

Though my transition through it all seemed like smooth sailing was far from it. To put it gently, freshman year I was a hot mess. I had developed coprolalia and let it get the better of me. My bad attitude really was crippling. I focused on what was going wrong instead of focusing on how I could use it to my advantage. [NJCTS Family Retreat Weekend at] Camp Bernie changed that for me. I made amazing friends who I am actually talking to as a write this four years later. Hearing their experiences and sharing coping techniques was huge for me. Being in a place where my differences were not only accepted, but embraced as well, was utterly life changing. Steven, a teacher who also struggles with coprolalia, made me realize that even if I didn’t improve I could still be successful and teach special education as well. Once I was able to come to terms with my Tourette I was able to help others do the same.  

Now I am a happy, successful, eighteen year old pursuing my dreams and doing my best to empower those around me to do the same. My favorite example of this was a presentation I did a few years back. A third boy was being bullied for his TS so I did a presentation at his school. After the presentation, he came up to me and said, “Thank you, I think I’m going to have friends now.” It all starts with a good attitude and self acceptance.

2017 NJCTS Youth Scholarship Award Essay: “My Tourette’s, My Advantage”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Tim Howard, an amazing athlete playing Premier Soccer and two-time representative in the World cup. He defines himself as a player who happens to have Tourette. We have this in common. No, I am not a professional soccer player, but I am a successful student, passionate person, and someone who has compassion for everyone beyond belief, who happens to have Tourette. Many view my Tourette as a disability. I, on the other hand strongly believe it is to my advantage. The person who I see in the mirror everyday is not the once shy kid who was afraid to speak out. I am someone who is not afraid to advocate or my condition, someone who smiles at the sight of a challenge, someone whose ambition is so high that whatever my life has to throw at me I can easily pick myself up, dust off my shoulder and trek forward. I already have one challenge completed: not let my Tourette control me.

I was diagnosed with TS at seven years old, and Howard was one of many who my dad told me about who was very successful in various fields of life that had Tourette. It was great to have these examples when I was forced to resolve awkward questions from peers and the occasional bullying in school. Even teachers would make comments about the unusual things I would do in the classroom. I was very shy about my tics and never spoke out to advocate for my condition. As I look back to who I was then, and who I became today I realized that the NJCTS Tim Howard Leadership Academy changed me. Those three weekends showed me that I don’t have to hide, and I should be proud of who I am.

During my first year at the Academy, my confidence boosted tremendously. I was able to talk about my tics in a light-hearted fashion and I also started to feel a sense of pride about having Tourette. I no longer view Tourette as a disability because it makes me who I am today. Throughout the academy many professionals in the medical field helped me to improve myself with the condition I have. With this new information, I was able to teach important lessons and advocate for others at the end of my third year. The coaches and others who attended the academy made me a better person today by teaching me how to advocate for myself. They shared stories with me in meetings which allowed me to share my story, thus shaping me into the person who is not afraid to speak out and advocate for our “advantage”. The Tim Howard Leadership Academy is near and dear to my heart. This academy was the first time I was able to express my true self in front of newly made friends, and not to be embarrassed about my condition. It was a great opportunity to let out my inner “Noah” without the fear of rejection and abnormalcy to people who go through similar situations in their life.

I truly believe that my Tourette has guided me to become a person who not only could defy expectations but to accomplish triumphs I never expected to complete. Who would have thought a kid with a so-called “disability” could get into every school they applied to and have so many options to better their future. I would encourage people with Tourette or other “advantages” to speak out, to let the world know that we can do anything we set our mind to. Yes it might be a struggle, but that just means we will work 10 times harder than an average person. Whatever my future is – a doctor, a lawyer, a teacher – I know that with my little buddy by my side (Tourette) we can defy the odds and do anything. Now I might not be the greatest athlete or the most brilliant student but I am who I am. The condition called Tourette will be a part of me for my entire life but it will not be a limitation. I cannot control how people view me. can only control how I view myself.

 

2017 NJCTS Youth Scholarship Award Essay: “Growing Up with Tourette”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Tess K.

Eleven years ago: I sit, legs crossed, looking down at the brightly colored shapes and
letters covering the carpet below me. I’m in my kindergarten classroom. The teacher walks through the door and abruptly stops. “Tess, are you crying again?” I squeeze my eyes shut and desperately attempt to stop the tears. My teacher stares at me. She’s disappointed, I can tell. “Do I need to call your parents again to take you home?” I nod and get up to follow her out of my classroom.

Getting home always felt good, like I was finally in a place where I could be me. My six year old self never questioned why I felt so out of place; I would just cry in my room because something felt fundamentally wrong. Five months after kindergarten began, I finally realized why. I began to hear countless adults tell me, “You have Tourette Syndrome which means you will experience some movements and sounds that you won’t be able to control, but don’t worry, you’re ok.” However, no matter how many times I heard these words and saw the encouraging smiles that so often came with that sentence, I was still scared. I wondered why I couldn’t finish a sentence without uncontrollably sniffing, or why I couldn’t stop blinking. I didn’t want to do these things, and I hated that I wasn’t in control of my body. I barely understood what I had been diagnosed with, and the unknown terrified me.

For six years, I hid my Tourette. I only told my closest friends and family, and I relied on my parents to explain my situation to anyone else. My coping mechanisms were successful, but nevertheless untruthful. I would lie about my Tourette, telling people I just had a cold or there was something in my eye. Every time I made another excuse I felt guilty about hiding who I really was. My life was good, but I still lacked the necessary skills to advocate for myself and others with Tourette.

Five years ago: I stand in my synagogue, pacing back and forth, holding a speech, my speech, tightly in my hands. I see people file into the room. I start to shake, doubting myself and the decision I have made. Hello everyone, my name is Tess. I’m in 7th grade, and I’m here to talk to you today about a neurological condition I have, called Tourette Syndrome. I think to myself: Can I really say these words and can I say them with confidence? I walk up to the front of the room. I take a deep breath, calming my body and mind. I smile and begin. I hear my voice, a strong powerful voice I barely recognize. I think: Is this really me? Am I really doing this? I am.

Present Day: I sometimes recall memories of when I gave my first talk. It’s hard to even
remember that scared little girl I used to be. From the moment I finished that speech I knew I was not that child anymore. Now I proudly advocate for my disorder and I am not embarrassed about who I am. I want to become a voice for kids who haven’t found theirs yet. I present in classrooms to students with Tourette so they don’t feel the need to hide their disorder in school. I present in hospitals to doctors to share my personal struggles and story. I am finally comfortable in my own skin.

The Future: Educating others and explaining how important it is to accept one another is something I will always be passionate about. I’ve made it my goal to publicly speak about Tourette whenever I can. I want to continue doing this throughout my life. I will always make it my mission to share as much knowledge about Tourette as I possibly can, because then hopefully someday others will too.

2017 NJCTS Youth Scholarship Award Essay: “What It’s Like to Be Me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest. I hope you enjoy it!

Rachel M.

I have Tourette but Tourette does not have me. I have told myself this from day one, when I was diagnosed at 5 years old with Tourette Syndrome. It is a part of me and I let it help describe what kind of person I am. I feel like I am stronger because I have had to deal with this; more aware that I have seen other people just like me and some even worse; smarter because I now know how to deal with my disorder and how to figure out my goals. There are times when it gets rough but I learn from those times; how to handle my body differently; how to distract myself so I do not hurt myself; how to advocate for myself and how to make up work quickly at school; how to calm myself down. Things that help with my tics, are things like, petting an animal, crafting something (like a wreath), playing games on my phone, playing on my laptop, hanging with my friends, getting a hug, and just concentrating on something for a while. Since there is no specific medicine to cure Tourette, it has been experiments from day one. Try this, and try that. It gets frustrating when things do not work and it is relieving when medicines decide to help. And sometimes, the side effects from the medicine were not worth it. It was actually better to be ticcing than to be on a medicine that made me gain tons of weight, or have changes in my hormones, or get a huge permanent birthmark. From first grade through middle school, I would stand in front of my class and advocate for myself; telling my classmates about my disorder. I loved hearing when they had questions. It showed that they wanted to understand more about my condition and more about me. There were some kids that were not so nice, but everyone has those kids, regardless of if you have a disorder or not. I just kept myself away from those kids and kept moving forward. In high school, all the bullying magically stopped. It was probably because I completely switched school districts. But, I do have to admit that there were times where those kids got to me; made me wonder why I was not born “normal”. But in reality, there is no normal. You can be, whoever you want to be in life. I learned not to be the person that everyone wants you to be, but be the person that you want to be. Be a person that satisfies you. Do not let anyone stand in your way just because you have a disorder or you have acne, or you are not as smart as some of the other kids. That is just you. You are special in your own way. I have learned that throughout my years of dealing with this disorder, I cannot stop it. I could not prevent it. I was born with it. Just like people are born with blue eyes or freckles. Be who you want to be in life. Don’t let anyone or anything hold you back. I am living the life I want to live. I am making something of myself. I am going to succeed. For a while, I let my tics overtake me. And I was just getting lower and lower. I did not know if they would ever let up and stop. Finally my friends told me to hold my head high again and push through. So I did. And yes it was hard. But I succeeded. Maybe I will be able to tell more people about my disorder, the older I get. Maybe I can learn to advocate for myself better so that I can create a club. Maybe I can meet more people with similar or even the same disorder and we can discuss our problems and how we overcame them.

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.

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