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: “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: “I have Tourette’s, but Tourette’s doesn’t have me”

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

PatrickM.

“I have Tourette’s, but Tourette’s doesn’t have me” is a quote that I have lived my life around. Nine years ago, when I was eight years old I was diagnosed with Tourette syndrome. I’ve had to live with this disorder for the majority of my life now, and I’m proud to say that I’ve overcome it and persevered through the struggles it brought. Most importantly, I haven’t let it get in the way of me being successful, well rounded, and involved in my life.

One special thing about me is that I am an extremely loving and caring person that will always put others first before I think about myself. I am involved in the TOPS soccer program, where you have a buddy with special needs that you play soccer with on Saturday mornings. My buddy Justin was very important to me. I ended up becoming very close to him and I couldn’t wait to see him every weekend. I am also in the Key club at my school where I do a lot of volunteer work to help various causes and people. Out of all the volunteer work I’ve done, one of the standout favorites of mine that I’ve participated in was Letters to Santa. I love children so this was especially fun for me. For this event I stayed after school numerous days and acted as Santa, replying to children’s letters they wrote to Santa.

Something else about me is how I haven’t let Tourette’s stop me from getting involved. In my school I am in many clubs such as DECA, Math league, Science League, and Key Club, all of these in which I participate in heavily. I was also on the soccer team in high school and this taught me many things about teamwork and being a leader. This eventually led to me being nominated by my coach to participate in the Sophomore Leadership Academy. This was a full day event where kids who showed leadership qualities were nominated by their teachers/ coaches and gathered together to be taught how to be better leaders. I was extremely honored and humbled to receive this nomination and I will continue to show the leadership qualities I have while attending Saint Joseph’s University.

Another thing that I am extremely proud of is my ability to excel academically while dealing with my Tourette’s. Throughout my four years of high school I have made Honor Roll or Superintendents List consistently. I am also currently a part of the National Honor Society. I attribute this success to my hard work ethic. I am an extremely hard worker and always give 110% in every task that I take on. My hard work also helps me during my job which is working at Visalli’s Farm Market. Working at a farmer’s market can sometimes be tough, especially during the summer in the scorching heat when I’m out in the fields. However, I always give it my all no matter the circumstance. I plan to bring my hard working attitude along with me to Saint Joseph’s University and to contribute wherever I can.

I will continue to persevere and be successful in my life while battling and beating Tourette’s. So far in my life I haven’t let this disorder hold me back from participating in many different activities and I will continue that trend at Saint Joseph’s University.

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.

Applications for 2015 Tim Howard NJCTS Leadership Academy accepted through January 30!

The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity and will be accepted through Friday, January 30.

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially.

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Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

Tim Howard NJCTS Leadership Academy was amazing!

Two weekends ago, my sister and I went to the Tim Howard NJCTS Leadership Academy. It was such an amazing experience. I made so many new friends and I learned so much! We had the opportunity to hear from medical professionals and learn more about our disorder. We worked hard while we were there, but we had so much fun. We immediately bonded with everyone there, and I would highly encourage others to go!

Change someone’s life by being a part of a Tourette walk

This is me and a friend of mine at NJ Walks for TS at Mendham in 2011! We hope to see you there in November!

This is me and a friend of mine at NJ Walks for TS at Mendham in 2011! We hope to see you there in November!

Young people these days have been advancing their technology in so many different ways, and I think that it is so important to channel and use technology to learn and research about what is going on in your community. Not many young people realize how big of an impact they can make if they take a few hours, or even minutes, out of their day to read and care about an issue.

When I started to take time out of my day four years ago as a sophomore in high school to channel my energy into learning about Tourette Syndrome, a great event, great friends and great opportunities came out of it. The stories I have heard and the people I have met through the annual NJ Walks For TS at Mendham have touched my life in a way that is indescribable.

Having adults, as well as small children, come up to me and personally thank me, my friends and my family for our efforts and support is a feeling that I would never give back and give everything for more people to experience.

This event has grown throughout the past several years and will continue to grow. Everyone that has become a part of the event — this year’s walk on Saturday, November 23, will be our 4th! — has enriched their lives not only in feeling good about themselves, but also learning about personal experiences of those with TS. Continue reading