2016 NJCTS Youth Scholarship Award Essay: “How I Changed My Life”

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!

KyleO

KyleO

At the age of five I was diagnosed with Tourettes. This is and will forever be the biggest struggle in my life. Not only has it affected me physically, it has also affected my social life and school experience. For me I have to go through the same pain everyday and try to find ways to overcome and look towards the future. Only recently have I taken this mindset and it has improved my daily life tremendously. Through the process of finding a way to cope with my disorder I have found many activities and interests that I never thought I could enjoy. I started communicating with people and managed to find hobbies that I genuinely enjoyed. Although my life so far has been a rough road it has led me to some amazing things I never imagined I could find.

I have always been secretly fascinated about why I tic and what triggers it. I have done research and have found many interesting things. My curiosity stemmed ever since I went to a Tourette Clinic when I was young and found out more about my condition. My personal dream is to be able to help people who have the same problems as I do which is why I want to study psychology or neurology. Becoming someone who could help others through their pain and relate to them is something that I believe can be very therapeutic for both parties. I have met others who have Tourettes and it was an amazing experience not only for me but for the people I met as well. The feeling of communicating with someone who feels the same as I do is an amazing feeling that I would gladly enjoy experiencing for the rest of my life.

Not only have I found myself in this journey but I have also found others. Social anxiety and fear have always held me back from communicating with people and drastically affected my grades and school life. One of the biggest factors that led me to combat this issue was the youth group that I am involved with at my local church. I’ve grown from a socially awkward child to a truly open and outward adult because of the people and experiences that I’ve come across. My youth group has become one of my favorite things in life because I know that I have people who want to accept me for who I am. Throughout the years of being in the program I have become a leader among my peers and have begun helping with many activities and plans that the church holds. Because of my involvement in the church I have started convincing myself to talk to new people and be accepting and confident of myself. By instituting this personal rule I have began to notice a steady improvement in my grades, social life, and the quality of life overall.

My personal skills and talents have also helped me further myself in many ways. This past year I built a computer from scratch. Building and modifying computers has always been one of my hobbies and could even lead to studying computer science. Ever since I was a child electronics have fascinated me and have led me to many things such as my passion for graphic design. Not only are these activities enjoyable but they are extremely therapeutic. I really hope that I can share these experiences with others so that they can look for a brighter future as well. By using my skills and talents to overcome my condition I have shown remarkable improvements in my life and my ability to make a plan for my future.

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.

2016 NJCTS Youth Scholarship Award Essay: “A Journey with Tourette Syndrome”

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!

JordanT

JordanT

Tourette Syndrome has played a significant role in my life ever since I was diagnosed in fifth grade. Initially, it did not pose much of a threat for me. I was still able to focus during school, which allowed me to continue my education and learning. I was grateful for that phenomenon, but it did not come without a caveat. Even though my facial tics were not very severe, I still developed a shyness and self-consciousness because of them. However, I was surrounded by a group of kind and accepting friends, which greatly alleviated my anxiety.

I was able to prosper throughout middle school with the support of my friends and family, but high school was a much different story. I am currently attending the Academy for Information Technology, a prestigious school dedicated to teaching students about the vast possibilities of business, information technology, and computer science. Unfortunately, I was the only student from my middle school who enrolled that year, so I was in a completely new environment. I was terrified at first, but I was able to overcome my fears and make new friends, just as friendly as the ones I had in middle school. The course work was much tougher than in middle school, but I was able to succeed in my academic endeavors. My facial tics were under control as well, so all was well in life.

My senior year of high school was a major turning point for me and my Tourette Syndrome. At the start of the year, I felt an immense weight on my shoulders because of all the new responsibilities I had to assume. With more demanding school work, the college application process, and my extracurricular activities, I felt swarmed with an enormous amount of pressure. And with the additional stress, the frequency of my facial tics skyrocketed. The first few weeks were probably the worst. During class and at home, I could barely keep my eyes open. Not because of a lack of sleep, but from incessant blinking, one of my most prominent facial tics. The warm summer weather only aggravated my symptoms. My self-consciousness also reemerged, as I was afraid people might start noticing my facial tics. I felt like I was hopeless, but I resolved to overcome this obstacle.

Senior year marked a new precedent for my Tourette Syndrome, but I gained a valuable trait from my facial tics as well. My tics were starting to impede my focus, so I knew I had to something or else my learning would suffer. One day after school, I went into deep contemplation and emerged with a strategy for alleviating my troubles. I realized my Tourette Syndrome was a medical condition, so I would not be able to just make it go away. Instead of trying to arduously suppress my facial tics, I decided to embrace my tics as a definitive part of me. Whenever I felt a sudden wave of facial tics about to occur, I would just let it wash over me and run its course. With this method of coping, I was able to maintain my focus and composure while doing my school work. It took some practice, but after a few weeks, I was back on track for success. My facial tics now seemed like involuntary actions, just like breathing or walking. With my new training, I acquired the virtue of patience, which has paid off time and again in school and life. I was confident in myself once again with inspired passion that I could overcome such an obstacle. Instead of seeing Tourette Syndrome as an adversary, I can now see it as a motivator to help me continually improve myself throughout life.

2016 NJCTS Youth Scholarship Award Essay: “Resilience Through Adversity”

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!

MadelynO

MadelynO

To be diagnosed with Tourette Syndrome is to be taken on a roller coaster that very few people can comprehend; its a fierce, vicious whirlwind of nerves carefully tucked behind a constant burning desire to be “normal”. For me, Tourette’s showed itself in ways far more complicated than tics. It came paired with anxiety disorders and insomnia that, at times, seemed to take over my life. During early childhood, Tourette’s was my worst nightmare; I went through school living in constant fear that my classmates would notice my tics and ostracize me for my differences. Through the duration of middle school, one seemingly small tic caused anxiety beyond anything I had experienced before. It was my eye-rolling tic, a tiny movement seen by teachers as the ultimate sign of disrespect. When this tic became a problem in school, I had no option other than to tell my teachers, and subsequently my fellow classmates about my Tourette’s. The time in my life that I experienced this was difficult; anxiety overwhelmed me daily to the point that on some occasions I couldn’t go to school. However it was this difficult time that made me the person I am today. As I grew older I began to see the gifts that Tourette’s has given me. It has taught me to be resilient, never giving up in the face of adversity no matter how great the challenge. As I grew older, I became a firefighter, swimmer, and US Naval Sea Cadet, all challenging, yet rewarding endeavors, that I likely would have never attempted without the courage and strength I learned from having Tourette’s syndrome.

Through the process of growing into the young adult I am today, my diagnosis of Tourette’s Syndrome has never ceased to open windows of opportunity in my life. At the age of 13 I was selected as the sole New Jersey representative to attend the Tourette Syndrome Association’s youth ambassador training.This training equipped me with the tools I would need to advocate for myself and others, as well as taught me a great deal of leadership skills that would prove to be important in the future. Today, my experience with Tourette’s has come full circle. As a petty officer third class in the US Naval Sea Cadet Corps, I faced many challenges. These hurdles came quickly and never seemed to end, from trying to remain in a statue-like state, to nights with very little sleep, getting to the rank of petty officer was not an easy feat. My efforts were rewarded, however, in September when I became the squad leader for eight middle school, and four high school students. When I met my eight younger cadets last fall, I quickly learned that many of them had neurological disorders themselves, from Asperger’s syndrome to dyslexia. My experience with Tourette’s and associated disorders has given me the ability to create an effective path for communication with my cadets and their parents, as well as taught me how to promote unity within my squad. Seeing my cadets’ confidence blossom, and their leadership skills take off at our annual inspection was one of the most proud moments I have experienced in my lifetime. As I prepare my cadets to go to a two-week boot camp this summer, I realize for the first time just how great a gift having Tourette Syndrome is. It allows me to do the unthinkable, it allows me to understand the misunderstood.

Struggling with tics and anxiety and looking for support

Hi! My name is Hannah, and I have been struggling with Tourette’s for about 6-7 years now. I was never formally diagnosed, though. However, I was diagnosed with depression, ocd, and have multiple symptoms of ADD, however I don’t know if that’s just because of my tics or not. Ever since I was a kid I have done weird tics that made others look at me like I was crazy. I used to push in on my stomach almost as if I was trying to hurt myself. That was where it started. I then developed head-banging & hand shaking symptoms. That was in 4-5 grade. (I still have those 2 to this day & I am a junior in high school) My first vocal tic was a noise I would make as if I was trying to mock a frog. Followed by constant throat clearing and grunting. Those two have also lasted to this day, however the frog noise lasted around 2 years. By seventh grade, I started feeling extremely depressed and I got prescribed 40mg of Prozac to try and help my depression and anxiety. Once I started taking that, my tics continued to get worse. I was still feeling depressed for about 2 years and I developed new tics. They included eye blinking, kicking my leg, having to touch something with my right hand after it touches my left, mocking facial gestures of others (especially on tv), mocking others noises, thumb clicking, shoulder shrugging, jaw clenching, and a few others that were minor. (One that I have developed recently (within the past year) is that a few nights a week or when I am taking a nap, I’ll be in the middle of sleeping/ falling asleep, and I will wake myself up by shouting a random word that I have no control over.)They seem to get worse when I’m thinking about them, but they get better when I’m either doing math or art. I am an honors student in Highschool and make all a’s, which is why my mother never felt like it truly affected me as much as it does. It may not affect me so much academically, but socially and physically it is terrible. Yes, I have a small friend group that knows about my symptoms and makes sure to accept my flaws, but in an uncomfortable situation, or around new people, my tics begin to spiral out of control to where I even sometimes have minutes at a time where my whole body starts shaking and all of my tics go off at once. A lot of the time, I can suppress my tics when I am trying to attract as little attention to myself as possible. However, the longer I hold it in, the worse the urges get. Once I let it out, it all comes out at once and I can’t control it until it takes its toll. I am scared that this will be difficult for me when I apply for a job or try to do anything on my own when I graduate highschool. I have extremely bad social anxiety as well, so the job interview is the scariest part of a job for me. If I am not familiar with the person I get nervous and my tics start to spiral, motor and vocal. I always feel like an outcast because people just don’t understand. I would be so thankful if you would accept all of my efforts to join this blog! I have been looking for a support group and people to talk to that share similar struggles as me and this would be an amazing opportunity! Thank you so much for reading this it really means a lot to me.

Side note:

There are also other minor tics that I do excessively that I never knew were tics until I researched this subject. Such as nail biting, lip biting, knuckle cracking, etc. I didn’t know if those were relevant or not as many people do those things when they get nervous.

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.

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.

2015 NJCTS Youth Scholarship Award Essay “MAGGIE tics quietly in the background”

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!

MargaretE

MargaretE

Sometimes, to make it stop, I say Val’s monologue from A Chorus Line. Other times, I translate the prologue from Romeo and Juliet into French: deux maisons, plus

similaire en dignité, en la Vérone belle ou nous poser notre scène… I bought a Tangle to stop my arms, and before that, I used Silly Putty. Lots and lots of Silly Putty.

I was diagnosed with anxiety, ADHD, and Tourette’s Syndrome when I was fourteen years old, after I developed a vocal tic resembling hiccups that began to disrupt my classes. Tourette’s is defined in the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) as a chronic tic disorder wherein multiple motor and vocal tics have persisted for more than one year. Motor tics include things such as blinking, shrugging, or jerking limbs, and vocal tics can include things as simple as clearing the throat, but can also include full words and other complex vocal tics. Tourette’s often comes with a myriad of other comorbid disorders-like OCD, Anxiety, ADHD, and Bipolar Disorder.

The thing about living with Tourette’s Syndrome is that it makes me feel out of

control. I can’t stop my neck from contorting into uncomfortable angles. I can’t keep

myself from screaming. I can’t just not tic.

When I hear the phrase “you can’t”, I take it as a personal challenge. There are very few things we as people truly “can’t” do—most of the time, people misconstrue “I can’t” to be synonymous with “I don’t want to”. There is so much in my past I didn’t want to do that I eventually overcame—I didn’t want to interact with other people because I was scared that I would be judged, but eventually I overcame social anxiety. I didn’t want to deal with having panic attacks because I thought it was too hard, but eventually I learned techniques to handle them better. I didn’t want to work through my ADHD because it was easier to let it be an excuse, but I managed to let go of my distractions and perfectionism. After all of this, I thought I’d kicked the phrase “I can’t” out of my vocabulary. But, it turns out, I can’t just stop ticcing.

Tics can be repressed for periods of time, but it can lead to increased tic activity later on. This means that the best method for keeping tics at bay is distraction. Like I said before, fidget toys and monologues are incredibly helpful, but the best method I have found for stopping my tics has been by far the simplest—being happy.

When I sing, I feel absolutely free. When you try to belt, you have to provide a certain amount of breath support to keep from straining your voice. It’s hard, but when you do it right it’s the best feeling in the entire world.

When I’m acting, I’m no longer myself. I’m living another life, in another world, that always has a script. And (usually) that script doesn’t include “MAGGIE tics quietly in the background”.

When I’m with my friends, no one’s going to judge me. When I’m expressing myself, when I’m having fun, I’m not worried about when I’m going to tic next. My focus is so far away from my Tourette’s, it’s almost like I’m how I was before my diagnosis-when there was nothing I couldn’t do.

Youth Co-Chair believes people won’t be sorry if they come to NJ Walks for TS at Princeton on March 29

NJ Walks for TS at Princeton is a 5K walk and family fun run on March 29. With a little more than 2 weeks to go, now is the best time to register and start getting in shape for spring.

“People won’t be sorry they came,” Youth Co-Chair Ethan Lederman said. “They’ll get exercise, meet some great people who have TS, and support this very important cause.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder.

“It can be really, really difficult to live with TS, because you usually don’t just have TS but TS and a bunch of other disorders,” Ethan said. “It helps if you’ve known someone with TS because it’s hard to describe how it can affect your life and you might be more sympathetic about reminding people not to stare or assume you’re just a ‘bad kid.’ ”

Ethan met Tess and Paige Kowalski through the family retreat weekend program of the New Jersey Center for Tourette Syndrome (NJCTS). Tess and Paige both have TS, and Tess is the teen responsible for bringing NJ Walks to the Princeton area.

“We’ve had a lot of the same struggles with TS,” Ethan said.

Ethan and the Kowalski’s also share an interest in educating the public about the disorder. Through the NJCTS Youth Advocate Program, the teens travel throughout the state meeting with political leaders, and delivering trainings to peers and healthcare professionals.

“This year, I got to speak to a state senator and Senator [Robert] Menendez’s staff on all the ways I’m very grateful to have NJCTS,” Ethan said. “TS isn’t something people talk about very much. I’m very proud to be part of the walk because I know it will be a good one. It is very important because it spreads awareness of TS, which not that many people really understand.”

Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

“NJ Walks for TS is a one-of-a-kind event for kids, by kids,” NJCTS Executive Director Faith W. Rice said. “Our Youth Co-Chair committee is working hard to spread the word and invite the public to join us in a celebration of awareness, advocacy and acceptance.”

With spring and warm weather around the corner, now is the time to prepare for one of the first 5Ks of the season, or simply a stroll with friends and family. Registration and donations can be made through www.njcts.org.

New Jersey teen wants to see more acceptance and education

NJ+Walks+for+TS+LOGO2Hallie Hoffman wants you to know that people with Tourette Syndrome (TS) are more than just their diagnosis.

“TS is just one group we belong to, just as people may identify themselves with other groups such as athletes or musicians,” she said, “TS is not a disorder that puts people at social odds with others, as it is sometimes portrayed in the media.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school-age children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder. Hallie is one of them, and she joins other teens as Youth Co-Chairs for this year’s NJ Walks for TS at Princeton.

NJ Walks for TS is a 5K walk and family fun run at Mercer County Park on March 29 by the New Jersey Center for Tourette Syndrome (NJCTS). The event raises awareness while breaking the stigma attached to the disorder.

“Our mission is one of acceptance and education, and we need the public’s help to accomplish this.” said Hallie.

To help is to attend the walk or donate. Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

Education is a very powerful tool in fighting the stigma attached to this disorder, and Hallie knows this well. Her interest in learning more about TS led her to invite a speaker to her school to talk about the disorder- before she even had a diagnosis.

“Even though I knew I had TS, my parents were afraid that if I got the diagnosis, I would be bullied by my peers,” Hallie said. ” It was my interest in educating others about TS that helped me confront my parents about getting a diagnosis, and shortly after I became trained as a Youth Advocate for NJCTS.”

Youth Advocates travel to schools and hospitals to train students and healthcare professionals about TS. Last summer, Hallie was in the first class of the Tim Howard NJCTS Leadership Academy.

“Young people with TS are a force, they are motivated and dedicated to helping their peers living with TS and other neurological disorders,” NJCTS Executive Director Faith W. Rice said. “NJ Walks for TS was founded for kids, by kids- and the work they are able to accomplish will help a new generation.”

Hallie is counting on the public to make this year’s event bigger than ever.

“Not only is [NJ Walks for TS] really fun, but it’s a great way to be a part of a larger goal,” she said. “A 5K may not seem that important, but the support shown and the money raised make a huge difference.”