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.

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

Skiier races toward Tourette awareness

KylaKyla, a sixth grade student from Oak Ridge, represented the state of New Jersey in Gilford, New Hampshire at the Pice Invitational Ski Race last month for the second year in a row. Kyla was invited to participate in this race because she placed in the top 10 ski racers in her age in the tri-state area–in fact, she placed third in NJ this year! Kyla was diagnosed with Tourette Syndrome in third grade and never let it hold her back. Today, she is raising awareness for TS and she’s asking the Mayor to recognize June 4 as Tourette Syndrome Awareness day in Jefferson Township. She is certainly one of The GreaTS!

Join Kyla and NJCTS in getting towns all across New Jersey to recognize June 4th as TS Awareness Day!

KylaButlerawd

Kyla received her trophy at the NJSRA Banquet.

Kyla received her trophy at the NJSRA Banquet.

2015 NJCTS Youth Scholarship Award Essay: “Defining Myself”

This is an anonymous essay submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. We hope you enjoy it!

As I think about my journey in life so far there is a central theme of determination that truly has identified who I am. Around the third grade I became distracted just trying to manage what seemed like ridiculous and annoying random movements. These daily distractions interrupted my life as a child and so after many months of medical tests, I was diagnosed with Tourette’s syndrome. The diagnosis gave me some answers and peace of mind yet I still struggled with many unanswered questions. I used to think that if I could just control the tics then I could get on with my life. However; it took medication and several types of therapy to help mask some of my tics. Sports were always a great distraction for me and became a stress releaser. I played just about any sport there was like travel soccer, baseball, lacrosse and eventually power lifting. While on the field I was free to be me and my opponents simply focused on the athlete in me and not necessarily the boy with Tourette’s. I have personally experienced the positive impact that sports can have on your confidence and sense of personal achievement. I have also witnessed the satisfaction and sense of accomplishment experienced through working as part of a team.

Furthermore, I have experienced roadblocks such as being asked to take study hall instead of wood shop and endured the brutality of bullying due to my condition. By the way, I took wood shop and earned an “A”. Fortunately, I have also always had the benefit of being part of a very close family which has motivated me to stand up for myself. They have continued to believe in me and encouraged me to be the best person that I can possibly be. I do not let difficulties stop me from succeeding, but accept the challenge to remain focused on my goals.

Staying focused on personal goals gives me purpose. I know that so much can be learned from sharing personal experiences with others. This gives us the insight to realize that even though we come from different backgrounds, origins or statuses that we all face many challenges. These challenges may not be obvious at first sight but they shape the people we have become. I know my perception of others has changed especially while working with special needs kids. Through the special needs soccer program I have experienced firsthand how a sense of accomplishment can brighten the face of a child. Each person has the ability to impact another person’s life and talents to share.

Finally, I think that having Tourette’s has made me even more determined to prove that I am so much more than a person with a condition. I am a person who sets goals and works tirelessly to reach those goals. I know that hard work and passion are what defines me. I will continue to follow my path to discover my destiny.

Exercise … why don’t I?

I wrote a post recently, Positive Distractions, in which I listed six things you can do when feeling low or anxious or just really ‘meh’. I have been thinking more about the things I wrote in that post and thought I would share what has been on my mind. So, in a way, I suppose this post is a bit of an update or part two of that post.

First of all, it has been bothering me that I posted six distractions. Don’t ask me why. It just has. It just isn’t a comfortable number for me.

Next, I would like to inform everyone that I have officially bought a NEW COLORING BOOK! Yay!

Thirdly, and the actual reason for this post, my fiancé and I played tennis the other night. We have been talking about doing this for a while now. So, we met at a local park when I got off work one night earlier this week to play. It was a very interesting experience. During the two hours we were there, the ball strayed outside the fence twice. I think I was finally starting to be able to return the ball sometime in the last half hour. I’m sure I looked ridiculous flinging my racket through the air and hitting…..nothing but air. Needless to say, I am horrible at tennis and Jacob had a good two hour laugh.

I learned two great things that night. The first of the two is something that I learn over and over again. I learned the importance of being able to brush off a failure, laugh at yourself, and start all over again. It is also what I am officially making number seven on my list of positive distractions.

Do something ridiculous, make a fool out of yourself, and laugh about it until your sides hurt! Go out and play a sport you are super terrible at with a friend and laugh at yourself. Or don’t go out. Just do something goofy and laugh at yourself until you can’t help feeling good. I know that sometimes it’s just not that easy, but when you do find yourself laughing uncontrollably at the fool you have made of yourself, you tend to feel so much better. Besides, laughing at yourself is so much better than sulking about something. I could have just given up, figured I would never get the hang of it, and ruined not only my night, but my fiancé’s as well.

The second thing I learned is something I knew once, but gave up on and ignored altogether. If you read the positive distractions post, you know that I said that I felt like a bit of a hypocrite for suggesting exercise because I really don’t utilize that one…..like ever.

Here’s the thing. I actually used to run a lot. I started taking walks just to get out of the house and clear my head

It was a great distraction and it felt really good to get out. There is just something about exercising that causes you to feel really good once the initial shock and feeling like you are going to collapse if you make another move passes. I eventually made enough progress that I started running occasionally. Occasionally eventually turned into everyday runs in the ridiculous Missouri summer heat, which included crazy humidity and heat indexes over 100 degrees.

I replaced all my negative coping skills with exercise. The problem is that I became absolutely obsessed with working out. I ran in unhealthy conditions. I didn’t eat well, ran in dangerous temperatures, and literally felt like I was going to pass out by the time I reached home on several occasions.

So, why don’t I exercise like I know I should? Well, I’m not going to try and make excuses. I know that I need to start doing it more often and on a regular basis. It is a great stress reliever and simply makes me feel great in general! So, here’s to accepting and admitting the truth. I don’t exercise enough. I realize I need to do it more often and more regularly. I also have to not let it become an obsession. I have to be smart and cautious.

We have to be careful not to let positives become negatives. It is so easy to let what is good for us get out of hand and become unhealthy.

Stay Safe, Stay Strong, Stay Beautifully Imperfect. Bye!

Tic-tic BOOM!

Hello all! I’m going to be frank; I’m new to the blog-world. Please forgive me if I sound too formal/don’t sound formal enough/don’t interest you/etc. etc. etc. I’m trying this out, and we’ll have to see if I have ANY skill. Perhaps I’m the next “Reality Steve”. Who knows?

OK. Since I’m aware this is ACTUALLY a wholesome teen blog (by the teens, for the teens) about Tourette Syndrome, I’m going to change topics. Hi! I’m Sarah! *Cue the “Hiiiiiiii Sarahs”* I’m a 17-year-old high school senior. When I was 7, I was diagnosed with Tourette Syndrome in 10 minutes flat. My parents were left with an uncomfortable diagnosis, no direction, and a tic-ing time bomb (see what I did there?). Not knowing what to do, they decided to keep quiet. No one knew about my TS until I hit the third grade. Only then did we realize as a family that silence only led to confusion and misunderstanding.

Since then I’ve been certified as a Youth Ambassador for Tourette Syndrome, and I’ve spent a great amount of time and effort presenting to more than 3,000 children, teachers, and doctors in order to displace the myths and stereotypes associated with this medical condition. It’s been a long ride, but also a great one. Now I’m here.

I sing, dance, act, and play a host of sports. I love long walks on the beach, and I’m a total catch 😉 haha. However, jokes aside, I’m a girl who has learned, with a lot of practice, to overcome any obstacle Tourette Syndrome has ever thrown my way. I’m proud to say I can do anything and EVERYTHING I set my mind to, and I live for that challenge. My advice? Show everyone what you can do, and don’t apologize for everything that makes you great—including your TS. It’s a part of you. It’s a part of me. But it ISN’T ME. I’m greater than a diagnosis, stronger than the sum of my parts. I can’t wait to share myself with you.

Tic-tic BOOM!

2014 NJCTS Children’s Scholarship Award Essay: “I Have No Regrets”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

When the word “disease” is said, overcoming is definitely not the first thing that comes to peoples’ minds. In my opinion, having Tourette’s is a battle. I have been bullied, ridiculed, and laughed at. I think a lot about the kid I could have become, that is, if I surrendered. But luckily, I didn’t.

I managed to muster the strength and courage to face my problem. In fact, I sometimes convince myself that I no longer have TS. I have accepted the fact that I will never be cured of this. So what does this mean for me? Hide behind excuses for the rest of my life? Succumb to being a nobody? Not anymore.

Ever since I entered high school, I slowly started to see the best out of every situation. I have used my tics to my advantage by channeling my energy into something positive: setting goals and achieving them. Why should I let TS get in the way of challenging myself? I found that I can use this obstacle to my advantage.

When I was in middle school, I definitely didn’t have the same optimism about having TS as I do now. Unfortunately back then, I fell into the trap of self-pity. I would always make excuses for myself. I didn’t challenge myself in school because I thought my mental abilities weren’t sufficient for mainstream classes.

My bizarre motor tics made me feel out of place and ashamed. My fear was that people would make fun of me, especially this one tic in particular (that I still have today) where I tweak my neck to the side to feel temporary relief. If I held my tics in, I felt like exploding. Often times I would tic then nonchalantly try to cover it up by using “normal” gestures, such as cracking my neck.

Once I gained the courage to move into mainstream classes in my last year of middle school, things weren’t as bad as I had anticipated.

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2014 NJCTS Children’s Scholarship Award Essay: “Anything is Possible”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

For most children, strep throat implies symptoms of a fever and difficulty swallowing. However for me, the strep virus attacks the neurological system, resulting in Tourette Syndrome. In general, symptoms are inconsistent and not easily recognizable because each patient has his/her own tic profile. My first symptom was an intensely competitive mindset. I was unable to tolerate losing. But, as time went on, my attitude evolved from being focused on winning, to winning when I perform at my best.

This winning attitude is best explained through my experiences as an ice hockey goalie. In hockey, you may think that tics would interfere, especially as a goalie. Surprisingly, I have learned that when I channel my focus on the game, my ticcing is inconsequential. Although I tic on the ice by opening and closing my glove repeatedly, I do not let it affect my game; proper mentality can conquer anything, even a twitch. This was one of many lessons learned on the ice that made me who I am off the ice.

Growing up with a Tourette’s tic that drove me to peak performance helped me learn that hard work creates success. Even when I was not on the ice with my varsity team, I benefitted from my positive mind-set. I used other practices with my club teams, private lessons, and skillenhancement exercises at home to keep my game at its best. During my junior year in high school, I was still competing for playing time on the ice hockey team.

The bottom line is this: whoever is best will be the starter for the next season. In hockey, a single moment can change everything. It can change the possession of the puck, the score of a game, and even a season for a player. My season changing moment was during a game against Montgomery High School.

Coming on to the ice against a fired-up team did not faze me; it fueled me. I knew I needed to prove to my coach that I was the best and I would do whatever it took. With a close game nearing the final buzzer, one of the Montgomery top scorers broke away from the pack. As he raced toward me, I came out of the net to cut-off his angle. He fired a shot so fast I could barely see it. I knew this moment would influence my senior year season.

I caught the puck in my glove while sliding into a split. After my save, my team scored another goal to secure the lead at 2-0. After the game my coach hugged me. At that moment, he knew I was a winning goalie and I knew I would be his goalie for the next season. More importantly, I learned that anything can be accomplished with hard work and a winning attitude. I have never felt sorry for myself for having Tourette’s, and at that moment, I became grateful for having this be apart of me.

My Tourette’s tics taught me lessons that shaped who I am today. I learned that I can do anything I set my mind to. As I was absorbing these lessons and incorporating them into my hockey and life as a whole, I was inspired to document this quote and hang it over my desk: “Never giving up is not repetitive failure; it’s a strategy.”

For some, Tourette’s is an annoying neurological disorder to be managed. For me, it has taught me what is possible. I am even more appreciative of my brain and what it has to offer.

2014 NJCTS Children’s Scholarship Award Essay: “Forge Ahead”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

As a person who lives with Tourettes and ADHD day in and day out, I see it as a blessing rather than an obstacle. Yes, growing up with Tourettes was hard and, yes, people told me there would be certain things I couldn’t do, such as pitching for a baseball team or sitting in a normal class room, but that didn’t stop me from trying and ultimately succeeding. Tourettes has given me much more than anything I could have asked for. It has given me a work ethic, a greater respect for my body and mind and a will to succeed at all costs.

I remember like it was yesterday, standing in my back yard, baseball glove in one hand ball in the other. I would practice standing still from the stretch for hours, Making sure I didn’t twitch so the imaginary base runners wouldn’t advance. It was one of the main reasons why I wasn’t allowed to pitch in games, I would be called for a balk. It was a habit of mine to twitch while standing still for a few seconds. Coaches wouldn’t allow me to pitch again.

So I decided to fix this problem myself or try to overcome it. I developed a work ethic at a very young age from this; and it has paid dividends once I went to high school. I now proudly say from work ethics, I am the ace of my school pitching staff and I am one of the top 5 pitchers in my county.

As for academics, I am not number one in my class but I am a tremendously hard working student. Working hard has rewarded me with maintaining a 4.0 GPA in high school and making honor roll every year. I’m proud to say that Tourettes has not prevented me from doing what I love, instead of dwelling, I conquered!

Furthermore, Tourettes has instilled a trust within my mind and body, Coaches can read my face when I feel like I’m losing control of my body. A big joke is where in world has Michael gone? I look inside my mind and go to a safe place where nothing or no one can make me twitch.

A place that I have control and everything is safe and I pitch with ease. I know that nothing comes easy in life and in order to succeed you must work hard. Tourettes has taught me that. Nobody can take away the fact that I have overcome so much and still continue to do so. I wouldn’t change a thing in the world if I had the chance. I welcome adversity because it is just another obstacle that pushes rne to succeed.

My mind and body work hand in hand and when I am fully concentrated, I know Tourettes will not slow me down if I want the end result bad enough. People love to have doubts and the best way to shut these people up is to accomplish something extraordinary, and although doing well in school and sports settings isn’t anything too special, it still made people eat their words.

When there is a brick wall in the way, a person has two options, give up or break the wall down. Tourettes is that brick wall standing in my way, I chose not to turn my back and give up, but rather do everything it took to thrive in that certain situation. Nowadays, people quit on things like its nothing, which is unacceptable in my life.

You cannot let something get in the way of whatever it is you want. You make your own story, your own destiny, no one else can. Having Tourettes has given me that will to succeed; it’s given me the ability to go an extra mile to get my end result. I credit Tourettes for much of the accomplishments in my life; it goes to show that hard work truly does pay off.

As my years have been short, my accomplishments have been great and I plan to tackle the rest of my life with the same force and learn to overcome the obstacles Tourettes may continue to put in front of me. One day I plan on being a role model for young children especially boys who are afuaid of what the diagnosis of Tourettes could mean to them. Forge ahead and you can make anything happen in your life and continue to knock down those brick walls.

2014 NJCTS Children’s Scholarship Award Essay: “Born to Stand Out”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

At a young age, I was faced with a choice. Let the diagnosis I just received define me, or accept it as part of who I am and embrace life head on. I chose the latter. I was diagnosed with Tourette’s, OCD and ADHD.

When some people hear Tourette’s, they automatically think of society’s inaccurate portrayal of a disorder where people shout out obscenities or inappropriate words. They treat it as a joke, as if people who live with Tourette’s choose to do the things they do, or could stop it if they wanted to. Very few people understand what having Tourette’s is really like.

Over the years, l’ve experienced a wide range of tics. My motor tics included excessive blinking, sniffing, jerking my neck, and popping my shoulder, often making everyday life uncomfortable and awkward. l’ve had vocal tics where I would constantly clear my throat, grun! or make strange noises that would often draw confused and disapproving looks from those around me.

Living with this disorder has been far from easy, fraught with physical pain and many ups and downs. When I was younger and just learning to cope with my Tourette’s, my tics would make it difficult to focus in class. Having an eye blinking tic or neck tic would make it difficult to read. Nevertheless, I pushed myself to make the honor roll every marking period from third grade on.

Whenever the classroom got quiet and the teacher was speaking, I would feel the eyes of my classmates burning deep into the back of my neck. lt was as if they had laser vision, with eyes fixated on me, examining my every move. Regardless of whether anyone was looking or not, I was different, I stood out and thought they were staring at me.

I would try to suppress the tic. But that’s just like trying to stifle a sneeze or resisting scratching an itch. Eventually you just have to do it, just as I do when the urge reaches that point of becoming no longer bearable. With time, therapy, and educating myself on Tourette’s, l’ve learned to adapt to the struggles this disorder entails.

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