An empowering, invigorating, life-changing experience

In 2014, NJCTS introduced the inaugural Tim Howard Leadership Academy—a four-day intensive program for high-school-age teens with Tourette Syndrome, held in August at Rutgers University. The experience was life-changing for the participants and we are thrilled to be able to bring it back this year. Recently, NJCTS Tim Howard Leadership Academy Alum Hallie Hoffman wrote about the profound impact the Academy had on her. 

Imagine you are a teenager, and you have come to a place where there are many other kids your age. Many of them share similar interests as you, and all of you have come here to learn and have fun. You will meet adults who are proof that you will do fine in life. You will learn about many different aspects of yourself—physically, emotionally, and socially—and you will feel comfortable sharing these because no one is judging you here. You will talk and laugh with kids whom you have become closer with in only a few days than people you have known for years. You all came here because you share Tourette Syndrome, but what strikes you the most about the other kids is everything except that. You see them as athletes, musicians, actors, writers, dancers, and now friends. None of them are defined by their tics, and you know that they don’t define you by your tics either. Most importantly, everyone gets it. They understand the sadness, anger, frustration, shame, and fear. They know what it is like to feel alone, to feel different. But in this moment, none of that exists anymore. For the first time in many years, possibly even your entire life, you know that you are exactly where you are supposed to be.

This is the NJCTS Tim Howard Leadership Academy. Last summer, I had the incredible opportunity to be a part of the inaugural group, and it was a life-changing experience. Prior to the Academy, I had never met more than a few kids with Tourette Syndrome, and I had never met an adult with it. At the Academy, I was able to clearly see that I am not alone. Talking with such confident and accomplished adults who also have TS gave me the confirmation that I needed to know that TS will not stop me from getting where I want to be in life.

It was not until I went to the Academy that I realized how much I had unconsciously suppressed my tics. Knowing that my tics didn’t require an explanation and that no one would feel uncomfortable by them gave me the freedom I needed to let them out. In doing so, I learned just how exhausting it had been to always attempt to filter my tics. Most incredibly, my tics quickly lessened because there was no added stress or effort to suppress them.

I remember the one night that a group of us huddled together around the piano, joking about how talented people with Tourette’s are. After singing many different pop songs and show tunes, we finally sang “Let It Go” from Frozen. As soon as we had finished, all of us realized at the same time that this was the perfect theme song for people with TS. The words “Let it go, can’t hold it back anymore,” and “Let the storm rage on, the cold never bothered me any way,” were a perfect narration for our lives.

Those three days were some of the best of my life. I met so many incredible kids and coaches, all of whom have inspired me. Learning about other people’s lives with Tourette’s helps me understand that I am never alone, and that there are so many others who understand my struggles. I still use everything I learned from the Academy, including everything from how our brains work differently, to study skills to help us in school, and even ways in which to relax that can lessen tics. One of my favorite activities, hearing from a panel of adults with TS, was an incredibly honest and enlightening experience. All of the participants had so many questions that had been on our minds, such as how TS can affect us in college, jobs, and relationships. The coaches answers were amazingly truthful in a way that brought us all together, and they reassured us that while there are struggles ahead, everything will be okay.

I am beyond excited to have the opportunity to return to the Academy this summer. I cannot wait to see the friends I made last summer, and I look forward to making many new friends as well. What is so amazing about the Academy is that it is something that never gets old; even though I went last year, there is always so much more to take from this experience. The Academy is a place where kids with Tourette’s can come together and grow, no matter where they are at in their journey when they first arrive. I know that this year I will learn a completely different set of lessons and skills, because I am at a different place in my life than I was last year. It is with this flexibility and focus on both individuality and the community that the Academy is able to offer so much to every person who comes.

I truly wish that all kids with Tourette’s could attend the Academy. It was such an empowering, invigorating, life-changing experience for me. Because of the skills and confidence that the Academy gave me, I was able to really start to speak out this year and be comfortable in who I am. A famous soccer goalie says to kids with Tourette’s, “You can do anything any one else can do.” This is what the NJCTS Tim Howard Leadership Academy has taught participants such as myself, and I look forward to this year when it will continue to spread this message of acceptance, self-esteem, and empowerment.

2015 NJCTS Youth Scholarship Award Essay: “The Climb”

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

JordanS

JordanS

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

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

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

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

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

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

2015 NJCTS Youth Scholarship Award Essay “Not a Definition”

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!

NolanK

NolanK

I was diagnosed with Tourette Syndrome when I was seven years old. At that age, it did not bother me much, and was not severe. It did not even cross my mind often at all. As I grew up, in my little, close-knit town of Lyndhurst, the tics did increase in severity. Naturally it started to bother me more and more as time passed by. In Lyndhurst, everyone seems to know each other and is friendly towards one another. This fortunately ended up benefiting me when it came to my TS. In elementary school, I went to class with the same thirty kids every day of every school year. I was very much respected by all of my teachers, classmates, and coaches as well. I lived a happy childhood with great friends who I loved so much, many of whom I am still friends with today. As I look back, I think about what an amazing,happy life I’ve had. I think about how appreciative I am, because I have lived this incredible, happy life that I am so grateful despite having TS.

This past year, I have come to realize that the best philosophy that any person with Tourette’s could have is that it does not define you. Little did I know that this was subconsciously my mentality throughout my whole life. It took me a few years to actually build up the courage to tell people about my disorder when they had asked about it. Before that, when people unknowingly asked about my tics, I would act as if nothing happened. Even then, it did not occur to me that the disorder I had was seen as something that stifled children from living a normal, happy life. I kept being myself and it worked. I acted as if there really was nothing wrong with me, because that was how I wanted to be viewed by others. I really was a normal kid who played sports, hung out with his friends as often as possible, and received excellent grades. Everything else in my life followed suit.

As I anxiously began high school, I told myself to act like I always had been. Fortunately, this was an extremely beneficial plan of action. Although I did make obvious screeching sounds and neck movements in the middle of class, my peers did not seem to mind much. I remained the kind, respectful, student and friend that everyone was fond of. My younger cousin also had tics, which caused me to start thinking about my own case. It became clear that since I knew I was a normal person, I could easily be one. I could even be extraordinary.

Medication was necessary due to the severity of my tics for quite some time. It made me very drowsy, and my mind constantly foggy. One summer, I reduced the dosage to help myself feel more alive and energetic. I then had to increase the dose again when my tics escalated. Eventually, with the help of my parents and neurologist, I slowly began to decrease the amount of medicine I was taking. In due time, I was completely medicine free. Soon, I started to become more energetic, as I hoped I would. I was loving life. The best part was my tics had barely gotten worse!

Over these past few months, with the new found gift of a clear, open mind, I have been thinking a lot about this topic. I realize that the best way to live with TS, is to act like it doesn’t even exist. This is what I have done for the majority of my life, and it could not have turned out better. I have never missed honor roll, I am a three year varsity baseball player and captain, have so many friends who I wouldn’t trade for anything, a caring family, and an incredible girlfriend who won homecoming queen along side me winning king. It is more than possible for people with this disorder to be as people without it. In fact, they can be extraordinary. Tourette Syndrome is not a definition. It is not who I am. I am Nolan, and that has worked wonderfully for me.

2015 NJCTS Youth Scholarship Award Essay: “Nothing Can Stop the Inevitable”

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!

No amount of preparation or planning can stop the inevitable, for it is something from which you cannot run nor hide and no matter where you are it will always find you. From the day I was born, though no one realized it then, l would eventually face a medical condition that would inexorably direct certain pathways in my life. When l was 8 years old l was diagnosed with what would come to be the biggest obstacle in my life, Tourette Syndrome. Tourette is a neurological disorder characterized by repetitive, uncontrollable and involuntary movements and vocalizations called tics. For years I had been living with this disorder but never realized that the strange and unusual things l did with my eyes and arms, and the noises l made were abnormal. l was only a child and thought that l was no different from anyone else. l thought that l was “normal”. lt wasn’t until one day of elementary school and a call from the school nurse about a severe head jerking movement when my parents came to the realization that something was not right. After visits to the emergency room and various doctors, I no longer perceived myself as a normal regular kid but as the kid with the tic. Even at such a young age, Tourette Syndrome was the most frustrating and distracting thing in my life. There is no cure for this disorder, but there are many medications to help control symptoms. However, with the numerous medications comes lots of trial and error. In the search for the right medication for me I had to persevere through medication that make me sleepy, some that gave me insomnia, and some that gave me severe mood swings. Searching for the right medication that would suppress my tics without negative side effects was like searching for a needle in a haystack. Many things can trigger my tics to start acting up, like sugar, caffeine, stress, fatigue, to name a few. As life went on and l got older, all these things were becoming much more prevalent in my life. l ended up having to watch what I ate, manage my sleeping and homework patterns, and, while doing all this, try not to get stressed out. As a kid all l wanted to do was have fun and enjoy life with my friends but l was unable to do so because of the Tourette Syndrome. When l was younger, it was very hard to control my sporadic movements and noises and kids would always ask what was I doing. l was afraid of telling the truth because l thought l would not fit in anymore. As l got older l found different ways to suppress or redirect my tics into more socially acceptable actions and vocalizations. I also became more accepting of my disorder and didn’t feel the need to lie about it anymore. lf someone asked me about the strange things l was doing l was finally able to simply tell them the truth. Not having to lie to myself and others about who I really was allowed me to take control of my life instead of my Tourette Syndrome controlling my life. My tics may never completely go away, but am accepting of that because it is a part of who I am and I would not be the same confident person lam today if I had not once been “the kid with the tic.”

2015 NJCTS Youth Scholarship Award Essay: “I Am Who I Need To Be”

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!

MaroG

MaroG

Growing up I never really understood much about Tourette syndrome other than it made me twitch all the time and I never made many friends because of it. I was quickly rooted out as the weird kid in the third grade, when it first developed, and it didn’t get much better the following year, or the one after that. I was never very popular and I was typecast as the weird twitchy kid with no friends up threw middle school. It’s not that I was bullied; rather everyone in school always ignored me so that I was never included in games or parties because I guess sitting near the kid who had a twitch was too uncomfortable for all of them and it was easier to push me aside. But what really bothered me was that if they thought it was uncomfortable for them then they really didn’t understand how much the twitching bothered me. Needless to say I spent most of my time alone when I was younger because of this and even though most would probably be very upset about this I learned to manage it. Yes it would have been nice to have a few friends growing up, but more importantly this taught me a sort of independence that is very important to me now.

Even though Tourette’s makes focusing on a single spot very difficult for me when I’m constantly jerking my head from side I have loved reading ever since I was young. In middle school, when I still didn’t have any friends I’d read every day to pass the time simply because it was better than doing nothing. I read because I’m bored and I have a lot of free time on my hands in and out of school. Or at least that’s how it started back then because as time went on I realized that reading wasn’t just a passing interest, it became necessary for me and it still is.

Eventually all the childish bullying stopped bothering me when I began to realize that I am who I am and there’s simply nothing anyone can do to change it, and I don’t want to change. So if I’m stuck like this I had might as well prepare to be like this for the rest of my life, and I am.

And eventually the bullying stopped all together; my classmates forgot what it was that made them not like me and they forgot that they didn’t like me to begin with after I learned how to control the Tourette’s on my own a little bit better, or maybe they just decided let it go. But unfortunately the damage was done, the end result to all this was I never learned how to interact socially, and I didn’t even realize it until high school. Whenever someone wanting to talk approached me I didn’t know what to say or how I should say it. Should I be serious or joking, sincere or sarcastic, should I try to continue the conversation or try to break away? The idea of having to talk to someone became anxiety, and the Tourette’s didn’t stop, it wasn’t as bad as when I was younger but I was still struggling to focus and not lose control of my head, making any confrontation that much more nerve racking because I really didn’t want anyone to notice.

But that doesn’t mean that I’ve become some sort of social pariah who hides away behind a book all the time. It’s true that Tourette’s was never easy to deal with but that just meant that I had to work through it if I wanted to take back a normal life that I always wanted. Medication was always out of the question because that would only cover the problem, not fix the problem and. I would just be running away from my personal reality. If I couldn’t face that I cant face anything. I had to learn that even though having Tourette syndrome had a big effect on how I ultimately turned out it doesn’t define who I am, and even though I didn’t turn out how I wanted to, I am who I need to be.