2016 NJCTS Youth Scholarship Award Essay: “My Life 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!

Having Tourette Syndrome has impacted my life in so many ways. It has influenced the choices I’ve made and the people I’ve met. My experience with Tourette’s has helped shape me into the person I am today. I’m not ashamed of my Tourette’s (in fact, I’m almost proud of it), and I feel that it has helped make me a better person.

I was diagnosed with Tourette Syndrome in the fifth grade, at the age of ten. I’ve suffered from vocal and motor tics since I was in the second grade. Neither I nor my parents understood what caused them, and my teachers and other students would often become frustrated with me. Even my own family would grow tired of my constant noise-making and movements. I didn’t know what was wrong with me. Eventually, someone told my mother to look into Tourette Syndrome. I was finally diagnosed with Tourette’s in the fall of 2008.

Instead of letting my Tourette’s drag me down, I used my diagnosis as motivation to better myself. I began taking karate lessons later the same year after my diagnosis. In eighth grade, I decided to play football. It was a rough season, but it ended up being one of the best decisions I’ve ever made. Football gave me an outlet in which to channel my frustration. I was never a great athlete, but I worked hard, so by my senior year, I had earned a starting varsity spot on my high school’s football team.

In my junior year, I participated in a research study for a new Tourette’s medication. This was done at Overlook Hospital, in Summit, New Jersey, under the supervision of Dr. Roger Kurlan. The medicine worked well for me. I greatly enjoyed the opportunity to be able to possibly help others with Tourette’s.

In conclusion, Tourette Syndrome is a part of my life. My experiences with Tourette’s have greatly contributed to the person that I am today. I’m not ashamed of my Tourette’s, instead I embrace it as part of who I am. I have never let my Tourette’s drag me down, and I hope to inspire others with Tourette’s to embrace it and use it as motivation to better themselves as well.

2016 NJCTS Youth Scholarship Award Essay: “Thank you, Tourette’s”

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!

SeanK

SeanK

The piercing frequency of my alarm clock shattered the barrier between an unconscious dream of mine and the cruel reality of Monday morning. With eyes half open and hair protruding in all directions, I made my way to the shower. As I flicked the light switch on in the bathroom, I stared at the mirror long enough to witness myself clench my left arm, throw my right arm to my side, and make a faint noise in my throat. Following these tics, I exposed to my mirror a gigantic smile; today was going to be a good day.

I have Tourette’s, and although it’s contrary to the above paragraph, I didn’t always embrace my tics. Learning to live with, accept, and at times even love my Tourette’s was a long, hard journey. I wouldn’t say I was ever depressed, though I was often frustrated. Not only was I dealing with the physical effects of Tourette’s, but also the psychological aspect. Any time I twitched, clenched my jaw, or made any faint noise in my throat, I felt anything but normal. Though the truth was that I was a teenager and with this title came normal teenager worries such as insecurity. Whenever someone asked me why I continuously did some movement with my body, I’d make up some stupid excuse then quickly change the subject. Though, it wasn’t until the summer of my junior year that everything changed for the better.

As the school year ended and summer got closer, I started to prepare my trek to Hardwick New Jersey where my friends and I decided to kick off our summer by volunteering as camp counselors at a Muscular Dystrophy Camp. The format of the camp is that each volunteer gets assigned a kid diagnosed with some form of muscular dystrophy, and we spend the week doing everything in our power to make it the best week of their lives. My camper’s name was Ethan, and although he was a little shy at first, we left the camp best of friends and even keep in touch to this day. From the beginning of camp, I sensed that Ethan’s muscular dystrophy, much like my Tourette’s, had him dealing with psychological effects. I did all I could to make him feel like he could talk to me about anything; that I would hear him out and be there for him.

One particular day Ethan was feeling especially frustrated due to the amount of medicine he had to take at breakfast and I immediately sensed this. After about ten minutes of silence, I said “Man I hate taking medicine everyday it’s so annoying.” I saw Ethan’s head perk up, and we had one of the most moving talks I’ve ever been a part of. I told Ethan about my Tourette’s and how everyone has something in their life that they struggle with; I told him it’s what makes us unique. I told him to never be ashamed of what makes you different because the toughest battles are given to the strongest soldiers. I didn’t know where my words were coming from, but I knew they were helping and that they were true. I didn’t sleep much that night, but rather stayed awake all night thinking about what I had said. I realized how much I needed to take my own advice, and vowed from that night on that I would no longer hide my insecurities but rather embrace them.

It was the camp that catalyzed this realization, but it was my Tourette’s that was trying to teach me this lesson all along. So, how has Tourette’s played a part in my life? It’s made me realize that it’s ok to be different and that instead of hiding our insecurities we should embrace them as things that make us wonderfully unique. Everyone has their insecurities, but the way that I now see it is that we can either let them rule our lives or we can embrace them and learn to love ourselves. Although it might sound odd, I am forever grateful for my Tourette’s; it has taught me to love and accept myself for who I am, and this lesson is priceless.

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.

NJCTS Youth Advocate featured on ABC’s “Protect Our Children” special

PROTECT_OUR_CHILDREN_Date Time WABCOn April 16th, ABC aired the, “PROTECT OUR CHILDREN: COPING, STRESS, & MOVING FORWARD” special hosted by Eyewitness News Anchor, Diana Williams. This special describes what experts are referring to as an epidemic of stress-related problems plaguing our children. It’s not easy being a kid these days and the American Psychological Association says one in three teens is stressed. Doctors report they are treating kids as young as six for Migraines and Ulcers. NJCTS Youth Advocate Tom Licato of South Plainfield, NJ, was featured in the program along with other young people dealing with physical, mental, and economic stress-related problems.

“Meeting a 17 year old High School Junior on a mission to educate others about Tourette Syndrome, he’s clearly a leader and a powerful advocate,” said the special’s producer, Jeelu Billimoria. “Finally being diagnosed in 6th grade was a relief for him and he continues to be treated at Overlook Medical Center’s Neuroscience Institute.”

Click here to watch one of NJCTS’s finest advocates on ABC.

 

Different Sides of TS

Having Tourettes for 15 years, I thought I knew everything about them. Or, at least everything about mine, but every once in a while I learn something new.

I have learned a lot about myself during this time. I have my normal everyday tics and noises that consist of hitting my sides, tightening every muscle in my body, as well as squeaks and grunts. I know that when I’m really happy or excited my tics are exemplified. My squeaks get louder and I have a full body tic where I’m smiling. When I’m mad or really upset I usually grunt and have a full body tic. I know I have my tics that only happen when I’m in the car, where I very quickly hit the gas with my foot revving the engine, or I ever so slightly turn the wheel quickly in one direction and then place it back going straight. I know whenever somethings on my head, such as sunglasses or a beanie, I usually have a head tic where I throw my head back. Along with that I have learned that too many sugary foods such as simple carbs (they turn into sugar in your body), sweets, and fruits make them worse. I’ve learned that when my tics are really bad and I have a lot of excess energy running or heavy duty exercising can help reduce them. I know if I do not take my medication at the same time everyday, or if I miss a couple of pills that my tics will get worse. I recover faster from too many sugary foods than missing my medication. There are waxing and waining period for Tourettes, and in the spring they usually get worse.

This is the majority of what I’ve learned, but what others notice and do can take me by surprise. When I have a lot of little tics and I don’t realize them, sometimes someone will let me know and I’ll be stunned thinking, “I thought I hadn’t been ticing at all.” When I get distracted and stop ticing all together because, in a sense, I have “forgotten” I had tourettes, I am surprised when someone brings it up because I didn’t realize I hadn’t ticed in X amount of time. I’ve found out when I become close to people, they normally don’t even realize I’m ticking anymore because they get used to is, which is nice for me to know. But my favorite was when my best friend asked me what I was concentrating on over the phone, and when I asked how’d she knew, she told me I have different tics when I’m concentrating, which I never knew.

Through trials and tribulations I have learned a lot about myself. I am consistently growing and trying to find more out about TS, and about my form of TS. It is just nice to know I’m not the only one discovering new things 🙂

It Has Been A While

Hello there!

I had been a blogger on here a while ago. Sadly, time had gotten away from me because of college and my studies, but I have more time on my hands so I wanted to get back into this!

I believe when I had started blogging I was either a senior in high school or a freshman in college. A lot has changed since then. I am currently a super senior in college. I have one final class this semester before graduating in December. College has been a lot of fun, and I truly feel that throughout this experience I have found myself. I know what I want to strive for to better myself and continue on my path of becoming the best me possible, and I believe I have matured into a woman who is a lot different then who I used to be (which I am very happy about). In high school I was very insecure. I looked to my peers on how to act, what was cool, and who I thought I wanted to be. I wanted to fit in, and honestly, who doesn’t? But high school was hard, I was only 18 when I graduated. Now being 22, almost 23, I realize how much I didn’t know about myself. I used to define myself only as the girl who has Tourette Syndrome. That was honestly all I thought people saw me for, but I was wrong. After some therapy and work, I was able to see that my TS was not who I was, it was only a small portion. I am a lovely, smart, funny, and charismatic woman who loves learning and being silly! Those are just a few words that I would sue to describe me. Now, I do not see my tourettes as a burden, but something that has made me stronger, something that I wouldn’t want to change. Instead of being ashamed of my tics, I have grown to continually learn more about them and myself and laugh with it. When I have a really excited tic, or when I’m really happy I usually tic and then giggle and smile. My friends know how I’m feeling without me having to tell them because of it. They know my happy tics from my mad tics, and my concentrating tics from my everyday tics. It has made me me, and now when people describe me and they say you know, the blonde girl who has tourettes? I’m not ashamed or mad, I’m happy about it. It makes me stick out, in my opinion, in a good way.

Granted, having TS can still be challenging. I still get some mean glares, or people making fun of it behind me back, but they don’t matter to me. If they knew me as a person and if they can’t put two and two together realizing that if I’m continuously twitching I’m not doing it on purpose, then I don’t care about them. They’re not important enough for me to spend time on. I’ll get this in passing sometimes, but it’s okay. I try to advocate as much as possible, but sometimes you can’t get to everyone. And honestly, I love advocating about it. I love when people come up to me and ask if I’m okay, even if it’s in passing. It makes me so happy because it shows me they’re concerned and care. I love educating and allowing someone to see if firsthand, so maybe the next time they see someone who has similar signs they’ll know and possibly be able to help or make the connection that this person has TS. Even if they can’t remember the name, they’ll think, oh hey wait I was that girl who had something similar to this, this person is okay.

I am happy there is more awareness and recognition for TS. I remember in 3rd grade when I was advocating for it in class, no one knew about it. In those years, times truly have changed. Almost always now whenever I tell someone I have tourettes and ask if they know what it is, they say yes. I still sometimes get ones who don’t know, but I love telling them and helping them understand its involuntary, just like a sneeze. I feel like educating others on it is so important, just like any other disability, or as I would prefer to call it, a little something extra.

Anyways, this post is already way too long. But it feels good to be back. I will be writing again soon, and I hope that if you guys ever have any comments, need help, or even advice, you’d leave a note. I love helping others, especially on this subject.

I hope you all have a wonderful day and I’ll talk to you soon!

Katie

Award-winning Dawson Coyle to perform at Sunday’s NJ Walks for TS at Medford Lakes

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

The first South Jersey 5K for Tourette Syndrome is coming to Medford Lakes this Sunday and Dawson Coyle can’t wait.

The Gloucester County native is making a name for himself throughout the region as an award-winning singer/songwriter and will bring his sound to NJ Walks for TS.  He says encouraging audiences with his music is a big part of what he does, but this event holds an even deeper meaning for the 16-year-old.

Dawson was diagnosed with Tourette Syndrome (TS) at the age of five. A neurological disorder, TS is characterized by involuntary movements or sounds known as tics. As many as 1 in 100 children exhibit symptoms of TS which is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues, and learning disabilities.

“Having TS and being aware of the everyday struggle of all that comes along with it makes it a very real issue for me,” he said.

NJ Walks for TS is a day of advocacy and awareness, started for kids, by kids to benefit kids with Tourette Syndrome. In addition to encouraging peers and younger kids to embrace life by connecting with something they enjoy doing, Dawson would like to help bring the public to a greater understanding of TS.

“This is not a joke,” he said, “I’ve heard the term [Tourette] negatively in describing others as a joke my whole life and it’s not funny.”

“For me, personally, when I hold back my motor tics, it’s like holding back a blink but in every part of your body—it’s exhausting,” he said. “[TS] waxes and wanes, it’s very possible to see me not ticking for extended periods of time…there is no rhyme or reason.”

For Dawson, and many of the other 20,000 school aged children and teens with TS, the outward appearance is the tip of the iceberg.

“Many times we struggle with our thoughts,” he said. “Depression, anxiety, OCD and so many other things come along with it.”

Ultimately, he wants everyone—especially those struggling with the disorder—to know that “those things do not have to overtake someone with TS.”

Dawson credits his faith, parents and music for helping him keep a positive mindset.

“I really want to be an encouragement to others with TS,” he said, “to show them that they can find something they’re good at, work hard at it and, in return, can also encourage and inspire others.”

All proceeds from NJ Walks for TS at Medford Lakes will benefit the NJ Center for Tourette Syndrome’s (NJCTS) Education Outreach Program, which delivers in-service trainings to schools and hospitals across the state, youth leadership training, and scholarships.

To register or donate, visit http://njcts.org/walk. On-site check-in begins at 8 a.m., Sunday, Sept. 20 at Beach 1/Vaughan Hall (Tabernacle Road) in Medford Lakes.

For more information on Dawson Coyle, visit http://www.dawsonmusic11.com/

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.

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.