2017 NJCTS Youth Scholarship Award Essay: “The Same Kind of Different as Normal”

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

Rose P.

“All the world is full of suffering. It is all so full of overcoming.” – Helen Keller.

We never think of the simple tasks we do from day to day like getting dressed, making our bed in the morning, even just writing our name on a piece of paper as difficult. These are things that normal people take for granted, but in second grade these were my biggest struggles. I was constantly losing control of my body and then gaining it back just as fast. It’s a misunderstood neurological disorder called Tourette Syndrome.

As a child I didn’t understand what was happening, why I had changed and became so different from my classmates. Why I could no longer be just as normal as they were? I could still run, jump and play. I was constantly exhausted because even when I tried to sit still, my body was in constant motion. I often had to be sent home because I was unable to sit in my chair at school when my tics became too severe. Every day I would go to bed with the desire to be “normal.” Every morning I would wake up with the hope that one day my tics would go away. The only thing was, it never happened. Through it all I began to admire Helen Keller for how she lived her life and had been able to overcome being both deaf and blind and still learned to speak and go to college. I knew that if she could overcome her differences so could I. That one day I would be able to beat my Tourette Syndrome.

Even today I may struggle doing things when I have a day with more tics than usual. I have never let my Tourette Syndrome get in the way of what I want to do in school and in life. I am able to dance, perform in plays and compete both in swimming and on my school academic team. I have come to learn and accept that being different is being normal for me. The word normal can only be defined by how you see yourself and shouldn’t be defined by how others see you. I feel that because I am not as normal as others, I am able to understand people from a different point of view. I can better understand what people go through medically and emotionally when they are unsure of what may happen next. I have also wanted to help people my entire life. As a first grader, my dream job wasn’t to be an actress or movie star like other kids my age; I wanted to be a scientist and work at St. Jude’s Children’s Hospital to help cancer patients. I didn’t even know what cancer was, but I wanted to find out and make a difference. Now, my dream job is to be a nurse at the Children’s Hospital of Philadelphia. Tourettes has never stopped me from following my dreams before, and I don’t feel that it will stop me now, either. I was able to overcome many things as a child; I still do every day of my life. Being a nurse will allow me to help the children who may be going through their hardest life challenges, whether they have cancer, or another disease or disorder. I will not only be able to help them medically, but I will be able to show them that if you are determined enough to do something, anything is possible. Just because you have a disability or disorder doesn’t mean you have to live your life as such. We all determine our own destinies in life, for me that’s beating Tourette Syndrome and becoming a nurse. Normal and different is only what you make of it. It doesn’t matter how others see you. You are your own kind of normal and that’s the best kind there is.

2017 NJCTS Youth Scholarship Award Essay: “Life’s a Twitch”

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

Anna B.

One of my all time favorite quotes is by Scott Hamilton, “The only disability in life is a bad attitude.” From my own experience, I can honestly say this is very true. Life with Tourette is very unpredictable and sometimes you just have to learn to roll with the punches. I am not always the best at this, according to my parents my attitude is, “less than awesome.” At least it used to be, with age and acceptance it has improved tremendously.  

As a twelve year old who’s tics were becoming more obvious by the day, I decided to make a difference. I wasn’t going to let my so called ‘disability’ hold me back. I knew without explaining myself the kids at school were going to make fun of me because they didn’t understand. That’s why I did research and wrote my own speech to present. If the kids are uneducated and pick on me it’s just because they don’t understand, but if they understand and still are unwilling to accept me then that’s their problem. I gave my very first speech to my class in the sixth grade which coincidentally was also the day I got my diagnoses. All the positive reactions empowered me. During my research I came across the National Tourette Syndrome Association’s Youth Ambassador Training program in Washington, DC, and the New Jersey Center for Tourette Syndrome (NJCTS). I was trained to be an advocate for TS and given a presentation to use in schools. I began presenting professionally to small classrooms but it wasn’t until I became involved with NJCTS that I really began making a difference. I attended the first patient center education training and another training on how to present in classrooms. My sophomore year of high school I spoke to around 50 doctors and other medical professionals about Tourette. Every presentation I did gave me a little boost of confidence, which for a shy kid was life changing.

Though my transition through it all seemed like smooth sailing was far from it. To put it gently, freshman year I was a hot mess. I had developed coprolalia and let it get the better of me. My bad attitude really was crippling. I focused on what was going wrong instead of focusing on how I could use it to my advantage. [NJCTS Family Retreat Weekend at] Camp Bernie changed that for me. I made amazing friends who I am actually talking to as a write this four years later. Hearing their experiences and sharing coping techniques was huge for me. Being in a place where my differences were not only accepted, but embraced as well, was utterly life changing. Steven, a teacher who also struggles with coprolalia, made me realize that even if I didn’t improve I could still be successful and teach special education as well. Once I was able to come to terms with my Tourette I was able to help others do the same.  

Now I am a happy, successful, eighteen year old pursuing my dreams and doing my best to empower those around me to do the same. My favorite example of this was a presentation I did a few years back. A third boy was being bullied for his TS so I did a presentation at his school. After the presentation, he came up to me and said, “Thank you, I think I’m going to have friends now.” It all starts with a good attitude and self acceptance.

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/