Our differences make us who we are

While growing up in two different places, I never really stood out in the crowd. I was just normal, in a good way I suppose, and I didn’t think much of it. Although I feared new environments due to my shyness, I was soon in America by the age of three. I spent five full and fun years and went back to Korea. As I recall I was very organized, did all my work, and focused perfectly well. Those were probably the few reasons why I didn’t expect myself to be in the position that I was, and still am now. I don’t think that I will forget the three years of my Tourette Syndrome experiences.

To begin with, I had never even heard of the word Tourette’s before I started to have tics. I don’t remember when it first started. I don’t think you can have tics, the constant movements or noises I make, all of a sudden. It might have happened slowly, but it also could have been rushed through, too. One thing I clearly remember is the time my mom and dad told me we were going to the doctor’s when I was eleven years old. They weren’t very specific, but I already suspected it was because of my head-shaking and eye-rolling. “But why?” I asked. When my dad answered the question, I started to yell that I would not go. That I was not mentally ill. But I had to, and I did. After waiting for an hour and half, (it was a very good and big hospital) and within minutes I was diagnosed with Tourette Syndrome. It was too much information that I did not understand at that point.

Although this post is not going to be purposely overly depressing, the first years were probably the hardest. It was when the truth hit me hard. My condition was worse than right now. Then, I had to accept the fact that I was “different.” Every time I looked around, I saw people. People just sitting, writing, laughing, playing. All doing so while staying still. But me? Why couldn’t I do the same? My Tourette Syndrome medicines increased to a high dose, and I started receiving antidepressants. I would have to answer the embarrassing question whenever I met someone: “Why do you do that?” There were a few times when some disturbing boys just had to imitate me, and I would get very emotional at those times. I would cry. I was never the one in control when it came to my tics. I was insecure enough―and I didn’t need them to point out the facts for me. And some days it was kind of annoying and depressing, unfair and just sad. For so many reasons, really. I hated when people who I didn’t even know stared at me as if I were strange, abnormal. I didn’t like how someone would judge me before they would even get to know me. It was inevitable, though. People would see my Tourette’s before they would see me. I didn’t like it.

Whenever I would share these kind of moments to adults, my doctor, parents, I felt like they would never fully, completely understand. I would spill the words out from my heart sometimes, but some days I would seal my mouth shut. I could never share these experiences to any of my Tourette’s-inexperienced friends, not even to my closest ones. They would never really get it. Even now, I’ve never really talked to them about it other than tell them about it. I knew that everyone was always there for me. But in a way, they weren’t because they would never truly know how it feels.

I sometimes admit that I think I have had a lot to benefit from having Tourette Syndrome. For example, I see more in people than I had before. I know what it’s like to be depressed. I understand how hard it is to be so hateful toward your own self. I know how sometimes, you don’t want to get out of bed; you just want to sleep forever. I also know that I’m no different than others. Our differences make us who we are.

But if you’re thinking having Tourette’s isn’t painful, or maybe not that bad let me tell you that you won’t want to have it. People stare. Your neck will hurt, and you’ll pretend to roll your neck naturally in school—oh, I’m just stretching—afraid people will notice. Anyone can use it against you; from petty girls to “Everyone likes me so I’m a good person” type of boys. It can be genetic, but in my case none of my parents had it. I could make a list of reasons why I don’t want it. When I look back at the past, I was a very sad third-grader. I was always stressed. I was this normal, popular girl in America, and when I came to Korea, I suddenly had these stupid, severe tics. I mostly cried everyday, and screamed a lot, too. I continued to read a lot. I only enjoyed reading English books, and it was one of my few remedies. I had only a few girl friends. Most of my friends were boys. I didn’t care though, until I got to fourth grade.

It was the first day of school in fourth grade, and as soon as I walked into the classroom, I was screwed. First of all, my tics were in bad condition. Especially my vocal tics, which are the sound tics. Second, I barely knew anyone in the classroom. ‘Forget good first impressions,’ I thought to myself. Almost everyone knew each other, which was very awkward for me. When I got to my seat I waited until my teacher came and until everyone was in the classroom. I still remember this, and I almost died of embarrassment, but I kept on clearing my throat. A boy, who was the most popular boy in our class later on, suddenly called out, “Who’s making that weird sound?” At the time no one knew except for me. Later on, everyone probably figured it out. It did not stop the girls from staring or constantly asking me why I was doing it or what I was doing.

I have recently watched a video called “I Have Tourette’s but Tourette’s Doesn’t Have Me.” I saw some things I already knew, one of them was there is at least one child with Tourette’s in every school in the U.S. It was one of those facts that I had to remind myself. In the video, I saw children between the ages of six to thirteen with Tourette’s. I found myself relating to them, especially a boy named Seth and a girl named Anna. When I heard her talking about seeking true friends, I ached because I remembered how bad I longed for a true friend for years. I cried while seeing Anna pounding her stomach, seeing her cry, scream, and talk. I cried because I saw myself. I cried because I felt her pain.

Even today, I am sensitive about my Tourette’s. I think it’s because knowing that I’m no different, and feeling like it are two different things. However, I am more truthful about it now. I have told a few of my friends what I have, because I think it is wise to. My doctor, thinks that I should tell my friends, too. I don’t think I’ll have to lie about it again. I am not embarrassed anymore. I previously had one incident, caused by my Tourette’s last year. It made me feel so many emotions at once and I quickly burst into tears. I don’t want to cry for something that is not even worthy of my tears. It’s been done too many times. I know my tics aren’t going to suddenly go away. I don’t expect them to. I know it takes time. I don’t have any stress or depression. I think the stress was one of the harder stages. I will continue to find my way, and the more I do, I think the more I will accept my Tourette Syndrome.

Watch NJCTS Youth Advocate Tess Kowalski’s interview on ABC’ NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! If you missed the segment that aired on Sunday you can watch it here. Bravo!

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

Teens Hit the Town for NJ Walks for TS

There’s a pack of girls on the loose in Central Jersey. The Youth Co-Chairs of the NJ Walks for Tourette Syndrome at Princeton are going door-to-door recruiting support for their mission of advocacy on behalf of the 1 in 100 New Jersey kids living with Tourette Syndrome, a neurological condition known for involuntary movements or sounds known as tics.

Tess Kowalski, 16, of Plainsboro; Hallie Hoffman, 16, of Hillsborough; and Ally Abad, 16, of North Brunswick understand the physical, emotional, and academic challenges that accompany a TS diagnosis. All three are uniquely talented and share a passion for demystifying the disorder by volunteering as Youth Advocates through the NJ Center for Tourette Syndrome (NJCTS). They are trained to deliver educational presentations to clinicians, teachers, and peers to build acceptance and understanding of TS.

All proceeds from NJ Walks for TS at Princeton will benefit the NJCTS Education Outreach Program, which provides in-service trainings and Youth Advocate presentations to schools and hospitals across the state, promoting awareness of the disorder.

Tess, Hallie, and Ally are spokespersons not just for the walk, but for the programs the walk will benefit.

“I love to educate the public, teachers, and students about TS so that one day, a kid will have TS and will be accepted because their friends and teachers would have already learned about it,” said Tess. “(As a Youth Advocate) I’m speaking up so that they won’t have to. I hope that soon, a kid with TS won’t have to explain their condition to other kids, that their friends will already know about TS and accept them.”

Tess and her sister Paige, 13, were the inspiration for the Princeton event of NJCTS’s statewide NJ Walks for TS program. The Kowalski Family, led by Tim and Leslie, have served as hosts since 2014. NJ Walks began in 2010 in North Jersey as the first advocacy event for kids, by kids, to benefit NJ kids.

The Youth Co-chairs are asking residents and local businesses for a show of support by registering for the 5K walk/family fun run at www.njcts.org.

Ally invites walkers, runners, kids, and families of all abilities to join the movement on April 3rd because “not only is it a nice thing to do, but it’s important to learn about what other people go through.”

“Having so many people from the local community—whether they have TS or not—makes everyone feel incredibly encouraged and accepted,” adds Hallie. “Whether you have TS or not, the walk is a fun and active event that takes little effort but makes a huge difference for the people affected by its benefits.”

To help these three in their walk for TS, join them on April 3rd at Mercer County Park West in West Windsor for an afternoon of fun, food from The Corner Bakery Cafe at Princeton Marketfair, music from NJ 101.5, and a message of self-empowerment by registering today at www.njcts.org or call 908-575-7350.

Tess and Paige are on a roll!

NJCTS Youth Advocates Tess and Paige Kowalski have been on a roll lately. In addition to their presentation at Hamilton Primary School they also presented to the 6th grade class at Temple Emanu-El in Westfield, NJ this week. They educated approximately 50 students and 2 instructors about Tourette Syndrome and the associated disorders and shared their TS stories. Brava, ladies!

Tess and Paige educate Temple Emanu-El about Tourette Syndrome

Tess and Paige educate Temple Emanu-El about Tourette Syndrome and the associated disorders

Some of the factors that cause tics to increase

Some of the factors that cause tics to increase

Tess and Paige show a clip of "I Have Tourette's but Tourette's Doesn't Have Me"

Tess and Paige show a clip of “I Have Tourette’s but Tourette’s Doesn’t Have Me”

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Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige take questions from the class.

Tess and Paige take questions from the class.

NJCTS Youth Advocates educate students at Hamilton Primary School about TS

Earlier this week, NJCTS Youth Advocates Tess and Paige Kowalski were joined by Youth Advocate-in-training Cami Jimenez to present to the third graders at Hamilton Primary School in Bridgewater, NJ. More than 115 students learned about Tourette Syndrome, acceptance, and treating others with respect. After school that same day, Education Outreach Coordinator Gina Maria Jones presented to 50 faculty and staff members. Now, the Hamilton School community has the tools to help kids with TS thrive. Way to go, ladies!

Paige and Tess discuss what causes tics to become worse.

Paige and Tess discuss what causes tics to become worse.

Paige and Tess share their TS stories.

Paige and Tess share their TS stories.

Cami, Paige, and Tess take questions from the third graders.

Cami, Paige, and Tess take questions from the third graders.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

 

NJCTS Youth Advocates present to nearly 900 students and teachers about Tourette Syndrome

Eric Baldwin, Sarah Baldwin, Rachel Flynn, Principal Robin Bazzel, and Anna Baldwin after their presentation on Tourette Syndrome and the Associated Disorders at Clearview Middle School.

Eric Baldwin, Sarah Baldwin, Rachel Flynn, Principal Robin Bazzel, and Anna Baldwin after their presentation on Tourette Syndrome and the Associated Disorders at Clearview Middle School.

Today, NJCTS Youth Advocates Anna, Sarah, and Eric Baldwin presented to the 7th and 8th graders at Clearview Middle School in Mullica Hill, NJ. Nearly 900 students and teachers learned about Tourette Syndrome, tolerance, and acceptance. The Baldwins were joined by their cousin Rachel who spoke about her TS for the first time! Here they are with Clearview Middle School Principal Robin Bazzel. We are so proud of the great work this family is up to, spreading understanding and awareness of TS throughout South Jersey. Bravo!

Research project: Looking for participants to count their tics

My name is Rebecca and I am a 7th grade student at St. Gregory the Great Academy in Hamilton, New Jersey. Every year, I am required to submit a science experiment to the Mercer County Science and Engineering Fair. This year, I have decided to conduct my research on Tourette Syndrome. I have been diagnosed with Tourette Syndrome since I was nine years old and I have a high level of interest in understanding more about the disorder. Many organizations, including: NJCTS, Camp Twitch and Shout, the Rutgers University Tourette Syndrome Clinic and my private doctors and psychologists, have been a tremendous help to me and my family in coping with my Tourette Syndrome. I have learned to accept my tics and to be proud of myself and my accomplishments. I am so much more than a kid with Tourette Syndrome. I am also a great student, a competitive swimmer, an avid reader and a lot of fun to be around!

Right now, I am asking for help with my research on Tourette Syndrome. I am looking for participants with Tourette Syndrome to count their tics for me. My hypothesis is that students with Tourette Syndrome will have an increase in tics after school. I need volunteers who are willing to count their tics for 30 minutes on 3 school days and 3 non-school days. My experiment is due on January 11, 2016, so I am hoping to collect all of my data by the end of December.  

Here’s what you need to participate: A permission form and an explanation of the procedure and a data collection table. Please contact me at 609-647-6051 or dheimowitz@gmail.com if you have any questions.

The Application for the 2016 NJCTS Tim Howard Leadership Academy is now Available!

Leadership Academy logoThe NJCTS Tim Howard Leadership Academy is a unique and invaluable learning experience for teens with Tourette Syndrome. Over the course of these rigorous four days, participants will stay overnight at Rutgers University, attend engaging workshops that provide a deeper understanding of their diagnoses, participate in small group discussions and be encouraged to share personal triumphs and challenges, and will be challenged through numerous educational activities to develop their sense of self-leadership, self-empowerment, and resilience. Eligible applicants:

  • Have a diagnosis of Tourette Syndrome from a qualified medical practitioner
  • Are entering their Sophomore year of high school through having just completed their Senior year of high school by the summer of 2016
  • Have an active interest in, and commitment to, their vision of themselves as leaders
  • Are comfortable being away from home for four consecutive days and nights
  • Can comfortably and meaningfully participate in an intensive, demanding learning experience with others who share their diagnoses, which includes comfort interacting with others and sharing information about themselves, comfort discussing their diagnosis, and comfort being around others who tic and have anxiety disorders.
  • Ability to sit in a workshop setting for up to an hour at a time

Top THLA 2015Please note that the application has changed significantly for 2016:

  • Requires feedback and a questionnaire from a medical practitioner who has seen the applicant within the past 12 months.
  • Requires feedback from an educator who has worked with the applicant in a classroom setting in the past 12 months.

Because consideration for admittance is dependent on all aspects of the application being completed, you are advised to begin the application process as soon as possible to ensure a completed application is submitted by the deadline. 

APPLICATIONS ARE DUE BY MARCH 1, 2016.   

Participants form lasting connections, gain a better understanding of themselves, and walk away with a toolkit that prepares them for a successful future! Interested applicants should request an application by contacting Academy Director, Melissa Fowler, via email at mfowler@njcts.org. Applicants who are being considered for admittance will be contacted for an interview by March 20th, 2016.

Thank you for your interest, and best of luck!

October is National Bullying Prevention Month

The NJ Center for Tourette Syndrome joins the movement to prevent bullying,

expanding its Youth Advocate Program

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

This October, schools and organizations all across the country are observing National Bullying Prevention Month. All students should feel safe in school and have the opportunity to grow and thrive, academically and socially, and through its  Youth Advocate program, the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is taking special steps to prevent bullying.

NJCTS Youth Advocate presentations inform youth about Tourette Syndrome (TS)—a misunderstood and misdiagnosed disorder that affects 1 in 100 school-aged children who are often the targets of bullying. Advocates are 13- to 18-years-old and either have a TS diagnosis or live with a sibling or family member with TS. In addition to providing an overview of the neurological disorder, the Advocates promote understanding and tolerance, and deliver a strong anti-bullying message. The presentations have grown to include a discussion of the Six Pillars of Character: Trustworthiness, Respect, Responsibility, Fairness, Caring, and Citizenship.

“NJCTS has long been and continues to be one of the most important organizations addressing childhood bullying in NJ schools,” said Dr. Stuart Green, Director of NJ Coalition for Bullying Awareness and Prevention and Associate Director of Overlook Family Medicine. “Their innovative youth advocacy program provides a much-needed service. The program empowers and gives voice to youth with TS, shines a light on a commonly misunderstood and stigmatized condition, and helps NJ youth and their teachers strengthen their empathy for those who are vulnerable and targeted. The NJCTS Youth Advocates are heroes for an important cause – they deserve our recognition and support.”

In recognition of the efforts to improve school climate and reduce rates of bullying, NJCTS regularly coordinates Youth Advocate presentations in schools and community groups, reaching thousands of students throughout New Jersey. Since the program’s launch in 2009, NJCTS Youth Advocates have conducted more than 250 presentations, raising awareness and increasing sensitivity and understanding.

“Our Youth Advocates foster understanding, sensitivity, and tolerance of TS while displacing the myths and stereotypes that are often associated with this misunderstood and misdiagnosed disorder,” 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.”

During National Bullying Prevention Month, NJCTS will be training a new “class” of Advocates on Saturday, October 24 from 10 a.m. to 4 p.m. at the Morris County Library, 30 East Hanover Ave., Whippany, NJ 07981.

For more information or to attend the training, please contact Gina Maria Jones, M.Ed, NJCTS Education Outreach Coordinator, at gjones@njcts.org or 908-575-7350.