2016 NJCTS Youth Scholarship Award Essay: “Living with Tourettes”

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!

EricR

EricR

I was diagnosed with Tourette’s Syndrome at the age often. My tics were much worse when I was younger, but have started to dissipate as I have grown. The diagnosis of Tourette’s is central to my identity and matters a great deal, as it has shaped who I am and how I interact with the world.

Having Tourette’s does not define me, however, it was a pivotal player in the shaping of my early years. I started showing symptoms around the age of six. The first observable tics included humming and blinking. My family had no idea what was happening, so they took me to see multiple doctors. At first the doctors said that I had transient tics. They could not make the diagnosis of Tourette’s until I displayed both motor and vocal tics consistently for over a year. This was a problem because my tics would change constantly. I could have one or a combination of multiple tics occur simultaneously and then they would suddenly disappear for months at a time. This occurred for a number of years. Therefore, it wasn’t until the age often, that a doctor officially made the diagnosis.

Tourette’s has come to shape my personal identity in different ways over the years. I have had to learn how to deal with it every day of my life, since elementary school. When I was younger, my tics were at their worst, so I had to focus more on controlling them than on the lessons being taught at school. As a result, my parents often had to re-teach the lessons to me, and at times I also needed tutoring. Once I became a teenager my vocal tics were the most noticeable and disruptive. Fortunately, my teachers and classmates were compassionate and understanding. They knew that I had Tourette’s and that I wasn’t making strange noises on purpose. It was during this time that various medications were attempted, but they only made my tics worse and gave me bad side effects. Despite the downside of distracting me from my early education, many positive things have come out of my condition.

Having Tourette’s Syndrome has allowed me to understand myself on a deeper level. I have become more confident as I grow and adapt to my disorder. Because of the confidence I have acquired, I am a more focused and dedicated student.

As a result of this dedication, I have been on the honor roll every year since entering middle school. I also hold memberships in both the St. Thomas Aquinas Honor Society and the National Honor Society of High School Scholars. During my sophomore and junior years, I received several Outstanding Academic Achievement Awards. In addition, I have been recognized as a member of the Sapientia Sanctitas Society.

My success did not come easy. Many hours of studying and tutoring occurred throughout my elementary and high school years. I knew that if I wanted to succeed, I would need to focus and concentrate on doing well. My determination and perseverance paid off, as I have been accepted into three colleges to study architecture.

Experiencing challenges at an early age caused me to have a unique and positive perspective of the world. I see the world in a different way. I am not quick to judge other people, as I understand what it feels like to be looked at oddly. When I was younger, I used to be very introverted. Now that I am older and my tics are more manageable, I have become more extroverted. I am no longer afraid of what others will think of me and I now welcome new challenges.

Tourette’s has helped shape my personal identity as it has exposed me to diverse and challenging situations. I have become less introverted and have formed a positive opinion of the world around me because of the confidence I have gained from adapting to my disability. I look forward to experiencing new challenges and more opportunities for growth, as I continue my education as an architecture student.

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.

 

Youth Advocate Tess speaks to doctors at Hunterdon Medical Center

Last week, NJCTS Youth Advocate Tess Kowalski and NJCTS partner doctor Harvey Bennett, MD, Goryeb Children’s Hospital, engaged the doctors at Hunterdon Medical Center with a powerful Grand Rounds presentation. After Dr. Bennett gave an overview of Tourette Syndrome and the associated disorders from a medical perspective, Tess and her father, Tim, shared their personal experiences with TS.

Tess and other NJCTS Youth Advocates like her are helping the medical community deepen their understanding of the needs of patients with TS and their families. Way to go, Tess!

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2015 NJCTS Youth Scholarship Award Essay: “Pushing Through”

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!

Meghan Ward photo

I was diagnosed with Tourette Syndrome at seven. At the time, my brother was the one who had been diagnosed with Tourette, and he was having a difficult time coping with it. While we were following up with the doctor, my mother asked what my chances were of being diagnosed as well. The doctor said that, while I was sitting in my mother’s lap, “your daughter is ticcing right now”. Due the experience I had with my brother, I understood what was being said and did not have a bad reaction to being told I had Tourette. I, in turn, asked “if I was like Justin” and that I was happy Justin wasn’t alone. Dealing with my Tourette has been easier for me as I am on the more mild side of the spectrum.

In order to understand what my brother and I were dealing with, my family became more involved in the TS community. We were able to learn more about the disorder and about how it passes down genetically from the father. Being diagnosed with Tourette has brought closer together and we became more involved with the TS community. We would go to a camp that had other kids, just like us, who could learn more about each other and how TS had affected us differently. By going to this camp, it helped me realize that I wasn’t the only one who was different and that even celebrities could have disabilities and overcome the obstacles. The kids at the camp were taught to recognize our tics and became more aware of them in others.

Tourette has affected my school life both academically and socially. I’ve always had trouble concentrating in school. Knowing I have Tourette has helped me understand why I do the things I do and why I have difficulty staying still in my seat which made me focus on myself rather than the teachers. It has also made me more aware as well as defensive towards stereotypical remarks. I believe now that i am less likely to judge people by their mannerisms as I had been before.

A contribution my family was able to make to the TS community was being featured on a news program regarding Tourette Syndrome. By doing this news segment, we were able to help make people aware of the disorder, how it affects the child diagnosed, and the child’s family. This made me hopeful that people would be able to put a face to the syndrome.

Overall, being diagnosed with Tourette Syndrome has had positive and negative effects on my life. It has made me the person I am today; more aware of others disabilities and helping others who are in the same situation as I am. I have even volunteered on the First Aid Squad for my town. Tourette Syndrome is a part of my life and it makes me who I am.

Teens and specialists deliver critical Tourette Syndrome training in New Jersey

Physicians spend a lot of time in training, but when it comes to understanding the challenges of Tourette Syndrome, there’s a “gap”, according to Tolga Taneli, M.D. The psychiatrist specializes in the neurological disorder characterized by involuntary sounds or movements known as tics and he partners with the New Jersey Center for Tourette Syndrome (NJCTS) to educate healthcare professionals.

“Tourette Syndrome is diagnosed too late- from its first symptoms to diagnosis sometimes takes a decade or more,” said Dr. Taneli, “There is a training gap in physicians to make them able to recognize early symptoms.”

He emphases a “critical” need to train first-line physicians like family practitioners, pediatricians and internists- doctors who are more likely to encounter a patient before they seek the help of a specialist.

Because of its complex physical and cognitive manifestations, understanding Tourette Syndrome (TS) goes well beyond tics. Since 2011, NJCTS has delivered Patient-Centered Medical Education presentations to hospitals throughout New Jersey and beyond. The program consists of a specialist with TS expertise and teen advocates, living with TS, who are able to convey the emotional toll and communication challenges in a way that transcends clinical terms.

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Share Your Story: Everything that happens in life can be used for good

Hello, my name is Jasmine. I am 24 years old. If you know me or have read anything I’ve written previously, you know that I have Tourette Syndrome. However, there are a few things about me you may not know.

For example, I have fought a battle for much of my life that a lot of people fight. Like others who fight, I have always fought in private. It is not a battle against others. I have defended against darkness, hopelessness and ultimately myself. Now, I am taking big steps to fight offensively, not defensively. I am not telling you all this for sympathy or for pity. I am simply sharing my story because I know how it feels to wish you weren’t alone. I know that it helps to know that someone out there understands what you are going through. Part of being human is having flaws and faults.

I was diagnosed with depression and anxiety at the age of 18. The fear I felt at having a mental illness was almost as intense as the fear that it would never end. There is so much stigma in the world around us about mental illness. It’s sad, really. I find it sad that people create such stigma. It is such a negative thing.

Not only does it create misunderstanding, but it makes those who already feel so alone in the world feel even more isolated than they did in the first place. It keeps those who truly need help from seeking it out because they are afraid of what people will think of them. We become afraid of being judged and looked at differently. Sadly, that does happen … and it’s because of the stigma. Stigma is why a lot of people, such as myself, suffer in silence for far too long.

I suffered in silence until I absolutely had to find a means of escape. I searched desperately for a way to numb the pain I felt on the inside, so I created a pain I knew the source of and could control of on the outside. That is where self-injury entered the scene. Contrary to the stigma, it was never about attention. It was never an attempt to do permanent damage such as suicide.

In fact, it was something I desperately hid from everyone around me, from all those whom I loved. It was a way to cope so that I could stay alive. Even though it was only a temporary relief, it became an addiction that I couldn’t control and didn’t know how to quit.

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10 Ways to Respect Children & Adults with Tourette Syndrome: No. 6

Hey everyone! I have decided to make a blog called “10 Ways to Respect Children and Adults With Tourette’s Syndrome”.

I feel like it’s not just important to tell others what shouldn’t be said, but that it’s also very important to follow this up with things that should be said and things that are helpful and supportive. This is important so that others without Tourette’s don’t shy away from talking about it all together, but instead know ways they can acknowledge Tourette’s by being helpful, supportive and accepting without being offensive.

So counting down toward No. 1, here is No. 6:

Asking questions instead of staring.

From Jenn, the mother of two children living with Tourette’s Syndrome:

I can understand when someone glances over at my children when they tic. A quick glance to acknowledge your surroundings and be sure nothing wrong is occurring is acceptable. However, when you stare too long, it makes things worse.

Not too long ago my daughter was outside of our pediatrician’s office on the ground with full-blown tics. Two people were nearby, one leaving the office and one entering. The one leaving had a child with them. The child said hello. Sam didn’t answer, and the parent made a rude comment about how disrespectful she was for not saying hello in return.

The other parent came toward me and had a look of anger and terror, and asked me what one earth I was doing to my child. I turned to her and said she has Tourette Syndrome and was ticcing. She apologized and walked inside where shortly after she came out to see if we needed anything.

The bottom line is that I was left sad and angry. I wasn’t hurting my child, she wasn’t on display for people to watch as though in a circus nor was she rude. She was, however, in physical and we both were in emotional pain. So to sum it up: People can respect us by not bringing any attention to the fact she has TS.

Look for No. 5 tomorrow. And in case you missed the ones that came before, here’s a list:

Teens4TS Showcase: 3 NJ teens educate 120 Yale docs on Tourette

Between them, teenagers Grace Hawruk, Tommy Licato and Tess Kowalski have delivered more than a dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). They’ve spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.

But prior to October 8, each of their presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, the trio was invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.

“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”

Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety. Continue reading

New Jersey teens headed to Yale to talk Tourette with resident physicians

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) and its renowned Patient-Centered Medical Education (PCME) Program will take center stage during a”Tourette Syndrome Youth Advocates: A Patient-Centered Education Model in Action” grand rounds presentation at 1 p.m. Tuesday, October 8, at the Yale School of Medicine.

Giving the presentation — a collaboration between NJCTS, the Yale School of Medicine and Yale Continuing Medical Education — will be NJCTS Education Outreach Coordinator Melissa Fowler, MA, MEd; Stuart Green, DMH, LCSW, the associate director of the Family Medicine Training Program at Overlook Medical Center in Summit, N.J.; and three NJCTS peer advocates: 18-year-old Grace Hawruk, 14-year-old Tess Kowalski and 14-year-old Tommy Licato, each of whom has presented multiple PCME grand rounds over the past several years.

Patient-Centered Medical Education is a unique education program for pediatric and family medicine physicians and residents that provides an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety.

The PCME grand rounds format features a discussion led by adolescents/young adults with TS and their families that is augmented by an experienced medical clinician. The learning objectives include identifying and differentiating between the signs and symptoms of patients with varying tic disorder; describing and identifying the most common associated conditions in individuals with TS; giving the latest advances and comprehensive approaches for treatment for individuals with tic disorder; and presenting a patient-centered perspective of life with TS.

The PCME program has been presented at more than a dozen New Jersey hospitals over the past several years and has drawn a wide array of praise, including the following testimonials from Saint Peter’s University Hospital in New Brunswick, N.J.; Newark Beth Israel Medical Center in Newark, N.J.; and Goryeb Children’s Hospital in Morristown, N.J.:

“The attendees gained valuable insight into Tourette Syndrome and came away with a dramatically expanded perspective on the difficulties patients and their families face. I would strongly recommend that you consider scheduling this type of grand rounds at your institution.” — Saint Peter’s

“It was great to learn about the day-to-day life experiences directly from the patient. Both Tommy and Sarah were bright, honest, articulate and courageous young adults. No one left the session unaffected.” — Newark Beth Israel

“Their ability to relate personal struggles and how physicians can improve their skills was well appreciated. It was refreshing to see two young men maintain a sense of humor with what is clearly a life-altering condition.” — Goryeb

More information about Tourette Syndrome, Patient-Centered Medical Education or the New Jersey Center for Tourette Syndrome & Associated Disorders is available by calling 908-575-7350 or by visiting www.njcts.org.

“Life With Tourette’s” documentary on NatGeo

Life With Tourette’s is a documentary that aired for the first time last night on the National Geographic Channel (NatGeo). It tells the stories of three individuals who are overcoming great odds to pursue their dreams. Here is the description from their website. It will next be shown at 6:30 p.m. Thursday, September 12.

Chris is a 35-year-old, bright, handsome man who has struggled to find a career worthy of his talents. He worked a series of dead-end jobs before deciding to go into training to become a park ranger. However, his very loud and disruptive tics may get in the way of him achieving his dream.

He knows that people are skeptical of him because of his Tourette’s. They see it as a disability, but he wants to prove them wrong. Chris goes through the training to become a park ranger but has a hard time controlling his tics in the classroom setting. He must also go through firearms training to pass the law enforcement academy.

At the gun range, Chris must command extreme focus in order to shoot his firearm. The instructor has doubts about whether someone with Tourette’s, who has uncontrollable twitches, can safely fire a gun. Chris nails the exercise and explains that any time he is in a very serious situation, he is able to control his tics. Still, not everyone passes the academy and he worries his Tourette’s will ruin his chances. Chris finishes his training at the academy and waits for a response to his park ranger application.

Louis is not where he wants to be in life. He is 27 years old and living in his parent’s basement. His dream is to be a standup comic. At 7 years of age he was diagnosed with Tourette’s and the doctors put him on medication. The side effect was severe weight gain. This meant he was not only the kid with Tourette’s, he was the overweight kid with Tourette’s.

It was then that he began using humor to cope with his disorder. He liked to make the kids at school laugh at his own expense so that they wouldn’t make fun of him. Now, he wants to make it big in standup comedy so that he can get out of his parents’ house and out on his own.

As a way of coping with his challenges, Louis goes to group therapy with others that have Tourette’s. It’s helpful to get together and share common experiences, but Louis also reports that it is “comedy gold.” He likes to use his sense of humor to bring levity to the sessions.

Louis gets a gig at a local bowling alley. He is always terribly nervous before any show, no matter what the size of the venue. He takes the stage and struggles to keep the room, but by the end of the show he has everyone cracking up. Louis is hopeful that he’s on his way to bigger and better things. Then he gets a big time booking at one of the best comedy clubs in New York! His nerves are on edge because he knows this could be a make–or–break show.

Zach was diagnosed with late-onset Tourette’s when he was 19 years old. He is now 27 and lives with his wife and baby daughter. His Tourette’s involves him repeatedly hitting himself in the neck with substantial force. Right now Zach makes and delivers pizza. He worries that he won’t be able to provide for his family.

His dream is to become a firefighter. He has applied at 13 fire departments and hasn’t been hired. He worries that closed-minded attitudes about Tourette’s will keep him from ever landing his dream job. Zach takes the fire department’s physical test; a very demanding obstacle course that will test his ability to react and maneuver in a fire.

He isn’t sure whether he will be able to hold his tics in during the test. He doesn’t want anyone from the fire department to know about his Tourette’s because he doesn’t want to jeopardize his chances. However, he finishes the test in record time. He successfully hid his Tourette’s from everyone and is hopeful that this time he will get the firefighter job. He just has to wait a week for a letter from the department.