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.

 

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.

 

New Jersey students get lessons about Tourette from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

“Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all,” NJCTS Education Outreach Coordinator Gina Jones said. “He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion.” Continue reading

We love teaching kids about Tourette Syndrome!

My sister Sarah and I did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…we killed it. 🙂

The presentation went great. The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want us to come back next year for the incoming 7th grade! Here are some pictures:

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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If you can dream it, you can do it!

Hi everyone! Here is an article on an interview I did earlier this month. Hope you enjoy it and get the message! 🙂

Once you meet Laura, you will always remember her. She is an amazing teacher not only because she loves her work but also for the path she travelled to become one with Tourette’s Syndrome (TS). She refuses to be limited by her disability and believes it has been the driving force behind her desire to achieve things.

For Laura there was only one career objective – to help children with their disabilities. Studying psychology was her original plan, but the academic schedule was not compatible with her TS, so she had to give up this choice. Her determination made her continue and in April 2014 graduated as an elementary school teacher. She says: “I have my goal and might have to go around to reach it…but I will get there!”.

Do her students treat her differently? Actually no. Her students do not seem to care or notice her symptoms. She explains that because of her TSLaura  can relate to pupils with learning disabilities and also identify herself with them “I have something too, it’s called Tourette’s” she tells them. As a teacher she is very creative and gives her pupils this motto “If you can dream it, you can do it”. Laura passionately believes that teachers should focus on student’s abilities and not their disabilities, give encouragement, look at the positive side of things and inspire pupils to be positive.

Laura’s commitment to helping children extends beyond her own country – Laura is now a teacher supporting education in Lira, Uganda. Through Edukans, an organisation that helps disadvantaged children in developing countries attend school, Laura is helping Ugandan teachers to improve their lesson plans, create class materials and support pupils.

Source: http://www.tedxamsterdamed.nl/interview-laura-beljaars-teacher/

2014 NJCTS Children’s Scholarship Award Essay: “Born to Stand Out”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

At a young age, I was faced with a choice. Let the diagnosis I just received define me, or accept it as part of who I am and embrace life head on. I chose the latter. I was diagnosed with Tourette’s, OCD and ADHD.

When some people hear Tourette’s, they automatically think of society’s inaccurate portrayal of a disorder where people shout out obscenities or inappropriate words. They treat it as a joke, as if people who live with Tourette’s choose to do the things they do, or could stop it if they wanted to. Very few people understand what having Tourette’s is really like.

Over the years, l’ve experienced a wide range of tics. My motor tics included excessive blinking, sniffing, jerking my neck, and popping my shoulder, often making everyday life uncomfortable and awkward. l’ve had vocal tics where I would constantly clear my throat, grun! or make strange noises that would often draw confused and disapproving looks from those around me.

Living with this disorder has been far from easy, fraught with physical pain and many ups and downs. When I was younger and just learning to cope with my Tourette’s, my tics would make it difficult to focus in class. Having an eye blinking tic or neck tic would make it difficult to read. Nevertheless, I pushed myself to make the honor roll every marking period from third grade on.

Whenever the classroom got quiet and the teacher was speaking, I would feel the eyes of my classmates burning deep into the back of my neck. lt was as if they had laser vision, with eyes fixated on me, examining my every move. Regardless of whether anyone was looking or not, I was different, I stood out and thought they were staring at me.

I would try to suppress the tic. But that’s just like trying to stifle a sneeze or resisting scratching an itch. Eventually you just have to do it, just as I do when the urge reaches that point of becoming no longer bearable. With time, therapy, and educating myself on Tourette’s, l’ve learned to adapt to the struggles this disorder entails.

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2014 NJCTS Children’s Scholarship Award Essay: “Tourette doesn’t define me anymore”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I don’t remember anything from my middle school years. It’s such a blur to me. I made myself not want to remember. I didn’t want to hear the other students laugh at me; calling me “Twitch,” “Twitchli’ or hear them say, “Hey everyone! Let’s do the Julia!” That’s what I heard in those hallways.

That’s the kind of stuff you would hear being said about a young girl with Tourette’s syndrome. Tourette’s syndrome is a neurological disorder that is characterized by uncontrollable tics, body movements and noises. It is caused by the nervous system. I was diagnosed with Tourette’s at the end of fifth grade.

My tics started around the beginning/middle of that year. Teachers weren’t attuned to bullying in those days, so I was left by myself to suffer. I would get in trouble with my teachers for making noises, rolling my eyes, raising my brows and having an episode. They wouldn’t believe me when I said I couldn’t control it. Some even made fun of it. They didn’t understand what I was going through. No one did. Not even my own family. They would yell at me to be quiet all the time.

Memories from middles have returned and I’ve had flashbacks from that time I remember being in the guidance office at least twice a week, whether it was during lunch and recess or during a class. I remember eating my lunch in the bathroom, sitting in the corner on the floor or in the giant handicapped stall.

During a huge science project in 6th grade, while I was giving my presentation in class, I became so anxious that my tics became uncontrollable, causing the other students to laugh at me. I finished my presentation, but as soon as I was done, I ran out of the classroom hysterically crying and embarrassed.

Over the years, my tics have gotten better and people have become more understanding. Now, I have an amazing group of friends. I have participated in the musical at my high school since my freshman year. I can say that I sang the National Anthem at the basketball games for boys and girls and wrestling matches at school.

I’m friendly to everyone I know and meet, despite how other treated me in the past. I am more outgoing than I was in middle school. I dance, sing act and even model now. Doing these activities have made me more confident. In everything I do now, I don’t let this disorder be such a conflict in my life.

I have been a victim of Tourette’s syndrome for more than eight years and have learned to deal with it. It’s part of my life whether I like it or not. TS has made me stronger and I will not let it become my biggest deficit. I will not let Tourette’s define me anymore.

2014 NJCTS Children’s Scholarship Award Essay: “I’m Moving On”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

Tourettes. We all have our own challenges. Mine has a name. It is a name that will be with me forever. So what do I do? For me, l just move on, When I was twelve years old I was diagnosed with Tourette Syndrome.  I couldn’t control the tics that my body was doing, I was having a harder time in school, and my teachers and family were becoming less patient. I had been already been diagnosed with ADD which made school and other work harder and while my Tourettes was not as severe as some other cases,  it was still a struggle.

Tourette Syndrome (TS) is a neurological disorder in which causes involuntary motor and/or vocal tics and twitches. TS has coexisting conditions such as ADD/ADHD, speech and motor skill deficiencies, and Obsessive Compulsive Disorder. Although 1 out of 100 children have Tourette Syndrome, it is a commonly misunderstood disorder and there is no cure. When I was first diagnosed, my tics included various vocal, facial and motor tics. Tics are like a sneeze in that you can’t stop them from happening.

Having TS can feel like being a puppet on a string with someone pulling your body  in ways that you can’t stop. lt can be so consuming to try to do the tic or try to stop from doing it, that you can’t think of anything else. Tics wax and wane so you never know what each week will bring.

Despite the complications and difficulties resulting from various symptoms, the personal philosophy that I have developed has always been to deal with “the hand I’ve been dealt” and keep moving forward.

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