Middle School Graduation

I never quite felt like part of my friend group. It really is ironic, because we are all really great friends. We’ve all shared personal experiences, had deep conversations, slept over, made ridiculous nicknames for each other, revealed our sexuality and current crushes, and we’ve kept all of our secrets in a tight bundle. Yet my mind is, of course, an inexplicable place that is full of anxiety, which leads myself to doubt the friendship we’ve built over the past 2 years. This made me want a “new start,” where I could be a “better” and a more “likeable” friend and person in general. I thought this “new start” would take place perfectly in High School. But now I know how far I’ve come―that I am really going to high school―I’m feeling so many things.

Last Friday was graduation. I’m done with middle school, now. I even received an achievement award. I was really, really confused. I thought I heard my name wrong. After summer ends, I’m going to be a freshman. A freshman. A high-schooler. It’s really happening. I’m might not be able see all of my friends everyday. We’re going to the same school. But I’m not going to have any classes with Amy, and I’m scared that it’ll be the same with my Hubby, Mayo, Ellen, and Pantyhoe (nicknames).

My friends have been there for me all the time, ever since I came here. I know we can still hang out, but I also know it’s realistic to lose friends in high school. I cried a lot yesterday, thinking of Ray* being my first friend here, and how much he developed as a person and my friend. Thinking of how much I loved them and appreciated all of them: I just hadn’t known how much until I realized this could end right here. I feel nervous and scared for high school. I feel excited about making new friends. I want to make new friends. But I don’t think I want to say goodbye to my friends who have cried with me, wiped my tear for me, and my friends who I have wiped their tears for them and made them smile afterwards.

Teen Arts

Today was a great day. I have been feeling so down lately, but today was a great day.
Our school has a special day called Teen Arts once a year. We submit artworks, writings, and listen to people play music. It is a special day where our school artists get to share our experiences; a day where our artists share their passion. Last year was my first year at Teen arts. I shared a piece about my Tourette’s and what life was like living with it. This year, I shared (another) personal essay; mostly about accepting my TS, my complicated relationship with my mom and sister, and my manic depression. To be honest, I wasn’t confident with this piece. It was something I wrote when I was feeling very emotional and inspired, but I hadn’t planned on reading it.

Our bus came late, so we only had twenty minutes to share our creative writing pieces. After a girl a grade lower shared her amazing short story, we had five. Then, when my favorite teacher requested me to read my writing, I was ready. I spent three days thinking of this moment. It sounds too dramatic, but it’s true. I was about share a part of me no one knew. I took a deep breath and read. I stammered, a bit, but it felt like being freed from a cage. When I looked up, I saw my teachers looking at me; not crying, like last year, but smiling. As if they were proud. On the other hand, I did make some of my friends cry. (My good friend who hates crying, cried. It was a little funny, because we hugged–which she hates doing, tooso many times, and started laughing as she continued to cry while doing so.) They came up to me and hugged me for thirty minutes, and I couldn’t have been more appreciative of them. They couldn’t fully understand what I was going through, but they were there for me-and that meant something.

Having Tourette Syndrome and depression is hard. But it helped me realize how much my father tried to make me happy; how supportive the people around me are, and of course it helps me grow stronger every day. Even in difficult times, my mental illness helps me realize my mistakes and become a better person. Today, I felt happiness shine on my friends and I as we pranced under the sun. Through tears and smiles, we walked together.

2017 NJCTS Youth Scholarship Award Essay: “How Tourette Syndrome has Played a Part in My Life”

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

Nicholas A.

When I was in kindergarten, my home was full of stress. I don’t remember actually knowing why, I just knew my home was different than others. I had a younger brother being diagnosed with Autism, parents who didn’t get along, and my mother was battling cancer. Needless to say, things were a bit stressful.

It started with just slightly shaking my head, and eventually over the course of the year, progressed to also making musical noises with the head shaking. I wasn’t aware that people were noticing it until I got to third grade. My friend asked, “Why do you make those noises.” Once kids started noticing, and my grades started to be affected, my mom took me to a neurologist where I was officially diagnosed with Tourette Syndrome.

I was put on medication which worked beautifully, my mom got me a tutor so I could catch up, and socially I began to develop. Once I reached this point, my mom and I started talking openly about stress and how to manage it, as well as when it’s time for help. Let’s face it, life is full of stress and changes. It’s just the way life is, maybe more now than ever before.

I’ve learned to stay active in sports, have a nice work-play balance, and try to get enough sleep, and eat right. I do believe it’s a combination of all these things that has helped me manage my disease as well as I have. Over the past decade, I’ve only needed to return to a medication regime, and only for a very short period of time. I’m aware my future is unpredictable, but I do feel that with the right tools, my future will be bright and productive.

Tourette’s does not define me. It’s part of my life and always will be, but has forced me to take care of myself mentally and spiritually, which can only be a good thing in my eyes.

2017 NJCTS Youth Scholarship Award Essay: “My Tourette’s, My Advantage”

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

Tim Howard, an amazing athlete playing Premier Soccer and two-time representative in the World cup. He defines himself as a player who happens to have Tourette. We have this in common. No, I am not a professional soccer player, but I am a successful student, passionate person, and someone who has compassion for everyone beyond belief, who happens to have Tourette. Many view my Tourette as a disability. I, on the other hand strongly believe it is to my advantage. The person who I see in the mirror everyday is not the once shy kid who was afraid to speak out. I am someone who is not afraid to advocate or my condition, someone who smiles at the sight of a challenge, someone whose ambition is so high that whatever my life has to throw at me I can easily pick myself up, dust off my shoulder and trek forward. I already have one challenge completed: not let my Tourette control me.

I was diagnosed with TS at seven years old, and Howard was one of many who my dad told me about who was very successful in various fields of life that had Tourette. It was great to have these examples when I was forced to resolve awkward questions from peers and the occasional bullying in school. Even teachers would make comments about the unusual things I would do in the classroom. I was very shy about my tics and never spoke out to advocate for my condition. As I look back to who I was then, and who I became today I realized that the NJCTS Tim Howard Leadership Academy changed me. Those three weekends showed me that I don’t have to hide, and I should be proud of who I am.

During my first year at the Academy, my confidence boosted tremendously. I was able to talk about my tics in a light-hearted fashion and I also started to feel a sense of pride about having Tourette. I no longer view Tourette as a disability because it makes me who I am today. Throughout the academy many professionals in the medical field helped me to improve myself with the condition I have. With this new information, I was able to teach important lessons and advocate for others at the end of my third year. The coaches and others who attended the academy made me a better person today by teaching me how to advocate for myself. They shared stories with me in meetings which allowed me to share my story, thus shaping me into the person who is not afraid to speak out and advocate for our “advantage”. The Tim Howard Leadership Academy is near and dear to my heart. This academy was the first time I was able to express my true self in front of newly made friends, and not to be embarrassed about my condition. It was a great opportunity to let out my inner “Noah” without the fear of rejection and abnormalcy to people who go through similar situations in their life.

I truly believe that my Tourette has guided me to become a person who not only could defy expectations but to accomplish triumphs I never expected to complete. Who would have thought a kid with a so-called “disability” could get into every school they applied to and have so many options to better their future. I would encourage people with Tourette or other “advantages” to speak out, to let the world know that we can do anything we set our mind to. Yes it might be a struggle, but that just means we will work 10 times harder than an average person. Whatever my future is – a doctor, a lawyer, a teacher – I know that with my little buddy by my side (Tourette) we can defy the odds and do anything. Now I might not be the greatest athlete or the most brilliant student but I am who I am. The condition called Tourette will be a part of me for my entire life but it will not be a limitation. I cannot control how people view me. can only control how I view myself.

 

2017 NJCTS Youth Scholarship Award Essay: “The Imaginator”

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

MichaelP

It was Halloween season and the teacher handed out gigantic Goosebumps posters. Without warning, they exploded into a creature made from green ooze, multiplying, contaminating, and encroaching the whole school. The creature splattered out like syrup that someone had microwaved. Its mere presence made me falter, go numb, and want to scream. Terrified and alone, I was surrounded by classmates who were now infected by a horrific parasitic slime. I hid under a desk to protect myself.

For months, this surreal episode haunted me in school every day. Eventually, I was diagnosed with Tourette Syndrome, Obsessive Compulsive Disorder, and General Anxiety Disorder. My motor tics were both involuntary and compulsive. I also created mental compulsions in my imagination to combat anything ‘bad’ to keep me safe: First, I focused on my defense, using my mind to create an energy shield all around me. I then built up my offense: I kept billowing imaginary fire from my body to blast and obliterate the green slime until it burned up into clear smoke.

I had to be home-schooled for a year before returning to middle school. At one point, I wondered exactly how long I would live with these disorders. With the support of many people, I slowly gained better control of my tics and compulsions. I was gradually integrated academically and socially. I learned to control my ‘imagination’, to bend it to my will, and master it instead of letting it run wild. It was no longer a curse; it was a blessing. I gradually developed the ability to harness the power of my imagination to help me face my circumstances and view my world in new and unique perspectives.

When I had few friends, I created my own friends and various worlds in my mind.  These friends were different versions of me: a hero, an explorer, a swimmer – all different types of characters with their own personalities.  They shared with me their stories and aspirations. They whipped me back into shape when I needed some tough love. They reassured me it was cool to wear “socks with Crocs”, and honorable to stand up for a friend being mocked. I was determined to be an independent thinker who does not follow the masses or seek approval from my peers.

Nowadays, I rarely need to purge my fears with imaginary fire. I no longer need the crutch of my imaginary friends. My imagination has become my arsenal of inspiration. During swim races, I create vivid images of a world where water becomes air, pierced through by my wings as I fly through the air like a falcon. Other times, I become a jet fighter flying over the Pacific, touching down on an aircraft carrier. Each time I finish the race into the wall, it is like my wheels slamming upon the metal deck of the carrier as I screech to a halt. When I study Chinese characters, the lines move, forms bend, and shapes dissolve to reappear in my mind as pictograms that the characters once originated from. The pictograms become animated images. The Chinese characters literally become characters with dialogues and actions in a story.

The images and stories in my customized universe, created by my ever-active imagination, have become the source of my strength and my vision. They encourage me to overcome the impossible and inspire me to reach beyond the seeable and the thinkable. The characters and creatures are akin to my children; they are my legacy. I have a spot for every one of them in this technological age of virtual worlds and merged reality, where anything is possible in video games and digital animation. I dream of bringing them to life and turning their stories and their worlds into stunning, exciting, and unique sensory adventures.

As I reflect on my TS and OCD experience, it’s hard to believe I was that fragile kid and how far I have traveled in this journey. Through force of will and discipline, and with the support of many people, I steadily overcame my adversity. I have learned to face down my fears and stand up to negativity. I am more confident with who I am, and more compassionate towards other people’s unique situations. Since my symptoms never truly disappear, they are daily reminders to keep fighting. Working extra hard and advocating for myself, I have come to terms with who I am. I look forward to a bright future.

Hillsdale Teen Inspires his Community to Tackle Tourette Syndrome

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette's walk on May 22, 2016.

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette’s walk.

Mike Hayden is taking his Tourette Syndrome advocacy efforts to the next level.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Hayden, now 16-years-old, was diagnosed with TS in fourth grade although he started showing symptoms in kindergarten. In 2012, he decided that he wasn’t going to let his diagnosis hold him back so he stepped up to become a Youth Advocate for the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

NJCTS Youth Advocates lead presentations about TS in schools and community groups to raise awareness, promote understanding and tolerance, and deliver a strong anti-bullying message. They also present with NJCTS-partner doctors at hospitals to educate medical professionals about TS.

When it was time for Hayden’s honors English class at Pascack Valley High School to choose an issue to which to bring attention for their final project, Hayden shared his personal journey with TS and the class was instantly inspired. They organized the group “Teens Tackle Tourette’s” and spent the school year organizing, promoting, and producing a fundraising walk.

“It was an incredible feeling to know that my class truly cared about this cause,” said Hayden. “They knew it was close to my heart and I had many people tell me that there was no question in their mind that this is the cause they wanted to support. It is amazing that they would support me in raising awareness for this issue that many people are incorrectly educated on.”

Hayden recalled that when his family needed help after he received his TS diagnosis they called NJCTS for education and support. To better educate his classmates, he decided to partner with NJCTS Education Outreach Coordinator Gina Maria Jones and Executive Director Faith Rice for a series of in-class presentations about Tourette Syndrome and associated disorders.

“I figured that if we were going to learn about TS, we might as well get the experts in to help teach us,” said Hayden on reaching out to NJCTS for guidance. “I have had many years of experience with NJCTS, so I know that they are truly the best of the best when it comes to education and outreach.”

The Teens Tackle Tourette’s T3 walk took place on May 22 at the Pascack Valley High School Campus and raised more than $1,120 which was donated to NJCTS. During the walk, there were several guest speakers as well as food, games, and giveaways.

“NJCTS is proud to work with young people who take the initiative to raise awareness,” said Education Outreach Coordinator Gina Maria Jones. “It is because of Youth Advocates like Mike that our Youth Development programs are so successful and we hope that all kids living with TS will follow in his footsteps.”

Soon after hosting the Teens Tackle Tourette’s walk, Hayden led a Youth Advocate presentation to 150 fifth graders at Fairmount School in Hackensack on May 24 and delivered the keynote address at the Dare to Dream Student Leadership Conference at William Paterson University in Wayne, NJ on May 25.

“Youth Advocates like Mike Hayden live out the mission of NJCTS and advance public perception, understanding and acceptance of people with TS and associated disorders,” said NJCTS Executive Director Faith Rice. “We are so proud of everything Mike has accomplished.

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.

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.

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 Jacob speaks to students at Deal School

Recently, NJCTS Youth Advocate Jacob Gerbman presented to the fifth graders at Deal School in Deal, NJ. The students learned about Tourette Syndrome, acceptance, and treating others with respect. After Jacob’s presentation, the students welcomed their classmate, Nolan, to the front of the room to answer some questions about his experience with TS. Together, Jacob and Nolan helped to create an open and supportive atmosphere for all students in attendance. School counselor Christine Priest said, “Jacob was amazing. He was such as good role model not only to Nolan but the other students as well.” Nolan said afterwards he “felt like a star!”Image-1 Image-3 Image-5 Image-8