An empowering, invigorating, life-changing experience

In 2014, NJCTS introduced the inaugural Tim Howard Leadership Academy—a four-day intensive program for high-school-age teens with Tourette Syndrome, held in August at Rutgers University. The experience was life-changing for the participants and we are thrilled to be able to bring it back this year. Recently, NJCTS Tim Howard Leadership Academy Alum Hallie Hoffman wrote about the profound impact the Academy had on her. 

Imagine you are a teenager, and you have come to a place where there are many other kids your age. Many of them share similar interests as you, and all of you have come here to learn and have fun. You will meet adults who are proof that you will do fine in life. You will learn about many different aspects of yourself—physically, emotionally, and socially—and you will feel comfortable sharing these because no one is judging you here. You will talk and laugh with kids whom you have become closer with in only a few days than people you have known for years. You all came here because you share Tourette Syndrome, but what strikes you the most about the other kids is everything except that. You see them as athletes, musicians, actors, writers, dancers, and now friends. None of them are defined by their tics, and you know that they don’t define you by your tics either. Most importantly, everyone gets it. They understand the sadness, anger, frustration, shame, and fear. They know what it is like to feel alone, to feel different. But in this moment, none of that exists anymore. For the first time in many years, possibly even your entire life, you know that you are exactly where you are supposed to be.

This is the NJCTS Tim Howard Leadership Academy. Last summer, I had the incredible opportunity to be a part of the inaugural group, and it was a life-changing experience. Prior to the Academy, I had never met more than a few kids with Tourette Syndrome, and I had never met an adult with it. At the Academy, I was able to clearly see that I am not alone. Talking with such confident and accomplished adults who also have TS gave me the confirmation that I needed to know that TS will not stop me from getting where I want to be in life.

It was not until I went to the Academy that I realized how much I had unconsciously suppressed my tics. Knowing that my tics didn’t require an explanation and that no one would feel uncomfortable by them gave me the freedom I needed to let them out. In doing so, I learned just how exhausting it had been to always attempt to filter my tics. Most incredibly, my tics quickly lessened because there was no added stress or effort to suppress them.

I remember the one night that a group of us huddled together around the piano, joking about how talented people with Tourette’s are. After singing many different pop songs and show tunes, we finally sang “Let It Go” from Frozen. As soon as we had finished, all of us realized at the same time that this was the perfect theme song for people with TS. The words “Let it go, can’t hold it back anymore,” and “Let the storm rage on, the cold never bothered me any way,” were a perfect narration for our lives.

Those three days were some of the best of my life. I met so many incredible kids and coaches, all of whom have inspired me. Learning about other people’s lives with Tourette’s helps me understand that I am never alone, and that there are so many others who understand my struggles. I still use everything I learned from the Academy, including everything from how our brains work differently, to study skills to help us in school, and even ways in which to relax that can lessen tics. One of my favorite activities, hearing from a panel of adults with TS, was an incredibly honest and enlightening experience. All of the participants had so many questions that had been on our minds, such as how TS can affect us in college, jobs, and relationships. The coaches answers were amazingly truthful in a way that brought us all together, and they reassured us that while there are struggles ahead, everything will be okay.

I am beyond excited to have the opportunity to return to the Academy this summer. I cannot wait to see the friends I made last summer, and I look forward to making many new friends as well. What is so amazing about the Academy is that it is something that never gets old; even though I went last year, there is always so much more to take from this experience. The Academy is a place where kids with Tourette’s can come together and grow, no matter where they are at in their journey when they first arrive. I know that this year I will learn a completely different set of lessons and skills, because I am at a different place in my life than I was last year. It is with this flexibility and focus on both individuality and the community that the Academy is able to offer so much to every person who comes.

I truly wish that all kids with Tourette’s could attend the Academy. It was such an empowering, invigorating, life-changing experience for me. Because of the skills and confidence that the Academy gave me, I was able to really start to speak out this year and be comfortable in who I am. A famous soccer goalie says to kids with Tourette’s, “You can do anything any one else can do.” This is what the NJCTS Tim Howard Leadership Academy has taught participants such as myself, and I look forward to this year when it will continue to spread this message of acceptance, self-esteem, and empowerment.

2015 NJCTS Youth Scholarship Award Essay: “The Things That Make Me Tic (Pun Intended)”

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!

AlecW

AlecW

It is about 11:45 on a Wednesday morning, My friends and I are leaving Panera, where we just had lunch. As we are on our way out, my head jerks against my shoulder, and returns to its normal spot. This is common for me. It is just another one of my tics, But, as I look up, I see a man staring at me. His eyes are wide, and he makes a wide path around me, I stick out my chin and walk away with a smile. One man’s reaction to my Tourette Syndrome means nothing to me, but how I have grown to overcome it means everything. I have Tourette’s, and I tic, and sometimes I cannot control it. For me, however, it is not a barrier. It is a motivation to work harder. Like most people who have Tourette’s, I do not involuntarily swear (less than ten percent actually do), but I am proud to represent everyone no matter what form of the condition they have, I try to be a model of “Nothing is impossible to overcome!” When I see people look up to me, it makes me feel good to stand for what I believe in.

Last fall I auditioned for my high school musical, Young Frankenstein, In the past, I had been cast in mostly ensemble or minor roles, I assumed it was because the director thought my Tourette’s would be a distraction to the audience. I did not care that I was probably going to be given the same sized role as I had in prior years, I sang my heart out and acted to the point where I left my audition exhausted. Two days later, I was cast as the lead, Dr. Fronkensteen. My Tourette Syndrome was no longer an obstacle in my eyes. I have learned that when I am on stage, my tics disappear. I am a completely different person. I worked as hard as I could to get to this point, proving I can be an inspiration to others. When I work my heart out, I can beat any obstacle, especially if it is something preventing me from doing what I love.

In Spamalot a musical I performed in last summer, there is a song called “Find Your Grail.” It is about finding what a person desires to make him happy. I have found my grail: theatre. It is the aspect of my life that has had the most major impact on my development as a young adult. Theatre has taught me the importance of leadership, confidence, and commitment, and aided in developing my creativity and communication skills, It has helped me grow into my shoes by teaching me that being who I want to be is what matters; no one else’s opinion should affect how I think of myself.

Finding my grail has completely changed the way I look at the world. One moment I thought I knew myself, and the next, I realized that my grail was not at all what I thought it was, Maybe my grail is being who I want to be, Maybe it is truly being myself, knowing that every day, my Tourette’s is not a disability, but a motivation to work harder. I am proud to say I have Tourette Syndrome, and I am proud to call myself an individual. I am who I want to be. I am Alec.

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.

2015 NJCTS Youth Scholarship Award Essay: “Defining Myself”

This is an anonymous essay submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. We hope you enjoy it!

As I think about my journey in life so far there is a central theme of determination that truly has identified who I am. Around the third grade I became distracted just trying to manage what seemed like ridiculous and annoying random movements. These daily distractions interrupted my life as a child and so after many months of medical tests, I was diagnosed with Tourette’s syndrome. The diagnosis gave me some answers and peace of mind yet I still struggled with many unanswered questions. I used to think that if I could just control the tics then I could get on with my life. However; it took medication and several types of therapy to help mask some of my tics. Sports were always a great distraction for me and became a stress releaser. I played just about any sport there was like travel soccer, baseball, lacrosse and eventually power lifting. While on the field I was free to be me and my opponents simply focused on the athlete in me and not necessarily the boy with Tourette’s. I have personally experienced the positive impact that sports can have on your confidence and sense of personal achievement. I have also witnessed the satisfaction and sense of accomplishment experienced through working as part of a team.

Furthermore, I have experienced roadblocks such as being asked to take study hall instead of wood shop and endured the brutality of bullying due to my condition. By the way, I took wood shop and earned an “A”. Fortunately, I have also always had the benefit of being part of a very close family which has motivated me to stand up for myself. They have continued to believe in me and encouraged me to be the best person that I can possibly be. I do not let difficulties stop me from succeeding, but accept the challenge to remain focused on my goals.

Staying focused on personal goals gives me purpose. I know that so much can be learned from sharing personal experiences with others. This gives us the insight to realize that even though we come from different backgrounds, origins or statuses that we all face many challenges. These challenges may not be obvious at first sight but they shape the people we have become. I know my perception of others has changed especially while working with special needs kids. Through the special needs soccer program I have experienced firsthand how a sense of accomplishment can brighten the face of a child. Each person has the ability to impact another person’s life and talents to share.

Finally, I think that having Tourette’s has made me even more determined to prove that I am so much more than a person with a condition. I am a person who sets goals and works tirelessly to reach those goals. I know that hard work and passion are what defines me. I will continue to follow my path to discover my destiny.

#My5ChangesLives

#My5ChangesLives

#My5ChangesLives

Invest in NJCTS Youth Development programs
Donate at http://gofundme.com/TimHowardTSFund

  gfm_logo_300dpiWe are introducing a social media campaign to help raise money for NJCTS Youth Development programs including the NJCTS Tim Howard Leadership Academy and we want you to join us. As you may know, we are trying to build momentum to increase GoFundMe donations and a little goes a long way. If we can get as many people as possible to donate just $5 we can make a difference.

Invest in NJCTS Youth Development programs. Donate at http://gofundme.com/TimHowardTSFund

Donate $5 or more and challenge your friends and family to do the same. Then, take a picture of your hand, your 5, and use the hashtag #My5ChangesLives on Facebook, Twitter, and Instagram.

Your messages can be as simple as:

  • Or share your story and add… Please give me “5” by donating $5 (or more) to NJCTS Youth Development programs. http://bit.ly/1IROIoA #my5changeslives

As many as 20,000 kids in NJ have TS. That means there are thousands who would benefit. If we all gave a little, the NJCTS Youth Development programs will grow to meet the needs of more kids and teens. All it takes is $5 to change lives, share at http://bit.ly/1IROIoA. Imagine what we can do with more!

Thank you for your 5!