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.