Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

Finally focused!

For my first blog I wanted to share a little bit about when I was first diagnosed. I’ve always been a little twitchy, I started blinking my eyes and sniffing when I was in preschool and developed many more simple motor tics. Since I was young, nobody paid any attention to it. As I got older however, my tics became complex and starting causing problems with my grades.

At this point, I was in fifth grade and my little brother had already been diagnosed. I knew I had Tourette Syndrome, too, so I sat down with my mom and told her about it. A few minutes later she was on the phone with my neurologist scheduling an appointment!

When I reached sixth grade my tics were awful. I couldn’t focus, I was always holding my tics back, and they were hurting me. So I did research and decided to educate my class on my disorder. My class handled the information so well and treated me the same as everyone else! It was such a relief for me.

But through my research, I found out about the Youth Ambassador program and we found NJCTS. Now, my I’m doing fantastic and I’m so thankful for all of the people who helped me along the way!

Tic-tic BOOM!

Hello all! I’m going to be frank; I’m new to the blog-world. Please forgive me if I sound too formal/don’t sound formal enough/don’t interest you/etc. etc. etc. I’m trying this out, and we’ll have to see if I have ANY skill. Perhaps I’m the next “Reality Steve”. Who knows?

OK. Since I’m aware this is ACTUALLY a wholesome teen blog (by the teens, for the teens) about Tourette Syndrome, I’m going to change topics. Hi! I’m Sarah! *Cue the “Hiiiiiiii Sarahs”* I’m a 17-year-old high school senior. When I was 7, I was diagnosed with Tourette Syndrome in 10 minutes flat. My parents were left with an uncomfortable diagnosis, no direction, and a tic-ing time bomb (see what I did there?). Not knowing what to do, they decided to keep quiet. No one knew about my TS until I hit the third grade. Only then did we realize as a family that silence only led to confusion and misunderstanding.

Since then I’ve been certified as a Youth Ambassador for Tourette Syndrome, and I’ve spent a great amount of time and effort presenting to more than 3,000 children, teachers, and doctors in order to displace the myths and stereotypes associated with this medical condition. It’s been a long ride, but also a great one. Now I’m here.

I sing, dance, act, and play a host of sports. I love long walks on the beach, and I’m a total catch ;) haha. However, jokes aside, I’m a girl who has learned, with a lot of practice, to overcome any obstacle Tourette Syndrome has ever thrown my way. I’m proud to say I can do anything and EVERYTHING I set my mind to, and I live for that challenge. My advice? Show everyone what you can do, and don’t apologize for everything that makes you great—including your TS. It’s a part of you. It’s a part of me. But it ISN’T ME. I’m greater than a diagnosis, stronger than the sum of my parts. I can’t wait to share myself with you.

Tic-tic BOOM!

2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

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!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

Making friends can be very hard in college

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus, too. Her tics are more mild than mine, and she told me she doesn’t really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state’s TSA’s.

She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how I’m a counselor at Camp Twitch and Shout, hoping she would be interested, but she said that if she ever went to camp she would come home crazy.

Which is true — I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level. Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes.

I told myself I wasn’t going to message her on Facebook afterward because I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn’t help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD …

Anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person renegades of the fact that we both have TS, but I think it’s probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one-on-one, even though we are both on the disability awareness committee and both have TS.

I guess I feel this way because I have been feeling pretty low lately and don’t want to get my hopes up. I miss my two best friends who of course go to different colleges than I do. I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college.

I feel like a lot of my friendships here can be very surface level and like I can’t talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness and understanding, and the ease of making friends that I had at camp. It’s just not that easy here at college. It’s hard.