Two weekends ago, my sister and I went to the Tim Howard NJCTS Leadership Academy. It was such an amazing experience. I made so many new friends and I learned so much! We had the opportunity to hear from medical professionals and learn more about our disorder. We worked hard while we were there, but we had so much fun. We immediately bonded with everyone there, and I would highly encourage others to go!
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!
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.
Feeling a little better about my new swearing tic thanks to my amazing friends! I was texting one of my best friends in college who is going to live in my suite this year and I told him about it. He was so amazingly supportive like always. We’re going to be in a class this year together and so he texted me back saying, “if you do it in class, i’ll give a mean glare to whoever looks at you!” He also said, “I was going to say that I would swear with you, but then I realized that would cause more problems. haha, if we aren’t in class I’ll definitely join in.”
I have the best friends in the world! I was feeling so nervous about starting school with this new tic earlier today before I talked to him, but now I’m feeling so much more confident and less nervous about it. Out of all the things I can try to do to make myself feel better when i’m ticcing or nervous about ticcing, nothing helps more than when other people make me feel at ease about my tics by standing up for me when people stare, joining in with me, or joking with me/making light of my tics.
Accepting and supportive friends truly make such a huge difference in my life that I can hardly put it into words. Thank you to all those friends out there who are our first line in emotional support. You do more for us than you could ever imagine.