Today, NJCTS Youth Advocates Anna, Sarah, and Eric Baldwin presented to the 7th and 8th graders at Clearview Middle School in Mullica Hill, NJ. Nearly 900 students and teachers learned about Tourette Syndrome, tolerance, and acceptance. The Baldwins were joined by their cousin Rachel who spoke about her TS for the first time! Here they are with Clearview Middle School Principal Robin Bazzel. We are so proud of the great work this family is up to, spreading understanding and awareness of TS throughout South Jersey. Bravo!
My name is Rebecca and I am a 7th grade student at St. Gregory the Great Academy in Hamilton, New Jersey. Every year, I am required to submit a science experiment to the Mercer County Science and Engineering Fair. This year, I have decided to conduct my research on Tourette Syndrome. I have been diagnosed with Tourette Syndrome since I was nine years old and I have a high level of interest in understanding more about the disorder. Many organizations, including: NJCTS, Camp Twitch and Shout, the Rutgers University Tourette Syndrome Clinic and my private doctors and psychologists, have been a tremendous help to me and my family in coping with my Tourette Syndrome. I have learned to accept my tics and to be proud of myself and my accomplishments. I am so much more than a kid with Tourette Syndrome. I am also a great student, a competitive swimmer, an avid reader and a lot of fun to be around!
Right now, I am asking for help with my research on Tourette Syndrome. I am looking for participants with Tourette Syndrome to count their tics for me. My hypothesis is that students with Tourette Syndrome will have an increase in tics after school. I need volunteers who are willing to count their tics for 30 minutes on 3 school days and 3 non-school days. My experiment is due on January 11, 2016, so I am hoping to collect all of my data by the end of December.
Here’s what you need to participate: A permission form and an explanation of the procedure and a data collection table. Please contact me at 609-647-6051 or email@example.com if you have any questions.
The NJCTS Tim Howard Leadership Academy is a unique and invaluable learning experience for teens with Tourette Syndrome. Over the course of these rigorous four days, participants will stay overnight at Rutgers University, attend engaging workshops that provide a deeper understanding of their diagnoses, participate in small group discussions and be encouraged to share personal triumphs and challenges, and will be challenged through numerous educational activities to develop their sense of self-leadership, self-empowerment, and resilience. Eligible applicants:
- Have a diagnosis of Tourette Syndrome from a qualified medical practitioner
- Are entering their Sophomore year of high school through having just completed their Senior year of high school by the summer of 2016
- Have an active interest in, and commitment to, their vision of themselves as leaders
- Are comfortable being away from home for four consecutive days and nights
- Can comfortably and meaningfully participate in an intensive, demanding learning experience with others who share their diagnoses, which includes comfort interacting with others and sharing information about themselves, comfort discussing their diagnosis, and comfort being around others who tic and have anxiety disorders.
- Ability to sit in a workshop setting for up to an hour at a time
- Requires feedback and a questionnaire from a medical practitioner who has seen the applicant within the past 12 months.
- Requires feedback from an educator who has worked with the applicant in a classroom setting in the past 12 months.
Because consideration for admittance is dependent on all aspects of the application being completed, you are advised to begin the application process as soon as possible to ensure a completed application is submitted by the deadline.
APPLICATIONS ARE DUE BY MARCH 1, 2016.
Participants form lasting connections, gain a better understanding of themselves, and walk away with a toolkit that prepares them for a successful future! Interested applicants should request an application by contacting Academy Director, Melissa Fowler, via email at firstname.lastname@example.org. Applicants who are being considered for admittance will be contacted for an interview by March 20th, 2016.
Thank you for your interest, and best of luck!
Having Tourettes for 15 years, I thought I knew everything about them. Or, at least everything about mine, but every once in a while I learn something new.
I have learned a lot about myself during this time. I have my normal everyday tics and noises that consist of hitting my sides, tightening every muscle in my body, as well as squeaks and grunts. I know that when I’m really happy or excited my tics are exemplified. My squeaks get louder and I have a full body tic where I’m smiling. When I’m mad or really upset I usually grunt and have a full body tic. I know I have my tics that only happen when I’m in the car, where I very quickly hit the gas with my foot revving the engine, or I ever so slightly turn the wheel quickly in one direction and then place it back going straight. I know whenever somethings on my head, such as sunglasses or a beanie, I usually have a head tic where I throw my head back. Along with that I have learned that too many sugary foods such as simple carbs (they turn into sugar in your body), sweets, and fruits make them worse. I’ve learned that when my tics are really bad and I have a lot of excess energy running or heavy duty exercising can help reduce them. I know if I do not take my medication at the same time everyday, or if I miss a couple of pills that my tics will get worse. I recover faster from too many sugary foods than missing my medication. There are waxing and waining period for Tourettes, and in the spring they usually get worse.
This is the majority of what I’ve learned, but what others notice and do can take me by surprise. When I have a lot of little tics and I don’t realize them, sometimes someone will let me know and I’ll be stunned thinking, “I thought I hadn’t been ticing at all.” When I get distracted and stop ticing all together because, in a sense, I have “forgotten” I had tourettes, I am surprised when someone brings it up because I didn’t realize I hadn’t ticed in X amount of time. I’ve found out when I become close to people, they normally don’t even realize I’m ticking anymore because they get used to is, which is nice for me to know. But my favorite was when my best friend asked me what I was concentrating on over the phone, and when I asked how’d she knew, she told me I have different tics when I’m concentrating, which I never knew.
Through trials and tribulations I have learned a lot about myself. I am consistently growing and trying to find more out about TS, and about my form of TS. It is just nice to know I’m not the only one discovering new things
I had been a blogger on here a while ago. Sadly, time had gotten away from me because of college and my studies, but I have more time on my hands so I wanted to get back into this!
I believe when I had started blogging I was either a senior in high school or a freshman in college. A lot has changed since then. I am currently a super senior in college. I have one final class this semester before graduating in December. College has been a lot of fun, and I truly feel that throughout this experience I have found myself. I know what I want to strive for to better myself and continue on my path of becoming the best me possible, and I believe I have matured into a woman who is a lot different then who I used to be (which I am very happy about). In high school I was very insecure. I looked to my peers on how to act, what was cool, and who I thought I wanted to be. I wanted to fit in, and honestly, who doesn’t? But high school was hard, I was only 18 when I graduated. Now being 22, almost 23, I realize how much I didn’t know about myself. I used to define myself only as the girl who has Tourette Syndrome. That was honestly all I thought people saw me for, but I was wrong. After some therapy and work, I was able to see that my TS was not who I was, it was only a small portion. I am a lovely, smart, funny, and charismatic woman who loves learning and being silly! Those are just a few words that I would sue to describe me. Now, I do not see my tourettes as a burden, but something that has made me stronger, something that I wouldn’t want to change. Instead of being ashamed of my tics, I have grown to continually learn more about them and myself and laugh with it. When I have a really excited tic, or when I’m really happy I usually tic and then giggle and smile. My friends know how I’m feeling without me having to tell them because of it. They know my happy tics from my mad tics, and my concentrating tics from my everyday tics. It has made me me, and now when people describe me and they say you know, the blonde girl who has tourettes? I’m not ashamed or mad, I’m happy about it. It makes me stick out, in my opinion, in a good way.
Granted, having TS can still be challenging. I still get some mean glares, or people making fun of it behind me back, but they don’t matter to me. If they knew me as a person and if they can’t put two and two together realizing that if I’m continuously twitching I’m not doing it on purpose, then I don’t care about them. They’re not important enough for me to spend time on. I’ll get this in passing sometimes, but it’s okay. I try to advocate as much as possible, but sometimes you can’t get to everyone. And honestly, I love advocating about it. I love when people come up to me and ask if I’m okay, even if it’s in passing. It makes me so happy because it shows me they’re concerned and care. I love educating and allowing someone to see if firsthand, so maybe the next time they see someone who has similar signs they’ll know and possibly be able to help or make the connection that this person has TS. Even if they can’t remember the name, they’ll think, oh hey wait I was that girl who had something similar to this, this person is okay.
I am happy there is more awareness and recognition for TS. I remember in 3rd grade when I was advocating for it in class, no one knew about it. In those years, times truly have changed. Almost always now whenever I tell someone I have tourettes and ask if they know what it is, they say yes. I still sometimes get ones who don’t know, but I love telling them and helping them understand its involuntary, just like a sneeze. I feel like educating others on it is so important, just like any other disability, or as I would prefer to call it, a little something extra.
Anyways, this post is already way too long. But it feels good to be back. I will be writing again soon, and I hope that if you guys ever have any comments, need help, or even advice, you’d leave a note. I love helping others, especially on this subject.
I hope you all have a wonderful day and I’ll talk to you soon!