A mentorship relationship has changed my life

I know I haven’t blogged in a while, but there has been a lot happening in my life and things have been pretty great. I want to update you all about something that has given me a lot of inspiration and hope about my future (and write this for myself to chronicle my college journey).

I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into. I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed).

I KNOW that my tics don’t effect my ability to be a student, to write, do research or succeed and move forward with my goal of getting a PhD in a very research-oriented area in ANY way. But that thought of “what if she doesn’t understand” was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!

Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/mentorship however, has blown me away.

Putting things in perspective for my readers a little: My professor (who I will call Dr. Brown) is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers and is as I have said a prominent and well-known researcher in her field. In other words, she’s awesome and anyone who is anyone in this field knows how she is.

In the beginning of the semester I went to meet with her to tell her about my Tourette’s/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn’t seem concerned at all.

Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken.

I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.

I stopped focusing on my tics in class, and more and more they weren’t even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.

Continue reading

We love teaching kids about Tourette Syndrome!

My sister Sarah and I did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…we killed it. :)

The presentation went great. The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want us to come back next year for the incoming 7th grade! Here are some pictures:

Tourette Syndrome is so much more than tics

Sorry there hasn’t been any posts in a while. All of us are busy with exams at the moment.

I would like to share with you my speech I did for my GCSE English Speaking exam about Tourette Syndrome so here it is:

Tourette Syndrome is a neurological condition which is categorised by “tics”. Tics are rapid and recurrent uncontrollable movements and noises. People who suffer from Tourettes are usually diagnosed at around 6-9 years old. Although, people may be diagnosed earlier or later than this. I, personally, was diagnosed with Tourette Syndrome 9 years ago, when I was 7 years old.

I have always been treated differently due to being adopted and, therefore, having older parents. I was always known as “the weird one”. People can be very mean when you’re different. I have always had Tourettes since I was little. I would often do something without realising and then get told off because of it.

I still do occasionally get told off for my tics, but then the person remembers that I have Tourettes and that I can’t help it. Even my parents do this sometimes. I may be tapping on something and they’ll tell me to stop only for me to remind them that I can’t help it. I feel like this only happens due to peoples perception of what a tic should look or sound like, but the thing is that there is no structure to a tic. They can be anything at all. My tapping tic is where I have to tap an object using a certain pattern which I have to repeat in sets of four until it feels right and if I mess it up, I must start the pattern all over again.

I can understand how my parents sometimes do not realise this is a tic, because it isn’t just a tic. It is also due to OCD. The counting part is OCD, and the part where I have to do it again and again if I mess up is also to do with OCD. It isn’t as though I think something bad will happen if I don’t do it, it is that my OCD makes me feel as though something might happen if I don’t complete it.

Due to Tourettes I also have other, related, disorders. OCD is the one I just mentioned.

I also have ADHD which causes me to get distracted very easily, causing me to often get told off in class for not concentrating, and I often miss things the teacher says due to getting distracted by others or writing down notes – I find it hard to concentrate on writing and listening at the same time.

There is also Sensory Processing Disorder. This means that I do not process sensory input in the same way as others do. There are certain noises I do not like and the only way to explain how they affect me in a way you’ll understand is that they hurt me, that is why I have my ear defenders. They protect me from these noises and I can also use them when I need to write and there is too much noise.

Due to this, at dinner time, I tend to sit in a different room to eat or listen to music while I eat so I don’t hear the sound of cutlery scraping on plates. My parents try not to do this, but it is hard to eat without touching your plate with the knife or fork so everyday, except Sunday, I sit in a separate room to eat. Hearing these certain noises that I am sensitive to makes it extremely hard to concentrate as all I end up thinking about is how I want the noise to stop, or that I want to get away from the sound.

All of this is just due to having Tourette Syndrome. People always assume that they know everything about Tourettes but it is so much more and can affect those with it in many different ways. I need people to know that there aren’t only tics that I have to deal with, but there are also OCD rituals as well as concentration and sensory issues too.

Tourette Syndrome is so much more than just tics. I want others to see that. Thank you.

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading

Youth Co-Chair believes people won’t be sorry if they come to NJ Walks for TS at Princeton on March 29

NJ Walks for TS at Princeton is a 5K walk and family fun run on March 29. With a little more than 2 weeks to go, now is the best time to register and start getting in shape for spring.

“People won’t be sorry they came,” Youth Co-Chair Ethan Lederman said. “They’ll get exercise, meet some great people who have TS, and support this very important cause.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder.

“It can be really, really difficult to live with TS, because you usually don’t just have TS but TS and a bunch of other disorders,” Ethan said. “It helps if you’ve known someone with TS because it’s hard to describe how it can affect your life and you might be more sympathetic about reminding people not to stare or assume you’re just a ‘bad kid.’ ”

Ethan met Tess and Paige Kowalski through the family retreat weekend program of the New Jersey Center for Tourette Syndrome (NJCTS). Tess and Paige both have TS, and Tess is the teen responsible for bringing NJ Walks to the Princeton area.

“We’ve had a lot of the same struggles with TS,” Ethan said.

Ethan and the Kowalski’s also share an interest in educating the public about the disorder. Through the NJCTS Youth Advocate Program, the teens travel throughout the state meeting with political leaders, and delivering trainings to peers and healthcare professionals.

“This year, I got to speak to a state senator and Senator [Robert] Menendez’s staff on all the ways I’m very grateful to have NJCTS,” Ethan said. “TS isn’t something people talk about very much. I’m very proud to be part of the walk because I know it will be a good one. It is very important because it spreads awareness of TS, which not that many people really understand.”

Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

“NJ Walks for TS is a one-of-a-kind event for kids, by kids,” NJCTS Executive Director Faith W. Rice said. “Our Youth Co-Chair committee is working hard to spread the word and invite the public to join us in a celebration of awareness, advocacy and acceptance.”

With spring and warm weather around the corner, now is the time to prepare for one of the first 5Ks of the season, or simply a stroll with friends and family. Registration and donations can be made through www.njcts.org.