Doing life on my terms: Heading to Africa to teach!

This is the blog I was actually going to write when I started about June 7! You all know that I have done some very exciting stuff lately, with my trip to Athens and my speeches there, but you should know that there is another thing in my life that I am as passionate about as I am about Tourette: education.

Hopefully, in May 2014 I will graduate and be an elementary school teacher (kindergarten and 1st-6th grade). But I’ve always wanted to go to Africa and help with the education there, as I believe education is where it all starts and how problems can be solved. It’s also what we do with TS awareness: educating the public about what TS really is.

So I really want to go to Africa to teach and to motivate children (and their parents) to go to school and to get a good job. And that’s exactly what I’m going to do! This Sunday, July 7, I’ll leave for Uganda for two weeks to teach and to work with local students who want to become teachers, just like me.

A couple of months ago someone told me that she was really impressed that I was going on this trip while having Tourette. I thought about that for I while and then I figured: Why wouldn’t I do it? It’s something I really want and, yes, it might be a bit harder for me, but what in life isn’t?

It’s going to be exhausting for everyone, and it’s going to be maybe three times as exhausting for me (with all the new impressions and such), but I’ll just sleep three times as long afterward! I’ve told everyone in my group about TS and what it means to me and that I need rest and some alone time and what they can do for me, so there’s really no reason not to go! I’m going to Africa and I’m going to teach!

I wanted to share this with you, because I really think that you can do everything you want, while having Tourette, you just have to find your own way to do it. If I hadn’t had TS, maybe I would’ve gone longer, but the only thing that matters is that I’m going, and I’m going on my own terms and in my own way!

A look back at childhood sensory processing disorder

Another home video! This was the video of my kindergarten play! I think I was about 5 in the video. In the beginning of the video, you will notice that I have some strange arm hand posturing. I am holding my arms and hands curled up against my body in a stiff position. I am not sure exactly why I was doing this. Sensory processing disorder? Anxiety? Trying to hold back tics? Any ideas about that one?

Also throughout the video, I have my hands up at my mouth and am biting my hands and fingers. This is a complex motor tic.

At the end of the video, you also see my sensory processing disorder come into play. I did not like the clapping because of auditory processing sensitivity, which is a part of sensory processing disorder, so you can see that I put my hands up against my ears to cover them.

A look back at childhood echolalia

Hey everyone. So I just got some old home videos converted into DVDs so that I could watch them. Click here to view part of one of the home videos that my mom filmed when I was around 4 years old. The video starts at around 4 seconds.

This is a video of my echolalia as a kid. In this video, I started telling my mom to look at something in the book was looking at and then just kept repeating the word “look” over and over again, which is a kind of vocal tic called echolalia where you repeat a word or phrase that either you have said or that another person has said.

As I’ve said before, it always amazes me to see a little 3- or 4-year-old me ticcing! It also amazes me looking back on these videos that my parents really thought I just had bad habits that they needed to force me to break and never took me to a doctor or psychologist as a kid.

I kept ticcing throughout my childhood though and still of course tic today a lot, regardless of my parents telling me to stop ticcing. Telling a child to stop ticcing does not help! It only makes things worse for the child! Tourette Syndrome is a neurological disorder and cannot be stopped by pure will.

I know my mom recognized I was doing something out of the ordinary because once she realizes what I am doing she quickly turns off the camera and the video switches to a video of my brother as a baby.

I had echolalia throughout my childhood where I would repeat my own words and the words or phrases of others and still have it today, although it doesn’t happen as frequently now as it used to when I was younger.

A look back at childhood tics

Hey everyone. So I just got some old home videos converted into DVDs so that I could watch them. Click here to view part of one of the home videos that my mom filmed when I was around 4 years old.The video doesn’t actually start until around 13 seconds, so jump to that part!

I got frustrated with trying to open a birthday present and then pass the box onto my dad to get him to try to open it. After I pass the box to him, I do a motor tic which involves holding my eyes open wide, tilting my head and body to the side, and movement of my hands/arms.

It always amazes me to see a little 3- or 4-year-old me ticcing! I will be uploading more videos of my tics as a young child to this page so be on the lookout for them! Feel free to comment. 🙂

Very proud of our TS awareness efforts here in Europe!

It’s been awhile since I wrote something on this blog. I’ve been very busy with finals (my summer vacation started June 28), and of course June 7 ws European Tourette Syndrome Awareness Day. That was almost a month ago, but I really want to take you back and tell you what we did on that day, because I’m very proud of what we were able to accomplish in such a short amount of time.

We had a chat session on Twitter and Facebook, and the date and Tourette itself was mentioned on a lot of websites — both sites about health issues and other websites. Some, of course, on a very “cursing” kind of way, but at least they mentioned the right links with the right information, so I was very happy about that anyway.

But the thing I am the most proud of is that we were able to be on public (national) radio, both in Belgium and in the Netherlands at the same time! How it works here is that there are a couple of public radio stations — called Radio 1, Radio 2 and so on — with Radio 1 being the most important. And I was at Radio 1 in the Netherlands at the same time as Marie was on Radio 1 in Belgium! So that was very exciting and a lot of people ended up switching radio stations all the time, not to miss anything.

I really felt like we were taken seriously and we were important enough to be on the most important radio stations in both the Netherlands and Belgium. During the day I was constantly bouncing around because I was so happy with my radio interview (which was at 8:15 in the morning!) and I was playing “helpdesk” for the people who were on the chat (it was an 8-hour chat with 8 different people). Plus, if you combine me with a bit of enthusiasm you get a bouncing me!

At night, I ended up going to some friends to BBQ because my adrenaline was just way to high as I was very tired as well (had been ill and couldn’t sleep the night before) and others took over my “helpdesk” task. And I ended the day with, of course, looking back at it with the people who planned the whole thing with me.

I can go on and on about this (I was actually planning to write a blog about something else, so this is an extra bonus blog 😉 ), but you’ve probably seen a lot of it, as Teens4TS was kind enough to share a lot of our activities on Facebook and Twitter!

Did I say this already? I’m VERY proud of us, no really, VERY proud!

Oh, and the photo above is an awareness pic I made. I made a lot of them in Dutch (I translated a lot of great things I saw online), but this one I also made in English.

Teens4TS Showcase: Kids raise $3,500 for Tourette Syndrome

Last year, while in fifth grade, Terrill Middle School student Josh Klapper tabbed Tourette Syndrome as his service learning project – enlisting the services of the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) youth advocate in-service program to get it done.

This year, Klapper decided he wanted to give back to NJCTS by trying to get Terrill Middle School’s Builder’s Club to choose the Center for its annual fundraising walkathon. Klapper’s proposal was so good that it won by student vote in a landslide, and on June 4 more than 30 of teacher Ben Rogers’ students and Klapper’s sixth-grade classmates walked – and in many cases ran – around the grounds of Terrill Road School in Scotch Plains.

Their efforts that day, along with fastidious fundraising leading up to the event, helped raise $3,500 to benefit NJCTS’ statewide education outreach and peer advocacy programs. It’s the fifth such student-initiated fundraiser to take place on NJCTS’ behalf in 2013, joining Ramapo College, North Brunswick High School, South Plainfield High School and the Northern Burlington County Regional School District.

“I’m really proud that I did this and that everybody knows that Tourette Syndrome is and has awareness about it now,” said Klapper, who raised an impressive $480 of the $3,500 himself and also has Tourette Syndrome. “It’s really cool to be doing this during Tourette Syndrome Awareness Month, too.” Continue reading

A little understanding goes a long way

This weekend, one of my closest friends (who I will call Gally for this blog) had her roommate/close friend from college visit her. Our plan for Friday was to go see The Bling Ring together and our plan Saturday was to go to the City Museum.

I was nervous about meeting the roommate because I always tend to be a little nervous when meeting someone new. When meeting a friend of a friend there is always the issue of, “Did my friend give this person a heads up that I have Tourette’s?” and “How is this new person going to react to my noises and twitches?” So I tend to worry at least to some extent when meeting someone new who may or may not already know that I have Tourette’s.

I met Gally’s roommate (who I will call Bunny) for the first time in person Friday night. Before the movie, we met briefly and then walked in and sat down. My first impression of her was that she seemed really nice, and she didn’t seem like the kind of person who would give me any trouble about my tics.

Gally sat between me and Bunny during the movie, and of course Gally is very used to my tics, so during the movie my tics didn’t bother her. I did some vocal tics and a fair amount of motor tics during the movie, but Bunny didn’t react at all. I wondered if this was because Gally told her about my tics in advance or because maybe she couldn’t see/hear my tics from where she was sitting. Either way, the movie went smoothly.

After the movie, we talked a little bit in the lobby, and when I did my vocal tics it didn’t seem to phase Gally’s roommate at all. She didn’t give me any weird looks or react in the slightest to even my louder tics, which is pretty impressive because most people — even when given a heads up about my tics — will react to some extent even if its just a startle response.

I was doing more pretty decently loud vocal tics in the parking lot when Gally and her roommate walked me to my car, and still no reaction from Bunny! She just had a really comforting way of looking at you and making you feel like you don’t have to worry or be self-conscious.

So I didn’t feel worried about my tics at all around her, even though I had just met her and even though we had never personally had a conversation about my TS. Also part of it was that Gally was there making me feel conformable as well, which of course helped!

The next day, I hung out with Gally and her roommate again because we had plans to get a group of friends together and go to the City Museum. On the way to the City Museum, in the car I mentioned something about camp. Gally’s roommate asked me about camp and asked what camp I was going to be a counselor at.

I enthusiastically told her I am going to be a counselor at Camp Twitch and Shout, a camp for kids with Tourette’s. She then said, “Cool! I actually got these earrings from an old boyfriend who had Tourettte’s. He kind of grew out of his tics, though.”

Gally and I kind of started laughing a bit, and Gally responded with, “Cool story, hahaha.” Anyway, Its always nice to hear that someone has known someone with TS before knowing me! Makes me feel like I am not the only one who has to go though this and also makes the person more used to TS and gives them to background knowledge about it, which helps them better understand me when they meet me. 🙂