Making a New Tourette's Documentary with Logan Kurtz!

Logan Kurtz and I are making a documentary about TS in the classrooms. We want perspectives from all ages, you can participate anywhere you live by filming yourself and sending in your video. If you want to film yourself we will happily provide questions to answer in the video and crieria for filming. Let us know if you are interested by commenting on this post or messaging me through my facebook page: http://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080?fref=ts

Implementing my Winter Strategies

So, I was hoping to put off having to implement my usual winter strategies for a little bit longer, but it's really getting cold outside where I live and my usual compulsion/ tic combo that gets bad in the winter is on a rampage. Every year in the winter since I was 4 or 5 years old, I've have a lot of issues with my lips and with picking.

Every winter is when my tics with my lips get really bad. Some of the things I do with my lips edge more towards the compulsion side of the spectrum and some edge more towards the tic side of the spectrum. In the winter time I bite skin off my lips, I lick my lips, I rub my hands against my lips, I rub my shirt sleeve against my lips, and I pick skin off my lips. I also pick on my skin on my ears more in the winter as well.

I'm not exactly sure why this particular combo of tics and compulsions gets so bad in the winter time, but its probably a combination of the fact that it's cold outside and I'm more stressed in the winter time because I have more homework and tests. So in the winter, I usually have to implement two important strategies to try keep my lips from constantly chapping and bleeding and to try keep the skin on my ears healthy.

The first strategy is that I try to keep the Bert's Bees chap-stick with peppermint on my lips almost 24/7. Bert's Bees chap-stick with peppermint is actually the only chap-stick that I am able to use, because all other chap-sticks really bother my Sensory Processing Disorder and are just intolerable. The Bert's Bees helps keep my lips moist, helps me keep my hands off my lips, and helps me keep from biting and licking my lips.

Sometimes though the tic/compulsion is too strong for the Bert's Bees to keep me from doing my lip tics/compulsions so that's where strategy number two comes in. Strategy number two is to keep at least two rubber bands on my wrist at all times. When the urge to pick, bite, lick, or rub my lips is too strong, and I notice myself starting to do these things, I pull the rubber band on my wrist back and snap it against my skin. It doesn't hurt too much, but over time it helps me associate the tic/compulsion with negative pain. Also the rubber bands on my wrist can help keep my hands busy if I fidget with the rubber bands. While this doesn't completely stop the tics/compulsions associated with my lips and with picking my skin, it does help reduce them. In the past though these strategies haven't been completely effective and many times during the winter i've given up with them and just stopped using them because of frustration that they don't help as much as I'd hoped.

So today is the first day this year that I've started to implement these strategies. Hopefully they will be more effective this year than they have been in the past. Wish me luck! And maybe if you have similar tics/compulsions to these that I just mentioned, you can try out these strategies and see if they help for you.

My Personal Essay: "Not in Spite of My Challenges"

Hey everyone! So as promised I am posting my personal essay that I turned in today for my writing one class. It's about my experiences in the classroom with Tourette's. Some parts are not 100% the way it actually happened and there are some facts that are a little altered for the purpose the the essay. Most of it though is very true and it took a lot to actually put it all down on paper. Of course all of the details about my life in the classroom with TS couln't fit into this 4 page paper (because the limit was 4 pages) but I think it's a pretty decent summery. Let me know what you guys think and what your thoughts are about the essay!

Not In Spite of my Challenges

Second grade was the year that was rainforest themed. A good portion of the first week of school was spent making chains out of strips of dark green construction paper that we taped together in rings to put up around the classroom like vines hanging from a canopy of trees. I was pretty good at taping rings of construction paper together and I remember my teacher, her short curly hair and long fingernails painted a sudden red, smiling down at me as I sat cross legged on the carpeted floor. I felt like this year could be different. The classroom was so alive with the vines swinging above our heads as the air conditioning fluctuated and there were stuffed rainforest animals scattered about the room on bookshelves and on beanbags. At any moment I felt as if cool thick rain drops could drip down from the vines and like my favorite song they would turn into sweet gumdrops. I would even imagine myself swinging from the vines with the stuffed animals that would come to life and become my friends so easily. This fantasy world however, soon became an escape from the classroom, just as other fantasy worlds had in years before. Every year, my real friends were animals in my head and there was a much kinder and more exciting world waiting for me when I needed to get away from the disapproving stares and comments that I didn’t quite understand. Second grade was the year I figured out that I really was different than the other kids.

                In second grade, I didn’t understand much about myself or the other people around me. I didn’t understand why things changed so much after that first week. I had had so much fun helping to create our classroom rainforest and my teacher even seemed to like me at first. Had everyone suddenly decided they no longer liked me or had it taken me a week to figure out that everyone seemed to disapprove of me for some unknown reason? I wasn’t quite sure. All I knew was that after the first week of school, the kids started giving me these looks. I had seen these looks before, but this year the kids seemed to be more articulate, more willing to say what was on their mind. They told me I was annoying and when I asked why, this time they weren’t afraid to tell me exactly what was on their minds. They told me that I sniffled too much, moved my face too much, and made weird slurping sounds too much. I hadn’t even noticed that I was doing these things or that they were anything different than what regular kids do, but one thing I had noticed was that year upon year I seemed to hear one particular word from so many of my classmates: annoying.

                From that point on, I used our rainforest classroom as an escape more and more. In my mind, I would curl up in the immense canopy of the rain forest to take a nap or to read with my two best friends, Duke and Duchess, the giant black Great Danes who could roam from tree to tree like the spider monkeys I had learned about in class. When the other kids told me to stop sniffling so much or told me time and time again that I was annoying, I would pretend to pet Duke and Duchess, whose fur felt as soft as powdered sugar.  I told myself that Duke and Duchess would never say such things to me. Duke and Duchess were always my friends, and even if I couldn’t stop myself from doing things that seemed annoyed the other kids so much, Duke and Duchess didn’t mind one bit.

                Each year of elementary school I told myself things would be different, Duke and Duchess wouldn’t be my only friends, and class would be easier for me. Each year however, I seemed to be wrong.  I had a few friends each year, but it was difficult for them to understand why I couldn’t stay still in class or why I couldn’t stop myself from making annoying noises.  I didn’t blame them though, because I didn’t really understand it myself either. As I got older, the classroom was no longer decorated with colored construction paper, and it was no longer a mysterious rainforest or a magical dessert.  There were now overhead projectors, desks lined up in straight rows, and a layer of pressure and silence that seemed to hang over the classroom. The kids weren’t the only ones who seemed to disapprove of me anymore, the teachers did too. My teachers were convinced that I wasn’t paying attention in class because I was moving around too much or using my fingers to write out “fake words” on my desk during class. To them I was a disruption for the other students in the classroom and a hassle for them to deal with. I was always moving and making noises, my handwriting was impossible to read, I didn’t understand math, I started having severe anxiety and panic attacks, and I was obsessive. For me, the classroom became a narrow vacuum of space in which the air was often sucked out pocket by pocket.

 Neither my teachers nor I knew it at the time but I had something called Tourette’s Syndrome, a lifelong neurological disorder that causes involuntary movements and sounds called tics, learning disorders, and anxiety disorders. At the time however, Tourette’s wasn’t understood by most people and certainly wasn’t understood by my peers or teachers. At the time, everyone perceived Tourette’s to be a disorder that just caused people to swear uncontrollably. Only highly trained neurologists knew that only 10% of people with Tourette’s actually have swearing tics and that more times than not the physical tics could be less severe than the other conditions it came along with like learning disorders, obsessive compulsive disorder, anxiety disorders, and sensory processing disorder. It wasn’t until high school that I would actually have a certain diagnosis, and that people would begin to have a more accurate understanding of Tourette’s, but it was a long time before high school when realized I needed to stop waiting for someone to give me an answer. I was convinced that I was the only one with these problems and sometimes this was a rather lonely and hopeless kind of thought. Most of the time I tried not to think about the fact I was different than the other kids, but sometimes I would slip into a stream of consciousness in which I considered myself to be just a weird, nervous, annoying kid who no one understood.

I can pinpoint the point in time in which I promised myself that I would no longer slip into the mindset of feeling hopeless and sorry for myself. I only allowed myself to cry in the shower, when I was surrounded by stark white walls and the heavy falling water coming from the shower head. I could cry as much as I wanted to, because no one would hear me over the sound of the gushing water. It was in 7^th grade however, that I let myself do this for pretty much the last time. I remember crying in the shower and thinking to myself how much I wanted to be a person who was smart, confident, and just someone that other people liked. I knew at this point that I couldn’t control what my body did at times, I couldn’t control what my mind worried about at times, and school was just a lot harder for me than it seemed to be for other people. Crying and feeling sorry for myself in the shower this time was not so different than the many times before it, but this time something in my mind just clicked. I made a decision that night. I made a decision that I would no longer feel sorry for myself because I was going to be the one in control from now on. I couldn’t change the fact that my body seemed to have a mind of its own, but I could change how I dealt with it.

From that point on I promised myself that I was going to succeed in whatever I set out to do, not because of luck or because I was just that kid who didn’t have to try to get an A on a test, I was going to succeed because I would push myself to succeed no matter what it took. I wasn’t going to be that twitchy kid who sits in the back of the classroom and has trouble in school anymore. One day, I was going to be a smart successful woman who people admired and liked even if I had tics and twitches and an obsessive nature that I couldn’t really control. I knew this change wasn’t going to happen overnight, and it didn’t, but I didn’t mind or even notice the wait that much because I was too busy pushing myself forward in every way I knew. I wish I could put into words how I was able to force this change upon my life and upon myself, how I was able to change my grades from C’s to all A’s, gain the respect of my peers and teachers, and begin to exude confidence in a way that I never had before. All I really know is how much I desperately wanted and needed this change in my life. The classroom became a place in which I excelled and was no longer afraid of and most importantly my view of myself changed. I no longer saw myself as a weird, annoying, twitchy kid who no one understood. Instead, I saw myself as a determined and resilient person, not in spite of my challenges, but because of them.

A Post about My Personal Essay

I just turned in a personal essay for my writing one class about growing up in school and in the classroom with Tourette's and its associated conditions. I was a bit nervous actually turning it in to the teacher, but my teacher sees my tics frequently in class (especially since there are only about 15 people in the class and I sit in front with my friend from my floor) and is a really cool person in general so I felt less nervous about it than I think I usually would under other circumstances. Anyway, I think I will post the essay on my blog soon (maybe sometime today) so you guys can read the full personal essay! Now the part i'm really nervous about it having it graded by the teacher...yikes! I hope she likes the essay. When we were turning them in this morning she told us she was truly excited about reading them!

Going to make a Questions/Answers video!!!

So I decided that I'm going to make a questions and answer video on youtube about TS/OCD/any of my other neurological conditions and about my life in general. You can ask me anything! It can be about TS, OCD, SPD, GAD, Panic attack disorder, Dysgraphia, Discalculia, Dermatillamania, college, my childhood with these conditions, or you could even ask me what my favorite color is! Comment here or on my facebook wall with your question and if I get enough questions I'll make the video! :)

An Action Packed Weekend of Fun at College!

This past weekend I has a blast! On Friday I went to the balloon glow event in the park next to campus with a group of people from my floor. That evening required a lot of walking and walking long distances or even moderate distances seem to set off my vocal tics especially. I met another person who I think might end up being one of my good friends. I'm going to call her April. April is very nice and doesn't seem to be uncomfortable with my tics at all since i've explained them to her. I explained to her that I have Tourette's and what it is when I was walking with her at the balloon glow and she seemed pretty chill about it. She and another girl I was walking with didn't shy away from asking questions! I always appreciate when people ask questions rather than just saying "oh" and being awkwardly silent. They asked me if I can feel a tic coming, if it gets annoying sometimes, and generally seemed to be accepting and positive about it.

Since then i've been hanging out with April and the other girl who I explained my tics to on the night of the balloon glow (who I will call Gretchen) quite a bit. They're both very nice people who I can see myself being even closer friends with in the future. April also told me that her younger brother has a form of Aspergers and at one point he had some tics with his neck and pulling at his collar so this is not her first exposure to tics and neurological differences which always helps!

On Saturday a group from my floor took the metro to target which was fun but took a long time and was once again a lot of walking! Luckily both April and Gretchen were there and I got to spend more time getting to know them and they got to spend more time getting used to my tics. Then Saturday night I went out to dinner with a friend of mine from the Nemrov group (Laura) for her birthday dinner! That was really fun and it was nice to get off campus and hang out with Laura who I don't get to see as often as the people who I live with on my floor.

Tonight we had a floor event called community night with our floor as well. Goldie (my awesome RA) and Viv (my other awesome RA) did a great job planning the night. We played games to help us get to know the other people on our floor better and guess what???? Our group won!!!! I even got to be in a group with April which I really appreciated. I felt way more comfortable about my tics with April around and even though I was doing a lot of vocal tics throughout the night it didn't really bother me all that much because April's nonchalant attitude about it made me feel way more relaxed. During a section where we had to do some writing though I kept throwing my pen. Then later in the night I ended up throwing my room key on the ground as well. Well that's a new tic....gotta love new tics.

Then we had to go outside on a scavenger hunt, we were running all over the place, it was dark, and then it started raining really really hard and there was lightning too. I got soooo soaked and just my luck I was wearing a white shirt which got completely soaked all the way though and I was wearing shoes made out of recycled paper! The rain and the fact that we were running all over the place made me tic a lot more, but April was really helpful because she stopped with me when my leg started cramping up and when my tics started getting bad. Even though it was crazy and even though I was ticcing a bunch it was still really fun. I sure won't forget my first freshaman community floor night!

April and I bailed out early because we were so soaked and when I got back to the dorm, my RA Goldie was there. She saw how wet we both were and hugged us even though we were soaking wet! Then Goldie went outside to stand in the rain so she would be wet too, lol. She really is a great RA!

It all payed off in the end when we won the activity though! We won a trip to get frozen yogurt with our RA's  which I'm really looking forward to :)

Opening Up About Tourette's In College

So over the past few days I've really been opening up more with my new friends about my Tourette's. I figured that pretty much all my friends i've made so far have noticed my tics and it's always easier to explain it sooner than later. Basically, i've been taking opportunities in casual conversations to just mention it briefly and for the most part I try to mention it is a nonchalant way so it's not a huge deal.

Lucky for me, talking about the lab I'm working at in the med school is an easy way to bring TS up. I mention that i'm excited to start working in the lab again next Thursday and then whoever I am talking to is always curious about the lab. I then mention that it's a neuroimaging lab that focuses on movement disorders like Tourette's Syndrome and explain I got involved with it through my neurologist and that I see a neurologist because I have Tourette's too. Pretty easy way to bring it up.

Another way i've been bringing it up is by talking about my documentary that I made about Tourette's. This is a good way to bring it up too because I can explain how I wanted to make the documentary to educate people about Tourette's because it's really amazing how few people know what it really is and that it's not just all about swearing.

So far when I mention it, it seems like my friends aren't too surprised for the most part. They've seen my tics and are happy to get an explanation. They sometimes ask a few questions too. So far the questions i've gotten from my friends are:

"Is there a cure?"
"Do they know what causes it?"
"Do you have vocal Tourette's?"
"Do you know when you're doing it?"
and some other ones.

I've been trying to answer the questions the best I can, but every time after I answer them I always feel like I didn't answer them in the best way and that I could have explained it better! This really bugs me! Maybe it's my OCD, but I always have to go over what I said in my head and then I always get kind of mad at myself because I think I could have answered the question better than I did. Anyone feel like this sometimes when you explain TS to other people or try to answer their questions?