Wednesday, February 29, 2012

Answering Kristin's Question: IEP's, TS in school for younger children, Accommodations?

Kristin's Question:  Did you have to have an IEP in school? Were any special concessions made for you? I have a son in the 3rd grade, newly diagnosed. He's having difficulty with comprehension and I'm not sure how much is the TS. I think his teacher believes it's not so much the TS as I believe it is. His tics are fairly mild and he does seem to be suppressing them while in school. Maybe that's why they think it's not so much the TS - they don't 
realize TS is more than the tics? Any advice you could give me would be appreciated.

So glad you found my facebook page and that you asked me a question about Tourette from there! I am more than happy to answer your question in this blog post! Hope my answers and advice help! In response to your first question, No, when I was younger and was in grade school I did not have an IEP. But as I got older I was given the much needed accommodations in school starting in 9th grade. I am currently a senior in high school. I came across a quote the other day that I think is so true for many of us with Tourette's Syndrome. 

"Intelligence can disguise disabilities and disabilities can disguise intelligence" - Kathy Giordano 

This was so true for me when I was in grade school. My mom tried and tried and tried again to get me an IEP, but the school just wouldn't give me one. She later told me that the school wouldn't give me an IEP because even if I had reasons to need an IEP, they weren't going to give me one because I tested too well and because I was too smart. 

I think this was a real mistake. Just because I was intelligent, doesn't mean that I wouldn't have really benefited from accommodations in school. I have Tourette's Syndrome,  and many associated conditions that come with Tourette which include OCD, Anxiety Disorder, Panic attack disorder, Dygraphia, Sensory Integration Disorder, and difficulties with processing speed as well as what is being called a math calculation disability (in other words I can't do math in my head, but give me a calculator and watch me excel in calculus). 

These disorders didn't just pop up in 9th grade (which was the first time I was actually given accommodations in school). I lived with these disorders even more so in grade school. Even though my intelligence disguised my disorders, without proper accommodations in grade school, I failed to learn my multiplication tables, long division, proper cursive, how to use and read a ruler properly, roman numerals, and much much more. With accommodations later, I was able to catch up with my peers, but it was not until I was given the extra time and attention I needed that I was able to learn what I was unable to in the past.

In 9th grade when I received a lot more of a proper diagnosis for some of these disorders, I was given an action plan (very similar to an IEP of a 504 plan but for independent schools).  My action plan tells my teachers about my various diagnoses. It allows me to have extra time on every in class assignment, essay, or test and on out of class assignments if I need it. I have permission to leave the room when I need to due to tics or anxiety, and if I need to, I can take my tests in a separate room. I usually don't need my own room for just regular tests, but for larger exams I have chosen to take them in a separate room in the past so that I won't be so focused on how my tics may be affecting the other students. 

For the ACT, I got awesome accommodations thanks to the letter my neurologist wrote and thanks to the wonderful  school learning specialist who advocated for me. I was allowed to take my ACT with double time, in a separate room, over multiple testing days, with a laptop to write my essay, and I could just circle the answers on the sheet and didn't have to bubble on a scan tron. I truly believe that I would have done so much better in grade school if I was given these kinds of accommodations back then. Without them, no one could see my true potential. 

I had so much trouble with comprehension in grade school, and it certainly was not because I wasn't smart enough to learn the material. No one really knew just how much my associated conditions affected me. In grade school my ADD made it hard for me to concentrate, my OCD made me repeat the teachers words over and over in my head and write out her words with my fingers over and over again (which meant no way was I paying attention), my anxiety made me feel rushed and anxious on tests, and my tics made me distracted and made me run out of time to pay attention or to take my time on tests. No one really knew that all of this was going on for me in my head. 

There is probably a good chance that you may not know everything that is going on in your son's head. He could have OCD, ADD, ADHD or many other things that make it hard for him to pay attention in class and really have the time to process what the teacher is saying. Another thing that really could be effecting his ability to comprehend the material is suppressing tics as you said. When someone suppresses tics they can't think about anything else pretty much besides suppressing the tics. My suggestion would to be to really educate his teachers about TS. Let them know that TS is so much more than tics by calling them up on the phone to have a conversation or to arrange a in person meeting. Tell them your concerns about the suppression of the tics and how his associated conditions may be effecting him. Find out if there is any way to make your son feel more conferrable with letting out his tics so he doesn't have to focus on them so much. 

Some kids and parents find it really helpful to educate the class about what TS is and what tics are. Sometimes this makes it much easier for a child to not focus so much of holding their tics back, so they can focus on what is being taught.  I cannot stress how important direct communication with the teacher is for young kids with TS! In my opinion one of  the most important things for a child with TS to know is that everything will be okay and they will still be accepted if they can't suppress their tics or if they decide to let 
their tics out so they can finally focus in class! 

Also my last piece of advice for you is to really sit down when you have time and watch the new TSA web series "Tourette Syndrome in the Classroom, School and Community". I think every parent with a child with TS should really watch this. It has fantastic advice for how to really help a child who has TS in the classroom, school, and community succeed. Talks about IEP's, accommodations, 504 Plans, testing, school, educating the class about TS, and just about anything else Tourette. Here is the link for that! You can also order it as a 2 part DVD set from the national TSA.

Just made a facebook page for Tourette's! Like it!

Well the title kind of says it all but I will say it again! Just made a facebook page for Tourette's! Like it! That's all! It will be an extension of my blog and a place for those of us with TS to talk about it and support eachother. I will ask you all questions there and you can answer and see other answers. Also you can ask me questions any time you want! So yes like it! Here is the link:

Have Questions about Tourette's? Just Ask!

I want to answer your questions about Tourette's Syndrome! Are you a parent with a child who has recently been diagnosed with Tourette's Syndrome? Are you a long time member of the Tourette's Syndrome community? Do you have Tourette's? Are you a medical student studying Tourette? If you are any of these, I know you have questions and want answered in a more personalized way than you can get on the internet. I promise you that wikipedia does not have your answers. I will try my best to answer any question you have to the best of my ability. I live with Tourette's every day and know more about it than I thought I would ever know! I really do want to answer any questions you may have. It will give me something else to write about on my blog and on twitter. You can comment on this post or on any other post on my blog to ask you question. You can also tweet your question to me on twitter @jspershing93 to reach me there. I promise I will get back to you and answer your questions. Also I am planning on making a facebook page for my blog and for Tourette's support purposes. I will be sure to update you all on that when I am finished making the page! :)

Tuesday, February 28, 2012

Talking to The Class of Grad Students at the Med School about Tourette and my Experiences!

I just got back from talking to a class of medical students and it could not have gone better! I want to blog all about it here before I forget! I found the building alright and as soon as I walked in I saw the teachers assistant who was going to meet me at the main entrance and direct me to the classroom. I was there a little early so I sat in a seat and listened to the rest of the Dr.S's lecture. Boy was this lecture way over my head! He was talking about things like the basal ganglia, and statistics, and complex chromosomal research findings. I tried to follow it the best I could and look attentive. I couln't help focusing on my tics more than usual though, because I was in a room with 35 graduate students who had just learned all about Tourette's Syndrome and in a few minutes would be meeting me and asking me questions about Tourette's. Thank god I didn't go in yelping or squeaking though. I was just doing motor tics. Pretty soon the lecture was over and the Dr. S called me up to the front of the room. When I walked up, mostly all the grad students seemed to perk up. They went from looking very bored and dull, to smiling at me and looking excited. I'd have to say if I was one of those grad students I sure would appreciate a break from all that intense medical jargon to see an actual patient dealing with these symptoms. They all looked very friendly and excited! Dr. S then clicked on my documentary link to the trailer but there were no sound capabilities so he just played the image in the background as he did a mini interview with me for the class.
Here is a summery of my interview with Dr. S for the students: 

Dr. S: Asked me when I had my first tic 

Me: I answered that that depends on what you classify a tic as then went on to explain that when I was five years old I started picking and biting at my lips and I have heard some people classify this as a sensory tic but also have had it classified as a compulsion. After that I had my first "classic" tic in 2nd or 3rd grade when I started sniffling, raising my eyebrows, and tightening my muscles. 

Dr. S: Explained further to the students that it's very hard to distinguish between a tic and a compulsion and the medical world is sometimes still unsure of which is which in certain situations. He then asked me if it feels like a tic. 

Me: I told him that yes it feels very much like any other tic to me 

Dr. S: Asked me when I first knew I had tics 

Me: I answered that I knew I had these "habits" as my mom called them for a long time. I didn't actually know they were called tics until I was 16 years old. My mom always used to tell me to stop doing my tics and told me to use more self control because she didn't know what they were either and just thought I could stop. This obviously didn't work and I didn't stop because I couldn't.  

Dr. S: Explained that this happens to many children with TS. Their parents don't know the kid has TS and thinks the kid can control it so they tell the kid to stop. He then asked me if this made them worse. 

Me: I explained that yes when my parents told me to stop or when anyone told me to stop it just made the tics worse. 

Dr. S: Explained that this happens to a lot of children with TS. When they tic and are told to stop it just makes the tics worse. Then he asked me if I knew anyone with tics when I was a kid. 

Me: I told him that no I didn't know anyone with tics when I was a kid. My first cousin has Tourette's and I knew her as a kid obviously but I did not know she had tics or Tourette's when we were younger. I didn't know anyone personally with Tourette's until after I was diagnosed. 

Dr.S: Asked me how I made your documentary and how I got the people to participate. 

Me: I explained that I made an informational video, contacted some friends with TS who I had met through the Tourette's Syndrome Association, and pretty much spread it around through social networking. 

Dr. S: Asked me if I had ever talked about my tics in front of a group like this. 

Me: I told him, Nope! This was my first time! 

When we were done with our interview, Dr. S asked if anyone had questions for me. Only three people asked questions though! Probably because they were too exhausted after that intensive lecture to think of anything intelligent to ask. I was asked if I had ever tried CBIT therapy for my tics. I answered that no I have never tried CBIT for tics but I have OCD and I am doing exposure and response prevention therapy for OCD. I sadly don't remember the second question for some reason, maybe it will come back to me. And the third person asked that if my tics went away when I was really focused on something like Dr. S had mentioned earlier about an athlete whose tics went away when he was playing a sport. I immediately thought of coxing and said that I am a coxswain (or was) for the rowing club here and that when I coxed and steered the boat and shouted out commands that yes I didn't tic and my tics went away for a little bit. Dr. S said that he remembered this from when we first met and that he remembers why I was made for coxing. Because I am small and because I have OCD. The class laughed at his joke and Dr. S talked about how OCD has benefited many people and doctors in helping them in their work. Then Dr. S told everyone that he would send them the link to my documentary and they could watch it from their own computers. The whole thing went by pretty fast! After it was over a bunch of people shook my hand. Dr.S, some doctoral fellows, and some other people, and they all thanked me for coming. They all seemed truly appreciative and only woman said that she was so glad that I could come and that she thinks the students really benefited from seeing a patient and someone who actually has the condition because it brings the subject matter to a more real life perspective! Very glad I did this and helped the students learn more about TS! I am even kind of disappointed that it's over! On to the next thing in life then! What a great experience! 

My Experience with Dysgraphia (Another Co-Morbid Condition Associated with Tourette)

So today I figured I would write about my experience with dysgraphia, another co-morbid condition associated with Tourette. I recently watched the new Tourette Syndrome Association program Tourette Syndrome in the school, classroom and community,  which you can watch online for free.
This is a great resource for parents with children with TS, teachers with students with TS and for students with TS. Although a lot of it focused on the actual tics themselves, there was a lot of focus on co-morbid conditions associated with Tourette.
I have a fair amount of co-morbid conditions that have effected me a lot over the years, so I could really relate. I have OCD and anxiety, which affect me every day and which are two very common co-morbid conditions associated with Tourette’s. But I also have another co-morbid condition associated with Tourette’s that is not as well known even though it is a very common co-morbid condition with Tourette’s.
I have been dealing with dysgraphia since I was first able to write. Dysgraphia is the deficiency and extreme difficulty associated with the ability to write, primarily in terms of handwriting. It is technically classified as a learning disability referring to extremely poor handwriting.
Some of the characteristics of dysgraphia (all of which I have) include:
  • Slow and laborious handwriting
  • Hand and finger cramping
  • Sloppy handwriting
  • Uneven spacing
  • Irregular margins
  • Inconsistent lettering
  • Inability to copy correctly from board to paper.
As many of you know, I am a very good writer in terms of content. I can express myself clearly, get across what I want to say and do so in a very advanced way. I am a published poet, have been published many times and I have won many awards for my poetry and short stories.
But dysgraphia isn’t about that. Regardless of how good or clear my ideas are, my handwriting remains a complete mess.
When I was in second or third grade, my handwriting was so illegible that my teachers suggested that my parents take me to an occupational therapist (OT) to be evaluated for dysgraphia and receive therapy for it. I worked with an OT for a long time in hope of improving my handwriting skills to a point where my handwriting might actually be legible.
My handwriting improved to a certain extent, but when my parents realized that we had gotten to a point where progress was at a stand still, my parents decided to stop the therapy and just accept the dysgraphia.
My parents enrolled me in intensive keyboarding and computer classes in hopes that when I was older I would have the skills to never have to hand-write anything important. As my mom says, if I ever need to write something important “never hand-write it, because it doesn’t show your intelligence, and it doesn’t match up with the sophistication of the content of what you have to say.”
I learned so much from my keyboarding classes that my mom enrolled me in during elementary school, and since I have had my laptop since seventh grade, I am an expert keyboarder. I can type much faster than I can write at this point, and on top of being more efficient, typing is a way for me to get around the dysgraphia.
So yes, today my handwriting is just about as bad as it was in third or fourth grade because well … I have dysgraphia. But I am lucky because my entire school functions on a laptop system, and I have the skills and means to type everything that I would need to write. Today, I hardly ever hand-write anything. All my assignments, essays and papers are typed up.
A lot of students with Tourette have dysgraphia, so my suggestion is that if you are a kid with Tourette who has dysgraphia (or are the parent of a kid with dysgraphia), you should really look into what can be done to help the condition. Get evaluated by an OT first and see if occupational therapy or other therapies may be beneficial.
If these therapies don’t help, FOCUS on what you CAN DO rather than what you can’t. Don’t keep harping on handwriting improvement if you have gotten to a point where progress is limited. Instead, focus on improving typing skills and computer skills.
Think about what accommodations in school might help. Will having a scribe help for handwritten tests or assessments? If notes are provided ahead of time, will this help? Will a laptop help?
If a laptop is out of your price range, a great tool is an Alpha Smart. Alpha Smarts are very inexpensive and can be used in class or outside of the home for typing up work, and then later can be hooked up to a desktop computer at home and the word document will transfer right to the computer and can be printed. The key is to teach keyboarding early on! That is what made all the difference for me!

Saturday, February 25, 2012

Documentary Malfunctioned when I tried to show it to the middle school aspergers group :(

Friday I went to the aspergers group at the special ed school I am working with to show them my documentary. I gave them the whole spheal on what Tourette's Syndrome is, asking for their participation and such first. They were all very surprisingly knowledgeable  about Tourette's and knew about both mother tics (which they described as twitches) and vocal tics (which they described as sounds. I was expecting the "oh that's when you swear a lot" response, but did not get that at all which made me super happy. I then asked if they had seen Tourette's on TV. I was expecting south park, duce bigalo, or tourettes guy since they were all middle school students but to my surprise they only mentioned James Durbin from American Idol and Front of the Class. Wow! I think there is hope for our youth! They were all very interested and great kids! One of the boys, Johnny, has eye tics, mouth tics, and neck tics. He does not have a diagnosis of Tourette's but my best guess is that it is a side effect from meds or a transient tic disorder or chronic motor tic disorder. He does have an aspergers and ADHD diagnosis though. He's one cute kid but sure can be a handful! I am looking forward to working with Johnny and his classmates this spring for my senior project. The sad thing though is that I wasn't able to get the documentary to work. The school blocks youtube and the files I had on a usb drive were not compatible with the teachers mac. She told me not to worry about it and that we would reschedule. I am going to upload the documentary to something called teacher tube which the school does not block and then show it to them at another one of their after school club meetings. It was disappointing that the documentary didn't work, and I was kind of frustrated about it, but we'll work something out with this teacher tube thing.

Speed Racer and I went out again today. I drove this time because his dad had to use the car that he uses to pick me up in. We went to a diner and then to get ice cream. I gave him his very late valentines day present. I was just glad to get it out of the house because those chocolates have been so tempting to eat! But I didn't eat them! Tuesday I will be talking to a class of grad students about Tourette's per the request of my neurologist who teaches the class and is giving a big lecture that day on Tourette's Syndrome. Wish me luck!

Thursday, February 23, 2012

What's been going on in the Tourette's/OCD Community this week? (Week of Febuary 23rd)

(Feb 17) No funds for Tourette syndrome group in proposed Pennsylvania budget: 

(Feb 17) James E. Marshall OCD Foundation Presents $225k to Johns Hopkins at 8th Annual Beyond Beauty Gala to support genetic research relating OCD: 

(Feb 16th)PANDAS Video: 19 year old girl has had PANDAS for 3 years. Her symptoms diminished successfully after treatment when tics came on after walking pneumonia, but it's back again after a bout of Mono (part one and two):

(Feb 19th) Tristan Perez, 11, runs to make people more aware of Tourette's: 

(Feb 20) Blog Teens Have Mixed Feelings About New York Students with Tourette Syndrome-Like Symptoms:

(Feb 21) New Informational Tourette's and OCD book: The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers: 

(Feb 21)  Obsessive Compulsive Detective Show 'Monk' to return for TV movie?:

(Feb 22) UVA Freshman Track Star, Ryan talking about Tourette's Syndrome and Track Video: 

Wednesday, February 22, 2012

Accepted into another college! And trying to be more comfortable ticcing in my new classes!

So last night was a very exciting night for me! I got my acceptance letter from my first college! I had applied for a writing scholarship there but didn't think I would be hearing from them for at least another month or so. So when I got a letter in the mail yesterday that said I had been nominated as a finalist for the writing scholarship I was very happy but did not want to get my hopes up too much so I put down the letter before I had read the whole thing. I thought I got the point. I was soooo wrong!!! About an hour later, my mom came over to me with my grandpa on the phone and told me that he wanted to talk to me. She handed me the phone and he said "You better read your full letter from the college right now!". I was a bit confused but read it all the way through and to my enormous surprise at the end of the letter it said "Congratulations on your acceptance!". Oh my gosh was I in disbelief! In fact for a solid couple of minutes I thought it was a typo because I thought it was way to soon! Then I read over the letter a few more times and was eventually convinced that yes they did accept me into the University!  I immediately called my relatives, texted my friends, and posted a facebook status about my accepted. Within minutes people were liking the status like crazzzyyy! I felt like a mini celebrity! It is really a huge deal to get in  I could not be more honored and overjoyed!

All this excitement has a flip side for those of us with Tourette's though. I have been ticcing like crazy since last night. Tics increase with any intense emotion, good or bad. If I am excited I tic more, if I am stressed I tic more, if I am angry I tic more, etc.....You get the point! So today my tics were crazy. But I so didn't care because I was so excited about getting in. It was one of my very top choices, and getting an acceptance from like you #1 top choice pretty much is more than exciting! I worked so hard for this; you have no idea! Plus today was the first real day of my trimester since yesterday was senior skip day and pretty much only 3 or 4 people from each of my classes showed up. So the stress of my two new classes, plus the excitement of my college acceptance made for one ticcy day! So as a very ticcy fist day of my new trimester I decided to make a goal to try to begin to become comfortable with doing vocal tics in my new classes. I only have one class that I feel totally comfortable ticcing in, French. The reason for this is that I have been in the same French class with the same people pretty much since 9th grade. The people in that class know me and I have ticced so much around them and answered so many questions about my tics and Tourette's during the classes over the years that there is really no reason for me to feel self-consious. They all know about my Tourette's and they have never seemed to be bothered by it. I feel kind of close to the people in my french class in a way. They seem to care about me too. They ask me questions about collage and are very nice to me. They seem to know my situation more than anyone else in any other classes. So in French class I can do my vocal tics without feeling self-conscious. In other classes I tend to hold back, hold back, hold back, then do my vocal tics anyway just in a more suppressed way or try to hide them by couching around them or leave the class a lot. If French can be okay for me, then why can't it be that way in my other classes too?

So today I made a goal to start out with my history class. It's a pretty relaxed environment so that always helps, and my friend Cheetah from French class who sits right near me every day in French was sitting next to me in the history class so that helped too. Cheetah and I aren't really close friends since Cheetah doesn't really hang out with my group of friends and is more of the athletic cheerleader type, but she is always really nice to me. She jokes with me a lot about how bad my handwriting is,  and we have known each other since 7th grade. She knows me situation really well and is very used to Tourette's. I knew that no sound I made would get a reaction out of her. So I started off my trying to not hold back so much. I ticced kind of quietly a few times, but when I let little vocal tics out, the louder ones are not far behind. So I then just had to let go, and my "eee" vocal/ pokemon sounding vocal was the one that decided to pop up, and yes I did get a reaction. One guy turned strait around to stare at me, and I heard another guy quietly say to his friend "did you hear that?". Cheetah and another girl from my French class gave absolutely no reaction, my teacher gave no reaction, and other kids in the class who have been in other classes with me gave no reaction either so the kids who hadn't had classes with me and who stared settled down and didn't make any comment. This is much of an improvement from the "What was that?!" reaction that I will get a lot. If I was in a class, I didn't know about Tourette's, and I suddenly heard a loud noise coming from behind me, I would probably turn around and stare too. So I mean I get it, and I don't take it personally. I could tell Cheetah was trying to reassure me that everything was alright. She asked to be my partner when it came to choosing partners for an in class assignment, and did most of the work and typing in case I wasn't really feeling up to it at the moment. I chimed in and helped though as much as I could to let her know I was okay. Then when we were done with the assignment she talked a lot with me and walked back from class with me. All the way back she chatted with me about French class and how our new History class was going to be. This made me feel a lot better. Hopefully, I will get to a point in my History class where I can tic without having to hold back so much and without provoking a reaction. The fact that Cheetah and another girl from my French class was there helped a lot.

Tuesday, February 21, 2012

Coming up in March: Talking to my Senior Class about Tourette's and Presenting my Documentary to them

So I promised I'd blog about this, and I don't have much else to blog about today. I mentioned in a previous blog post that I was starting a new trimester today and that I thought I was actually going to feel better about ticcing in my new classes than I usually do. Not many people actually came to school today because it was senior skip day, and more than half of the senior class skipped, but I still think I felt better than I usually would have in my new classes. This I think is a result of two things.

#1, I posted my Tourette's documentary on my facebook page and most of my classmates can see it. Although all of them probably didn't sit down to watch it, I think a lot of people did actually see it on my facebook page and I have heard from some people in my class who watched it and the ones that I heard from told me that they really liked it! I'm getting more comfortable about posting things relating to Tourette's on my facebook page in general. I "liked" the National Tourette's Syndrome Association, posted my documentary on my facebook page, and posted a TSA PSA that I thought was really neat on my page yesterday with a comment underneath that said "for my TSA friends!" and then I tagged them!

#2, after I e-mailed my documentary to my college counselor, she e-mailed it to my class dean, and my class dean asked me if I would be willing to present the documentary to the senior class. Although I was a bit hesitant about this, I agreed, and will be presenting it to my entire grade probably sometime in March. So I figure its all or nothing pretty much. If I go up there and don't mention I have Tourette's it will seem like I'm hiding from it. "Oh I just...ummm....wanted to show you guys this documentary I made...and I made it just cause". No, that's just not my kind of style.

If I want to be open about this, and really put myself out there, I am going to do just that. If Marc Elliot can do it, then so can I. Anyway the idea that I am going to show the senior class my documentary, and tell them a bit about Tourette's and what it's like then there's really no reason to feel really embarrassed about ticcing. This is what I keep telling myself, and I think it's making me feel just a bit better.

On Friday, I will be talking to a class of middle school students about Tourette's and showing them pretty much my full documentary, so that will be some good practice! I have been watching Jen Zwilling's TSA presentation for some pointers on how to really give a TSA speech. If you are interested in that check it out! Jen founded the TSA Youth Ambassador Program and is really an inspiration!



Monday, February 20, 2012

New Tourette's PSA!

So I just found a new Tourette's Syndrome PSA that I think is really great! I am debating whether or not to post it on my facebook page....hmmm. I may do that later. But anyway here is the PSA! It's a National TSA PSA video so no wonder it is done so well!

Video on youtube that I uploaded from Vimeo:

Sunday, February 19, 2012

How I've spent my 5 day weekend! And starting a new trimester Tuesday!

It's been a nice, long, and relaxing weekend after finals! I so needed these 5 days to recover from all that stress that comes along with finals week. I spent all day Thursday procrastinating and avoiding writing the 6-8 page paper that was due for my Satire class Friday at midnight, then spent all day Friday really sitting down and writing it. It took all day Friday pretty much and was soooo draining but I got in done and think I actually did a pretty decent job on it. Then I've spent all day Saturday and Sunday relaxing and having fun! Yesterday I went out to lunch with Speed Racer and we hit the science center for an hour or two. He gave me the LARGEST chocolate bar that I have ever seen for valentines day! So sweet of him! It was in a gold box with a red ribbon wrapped around it. I hadn't had any time to get him a present because I was so busy studying and dealing with finals but I went out today and bought him a present (artisan chocolates!). Then Saturday night I went out to eat Mexican food with my Grandpa. He insisted that I pick him up, drive to dinner, and pay with my new credit card that he had set up for me with a nice cushion of money inside of it. I ate so much food; it was ridiculous!!! The best part was the desert which was a chocolate tacco with mint chocolate chip ice cream and strawberries inside. So today I've been relaxing even more. It's sooo nice not to have homework! I slept late, played around on the computer, gave in and watched Breaking Dawn (which was mushy and cheesy but still kind of good),visited my grandma in her new assisted living home with my mom, bought valentines day chocolates for my boyfriend, and bought some cookies for my dog. Yep that's been pretty much it!

I have Tomorrow off as well, and supposedly Tuesday is supposed to be senior skip day, but I don't know if I'm actually going to skip. It's kind of silly to have senior skip day right after you've had a 5 day weekend! So my tics have calmed a bit since exams with all the relaxing and I start my new trimester Tuesday or Wednesday depending on if I skip Tuesday or not. I have two new classes with new teachers though, joy. I hate having new classes and new teachers. It means more explaining of Tourette's to both the teachers and the students. I will try to send my new teachers an e-mail about Tourette's either today or tomorrow. The e-mail always helps me feel a little bit better knowing that my new teachers know and hopefully understand. This is the e-mail I usually send so I will send this or a variation of this to them before class on Tuesday:

"I've been e-mailing my new teachers to briefly mention something. To avoid any possible confusion on the first day I just wanted to mention that I have Tourette's Syndrome. It does mention this in my personalized school plan, but I have found that teachers are not always able to get to all the plans before the first day of the new trimester and it makes me feel much more comfortable knowing that I have informed my teachers personally about this. I have both motor and vocal tics which include involuntary movements and sounds, but I don't swear or say offensive words. Usually my tics aren't disruptive to the class, but sometimes it helps me to get up and walk around for a bit if they get particularly bad. If you have any questions feel free to ask me or talk to the learning specialist. You can also visit for more information about Tourette's."

So that's what I will send! I sent it last trimester to my new teachers and got very good responses from them.  It helped me feel a whole lot better on the first day in their classes knowing they were aware of this. My tics usually are worse than usual on the first few days of a new class. It's kind of like Tourette's need to make a disclaimer right off the bat. Well we'll see how it goes. I think I will feel better about the new classes this trimester than I ever really have before. The reason for this is because of something I haven't talked about on my blog yet, but will blog about soon. 

Thursday, February 16, 2012

What's been going on in the Tourette's Community this week? (Week of Febuary 13th)

(Feb 11th) Jamie Grace: From Tourette Syndrome to Grammy nod

(Feb 13th) Researchers say New York high school's outbreak of tic-like symptoms mirrors bizarre Mass Psychogenic 'Dancing Plague' in France in 1518:

(Feb 14th) Teenager starts braying like a donkey after pregnancy triggers a new and bizarre form of her previous Tourette's Syndrome: 

(Feb 14th) Jamie Grace (a 20 year old with Tourette's) had a blast at the Grammy's after being nominated, even though she didn't win:

(Feb 14th) Teen Moriah Silvers TSA Youth Ambassador advocates for herself and others with Tourette's through local speeches and selling T-shirts (Video):

(Feb 14th) Trevor Grogg, 11, of Jefferson Township and his family talk about the changes that were needed after his Tourette's Dignosis  on Reading Eagle:

(Feb 16th) Greg Dickerson, Celtics reporter, details his battle with Tourette syndrome and  Epilepsy:

(Feb 16) Bar Mitzvah provided needed moments of happiness for family with son with Tourette on NJCTS TS Parents Online Blog:

How my weighted blanket has helped me for exam week!!!

So today I wanted to blog yet again about my amazing weighted blanket! Every year around exam time or any stressful time in my life really I have a lot of trouble sleeping. I will usually squirm, and thrash, and tic for hours before I am actually able to go to bed at these stressful times. So I was curious to see how my weighted blanket would effect my sleep for exams. I have been sleeping a lot better in general, although I do still tic in bed on a nightly basis, but not to the extent that it significantly interferes with my sleep to the extent that it used to. So when exams came up I curled under my weighted blanket like usual and ticced a bit as expected but to my surprize I fell asleep in less than 20 or 30 minutes. That's like a record for me on the night before an exam. While it usually takes me hours to fall asleep each night before an exam, with my weighted blanket I was able to actually fall asleep fairly quickly and with little fuss. And I didn't wake up once during the night on either night before exams. I am so thankful for my weighted blanket! Although I still do tic at night to some extent, it really has proved to be a great help at night and has increased the number of hours of sleep I get. I feel more awake during the day and the blanket is just so comfy its really unbelievable. I've slept with it every single night since it's come in the mail and the one night I put it at the end of my bed and tried to sleep without it, I woke up in the morning underneath it like usual anyway without even remembering how it happened.

The other thing I wanted to blog about today was something new I am going to try. A while back over winter break I did a daily links kind of thing but when school started up again it was just to much to keep up with. So i've decided to start a weekly "What's been going on in the Tourette's/OCD community this week?" post which I will  try to put up at the end of every week!

Wednesday, February 15, 2012

Exam Day Number 2: How the School Nurse and the Learning Specialist made my day a little better

Well today was my last day of exams and I am finally done with this trimester! Now I have a five day weekend to look forward too! Although I do still have to write a Satire final essay that's due Friday at midnight. I drove to school to take my last exam at 12:00 because my mom was working so she took my grandma's car to work and gave me her car to drive to school. I still don't have the identification tag that I'm supposed to have to park in the right lot without getting a ticket so I had to go to the front office to explain that I didn't have it because I usually don't drive to school since I don't have my own car

When I went to the front office, the lady who is usually there was somewhere else and the school nurse was taking her place for the afternoon I guess. I told her about my car situation and she wrote down my name and car type so I wouldn't get a ticket. Then she said "You're Ruthie right?", I replied that yes I was and then she said  "You don't come see me but I know who you are! I watched the first 4 parts of your documentary and I'm going to watch the last part very soon and it's great!". 

Wow, this thing seems to be getting around the school! I didn't send it to her of course because I don't know her, but I guess my dean or adviser sent it to her. I think its really cool that she had watched it and that she knew me, but for some reason I thought of the little boy from the "I have Tourette's but Tourette's doesn't have me" HBO documentary who says "You feel like a marked man, like people already know you". In this case, I kind of felt "marked" as the little boy called it, but not exactly in the same way. I felt like people may know me because I have Tourette's and yes, that may be the only reason they know who I am, but at the same time I felt okay with that because I know that people know that I am not ashamed of having it and that I put myself out there in order to educate others about the condition. So in this way they know more about me than just the fact I have Tourette's. They know that I am the kind of person who does not hide behind their differences, who wants to help and educate others, and who is an advocate. This little encounter helped to start off the day nicely and made me feel kind of special.

After this I went to the learning specialist's office to take my last exam. The freshman from the other day was in there too once again and we both sat down to take our exams. I immediately realized that the exam was really hard and that our teacher had not prepared us well for what to expect at all. As I got further and further into it I started kinda freaking out more and more. My tics just got worse and worse and I was doing one of my lip noise tics along with many others.

When the freshman went to the bathroom, the learning specialist asked me if I was alright and said "Your ticcing is worse today, are you more stressed or something?". I explained to her how the exam was nearly impossible and she asked me about my teacher and talked with me for a little bit. Talking about it actually really helped because I calmed down quite a bit and my brain was in less of a negative spiral. She seemed to know just how to help and then later she gave me some candy which helped too. I'm just glad I'm done with exams. I tried my best, and it will be what it will be. Luckily it will be on a curve though so maybe everyone else did just bad enough so that I might end up with an okay grade. We'll have to wait and see.

I Have Tourette's but Tourette's Doesn't Have Me  (Video Clip)
(Riley 2:49- "You feel like a marked man, like people already know you")

Tuesday, February 14, 2012

Exam week stress sure does take it's toll

Well I know I haven't blogged since Saturday but I think I have a legitimate excuse (although I probably don't need legitimate excuses for not writing on my own blog, lol!) . This week is exam week because my school is on the trimester system and it's the end of the trimester. I absolutely hate exams. Hate, hate, hate them....with a burning passion! The stress really gets to me, and always has. Since Friday i've been studying a lot but I always feel like I haven't studied enough which is probably the case this year since I have some senioritus. I just did not feel like studying my guts out this time around, but the stress still gets to me.

The stress of exams means new tics, more tics, and more obsessions. My mouth opening and stretching tic has been going crazy and i've been dealing with a fairly unpleasant tic that is pretty unusual for me since Friday. Most of my vocal tics are either sniffing, coughing, throat clearing, or high pitched noises so it's fairly different for me to be ticcing a more average voice pitched "wa" or "wu" sound now pretty regularly.

On Friday when it started it was awful! I started doing it in physics class, had to leave the room many times, and kept doing it for the rest of the afternoon. Even Steam Punk was a little thrown by the new tic. Anyway maybe it won't last long, but it seems to have held out for at least 5 days now.

I took two exams today in the learning specialists office. I've taken many exams in her office before but sometimes I don't feel the need to and I just take my exams in my advisory. This time around though with the new vocal tic and with my tics being as bad as they are right now I figured I should take my exams in her office. There was another student taking exams in her office, and my best guess is that the learning specialist told the student about my tics because she didn't even turn around or make any comments. On the other hand though she is a pretty skittish looking freshman and I am a senior who obviously has a reason to be taking her exams in the learning specialist's office, so I doubt she would even make a comment if she didn't know.

Overall not sure how the exams went just yet. I hope I did well, but I just have to wait and see. I had my Calc exam and history exam today and tomorrow I have my AP French trimester exam. I was so exhausted after the exams and felt like I was just going to collapse! My mom and I went out to get a cheese platter to celebrate which I really enjoyed. I'm feeling a little more awake now because I had a diet coke.

These exams are a lot of work but I get to look forward to my 5 day weekend this weekend! Yay! Who doesn't love 5 day weekends?!? Then after my 5 day weekend I am going to be super busy with starting a new trimester, presenting my documentary to a class of middle school students with Aspergers syndrome,  and presenting my documentary to a class of my Neurologist's graduate students as well as answering questions/ talking about what it's like to have Tourette's. A busy but fun week ahead!

Saturday, February 11, 2012

Marc Elliot TSA Event!

Hey guys! So I should really be studying instead of posting on my blog but I just have to post about the Marc Elliot event! I have three exams next week so I've been super stressed which means my tics have been crazy bad this week but I seem to be managing.

Anyway Thursday night was the Marc Elliot TSA event which I had been excitedly waiting for for a while! My cousin Twitch was able to come which I was very happy about! Having her there was really nice and made me feel more conformable. Anyway I drove myself to the event with my mom in the passenger seat of the car because #1 I had no idea how to get to the random community center that the event was at and #2 my mom couldn't be without a car from 6-9 at night. We got a little lost by found it in the end!

I showed up early to help set up some tables and chairs for the event and to set up my laptop for showing the documentary. And when everything was set up, we all waiting for Marc Elliot to arrive. While we were waiting, the president of the TSA chapter told me that when Marc was done speaking she wanted to invite me up to the stage to introduce me and to have me talk a little bit about the documentary I just produced. I was nervous about this since there were already like 30 or 40 people in the audience but I was also really excited!

When he arrived the president of the TSA chapter grabbed me and introduced me to Marc. I had already met Marc when he came to give a speech at my school but this time I would get to meet him more in depth. The President and Marc both said that I was like the mini Marc Elliot, haha. I guess they said this because I am very involved with the TSA chapter and made the TS documentary, and am a very good student who is applying to the same college that Marc went to. The President had told Marc all about me apparently and meeting him on such a personal level was really exciting!

Marc asked me about how my senior year was going and then asked me if it bothered me that when he came to my school and gave the speech he asked everyone to stand up and "have Tourette's" for a few seconds. I told him that it was a "interesting experience" but that it didn't bother me at all. I thought it was a very good exercise. He then asked me if there was a time that my tics were worse or more obvious. I told him that my Junior year was the time when people started really noticing and asking me about it and I just told them what was going on and that everyone has been really great about it. He asked me if pretty much everyone in my class knew about my TS, and I said that yeah I think most people do.

I really felt that he cared and wanted to know about my experiences with TS because he really knows what it's like. It was so neat that we had this connection and that when talking with him I knew that he knew exactly what I was talking about and exactly what it's like. Talking with Marc Elliot (someone who has TS who is older than I am and can be a role model in a way) on such a person level made me feel really special and part of the Tourette's community.

 After talking to Marc, I talked with two of my TSA friends who are both guys. One is a sophomore in high school and the other is a freshman in college. Shortly after, we all took our seats and Twitch showed up and I moved to go sit with her.

Marc's speech was pretty different than the one he gave at my school. I kind of expected it to be the same, so I was excited to hear something new and fresh. He read the first two chapters from his book and answered loads of questions about Tourette's. At a few points he got really emotional and started tearing up because he gave his first speech in high school at one of our local TSA chapter meetings and now he is a nationally renown speaker.

Listening to what Marc had to say on Thursday actually has changed how I feel about my tics in a way. Even though I tell people I have Tourette's openly, and even though I am very used to my tics, I still feel a lot of embarrassment when I tic in class or in public or even around people I know well like my friends or teachers. I feel as if they are judging me in a way even though they know I have Tourette's. One thing that Marc said really struck me and changed the way I feel about this in a way. He said that a few months ago he became frustrated because he thought people were judging him and not letting him live his life and talked to a friend about this. His friend then told him that Marc was the most hypocritical person and judgmental person of them all and that in reality Marc has no idea what other people are feeling or thinking about him and the only person in reality that is assuming that other people are judging is Marc himself. He was assuming the other people were judging him or making assumptions about him when in reality he was the person making these assumptions about what other people thought of him. Marc then realized the only way he could find piece with himself was to stop judging himself and making assumptions about what other people around him were thinking.

This really spoke to me. How can I make assumptions about what other people are thinking of me if I have no idea what they are thinking in reality? The only person who is being effected by my thoughts are me. It is truly inspirational to meet someone who realizes that in order to be happy you just have to be yourself, stop being apologetic about it, and stop judging yourself for something that you can't help. At the end of the day all that matters is how you feel about yourself and you can't worry about other people's thoughts because ultimately you will never know exactly what they are thinking. I think this is a message that really anyone can benefit from, not just people with Tourette's.

After Marc was finished speaking, the president of the TSA chapter went up to the front to talk about the local TSA chapter and upcoming events. I then turned to Twitch and said "This is going to kinda freak me out, she's going to have me come up there and talk about my documentary". Twitch gave me a little first pump thing, wished me luck, and told me she would clap for me. Then the president introduced me and called me up to the front of the room. I don't exactly remember what she said to introduce me because I was nervous but she said something to the effect of where I go to school, that I have Tourette's, that TSA teen pizza night was my invention, and that I had just produced a Tourette's documentary. I hadn't really prepared what I was going to say so I just kinda did a short spur of the moment explanation of how I put my documentary together and how you could find it on youtube and that we have my laptop set up in the back so that afterwards people can stop by it and watch a bit. I went back to my seat and later Rachel and Trainman told me I did a good job. Sure was nerve racking but I felt like a real leader which always is a great feeling.

After that was all done, I went to set up my laptop to show the documentary. I made sure it was working so people could watch it as they passed by and then introduced Twitch to Trainman and MiniBrad and then we all went to stand in line to buy Marc Elliot's book and get it signed by him. We were at the very back of the line so we all had a while to stand around and talk.

I had fun catching up with Twitch about what had been going on in her life and catching up with Trainman as well. We finally got up to the front of the line and I bought my book and had it personally signed by Marc! We talked with him a bit and then the night was over and Twitch and I walked down together and my mom was there with the car. My mom was happy to hear that I had introduced my documentary to the whole group, we picked up some dinner from a grocery store, and I got back and went to bed because I was just plain exhausted from the exciting night! One of the best TSA events I have ever been to by far!

Thursday, February 9, 2012

Marc Elliot Event Tonight and Future Speech for Medical Grad Students!

So today is a very action packed day in terms of Tourette's! Tonight is the TSA event with Marc Elliot which I have been excited about for a long time! Turns out that my cousin can come after all so that makes me even more excited about it. The President of our TSA chapter really wanted to show parts of my documentary at the event but it turns out the room we are meeting in doesn't have internet capabilities or a projector to project from a laptop. She still wants me to bring my laptop with the documentary files on it so we can set it out for people to watch, but  I don't know if that's really going to work at all because I have no idea how to set it on a loop. So the fact that I am excited for that is making me very ticcy today already.

In addition to that I have been sending out my documentary to my grandparents, college counselor, interviewers, collages, and my neurologist and the other Tourette experts I interviewed. I have received so much positive feedback about it and mostly everyone thinks it is well done and very emotionally touching. Another very exciting thing that has come out of this documentary is that I e-mailed it to my neurologist (who originally suggested people for me to interview for the documentary). He was too busy at the time to do an interview for it but he directed me to two awesome and very knowledgeable Tourette experts who were fantastic. After seeing the finished product, my neurologist e-mailed me to let me know that he thought it was outstanding and in addition he wants me to present it to a class of grad students that he teaches at the medical school (one of the top med schools in the country!). He also wants me to just talk to them about Tourette's and what its like to live with it. He thinks they can really benefit from my perspectives. Anyway as you can tell it was an action packed day as far as Tourette's goes! I am very honored that out of all of my neurologist's patients he chose me to ask to talk to his grad students and that he wants to show them my documentary. We may not have time to show the whole thing, but he says we can show parts of it. When I told my mom that my neurologist asked me to talk to his grad students during a class she started laughing! Like literally laughing! She just thought it was so funny that an 18 year old with Tourette's was going to talk to a room of 35 grad students at one of the most prestigious med schools in the country to teach them about Tourette's Syndrome! After she was done laughing and asking me if I was joking with her she told me how proud she was and told me that I should be very proud as well. My dad also thinks its totally awesome that my neurologist asked me to do this.