Monday, May 28, 2012

"Tourette's Tics me Off" Wristband!

Oh yeah! I forgot to mention that I ordered a "Tourette's Tics me Off" wristband through a mutual friend and it finally came in the mail!!!! When I saw it was in the mail, I started ticcing like crazy with joy and excitement! It's a little big for me unfortunately, but I'm still going to wear it none the less! I wonder when my first chance to wear it will be! hmmm....maybe I'll wear it to the tsa event coming up! Or maybe when i'm hanging out with some of my friends this summer!  

First Three Nights as an Usher

Well, I've been avoiding blogging for a few days. I've probably been avoiding it because its summer time now and I'm out of school. I've been so busy with my senior project for the past two weeks, and now i'm finally done with it! Yay! I enjoyed the project, but am so looking forward to the freedom of the summer. Not complete freedom of course, but more freedom than being on a school schedule.

As some of you know, I started working as an usher at an Opera Theater company for a summer job to make some money and keep me busy. I'm only 18, so this is really my first official paying job besides lots of babysitting. Although I enjoy freedom, I also get bored easily and hate it when I have nothing at all to do. I was somewhat worried about the challenges Tourette's would pose when working in a professional setting like this, but so far so good. Everything seems to be working out just fine for the most part.

I've only been working for three days as an usher, but I've made it a point not to be ashamed of my Tourette's and to also be open about it in the new work setting. The good thing is that all of the ushers are around my age (high school/college aged) and there is so much down time during the acts to just chill and hang out with the other ushers. The first night I decided to feel things out and not really jump into telling the other ushers about my TS right away. I'm not the kind of person who feels the need to introduce myself with the TS label attached. I feel it out and then I've found that if I keep an open mind and tell myself i'm going to be open and willing to talk about my Tourettes, then I always know when the time is right to talk about it.

There is always a downside though to not telling the people i'm around that I have Tourette's. Even though I can't stop a majority of my tics from happening, I do stop the smaller tics from happening almost unconsciously when i'm around people who don't know I have TS. This usually ends in a major and sometimes violent explosion of tics at the end of the night when I get in the car and go home. Luckily the girl I hung out with most of the night just happened to know my cousin who also has Tourette's. I think when she saw my ticcing she guessed that I have Tourette's too, because even when I did vocal tics around her that night, she didn't react. Even though I hung out with her and another girl the first night for the most part, I had still been suppressing tics throughout the night and when I got back in my car, I couldn't help but erupt in an explosion of jerking tics and loud screeches. I was so anxious and ticcy and I ended up going the wrong way and getting lost. I called my mom practically in full panic mode and put her on speaker phone so she could help direct me back home from where I was. Even though it was a semi-rough first night, I still had fun hanging out with the other ushers and getting to experience my first night of a real paying job.

The second night after that was much better. My mom drove out in front of me so I could follow her and not get lost this time and so she could show me the right street to turn on to come back as well. It made much more sense to me this time, since I wasn't as anxious and ticcy as last time. When I was standing at the infamous door #2 to check people's tickets, I kept banging my knees against the ticket stand which got to be painful after a while and kept stomping me feet too. At one point one of the patrons walked past me and said "Just keep stomping blood into those feet". I found this slightly amusing. Afterwards when I was with all the ushers outside again I was hanging out with two girls and I felt like it was the right time to briefly mention Tourette's and just get it out of the way and in the open. I told them that I had found a very good way of getting out of having to see the opera's. "Hey don't get me wrong," I said "I like the operas, but I move around more than other people and the people sitting next to me tend to get annoyed". I then went on to say "I have these things called tics, which are involuntary movements and sounds. It's technically called Tourette's, but I don't swear or anything like that. That's only 10% of people who have it". After I was done with my short explanation one of the girls said something to the effect of "They shouldn't get annoyed. You can't help it".  She said it in a way that made me think she was trying to make me feel better which I always appreciate. A few minutes later I ticced and she stopped talking for a second and I looked at her and she said "its okay" like she was trying to reassure me it was okay that I ticced and she was okay with it too. I love those people who try to make me feel better or more comfortable when I tic. They really just make my day.

So, the first two days went very well in my opinion. I felt really good being open about my TS and I felt really good getting to really have a paying job for the first time. I've had another night of work too that went really well when I told pretty much the whole group of ushers about my Tourette's. I didn't really intend for it to work out that way, but it's really great that it did! Everyone was sitting in a big circle and going around and saying their name and one interesting thing about themself. I thought about saying that I have Tourette's, but once again decided not to because it seemed to defining to say it that way. I said that I was going to collegenext year instead. They seemed really interested since they know what a good school it is and asked me what I was majoring in. I told them that I was probably going to major in psycology and neruological reserch and they thought that was really cool and meant I was really smart. One of the girls in the group said "I have a neurolgost. I have epilpsy." and immediatly without even thinking about it I said "I have a neurolgost too. I have Tourette's Syndrome." The all looked very accepting and interested when i said it and another girl in the group announced that her bother has Tourette's, which I thought was really neat!
Now that everyone knows, I no longer go back to my car and explode with tics from supressing the smaller tics and am coming to be able to just tic regualy around them! I feel so much better knowing I was open about it and knowing that they know what's going on when I start ticcing. I really think it was the right thing for me to tell them.

Tuesday, May 22, 2012

Advice for those who have children who have yet to be diagnosed with Tourette's

Today I got a message from a woman who needed some advice about TS and her son's situation. I thought I would post it on my blog because I know so many people can have similar concerns or can be in similar situations. Here is the question and also my response. I hope this can help all those dealing with a child who is yet to be diagnosed with TS but who knows diagnosis is soon to come.


Hi, My son is just in the process of being diagnosed. We know he has it. He is 7 and has been having tics since he was 4. He also appears to have OCD and some sensory issues.

His pediatrician has told us that we'll watch things for now, and if the tics worsen, we'll see a psych re: treatment. I simply didn't think to ask at the time - what do I do until then? How do I reassure my son? Do I just ignore the tics and accept him as is, encourage him to suppress things???

Also, my biggest concern is school for next year. I am thinking of approaching the principal to discuss the most appropriate teacher to reduce my son's stress. Your thoughts would be very appreciated! Thank you!

My Answer:

Hi! Sorry that you are having to go through a difficult time with your son. I know how hard TS, OCD, and sensory issues can be as I have them all as well as Dysgraphia, Anxiety disorder, and a math calculation disorder.

I would actually recommend not to wait and watch things for now. If he has had both motor and vocal tics since he was four it's very likely that he has TS. I was forced to wait until high school for a diagnosis and it was miserable to wait. For most kids with tics like your son's, a diagnosis is inevitable and the longer you wait the worse the situation can get in my opinion. Early diagnosis leads to increased self-awareness of tics (which can lead to an improvement of tics later on as apposed to a worsening of tics in many cases), increased self-esteem, and most importantly increased knowledge of the disorder for both your son and those around your son like teachers, classmates, siblings, friends, and family.

Also I recommend to see a pediatric neurologist who specializes in movement disorders instead of a psych if possible. TS is a neurological disorder not a psychiatric disorder and many kids who see the wrong kind of professional can get misdiagnosed with something else when they really have TS.

Until you see a specialist (which you should do as soon as you can), encourage your son to just be himself! Let him know that its okay if he has to tic and let him know that you accept him for who he is! Do not encourage him to suppress. That is the absolute worst thing you can do. When a kid with TS is told to stop tics it only can make them worse both short term and long term. You have to let the tics run their course because truthfully no matter what you say they are going to run their course anyway. Ignoring the tics in the moment is the best policy and talking to him at a time when he is relaxed to let him know you accept and love him no matter what tics he has or how much he tics is best.

As far as school goes for next year, EDUCATE, EDUCATE, EDUCATE! Do approach your son's teachers/principal to let them know about his situation. If it becomes necessary, it can also be helpful to educate his class depending on how noticeable his tics are to those around him. The worst thing for a kid with TS is to be punished or singled out for something they cannot control and the best way to avoid this is to educate those around him, espeically those in his school. Also talk to the teachers about maybe providing him accommodations that would help with his stress level. It has been very helpful for me to have extended time on assessments and the accommodation to leave a space to go calm down and de-stress if my tics, anxiety, or OCD is bad. Sometimes I don't even use the accommodations, but just knowing they are there for me to use if I need them helps to decrease my stress level a lot.

Hope this has helped! Let me know how things turn out and let me know if you have any more questions or concerns.

Sunday, May 20, 2012

Elementary School Reunion

Yesterday was my elementary school reunion. The school hosted the reunion since we're all seniors now and will be off to college next year. I knew seeing my elementary school friends would bring back a lot of memories, some of which were not pleasant memories. As i've mentioned before in previous posts, I was bullied in elementary school because of my tics by two boys, but still had 3 or 4 close friends. With my close friends I made excuses. When I was sniffling a lot, I had a "sinus infection" or a "cold" or it was just my usual "small sinuses". When I squeaked or squealed so much at sleepovers that my friends started to get annoyed, I was "stretching my voice" or "being silly". When I grabbed at my crotch area, I ignored the looks and the rude comments from the bullies because there was no good excuse for that one. There were a lot of unpleasant  memories and I just thought I was a really weird or annoying kid.

Since elementary school I haven't seen many people from the class really. I may have run into them once or twice and I spent some time with my close friends from elementary school as well in 7th and 8th grade but that was pretty much it. So this was my first time seeing them really with a diagnosis and a knowledge of what was going on with me all those years in elementary school. It was the first time I could be around them, be ticcing, and not have to think that I was this really weird or annoying kid.

I was doing a fair amount of ticcing at the reunion, particularly my facial tics like eye rolling or mouth opening, but not a whole lot of vocal tics or any major tics that would draw a lot of attention. I just let myself be me though without having to feel bad about which was just pretty incredible considering all the pain I endured in elementary school with these same people. The two boys that had bullied me didn't actually show up though. I don't blame them at all for not wanting to show up. One was held back a year in high school and the other was kicked out of his school for sending out threatening e-mails to the entire school. Goes to show you what kind of people are the bullies and what kind of things they end up doing later on in life.

I had a lot of fun catching up with my old teachers from elementary school and catching up with my friends as well. It was neat hearing where they were all going to college and what they've been up to! My friend who always wanted to be a fashion designer since 4th grade is going to a fashion design school in Chicago and my friend who was always so smart is going to Cornell. We all reminisced on old memories of how we used to ask each other about our pets when we had nothing to talk about, old songs we were forced to sing in music class, and our class trip to Chicago.

We all ate lunch and sat outside on the front lawn of the temporary school building because the building recently had a small fire in the attic and has to be repaired. The ironic part was that when we stepped in the building, I immediately recognized it as the place where I had OT (Occupational Therapy) for my Dysgraphia and Sensory Processing Disorder back in 3rd and 4th grade.

Also another thing was that my friend Sabrina actually brought up a time from elementary school when I was ticcing. We were talking about our class trip to Chicago and I couldn't remember who I roomed with so I asked my friend Sabrina if she remembered. Sabrina did remember and said that I shared a room with our friend Kelly who had later the next day told Sabrina she was slightly annoyed with me because I had been "stretching my voice" so much. I was surprised that she actually remembered this, because I didn't even remember it that well. I guess I have vague memories of it, but I can't even remember if I was doing it in the morning or at night or how Kelly reacted at the time. I guess it was just normal for me, so it wasn't too memorable at the time. Sabrina is the only one in the group who actually knows that I have Tourette's so I guess it all makes since to her now. I got a few stares when I was ticcing from the other kids who were in the class, but hey i'm used to that. They stared once or twice then got over it. For the most part, no one gawked or asked questions, but I wasn't even ticcing half as bad as I do sometimes.

We rapped the reunion up with trying to replicate our 6th grade class picture with the people who were there. The whole class didn't show up, but there were certainly enough people there to replicate the picture pretty well. And we all got Alumni society cups! After the reunion was over my group of friends from elementary school decided that we all wanted to go get smoothies. Three of my friends rode in one car, and I rode with Sabrina. As i've mentioned before, car rides set my tics off, but since we were talking and trying to navigate our way to the smoothie place my tics didn't get that bad. I did a few vocal tics in the car and the first time I did a vocal tic, Sabrina said "That didn't really sound like a sneeze? Was that a sneeze?". I told her that no it was not a sneeze but I was having a good time and didn't want to dwell on it or get into a conversation about it so I quickly changed the subject.

We ended up getting lost thanks to the great map program on my iphone, lol. But we eventually found our way to the smoothie place. We were a little later than the other three girls, but we still got there with plenty of time to get smoothies and hang out. I got a raspberry smoothie that was too sour, but I didn't really care because I was just having fun catching up with Sabrina and the rest of my friends from elementary school. Since I had been on the car drive, my vocal tics were still acting up a bit and I was doing some vocal tics in the smoothie store.

When I did tic, no one really reacted except for one girl who I wasn't really ever that close of friends with. I assume that means that the rest of them had some idea about my Tourette's from some of my video shares on facebook and from other kids who were in our class who know now. The girl that didn't know though said "What was that? That was really adorable!" and she started laughing a bit. I just laughed along with her and instead of giving her an explanation I just moved on to the next subject. I didn't really feel like explaining since I probably wouldn't hardly ever see her in the future and I didn't want to put a damper on the mood or anything with a serious topic like Tourettes. Hey don't get me wrong, I educate a lot of people about Tourette's and usually take the times I tic as an opportunity to educate and explain about Tourette's, but I do pick and choose when is the time to educate and when is the time not to educate.

Overall, I had a really great time at the reunion!! I loved seeing all my friends from elementary school, catching up, and reliving old times. Most of all, I loved not having to feel like "that weird annoying kid" that I always used to feel like. Instead I just was able to be myself which meant being okay with the fact that I ticced around them and not even feeling it necessarily to give the whole Tourette's explanation as a way of explaining that I really wasn't just a weird annoying kid. I knew inside of myself that I wasn't just a weird and annoying kid. I know I have Tourette's and that my tics are just part of me and that's what really matters in the long run.

Saturday, May 19, 2012

Senior Project- Day 3 and 4

Day #3 – Please comment on your own strengths and weakness with this project.  At what are you excelling and what is the most challenging?

While working at litzinger I have found I have many strengths but also some weaknesses as well. Some of my strengths include working with technology, staying focused and on task, getting work done, being productive, and being willing to do anything I am asked to do in the classroom or anything that I think needs to be done. I have worked with technology like Microsoft word and Comic life so far to make binders of “helpful reminders” for students which include images and comics that I have made using comic life. I am very good with technology and the teacher in the classroom was so impressed when I had finished the comics and images to fill the binders. She even said that they looked so professional that they should be published. I was able to spend a lot of time and use a lot of effort to work on this project. I got a lot of work done and was very productive which are strengths. I also am very good at writing, and reading comprehension so it is very easy for me to help the kids with that. I am good at helping them understand what they read and write as well.

I do have some weaknesses that I have discovered though. I have trouble being strict with the students and using my authority to get them to behave. I find it hard to tell the kids what not to do and tell them when they are being too loud or that they are misbehaving. I am reluctant to do this mostly because I know how angry these kids can get and I don’t want to be the cause of a major meltdown or have physical or verbal attacks directed at me. Although the kids are so sweet most of the time, in a second they can completely change and have a major meltdown and need to be brought to another room to calm down. I am getting better at being strict with the kids and letting them know when they are misbehaving, but this aspect is one of my weaknesses and I still have reluctance surrounding this.

Day #4 – Answer all Random Questions. (Random Qs doc file)

Random Short Response Questions:

1.) Who did you sit next to most today?
I sat next to a boy who I will call P today. P needs to be supervised by an adult at all times because he has aspergers and depression and when he gets upset he tends to run off. He has to be supervised so that he 

doesn’t run off.

2.) Write one adjective to describe your performance on this project.

3.) What type of music is played at work or when people are on “hold” if applicable?
No music is played because it would be disruptive for the students. They watched a movie though today which was  called “The Game Plan”.

4.) On a scale of 1-5, how good was your day today?
Today I would rate my day as a 5!

5.) Would you ever really work here or do this for a living?
No, I don’t think I would ever work at a speical-ed school. The teachers have to really discipline the children and when the children get worked up and very angry they can punch, kick, and spit at teachers. Truthfully, I don’t want to work at a place where my safety is in danger. While doing my senior project I have had no problems with this because I am not the one disciplining the students.

6.) What did you wear to work yesterday?
I wore orange caprees and a teal shirt. I also brought a black jacket because it tends to be cold in the building.

7.) Who is the most challenging person/concept in the workplace?
The most challenging people are the students because sometimes they don’t want to do their work or get into an argument with the teacher or another student that will trigger a full blown violent melt down.

8.) Who/What is the least challenging?
The teacher of the classroom Ms. Ralson is the least challenging because she always gives me something to do to help out with in the classroom and always makes sure I am comfortable and respected by the students.

9.) What is the most important thing you’ve learned so far?
The most important thing I’ve learned so far is more patience. I have learned to be more patient with students who don’t want to do work or who are immature for their age and want to talk about things like Yugioh, angry birds, or talking orange toys.

10.) Who would win in an arm wrestling match?  You or your mentor/partner/co-worker (choose the one that is applicable)
The students would win in an arm wrestling match, particular some of the bigger students. Most of the students in the class are in 5th or 6th grade and some of the boys are very bit and strong compared to me or even the teachers. This is what can make their melt downs so difficult to deal with.

11.) What time do you have to wake up each morning in order to be at work on time or in order to be productive?
I wake up at 7:30 every day to be on time for work. The students arrive at around 9:00 and I like to get their early to talk with the teacher, get some paperwork or computer work done, and just show that I am willing to show up early.

12.) Write the title of your location and create acronym that describes it.

Thursday, May 17, 2012

Tourette's Syndrome Awareness Month!

Well it's officially Tourette's Syndrome awareness month! Well it's actually already the third day. I can't believe I haven't blogged about it yet! I love all the awareness being spread, all the videos being made, and all the Tourette's activity out there going on. This is the second Tourette's Syndrome awareness month that I have celebrated since my diagnosis and during this month I am proud to say I have Tourette's! Some people on youtube are even making Tourette's awareness videos every day of the month. The only thing that could make me happier at this point would be if my "Tourette's Tics Me Off" wristband that I ordered actually came in the mail! I have been waiting for it to come for like months...I guess that's what happens when you don't order it from a specific company but rather though a mutual friend. Hopefully it will come soon. I e-mailed the person sending it to me just the other week and she said she would get it in the mail as soon as she can. So there's not much more to say really...but I am going to include the videos that have been made so far in honor of Tourette's Syndrome awareness month! The first one is one that I made and the rest were made by others with Tourette's. There are plenty more Tourette's Awareness videos out there and there will be plenty more to come in the next month, so be on the lookout for all sorts of new Tourette's Awareness videos!!

Wednesday, May 16, 2012

Senior Project Post- Day 2

Day #2 – After two days working on your project, do you still believe this project is the right fit for you? Justify your response with examples and explanations.

After two days of working on my senior project, I still think the project is right for me. I had a great day today working on creating two “teaching moments” binders with images and comics made from comic life. I also ate lunch with the kids, went to art with the kids, and walked them to various rooms. I think it’s the right fit for me because I love working with kids and I am very good with technology. My technology skills helped me create the comic life and book pages for the “teaching moments” binders that I prepared for some of the kids.

Another reason it is a good fit for me is because I am very patient. Many of the children have anger problems, or have trouble responding when spoken too. Many people would be frustrated with the kids, but after two days I am still finding that I have the patience to work with them. I have seen first hand how difficult it is for the teachers to deal with the kids every day and how frustrated they do get with them, but so far I have been able to be very patient.

I am able to get the kids talking and socializing when they are in good moods and I have been able to engage with them in productive ways. I think the project is the right project for me because of my skills working with kids, my skills working with technology, and my patience. I also don’t mind doing paperwork or packing up school materials which I will soon also be helping with since the school is getting ready to close for the summer.

Also this is the part I did not include in my post for school, the Tourette's and OCD part. Many of the kids have tics since tics tend to come with aspergers and these kinds of disorders. One of the little boys in the class has both Tourette's and Aspergers and he is adorable. I have been enjoying spending time with him and talking with him. He's very quiet so i've been trying to get him to talk more. 

Monday, May 14, 2012

Senior Project Post- Day 1

Hey guys! So, sorry but this post is not about Tourette's. I started my senior project today! Yay! And every day of our senior project, my school requires that I write up a blog post based on the daily prompt and post it on the school blog. I figured that I would post the posts I write about my senior project here on this blog too because it's a part of my life right now and this blog is about my life. I also won't have a whole lot of energy to write TS based posts this week because of the senior project posts I have to write so I figured posting those here is better than posting nothing at all for two weeks! The posts sort of relate to TS/OCD/various neurological disorders though because I am working in a speical-ed school primarily with kids who have Aspergers Syndrome. So enjoy!

Day #1 – Describe how your first day began.  How welcoming was your mentor?  What was your first impression and what questions remained at the end of the day?
My first day working at Litzinger for my senior project started off very well. I arrived early so the teacher of the classroom would have the opportunity to give me any updates or let me know what she wanted me to help out with for the day. Ms. Rolston was very welcoming. I have worked with Ms. Rolston before and she is always very welcoming, warm, clear, and good at delegating work and leadership.
I started off the day by having a child read his self selected reading out loud to me and grading some reading comprehension worksheets for Ms. Rolston. Ms. Rolston then asked me to go work with a boy named Blake with a reading comprehension activity. She then spoke to me outside the room to let me know what Blake’s needs were so that I could do my best to help him. She let me know that repetition is always helpful for Blake and that although he sometimes isn’t as mature as he should be, he is very intelligent. Blake and I worked on reading comprehension for a long time and he was almost always able to get the right answer on his own or be helped towards the right answer with the use of repetition of ideas in the story we had read together.
Some therapy dogs came to visit with the children and while the kids were playing with the dogs “Pepsi” and “Kenzie”, Ms. Rollston told me that Blake had not been able to get that much work done in a long time. I was so glad I was able to help Blake stay on task longer than he usually would and that I was able to help him understand the reading as well.
After the therapy dogs came, the kids and I ate lunch together. The kids got a special pizza, soda, and cookie lunch because it’s near the end of the year and they had just finished preforming a play about Autism. During lunch I helped the kids engage in conversation by asking them about their special lunch, their play, and their favorite things to do in school.
After lunch I went to computer class with the kids and engaged in computer based activities with them. Unfortunately, after computer class I had to go to a doctor’s appointment that could not be rescheduled, but I really wished I could have stayed for the rest of the day because I was really enjoying getting to know the kids and getting to help them with their work.
Overall, my first day of my senior project was a great day. I got the impression that Litzinger is really a wonderful place for these kids and that the teachers are so dedicated in helping them improve on all aspects of their life, not just academics. Although the kids sometimes have a hard time getting to work, I think a new and friendly face in the classroom was something that helped some of the kids stay engaged and interested in the school work. I was so glad that I could be this new and friendly face and that I get to help the kids out for the next two weeks. I have a lot of questions though going forward. Will the kids be as co-operative with me as they get to know me better and as I become less new and exciting? Will I have to deal with the difficult situation of when a student that I am working with looses their temper? Will I deal with this situation well? Will the kids who were more shy around me become more comfortable with me over the next two weeks?
Today I think I learned and grew. I learned more of how to help the kids stay on task and how to let them take a little break if they really needed to in order to avoid meltdowns and frustration. I learned that progress and success at this school is not necessarily measured by how well they compare to other students, but instead how they have improved according to their own personal goals.

Saturday, May 12, 2012

Meeting with Disability Resources for next year

I just realized that I forgot to write a post about the meeting I had with disability resources about a week ago. Since I live so close, the assistant director of disability resources suggested I come in for a meeting since I knew I would be requesting accommodations. So we set up the meeting, and  I just drove on over . The drive over was just fine, but as soon as I got out of the car it started pouring rain! Luckily I had brought my raincoat and I tucked the documentation (a letter from my neurologist and some paperwork from my learning specialist) that I brought under the rain coat and ran to the underpass. My pants were soaked by the time I got to the underpass and the fact that my hands were wet was driving me nuts and making me tic even more! I hate it when one part of my body is wet but the rest of my body is try. It's part of my sensory processing disorder.

There was another girl standing under the underpass getting out her umbrella and I said "it sure is raining out there". It's a new goal of mine to talk to a new person every time I go on campus. If I was in France I would have said "It's raining like a pissing cow!". Haha, that's the French phrase for "its raining cats and dogs". Il pleut comme vache qui pisse!

So anyway the girl asked me if I was a student and I told her that I wasn't but I was a senior in high school and I would be coming to my college ext year. We talked a bit more and when she found out I was looking for Cornerstone (the advanced learning center that houses disability resources, tutoring, and a lot of other learning based things) she said she would be happy to take me there because it was on her way. That was so nice! So the girl walked me to Cornerstone, and shared her umbrella with me, thank goodness! Everyone here is so nice and willing to help out which I absolutely love. I thanked her and then went into the building to wait for my appointment.

The assistant director of disability resources was so nice to me during our meeting! After a while of talking she told me that I seemed like the kind of person who really is good at advocating for myself and that a lot of students have a lot of trouble with that. She told me a lot of students could use my help with self advocacy when I got to college and I told her that maybe when I got to the college I could help them in some way. I really would love this. I love helping others advocate for themselves or feel more supported and less alone. That's a big part of what this blog is all about!

Also the point of the meeting: I'm going to get some great accommodations. None of it is for sure yet, but I will probably have extra time on all tests, quizzes, and exams, a private room for larger exam/test taking when I request one, a smart pen or a note taker, and a calculator for anything that requires math calculation. I have had all of these accommodations before except for the smart pen or note taker. The smart pen is basically a pen that records the lecture while you take notes and when you tap on a word it goes back to re-play that part of the lecture. And a note taker is a student who is the same year in college as I am who sits in my classes and takes notes which they later send to me. Both are accommodations for my disorder of written expression/dysgraphia and for the way my tics can inter-fear with successful note taking. I think both could really help me in terms of my note taking, but we will have to wait and see how it all plays out next year. I find myself using that phrase a lot...that I will have to "wait and see".

Friday, May 11, 2012

Marc Elliot's Book: "What Makes you Tic?"

I just finished Marc Elliot's book "What makes you tic?" and I absolutely loved it! I recommend that anyone with Tourette's read it, and I also recommend it in general for anyone out there no matter what their challenges may be. And I say this because everyone has challenges. You may have Tourette's, or OCD, you may have a child with these disorders, you may be deaf of hard of hearing, or you may think you are too skinny or too fat. Or in fact you may just be too judgmental or have a short temper. Whatever you challenges, big or small, noticeable or hidden, you need to read this book!  Marc's message truly has changed my life and the way I think about not only myself and my TS, but it also changed the way I think about every other person around me. "Live and Let Live" is a message everyone should hear and it is a message I have been trying to live by ever since I heard Marc's speech for the first time back in September. 

Link to purchase Marc's book:

10 minute documentary about Marc Elliot:

Telling the Nem's

Hey guys! So I mentioned before that next year in college I will be part of a special writing scholarship group called the Nems. For about a few weeks now I have been connected to the 9 other students who will be part of this group through a facebook group. It was so nice to meet them all (over faceook)! They all look so nice and of course they are great writers. I had been debating though how to deal with telling them about my TS. I am going to be in at least one class with all of them for 4 years so I figured they should really know that I have Tourette's. I have finally decided to tell my fellow Nems about my TS through the facebook group last night and I am so glad I did. This is the message I sent:

"Hey guys! Any Marc Elliott fans out there? Marc now speaks to high schools about tolerance and his Tourette's Syndrome. He is really awesome, but I may be a bit biased since I too have Tourette's :P. Also this can be my little "heads up" to you guys since we'll all be in a class together. Having Tourette's just means I have these things called tics, which are involuntary movements (like twitches) and sounds. My tics aren't very severe and I don’t swear as a tic, and in fact only 5% of people with Tourette's actually do swear. Truthfully most of the time my friends and I just have fun and joke around with it :) 

So, if you haven't heard Marc speak, you should check out this video! And if you have any questions about Tourette's, feel free to ask. I really don’t mind and I am pretty much an expert at answering questions about it at this point :P

I think I worded it pretty well and so far I have gotten two comments on the post. One guy in the group said he has always respected people with Tourette's and another girl thanked me for sharing.  So that's a pretty good response so far I think considering I only sent it last night! It's a big weight off my shoulders because now it's one less class I have to worry about telling. Now when I go into the class and meet the group of Nems in person I don't have to deal with as many of the initial stares or comments and I don't have to worry about explaining Tourette's too much for the most part. I may have to deal with more questions from them (which I really don't mind) but I don't have to deal with that awkward first stage of "when do I tell them?" "how do I tell them" etc. anymore! Of course I do have to deal with the rest of my classes (especially the smaller ones) and with my roommate, but at least I have one part taken care of now!     

Sunday, May 6, 2012

Guest Blog: Meet Laura, a Tourette advocate from the Netherlands

Hi everybody!

A while ago I promised that I would write a guest post for the A Little Bit Different blog. I haven't had the time so far, because I was very busy with school, but now i’ve got a week off, so let’s do this!

I want to talk to you about, what i’ve seen, is the difference between how people look at Tourette in the US and in the Netherlands.

One of the first things I saw in the way the US referees to Tourette, was a phrase about Tourette that had the word ‘cure’ in it. In the twelve years I have had Tourette, I’ve never ever heard the word ‘cure’ (or even the Dutch word for it, which is ‘genezen’), when it comes to Tourette’s syndrome. In the Netherlands we always talk about treatment (behandelen) or therapy (therapie), never cure! I’ve been thinking about why this is and I really think it’s because no one is even near to find a cure, so why think about it? I don’t think that far ahead. It’s even slightly frightening to me, to think about a cure. I think about the positive thinks Tourette has brought me and, yes, I sometimes bitch about the downsides. But since I was fourteen years old, I’ve been saying that, even if it was possible, I would never give up my Tourette. It’s a part of me, without it, I’m not me!

I think Tourette has brought me so much, like compassion, the ability to help others, and even a lot of friends! I mean, don’t get me wrong, I absolutely hate it sometimes, but then I get therapy and I try to work through it. And of course there are times when I keep hating it, but how does it help me to think about a cure? It’s not gonna happen very soon, and even if it does, I don’t know whether I like that or not. I trust the scientists that are working on therapies and such, so I am ready to hear about it, when it’s ready. I don’t think it’s gonna be in my lifetime, though.

I think that what we are doing in the Netherlands is really just try to look at this moment and try to stay positive about our lives right now.

Another thing is that I notice that people in the US focus so much on awareness, compared to people in the Netherlands. We try to focus on helping each other and sharing experiences (we call this ‘lotgenotencontact’, which roughly translates to talking with people with the same problems, there isn’t really a word for it in English, but I really like the Dutch word), rather than to make sure the rest of the country knows about Tourette. We try to create as much awareness as we can (through TV, newspapers and magazines), but we don’t focus on it. I think it’s mainly because we don’t have enough manpower and we think helping each other is more important right now. I think that both things are so important, and in a way, by creating awareness you help and support each other as well. I don’t really know what’s more important, if you only could pick one. 

I do think we do a really good job at the Dutch TSA, with the small number of people and money that we have. And I like the work of the American TSA as well, and of course all the smaller associations and individuals. I’ve been to New York once, for the 5th international scientific symposium, and I loved it. I really want to go again someday, and I hope I can meet all of you as well, because I think you do an amazing job by creating awareness and trying to help people with Tourette.

I hope you liked my blog post and you were able to see a little of how we look at Tourette, here in the Netherlands. I will be vloging from now on, ‘cause this took WAY to long ;-)


P.s. Make sure to follow me and Marie (from Belgium) at Twitter at @touretteprobs, for all those typical Tourette problems, that we all have!   

Thursday, May 3, 2012

Last Day of Senior Year

So today is the last day of my senior year. It's a bittersweet day because I am really sad to be leaving all my friends and teachers here in high school, but I am also excited to start the next chapter of my life. Most of the seniors are braking dress code, going around the school with food in their hands, and some are even riding on scooters! I even got my freshman time capsule sheet back! When I was a freshman I thought that as a senior I was going to be 5''4 (correct!), I was going to have hair a little longer than my shoulders (nope! my hair is about shoulder length!). that that maybe I would wear make up as a senior (nope!). I also thought my favorite class would be either English (yep!) or history (sort of!), and I thought I would apply to Brandeis (yep, but i'm not going there) or USC (nope! did not apply!). I thought Yale would not even be anywhere in my league and that I wouldn't be applying there and even though I didn't get in, I did apply because it kind of was semi in my league. I had no idea if I would have a relationship, but turns out senior year I did have one. I thought I would peruse writing as a profession and that is one of my options for sure!

It's pretty much like a huge party outside my advisory right now!!! Wow!!! My advisory said "its just chaos out there". Oh and I did in fact decide to tell the learning specialist about what happened with my teacher being really disrespectful about my accommodation of leaving the room and she was just outraged about how my teacher acted! She was so sweet to me and made me feel so much better about the situation. She was totally on my side and thought my teacher had been way out of line. My LC is truly the best! Thanks everyone who encouraged me to speak up about this even though I only have two days left of school! I feel so much better and my LC has assured me that she will take this through the proper channels so the school is aware or this teacher's actions

Other than that, there's not much more to tell. I start my job with the opera theater company on the 19th and I have orientation on the 12th. I also am meeting with someone from the disability resources department tomorrow to hear more about accommodations in college. I am requesting pretty much the same accommodations that I have not. Time and a half on in class assignments, tests, and exams, a private room in some cases for exam taking, and a calculator for any test or in class assignment that requires math calculation. I will let you guys know how the meeting goes tomorrow! Otherwise, I am signing off for now :)