At my high school all seniors are required to do a senior project before graduation. Students do various things outside of school for the senior project such as work in bakeries, shadow doctors, record their own music, or work in women's shelters. The options for what you can do as a senior project are pretty much endless. During the process of our senior project each student keeps their own senior project blog. Today was my first blog post! We don't actually do the senior project until the end of the year, but today we posted on the senior project blog about what he were planning on doing and how it was going to be a new experience for us. I figured that I would post what I'm posting on my senior project blog on my own personal blog as well! Here was what I wrote!
For my senior project, I want to help out in an English classroom at a special-ed school. The kids who come through the classroom are in middle school and at that grade level the school runs on a middle school model so students go to different classrooms for different subjects. The teacher in the classroom I would be helping out in teaches grammer, reading comprehension, and writing skills. English and Literature is one of my strengths and during the few days in the summer that I spent in the classroom I was really able to help the students. I have a personally connection with this project not only because of my strength in English but also because the students who have classes in the English classroom all mostly have High Functioning Autism or Aspergers Syndrome. Although I know a lot about English and Aspergers Syndrome, this project will still be a new experience for me because I will be working with the students on a more regular basis. I don’t really know a lot about the inner day to day workings of a special-ed classroom so being in the classroom more regularly will be a new experience for me. Also some of the kids have Behavioral Disorders or other disorders besides Aspergers, so working with those children will be a new experience for me as well.
So that was my first senior project blog post! I'm really excited for my senior project and I just wanted to share my enthusiasm! Also I didn't mention this in the blog for school but many of the kids at the school also have Tourettes which is obviously exciting for me. The kids who are at the special-ed school who have Tourettes usually aren't there because of their Tourettes but rather because they also have Aspergers or a behavioral disorder along with their TS. I already met two kids with TS in the classroom over the summer and I'm excited to work with them again! I will continue to post about the progress of my senior project and my senior project blog over the process of the school year and will certainly blog about it when I start the project at the end of the year! :)
Wednesday, November 30, 2011
Tuesday, November 29, 2011
Tourette's Awareness Video
This is an awareness video that I put together from various videos I found on youtube! I made the video for last year's Tourette's Syndrome awareness month and I thought I'd share it on my blog! Hope you all enjoy it! :) Feel free to comment!
Monday, November 28, 2011
A Fantastic Birthday Present- James Durbin Necklace to Benefit TSA
Today my mom and I ordered the James Durbin wing necklace to benefit TSA for my Birthday Present! It certainly was not cheep but I am so glad that the proceeds go to TSA. The necklace represents James Durbin's idea that anything is possible and that even with TS you can still fly! James has certainly proven this with how far he has come with his music. I could not think of a better present for my 18th birthday! I can't wait for the necklace to come in the mail and I will certainly wear it to school as soon as it comes. Lately James Durbin has been hugely inspirational to me as an incredibly successful and motivating person who has Tourettes. He has been spreading tons of awareness for TS since his time on American Idol. Way to go James Durbin!
The Necklace:
Here's the link for James Durbin's necklaces and earings that are on sale to benefit TSA: http://www.pennyroyalstudio.com/shop/signature-collection/james-durbin-to-benefit-tsa/
Here's his video about the necklaces and earings (Spreading awareness!!!):
http://vimeo.com/32524858
Here's one of James's most recent awareness videos:
The Necklace:
James Durbin:
Collector Card:
Here's the link for James Durbin's necklaces and earings that are on sale to benefit TSA: http://www.pennyroyalstudio.com/shop/signature-collection/james-durbin-to-benefit-tsa/
Here's his video about the necklaces and earings (Spreading awareness!!!):
http://vimeo.com/32524858
Here's one of James's most recent awareness videos:
And Here's a James Durbin American Idol Performance (My favorite!!)
A original James Durbin song:
Friday, November 25, 2011
Tourette's on a First Date! :)
Tonight was my first date with Speed Racer and I have to say it could not have gone better! Speed Racer and I met at Rowing, he doesn't go to my school but he's a senior too and he's on the boy's team. We started talking at rowing and then chatting over facebook and decided that we should hang out sometime. We have a lot in common and a lot of differences but I really think it works out. And of course he knows I have Tourettes since he knows me from rowing. When I first told him that I have TS he seemed curious and asked me questions about it. I really don't mind answering questions at all and really prefer that if people have questions that they just ask so that I can clear things up for them instead of them having to wonder. Speed Racer is not shy about asking me any question that comes to mind about my TS and I am so happy that he isn't shy about it. I suggest that if your going to start dating someone or if your on a first date and you have TS that is noticeable that you tell the person before hand about it! It's so much easier to get that out of the way even before the first date so that you and your date feel comfortable. Also it really puts you at ease knowing that your date is okay going out with someone who has TS and you don't have to keep wondering "what will he think when I tell him?"
He drove to my house to pick me up and then we went out to dinner. When he picked me up I really wasn't ticcing at all and didn't tic much even through dinner. At the start of dinner he said "You know what, I havn't heard even one bird noise! Are you sure you have Tourettes?". Haha, I laughed at this but of course I wasn't offended or anything. I quickly explained to him that people with Tourettes don't tic all the time. I explained that some days I'm twitching and making noises for a good portion of the day but other days I only tic a few times. "You'll see it if you spend enough time with me" I said. He seemed to understand and told me he got it. We had a really good dinner and talked about so many different things. We talked about everything from school stereotypes to stupid things our brothers and sisters do to get us angry. He was such a gentleman too, picking me up and then paying for dinner. We had planned to go see a play at my school afterwards but we were way early so we went out to ice cream to kill some time.
On the way to ice cream I did my bird chirping vocal tic which I knew was unavoidably going to happen sooner or later that night because we had been talking about it. As soon as I did it Speed Racer said "Oh was that it?". I laughed and said it was and then he laughed and said it did indeed sound like a bird. "Yes", I said "like a little parakeet". He laughed at this and then told me he thought it was cool that I did that. Later that night he even said to me "I know you may think it sucks or people may make fun of you for it, but I mean I think people should be jealous, it's kinda really cool". This really made my night. Heck it maybe even made my week. We both got chocolate ice cream with lots of toppings and at outside even though it was cold. After the ice cream we headed for school to see the play. He's a big talker so we talked the whole way to school on just about every topic imaginable.
I wasn't expecting to much from the play because it was about Einstein and Picaso meeting at a bar, but I was hoping that it would be good. I didn't want to bring my date to a bad play at my school! In my opinion the play was better than I thought it would be but still not the best production I had ever seen at my school. After it was over though Speed Racer told me that it was one of the best high school plays he'd seen! I was glad he liked it so much but wait i'm getting ahead of myself. Anyway during the play I was of course ticcing a lot. Thank goodness I was only doing motor tics though. At one point I was doing some head tics and Speed Racer looked over and saw that my head was down and thought I was choking or something, lol. He leaned over and asked me if I was okay and I reassured him that I was. He then realized it was a tic and said "oh, oh I understand. Sorry", and I reassured him that it was fine.
When we got back in the car he opened the door for me, very gentlemanly! We talked for a while about the play on the drive and then he brought up how he was sorry again about asking me if I was okay during the play and I explained to him that I don't only have vocal tics but that I also have motor tics which is why I move around so much and in weird ways. He told me he understood and was just glad that I wasn't choking or anything. He then asked me if other people ever comment or get worried about it if I'm sitting next to them. I told him that all my friends know that I have TS of course so they don't get worried or anything but sometimes if I'm sitting next to someone new in class they'll wonder what I'm doing and ask me about it. He then asked me what I do during the ACT in that big room with all those people and I told him about how I get my own private room and lots of awesome accommodations like double time, multiple test dates, and the use of a computer to write my essay. I told him people would probably get mad at me if I tested in the same room as everyone else because it gets 100% worse when I'm stressed about taking a test. He then started joking with me and said "It'd be like being in a bird cage!". I laughed along with him and I found it so comforting that he was already able to joke about it with me and make me feel at ease about it on only the first date. Some of my friends still aren't able to do this. He is certainly a special guy and I hope tonight is only the beginning of our relationship.
We arrived at my house and he told me he had a really fun night and thanked me for bringing him to the play. I told him I had a fun night too and we both agreed that we should do something like this again. He walked out around the car, gave me a hug, and told me to have a good night. Classy, cool, and casual. And on top of that a guy who really understands and is okay with Tourettes. What an awesome night! :)
He drove to my house to pick me up and then we went out to dinner. When he picked me up I really wasn't ticcing at all and didn't tic much even through dinner. At the start of dinner he said "You know what, I havn't heard even one bird noise! Are you sure you have Tourettes?". Haha, I laughed at this but of course I wasn't offended or anything. I quickly explained to him that people with Tourettes don't tic all the time. I explained that some days I'm twitching and making noises for a good portion of the day but other days I only tic a few times. "You'll see it if you spend enough time with me" I said. He seemed to understand and told me he got it. We had a really good dinner and talked about so many different things. We talked about everything from school stereotypes to stupid things our brothers and sisters do to get us angry. He was such a gentleman too, picking me up and then paying for dinner. We had planned to go see a play at my school afterwards but we were way early so we went out to ice cream to kill some time.
On the way to ice cream I did my bird chirping vocal tic which I knew was unavoidably going to happen sooner or later that night because we had been talking about it. As soon as I did it Speed Racer said "Oh was that it?". I laughed and said it was and then he laughed and said it did indeed sound like a bird. "Yes", I said "like a little parakeet". He laughed at this and then told me he thought it was cool that I did that. Later that night he even said to me "I know you may think it sucks or people may make fun of you for it, but I mean I think people should be jealous, it's kinda really cool". This really made my night. Heck it maybe even made my week. We both got chocolate ice cream with lots of toppings and at outside even though it was cold. After the ice cream we headed for school to see the play. He's a big talker so we talked the whole way to school on just about every topic imaginable.
I wasn't expecting to much from the play because it was about Einstein and Picaso meeting at a bar, but I was hoping that it would be good. I didn't want to bring my date to a bad play at my school! In my opinion the play was better than I thought it would be but still not the best production I had ever seen at my school. After it was over though Speed Racer told me that it was one of the best high school plays he'd seen! I was glad he liked it so much but wait i'm getting ahead of myself. Anyway during the play I was of course ticcing a lot. Thank goodness I was only doing motor tics though. At one point I was doing some head tics and Speed Racer looked over and saw that my head was down and thought I was choking or something, lol. He leaned over and asked me if I was okay and I reassured him that I was. He then realized it was a tic and said "oh, oh I understand. Sorry", and I reassured him that it was fine.
When we got back in the car he opened the door for me, very gentlemanly! We talked for a while about the play on the drive and then he brought up how he was sorry again about asking me if I was okay during the play and I explained to him that I don't only have vocal tics but that I also have motor tics which is why I move around so much and in weird ways. He told me he understood and was just glad that I wasn't choking or anything. He then asked me if other people ever comment or get worried about it if I'm sitting next to them. I told him that all my friends know that I have TS of course so they don't get worried or anything but sometimes if I'm sitting next to someone new in class they'll wonder what I'm doing and ask me about it. He then asked me what I do during the ACT in that big room with all those people and I told him about how I get my own private room and lots of awesome accommodations like double time, multiple test dates, and the use of a computer to write my essay. I told him people would probably get mad at me if I tested in the same room as everyone else because it gets 100% worse when I'm stressed about taking a test. He then started joking with me and said "It'd be like being in a bird cage!". I laughed along with him and I found it so comforting that he was already able to joke about it with me and make me feel at ease about it on only the first date. Some of my friends still aren't able to do this. He is certainly a special guy and I hope tonight is only the beginning of our relationship.
We arrived at my house and he told me he had a really fun night and thanked me for bringing him to the play. I told him I had a fun night too and we both agreed that we should do something like this again. He walked out around the car, gave me a hug, and told me to have a good night. Classy, cool, and casual. And on top of that a guy who really understands and is okay with Tourettes. What an awesome night! :)
Thursday, November 24, 2011
Thanksgiving with My Cousins: Being Relaxed about Tourette's
Happy Thanksgiving everyone! My Thanksgiving went pretty well. My dad's side of the family gets together every year for all the big holidays and especially for thanksgiving. Thanksgiving is one of our biggest family events because all the older cousins who are in college already come back into town and we pretty much stay at the party from 2:00 in the afternoon until 8:00 at night. Quite a long time to be eating and socializing with relatives. My cousin who also has Tourettes (Twitch) couldn't be there which I was kinda disappointed about, but my other two cousins who are girls my age were there.
By the way I would like to add a side note here. I don't think it's too far fetched that my cousin with TS (Twitch) may somehow one day come across this blog. She knows enough about my life to put the pieces together and figure out that this is my blog. Who knows, maybe I may even one day show it too her. For Twitch: The nickname, Twitch is meant to be endearing and cute. I have thought about someone calling me Twitch one day as a nickname and I have to say I think I would like it as long as I knew it was coming from someone who was my friend and who understood TS. So Twitch, I hope you like the blog and if you come across it, feel free to text or e-mail me if you want to let me know what you think! P.S. even though we're not super close right now, you have helped me accept myself and my diagnosis more than anyone else. You are a huge reason that I am able to be so open about TS with the people in my life and I really want to thank you for that.
Anyway back to the Thanksgiving story. The two cousins who are girls my age were at the party. One of them is just back from her first year in college (Lipstick), and the other is a senior in high school like me (Kitty). Kitty already knows about my TS because I told her this past summer but I wasn't sure that Lipstick knew. I'm not very close to her at all and never really had been. My tics weren't all that bad today (I'm well rested and relaxed thanks to the little break from school) and I was only doing some eye rolling and facial tics. We started talking a bit about Twitch's new dog and I was saying that Twitch had sent me pictures of him. Lipstick was surprised by this because she never knew that Twitch and I were close and asked me if I talked much with Twitch. I quickly responded with "Oh we started talking a lot this past summer because of the whole Tourettes thing". I surprised even myself with this response. I was able to be so relaxed about telling Lipstick (someone who I had been worried about knowing for so long)! I didn't know that I was going to be able to be so casual about telling her. Although pretty much all of my dad's side of the family knows I have TS, I guess Lipstick really didn't know. She asked me if I have Tourettes, and I answered in a very relaxed way that I do. She was of course curious and asked me what my tics were and when I was diagnosed and we talked about it for a little bit. Lipstick and Kitty were both very relaxed about it as well because I was so relaxed about it and it was so nice that something that had been a huge deal in my head turned out to be a very stress-less situation. I was conformable and okay with the fact that I did some tics in front of them which was so nice! Anyway, all in all it was a very good Thanksgiving. I hope everyone else had a good thanksgiving as well!
By the way I would like to add a side note here. I don't think it's too far fetched that my cousin with TS (Twitch) may somehow one day come across this blog. She knows enough about my life to put the pieces together and figure out that this is my blog. Who knows, maybe I may even one day show it too her. For Twitch: The nickname, Twitch is meant to be endearing and cute. I have thought about someone calling me Twitch one day as a nickname and I have to say I think I would like it as long as I knew it was coming from someone who was my friend and who understood TS. So Twitch, I hope you like the blog and if you come across it, feel free to text or e-mail me if you want to let me know what you think! P.S. even though we're not super close right now, you have helped me accept myself and my diagnosis more than anyone else. You are a huge reason that I am able to be so open about TS with the people in my life and I really want to thank you for that.
Anyway back to the Thanksgiving story. The two cousins who are girls my age were at the party. One of them is just back from her first year in college (Lipstick), and the other is a senior in high school like me (Kitty). Kitty already knows about my TS because I told her this past summer but I wasn't sure that Lipstick knew. I'm not very close to her at all and never really had been. My tics weren't all that bad today (I'm well rested and relaxed thanks to the little break from school) and I was only doing some eye rolling and facial tics. We started talking a bit about Twitch's new dog and I was saying that Twitch had sent me pictures of him. Lipstick was surprised by this because she never knew that Twitch and I were close and asked me if I talked much with Twitch. I quickly responded with "Oh we started talking a lot this past summer because of the whole Tourettes thing". I surprised even myself with this response. I was able to be so relaxed about telling Lipstick (someone who I had been worried about knowing for so long)! I didn't know that I was going to be able to be so casual about telling her. Although pretty much all of my dad's side of the family knows I have TS, I guess Lipstick really didn't know. She asked me if I have Tourettes, and I answered in a very relaxed way that I do. She was of course curious and asked me what my tics were and when I was diagnosed and we talked about it for a little bit. Lipstick and Kitty were both very relaxed about it as well because I was so relaxed about it and it was so nice that something that had been a huge deal in my head turned out to be a very stress-less situation. I was conformable and okay with the fact that I did some tics in front of them which was so nice! Anyway, all in all it was a very good Thanksgiving. I hope everyone else had a good thanksgiving as well!
Wednesday, November 23, 2011
Oops...Once Again I Forgot about Tourettes
Oops...Once Again I Forgot about Tourettes. Last night Debate Bro was using the bathroom and was taking way to long! I sooo wanted him to get out so I could get in the bathroom, so I was waiting outside the bathroom. I kept telling Debate Bro to hurry up but he got annoyed and told me if I kept standing there he would take even longer! So he closed the door and I decided since he couldn't see me I would just keep waiting outside of the bathroom and pretend that I left. Here's the part where I say oops forgot about Tourettes. I'm so used to some of my vocal tics that I don't even notice when i'm doing them. After about a minute of me standing outside the bathroom, Debate Bro shouted out "I can hear you out there!!!". Oops so much for making him think I had left. My vocal tics give me away every time, and I was still left waiting for quite some time to get in the bathroom.
Tuesday, November 22, 2011
Tourettes and Creativity: A Gift and a Curse
Just wanted to share the vast and quite prominent link between Tourettes and creativity. I think these following video's illustrate really well that people with Tourettes more often than not have an unusually keen creative side. I think this is true with me as well, as I have been writing poetry and short stories since I was very young. My poetry has been published many times and I have been to some very prominent Creative Writing programs in the US.
This one blows me away every time I watch it! It's a slam poetry piece done by a young man named Devin. He suggests that even though having TS is hard, it's what gives him his gift with poetry and with words. Sometimes I too think this is true. Sometimes people ask me where I get my gift for poetry and I would guess that it comes from having Tourettes. Too much dopamine isn't always a bad thing.
This one follows up the last one and explores more on the subject of how Tourettes and creativity are linked. Tourettes truly is a gift and a curse.
Tourettes Hero, aka Jess Thom has many complex vocal tics which she has decided to be very creative with! She creates video's and artwork that are direct artistic representations of her complex vocal tics!
Here is a profile of Jess
And here are some artistic videos and some art that have been created from her complex vocal tics:
A Tourettic rapper! This video talks about how music and creativity can actually help someone with Tourettes reduce their tics. Very interesting. If you have tourettes try to pick up an instrument or maybe try out singing, rapping, or dancing. Who knows you may discover a hidden talent and it might help your tics as well!
This one blows me away every time I watch it! It's a slam poetry piece done by a young man named Devin. He suggests that even though having TS is hard, it's what gives him his gift with poetry and with words. Sometimes I too think this is true. Sometimes people ask me where I get my gift for poetry and I would guess that it comes from having Tourettes. Too much dopamine isn't always a bad thing.
This one follows up the last one and explores more on the subject of how Tourettes and creativity are linked. Tourettes truly is a gift and a curse.
If you'd like to, you can share what your talent or what your child's talent in the realm of creativity. Comment below! Also if anyone has any more video's, articles, or other sources that touch on the subject of Tourettes and creativity, please feel free to share! How is your Tourettes both a gift and a curse?
Here are some other video's that show the creative side of Tourettes! You can see just how much information and video is out there which shows the connection between Tourettes and creativity. Hope you enjoy them!
Literally being creative with tics (this I think is awesome!):
This little boy is turning Tourettes into music litterally! (P.S. I know him :) )
Again, turning tics into creativity! (The Twitch Trials! Music, dance, and art made directly from tics)
Tourettes Hero, aka Jess Thom has many complex vocal tics which she has decided to be very creative with! She creates video's and artwork that are direct artistic representations of her complex vocal tics!
Here is a profile of Jess
And here are some artistic videos and some art that have been created from her complex vocal tics:
People with TS sure like the musical side of creativity:
Go James Durbin!
A Tourettic rapper! This video talks about how music and creativity can actually help someone with Tourettes reduce their tics. Very interesting. If you have tourettes try to pick up an instrument or maybe try out singing, rapping, or dancing. Who knows you may discover a hidden talent and it might help your tics as well!
A Self Introduction from a guy who has Tourettes - Tourettes and Creativity:
Overcoming Tourette Syndrome- Frank Martin Verdejo-Chica:
Tourette's, art, and other creative modes of expression:
Twitch and Shout Documentary (an older documentary that features a photographer, a singer, and an artist who all have Tourettes)
Part 1:
Part 2:
Sunday, November 20, 2011
A weird mental tic....
One of my tics is squinting and closing my eyes really really tight. Yesterday, as I did this the image of a dead body free falling in mid air popped into my mind. Gotta say, this was a weird one.....
Friday, November 18, 2011
How my Tics have Progressed Through the Years
So I saw a youtube video just a few moments ago which I really liked the idea for and I thought I would do the same and write my post today on how my tics have progressed through the years . Maybe tomorrow I'll do one on how my OCD and anxiety has progressed through the years. Anyway I'll do it by year, although it probably won't be 100 percent accurate for the most part since It's hard for me to remember exactly what years these kinds of things happened.
Pre-School
The first sign of Tourettes showed up when I was in pre-school beleive it or not! My first tic like behavior showed up when I was about thee years old. I started to pick my lips. Not just a little though, I picked them until they bled and scabbed up. I've been told by certain professionals that lip picking does classify as a tic, but others say that it's part of an OCD spectrum disorder that often co-occurs with Tourettes called dermotillaminia (compulsive skin picking). I have picked my lips all my life, and still do today and to me it feels exactly like the way my other tics feel. So if you ask me, I'd say its a tic. Either way, it was one of the first signs of Tourettes. Another thing I started doing in pre-school was sucking on my hair. I don't know if this is a tic or more of a compulsive type behavior but I probably sucked on my hair pretty constantly for at least a year or two. I also had small facial tics, would roll on the ground in a strange way, and would sometimes flap my arms.
1st grade-3rd grade
Between 1st and 3rd grade there were tqo tics that I had that I was aware of. The only reason I was aware of them though was because other people commented on them and drew my attention to it. If my parents and and grandparents hadn't mentioned these things to me, I probably would have never even realized that I was doing them at this age. Sniffling and skipping were my two main tics at this age that I was aware of. I probably did have others, but I just wasn't aware of them. I sniffled pretty much constantly and it drove my parents and grandparents crazy! They would always tell me to blow my nose or use nose spray and I would always refuse and say it didn't help! In my opinion the skipping tic is a pretty cute one :) but my mom was always on me about it and told me that I needed to stop skipping because I was "too old" and "looked silly". I didn't stop skipping or sniffling though no matter how many times they asked me to stop; I couldn't control it. I still have sniffling as a pretty frequent tic today although the skipping seemed to subside for the most part after elementary school.
4th grade-6th grade
Starting in 4th grade my tics seemed to get more complex. I had a pretty decently long list of tics through these years but I didn't know what they were. I knew I did weird things at this point, but I didn't even know Tourettes existed. I just thought I was really weird. I still had the sniffling tic pretty frequently which in 4th grade seemed to be combined with a slurping sound that I made with my mouth. Sometimes I would just do the slurping sound on its own though. Also I started a squeaking sound which I usually only did while just waking up, trying to fall asleep, or sometimes while watching TV. My friends would say "What are you doing?" and my response at the time was "I'm stretching my voice". I think this is a pretty cute response and explanation for a tic for someone who had no idea what a tic even was at the time. I also started having more motor tics at this age. I had a motor tic where I had to hold me breath, tighten all my muscles in my stomach and chest. It essentially just look like I would freeze for a few seconds. I also had a tic where I would twitch my eye brows up and down and people would regularly say to me "you're really expressive with your eye brows" when I was doing that tic a lot. This is also when copropraxia showed up. Copropraxia is a type of motor tic that consists of inappropriate gestures or inappropriate touching. I started grabbing at my crotch area, which caused me a lot of trouble in terms of bullying. 5th and 6th grade were the only times in my life that i've ever been bullied for having Tourettes. There were two boys in my class who spread rumors around that I grew up in a trailer park and that my parents never taught me that grabbing at my crotch area was inappropriate. They would give me nasty looks, and spread rumors, and tell me that I was gross. I wanted them to stop saying these things so much, and I wanted to be able to stop myself from doing these things that made them make fun of me, but somehow I knew that I wasn't going to be able to make myself stop. I couldn't help it, and a part of me seemed to know this. I tried to ignore them the best I could, but what they said really hurt me. I just couldn't stop myself from ticcing no matter how much I tried to control it. Looking back I realize that my tics got worse at this time because I was being bullied. The extra stress and attention to the tics only made them worse. During this time, my lip picking/biting tic was at its worst. I would pick and bite at my lips so much that my they would start bleeding in the middle of class and I would have to leave class and hold paper towels to my lips for 10- 15 minutes just to get the bleeding to subside. I had to leave class a lot because of this.
Now at this point you may be wondering, how the heck was I not diagnosed with Tourette's when all this was going on? And I myself have been trying to figure this out. I recently asked my mom this exact question. I asked her why she never took me to a doctor and why she kept insisting that it wasn't a problem when I was younger. She told me that she had learned her main parenting strategies from her own parents and that at the time she was told by the older generation that if there was a problem it was best to ignore it and not draw much attention to it. My mom had no idea that Tourette's was anything other than yelling out swear words (which I certainly have never done). In her mind I had "behavior problems" and she was told if she drew attention to a "behavior problem" like this it would only get worse. In her mind, if she ignored it for long enough, the problem would simply go away.
7th grade and 8th grade
7th and 8th grade were pretty uneventful in terms of tics. I moved to a middle school and since I was rid of the boys who had bullied me, my tics decreased. My crotch grabbing tic went away for the most part (thank goodness!) and I was just left with my other tics which were fairly minor and not very noticeable to other people. I made some absolutely fantastic friends in 7th and 8th grade, some of whom I havn't mentioned on my blog, but you now know two of my best friends that I made in 7th and 8th grade as Tie Dye Socks and Steam Punk. I sniffled, couched, clenched my jaws, twitched my eye brows, froze up from tightening my muscles for a few seconds, and twirled my hair, but they weren't very frequent and my friends really didn't think anything of it.
9th and 10th grade
I kept most of my old tics for these grades, but lots of new ones seemed to be coming up probably because this is the age when tics seem to get worse because of puberty. List of tics in these years: Sniffling, clenching my jaws, twitching my eye brows, freezing up from tightening my muscles for a few seconds, twirling my hair, rotating my shoulders in and out of their sockets, coughing, clearing my throat, tapping my face or my collar bone, stomping my feet, rubbing my face, flapping my hands (only did this a few times), and air swallowing. The air swallowing got really really bad at the end of 10th grade and during the summer of 10th grade. Sometimes I wouldn't be able to go more than 10 seconds without swallowing and it would go on for hours. It would give me horrible stomach aches and I was really fed up with it. I put up with it all summer long and it got really really bad over the summer. I finally insisted that my mom bring me to the doctor during the summer time but when I went to my pediatrician and explained it, but he looked at me like I was crazy. He had never heard of someone "not being able to stop swallowing" and told me it was all in my head. That was just great.
11th grade
Well 11th grade was the year of my official Tourette's diagnosis. Finally after all those years an explanation! My tics got really really bad in the fall and winter of 11th grade. It seemed like I would get a new tic every single day. I started with the loud and most obvious squeaking tics and "pokemon" sounding tics. I started jerking my arms and legs and head and rolling my eyes. I had about a million other ones, half of which I cant even remember at the moment and I was finally diagnosed! :)
12 grade (Senior year!)
Well if you read my blog you know my day to day life living with Tourettes. So I guess I'll just do a tic list. It will be very long and I probably will forget a few but here I go.
Vocal: Sniffling, clearing my throat, coughing, a clinking sound in my throat, air swallowing, bird chirping noises, "Pokemon" noises (pretty loud), squeaking and squealing noises, grunting noises, forceful "heh" noise.
Motor: Eye rolling, facial tics, blinking, squinting, arm and leg jerking, any type of arm movement, hand movements, head jerking, head shaking, tightening any muscle group, banging my hands or arms on things, jumping, shaking my legs, pulling my arms into my chest, hitting my chest, hitting myself in the stomach, full body jerking, full body muscle tightening, and probably a bunch more that I'm forgetting.
Pre-School
The first sign of Tourettes showed up when I was in pre-school beleive it or not! My first tic like behavior showed up when I was about thee years old. I started to pick my lips. Not just a little though, I picked them until they bled and scabbed up. I've been told by certain professionals that lip picking does classify as a tic, but others say that it's part of an OCD spectrum disorder that often co-occurs with Tourettes called dermotillaminia (compulsive skin picking). I have picked my lips all my life, and still do today and to me it feels exactly like the way my other tics feel. So if you ask me, I'd say its a tic. Either way, it was one of the first signs of Tourettes. Another thing I started doing in pre-school was sucking on my hair. I don't know if this is a tic or more of a compulsive type behavior but I probably sucked on my hair pretty constantly for at least a year or two. I also had small facial tics, would roll on the ground in a strange way, and would sometimes flap my arms.
1st grade-3rd grade
Between 1st and 3rd grade there were tqo tics that I had that I was aware of. The only reason I was aware of them though was because other people commented on them and drew my attention to it. If my parents and and grandparents hadn't mentioned these things to me, I probably would have never even realized that I was doing them at this age. Sniffling and skipping were my two main tics at this age that I was aware of. I probably did have others, but I just wasn't aware of them. I sniffled pretty much constantly and it drove my parents and grandparents crazy! They would always tell me to blow my nose or use nose spray and I would always refuse and say it didn't help! In my opinion the skipping tic is a pretty cute one :) but my mom was always on me about it and told me that I needed to stop skipping because I was "too old" and "looked silly". I didn't stop skipping or sniffling though no matter how many times they asked me to stop; I couldn't control it. I still have sniffling as a pretty frequent tic today although the skipping seemed to subside for the most part after elementary school.
4th grade-6th grade
Starting in 4th grade my tics seemed to get more complex. I had a pretty decently long list of tics through these years but I didn't know what they were. I knew I did weird things at this point, but I didn't even know Tourettes existed. I just thought I was really weird. I still had the sniffling tic pretty frequently which in 4th grade seemed to be combined with a slurping sound that I made with my mouth. Sometimes I would just do the slurping sound on its own though. Also I started a squeaking sound which I usually only did while just waking up, trying to fall asleep, or sometimes while watching TV. My friends would say "What are you doing?" and my response at the time was "I'm stretching my voice". I think this is a pretty cute response and explanation for a tic for someone who had no idea what a tic even was at the time. I also started having more motor tics at this age. I had a motor tic where I had to hold me breath, tighten all my muscles in my stomach and chest. It essentially just look like I would freeze for a few seconds. I also had a tic where I would twitch my eye brows up and down and people would regularly say to me "you're really expressive with your eye brows" when I was doing that tic a lot. This is also when copropraxia showed up. Copropraxia is a type of motor tic that consists of inappropriate gestures or inappropriate touching. I started grabbing at my crotch area, which caused me a lot of trouble in terms of bullying. 5th and 6th grade were the only times in my life that i've ever been bullied for having Tourettes. There were two boys in my class who spread rumors around that I grew up in a trailer park and that my parents never taught me that grabbing at my crotch area was inappropriate. They would give me nasty looks, and spread rumors, and tell me that I was gross. I wanted them to stop saying these things so much, and I wanted to be able to stop myself from doing these things that made them make fun of me, but somehow I knew that I wasn't going to be able to make myself stop. I couldn't help it, and a part of me seemed to know this. I tried to ignore them the best I could, but what they said really hurt me. I just couldn't stop myself from ticcing no matter how much I tried to control it. Looking back I realize that my tics got worse at this time because I was being bullied. The extra stress and attention to the tics only made them worse. During this time, my lip picking/biting tic was at its worst. I would pick and bite at my lips so much that my they would start bleeding in the middle of class and I would have to leave class and hold paper towels to my lips for 10- 15 minutes just to get the bleeding to subside. I had to leave class a lot because of this.
Now at this point you may be wondering, how the heck was I not diagnosed with Tourette's when all this was going on? And I myself have been trying to figure this out. I recently asked my mom this exact question. I asked her why she never took me to a doctor and why she kept insisting that it wasn't a problem when I was younger. She told me that she had learned her main parenting strategies from her own parents and that at the time she was told by the older generation that if there was a problem it was best to ignore it and not draw much attention to it. My mom had no idea that Tourette's was anything other than yelling out swear words (which I certainly have never done). In her mind I had "behavior problems" and she was told if she drew attention to a "behavior problem" like this it would only get worse. In her mind, if she ignored it for long enough, the problem would simply go away.
7th grade and 8th grade
7th and 8th grade were pretty uneventful in terms of tics. I moved to a middle school and since I was rid of the boys who had bullied me, my tics decreased. My crotch grabbing tic went away for the most part (thank goodness!) and I was just left with my other tics which were fairly minor and not very noticeable to other people. I made some absolutely fantastic friends in 7th and 8th grade, some of whom I havn't mentioned on my blog, but you now know two of my best friends that I made in 7th and 8th grade as Tie Dye Socks and Steam Punk. I sniffled, couched, clenched my jaws, twitched my eye brows, froze up from tightening my muscles for a few seconds, and twirled my hair, but they weren't very frequent and my friends really didn't think anything of it.
9th and 10th grade
I kept most of my old tics for these grades, but lots of new ones seemed to be coming up probably because this is the age when tics seem to get worse because of puberty. List of tics in these years: Sniffling, clenching my jaws, twitching my eye brows, freezing up from tightening my muscles for a few seconds, twirling my hair, rotating my shoulders in and out of their sockets, coughing, clearing my throat, tapping my face or my collar bone, stomping my feet, rubbing my face, flapping my hands (only did this a few times), and air swallowing. The air swallowing got really really bad at the end of 10th grade and during the summer of 10th grade. Sometimes I wouldn't be able to go more than 10 seconds without swallowing and it would go on for hours. It would give me horrible stomach aches and I was really fed up with it. I put up with it all summer long and it got really really bad over the summer. I finally insisted that my mom bring me to the doctor during the summer time but when I went to my pediatrician and explained it, but he looked at me like I was crazy. He had never heard of someone "not being able to stop swallowing" and told me it was all in my head. That was just great.
11th grade
Well 11th grade was the year of my official Tourette's diagnosis. Finally after all those years an explanation! My tics got really really bad in the fall and winter of 11th grade. It seemed like I would get a new tic every single day. I started with the loud and most obvious squeaking tics and "pokemon" sounding tics. I started jerking my arms and legs and head and rolling my eyes. I had about a million other ones, half of which I cant even remember at the moment and I was finally diagnosed! :)
12 grade (Senior year!)
Well if you read my blog you know my day to day life living with Tourettes. So I guess I'll just do a tic list. It will be very long and I probably will forget a few but here I go.
Vocal: Sniffling, clearing my throat, coughing, a clinking sound in my throat, air swallowing, bird chirping noises, "Pokemon" noises (pretty loud), squeaking and squealing noises, grunting noises, forceful "heh" noise.
Motor: Eye rolling, facial tics, blinking, squinting, arm and leg jerking, any type of arm movement, hand movements, head jerking, head shaking, tightening any muscle group, banging my hands or arms on things, jumping, shaking my legs, pulling my arms into my chest, hitting my chest, hitting myself in the stomach, full body jerking, full body muscle tightening, and probably a bunch more that I'm forgetting.
Thursday, November 17, 2011
I Sometimes Forget I have Tourette's...Oops My Bad
So I don't usually actually forget that I have Tourette's but I do sometimes forget to think of myself as a person who may have some limitations because of Tourette's. I have always been told that if I set my mind to anything, I can do it. And most of the time this is true. If I want to do something, I do it regardless of the fact that I have TS. It doesn't even pop into my head as something that could stop me. However there are some things that I just can't do because of Tourette's. For example, I can't be a rower. I'm a coxswain and I can do that very well, but my tics get in the way a whole lot if I were to actually row. I've rowed a few times before and there are a few things that would make it very hard for me to row. #1 is that my feet are strapped down in these shoes and when any part of my body is confined or strapped down, tourette's throws a tantrum. Its similar to how men with TS start ticcing like crazy when they're in a suit or have a tight collar. When my feet are strapped down in the boat my legs just jolt up over and over again until my feet come out of the foot straps which would make it very hard for me to actually row on a regular basis. When I get out of the boat (i've only tried out rowing a few times) I shake all over, hop up and down, and basically spaz out completely for at least a solid hour. Tourette's gives me limitations. However, I forget these limitations on a regular basis because they don't come up in my day to day life.
The other day however, was a time when the limitations of Tourettes came up. Just another time that I realized that Tourettes can make certain things very difficult for me. This was my first day of a new history class and my teacher, Mrs. Baltimore, asked if we could have two time keepers to make sure she didn't run over time. One girl volunteered and then no one else wanted to. After a little bit, I decided I would raise my hand and volunteer since Mrs. Baltimore is my college counsler and since I wanted to do something nice for her. Here's the part where I say, oops I forgot about Tourettes. The signal for class being over was to put your hands together like a T like the time out referee's do but as soon as she told me this, Tourettes took action. The T signal was meant only for the end of class and if I did it I would draw her attention to me, which made it a prime tic candidate. Tics are all about the forbidden, and doing what your not supposed to do. If there's a gesture that I'm not supposed to do at a certain time, I do it. It's a part of copropraxia. So it was unavoidable, I began making the T signal forcefully with my hands which included be jamming my fingers into my palm (which hurts)! I realized I should not have volunteered for this position number one because I could now not stop myself from making the "class is over" sign when class was not over and number two because I move around so much because of motor tics that no one would notice if I was trying to get someone's attention with my hand gestures, they would probably just think I was ticcing. Hopefully the other girl will take over the job for the most part. Oh well, I tried. Just another day in the life of someone with Tourettes.
The other day however, was a time when the limitations of Tourettes came up. Just another time that I realized that Tourettes can make certain things very difficult for me. This was my first day of a new history class and my teacher, Mrs. Baltimore, asked if we could have two time keepers to make sure she didn't run over time. One girl volunteered and then no one else wanted to. After a little bit, I decided I would raise my hand and volunteer since Mrs. Baltimore is my college counsler and since I wanted to do something nice for her. Here's the part where I say, oops I forgot about Tourettes. The signal for class being over was to put your hands together like a T like the time out referee's do but as soon as she told me this, Tourettes took action. The T signal was meant only for the end of class and if I did it I would draw her attention to me, which made it a prime tic candidate. Tics are all about the forbidden, and doing what your not supposed to do. If there's a gesture that I'm not supposed to do at a certain time, I do it. It's a part of copropraxia. So it was unavoidable, I began making the T signal forcefully with my hands which included be jamming my fingers into my palm (which hurts)! I realized I should not have volunteered for this position number one because I could now not stop myself from making the "class is over" sign when class was not over and number two because I move around so much because of motor tics that no one would notice if I was trying to get someone's attention with my hand gestures, they would probably just think I was ticcing. Hopefully the other girl will take over the job for the most part. Oh well, I tried. Just another day in the life of someone with Tourettes.
Wednesday, November 16, 2011
Is there a Spot for Tourettes on College Applications?
One of the awesome things about this type of blog is that you can see exactly how people get to your blog! If they use google and just happen to find my blog, I can see exactly what the person typed in to get to my blog.
Recently I saw that someone found my blog by typing in the question that is the title of this post: "Is there as spot for tourettes on college applications?". So I thought I would do a post answering this exact question.
The answer is YES! There are so many opportunities for you to indicate that you have Tourette's on your college application. No, there isn't a spot that says "If you have Tourettes check this box" or "List any diagnoses that you have here", but that doesn't mean that there isn't a spot for it if you want to indicate to colleges that you have TS before they accept you.
For m, this was something that I thought was really important. I wanted my colleges to know, before they accepted me, that I have Tourette's Syndrome. I didn't want it to be a surprise to them, and I certainly didn't want to get into a college and then just keep on thinking "well would they have accepted me if they knew about my TS before hand?".
Colleges want and need diversity and students with disabilities or differences. If anything, disclosing that you have Tourette's or another disorder will help you in terms of your changes for acceptance into a college. This is what I have been told by my parents and college advisers. For me, it was easy to work my TS into my college application because I wrote my entire college essay for the common app on my experience with TS. This is a really neat place to for Tourettes because it really makes for a unique and original college essay!
College admissions officers really do get bored of "My trip to community service trip to Peru caused me to grow as a person". If you don't want to write your entire essay about TS, you can work it into the essay in your own way without making TS the focus of the essay.
Another place were I indicated that I have TS is on my list of activities. Since I'm involved with my state's TSA chapter it was easy to put this under the list of activities section as community service. Some of the college's I applied to though didn't want the common app or the common app essay, but there was still a spot on their separate applications for me to write about TS. There's usually supplemental questions for each colleges and if TS fits you can put it right in there! Also sometimes there's a "is there anything else you'd like to say?" section where you can talk about TS and when applying for scholarships there's lots of opportunities to work TS into supplemental writing and essays.
Recently I saw that someone found my blog by typing in the question that is the title of this post: "Is there as spot for tourettes on college applications?". So I thought I would do a post answering this exact question.
The answer is YES! There are so many opportunities for you to indicate that you have Tourette's on your college application. No, there isn't a spot that says "If you have Tourettes check this box" or "List any diagnoses that you have here", but that doesn't mean that there isn't a spot for it if you want to indicate to colleges that you have TS before they accept you.
For m, this was something that I thought was really important. I wanted my colleges to know, before they accepted me, that I have Tourette's Syndrome. I didn't want it to be a surprise to them, and I certainly didn't want to get into a college and then just keep on thinking "well would they have accepted me if they knew about my TS before hand?".
Colleges want and need diversity and students with disabilities or differences. If anything, disclosing that you have Tourette's or another disorder will help you in terms of your changes for acceptance into a college. This is what I have been told by my parents and college advisers. For me, it was easy to work my TS into my college application because I wrote my entire college essay for the common app on my experience with TS. This is a really neat place to for Tourettes because it really makes for a unique and original college essay!
College admissions officers really do get bored of "My trip to community service trip to Peru caused me to grow as a person". If you don't want to write your entire essay about TS, you can work it into the essay in your own way without making TS the focus of the essay.
Another place were I indicated that I have TS is on my list of activities. Since I'm involved with my state's TSA chapter it was easy to put this under the list of activities section as community service. Some of the college's I applied to though didn't want the common app or the common app essay, but there was still a spot on their separate applications for me to write about TS. There's usually supplemental questions for each colleges and if TS fits you can put it right in there! Also sometimes there's a "is there anything else you'd like to say?" section where you can talk about TS and when applying for scholarships there's lots of opportunities to work TS into supplemental writing and essays.
Tuesday, November 15, 2011
New Trimester!
Today was the start of the new trimester! Thanks to my e-mails letting my 3 new teachers know about my TS, I received no awkward stares from the new teachers, thank goodness. Overall it was a pretty good day. My tics weren't all that bad, and my new teachers and classes seem to be okay with my ticcing. Although today I had very few vocal tics and mainly only motor tics. Other than that I am liking my new teachers so far and am actually excited for two of my new classes, Satire and European Holocaust. They seem to be sparking my interest so far! :)
Monday, November 14, 2011
Telling my New Teachers about Tourette's
I am officially done with trimester one! I'm glad to be done with all my final assessments but at the same time I'm sad to say goodbye to Mr. Texas and Mr. Carolina as teachers. This trimester I'll have three new teachers, Mr. Colorado, Mr. New Jersey, and Mrs. Baltimore. Mr. Colorado and Mr. New Jersey are both brand new teachers to the school this year and I have never had them before. So to avoid any confusion on the first day, I decided to e-mail them about my Tourette's to make sure there was no confusion on the first day. My school plan does say that I have Tourette's in it, but I find that teachers don't get to reading all the action plans before day 1 and I feel much more conformable knowing they know about my TS on day one. I e-mailed Mr. Colorado first who is my new English teacher.
Here is the e-mail I sent:
Hi Mr. Colorado! I've been e-mailing my new teachers for T2 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 school plan, but I have found that teachers are not always able to get to all the school 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 [ http://www.tsa-usa.org/ ]http://www.tsa-usa.org/ for more information about Tourette's.
Here is the e-mail I sent:
Hi Mr. Colorado! I've been e-mailing my new teachers for T2 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 school plan, but I have found that teachers are not always able to get to all the school 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 [ http://www.tsa-usa.org/ ]http://www.tsa-usa.org/ for more information about Tourette's.
I think this is a great way to let your teachers know about TS in a personal way and works for most high school or college students. Teachers are usually VERY understanding if you contact them by e-mail personally. This is the e-mail that Mr. Colorado sent back:
Ruthie,
Thanks for the update. Re: Tourettes, don't worry--I've worked with many students who have it, and I am more than ready to be your advocate and friend on that front. You have my total support.
Mr. C
See! Teachers are very very supportive and understanding when you contact them in advance. This leaves no space for confusion or assumption and skips the whole "awkward and confused stares from the teacher" phase of the first few days when they have yet to read the school plan because they're too busy!
I haven't heard back from Mr. New Jersey yet, but I probably will soon! And I didn't need to e-mail Mrs. Baltimore because she's my college counselor and already knows about my TS. All in all I feel very good about going into the new trimester knowing all my teachers are aware and supportive of my situation. I am still a bit nervous about my new classes because of the new students in them that I haven't had classes with before. The good thing is that I have three classes with Steam Punk, which always helps me feel more conformable in class. Two of the classes I have with her are my new classes which will help so much! Having a friend who is so used to my tics in the classroom always helps me feel more at ease in new situations. I'll have to give an update about how my first day went tomorrow. Wish me luck! :)
Saturday, November 12, 2011
Beating OCD on the Pizza Front
Today I ate domino's pizza for the first time in over a year, and it was GREAT! It tasted like the best pizza i've eaten in my life. I was actually kinda proud of myself. I know, you must be thinking "well what's the big deal? It's just pizza!". Well for me eating pizza is not so simple. My OCD has made it pretty much impossible for me to eat any food with my hands (due to my main contamination obsession) for about over a year now and I have finally come to a point in my treatment with Ginger Therapist where eating food with my hands is possible. I of course have to wash my hands first and I can't touch anything besides the pizza before it goes in my mouth but still it's certainly a step forward. It took a lot of work to be able to beat OCD on this one small front but none the less I just beat OCD. I won a battle. I did not win the war, just a small battle and OCD wins just about every other time with just about every other thing, but I have been able to push it back for this one issue. I'm excited because now I will be able to eat pizza or any other finger food when I go to college as long as I wash my hands first. I certainly have a lot of other things to work on in terms of OCD and although i'm probably never going to get rid of the fact that I live with OCD, I will be able to manage it and to some extent control how much it effects my life. There are some aspects of my obsessions and compulsions that I feel I couldn't even begin to even think about working on, but at least today I was able to win in the battle against OCD even if only in a small way.
Friday, November 11, 2011
What if Everything was Voluntary?
Today in the hallway I heard a snip-it of a conversation.
Boy 1: That was voluntary
Boy 2: Well it's always voluntary
What would it be like to be able to say this? What a different world it would be if everything was voluntary!
Boy 1: That was voluntary
Boy 2: Well it's always voluntary
What would it be like to be able to say this? What a different world it would be if everything was voluntary!
Thursday, November 10, 2011
The Nature of My Peers and Teachers to be Understanding about Tourettes
A blood test is a great way to start the day, don't you think? That's how I started off my day today. We're trying to get to the bottom of what is making me so darn tired during the day so I got a blood test early this morning to check for over-medication, anemia, or low blood sugar. I've gotten my blood drawn quite a few times before and I'd have to say that they aren't all that bad. They're better than a shot! Earlier this year I donated some of my blood to a Tourette's Syndrome genetics study, which was fun! It was good to feel like I was possibly helping to find a cure or at least to locate the gene of TS. Anyway my blood test wasn't all that bad this morning, and hopefully when the results get back i'll have some explanation for my extreme fatigue other than the fact that I just exhaust myself from ticcing. I missed first period, but that was fine. I only missed photography and I had already finished my photo assignment for the week anyway.
Later in the day I stopped by the learning specialists office to see how the meeting with Mr.Texas went. Mr. Texas basically explained to both of them that he was aware of my situation and wasn't really penalizing me for class participation. The C+ was factored into the grade, but untimely he made it so that the grade didn't effect my overall grade all that much. The learning specialist told me that Mr. Texas really adores me and was on my side completely and understood. He wished I would participate in class more, but only because he thought the entire class could benefit from what I had to say. He also apparently said that I was an incredibly talented writer. I was very glad to hear all this and was glad to hear that he wasn't disregarding my anxiety disorder when factoring my grade. The learning specialist updated my action plan so that it specifically mentioned in more detail my difficulty with participating in class due to my anxiety disorder so as to avoid any kind of confusion in the future. I have a two new teachers next trimester, which starts Tuesday, so the learning specialist said we may have to educate them.
I felt very lucky today to go to the school that I do. The teachers all have my back and are there to help and support me even and especially if I may not be a typical student. I felt doubly lucky when I had an encounter with a guy in my french class today. We had to switch seats for an activity and I found myself sitting behind someone new. Steam Punk was still sitting next to me though, which always helps. I was making my Pokemon noises and the guy sitting in front of me turned around and said "are you okay, you're making a lot of noise" I told him I was fine and that I just have Tourette's. At first he didn't respond at all, and thought about it for a minute. Then just when I thought the encounter was over he turned back around to me and said "I didn't know that. I feel like a real jerk now. I've asked you a lot of questions about it". This was not the first time this particular guy has commented on my tics, but I really didn't think I was going to get this kind of reaction out of him. I thought he was just not going to care truthfully, but the way he responded and the tone in which he said it really let me know that he did feel bad. I didn't want him to feel bad. People ask me questions all the time before they know I have Tourettes, so I told him really not to worry about it at all and that seemed to be enough. Every single person my age (age 15 and up) that I have told about my TS has been incredibly understanding and seemed to really and honestly feel bad if they had asked me questions about it before. This makes me wonder. Why are people so understanding with me? Why do I never get that off beat comment that is slightly rude and inconsiderate? Is it because of where I live? Or is it because of the people in my school? Or is it because I handle telling others particularly well? Or is it because Marc Elliot came to talk to everyone at my school and they really get it? I wish I knew the answer, but something tells me it's not one of these things. I think it's a combination of them all right now. Anyway, I'm just so glad that others are so accepting and understanding. It makes all the difference.
Later in the day I stopped by the learning specialists office to see how the meeting with Mr.Texas went. Mr. Texas basically explained to both of them that he was aware of my situation and wasn't really penalizing me for class participation. The C+ was factored into the grade, but untimely he made it so that the grade didn't effect my overall grade all that much. The learning specialist told me that Mr. Texas really adores me and was on my side completely and understood. He wished I would participate in class more, but only because he thought the entire class could benefit from what I had to say. He also apparently said that I was an incredibly talented writer. I was very glad to hear all this and was glad to hear that he wasn't disregarding my anxiety disorder when factoring my grade. The learning specialist updated my action plan so that it specifically mentioned in more detail my difficulty with participating in class due to my anxiety disorder so as to avoid any kind of confusion in the future. I have a two new teachers next trimester, which starts Tuesday, so the learning specialist said we may have to educate them.
I felt very lucky today to go to the school that I do. The teachers all have my back and are there to help and support me even and especially if I may not be a typical student. I felt doubly lucky when I had an encounter with a guy in my french class today. We had to switch seats for an activity and I found myself sitting behind someone new. Steam Punk was still sitting next to me though, which always helps. I was making my Pokemon noises and the guy sitting in front of me turned around and said "are you okay, you're making a lot of noise" I told him I was fine and that I just have Tourette's. At first he didn't respond at all, and thought about it for a minute. Then just when I thought the encounter was over he turned back around to me and said "I didn't know that. I feel like a real jerk now. I've asked you a lot of questions about it". This was not the first time this particular guy has commented on my tics, but I really didn't think I was going to get this kind of reaction out of him. I thought he was just not going to care truthfully, but the way he responded and the tone in which he said it really let me know that he did feel bad. I didn't want him to feel bad. People ask me questions all the time before they know I have Tourettes, so I told him really not to worry about it at all and that seemed to be enough. Every single person my age (age 15 and up) that I have told about my TS has been incredibly understanding and seemed to really and honestly feel bad if they had asked me questions about it before. This makes me wonder. Why are people so understanding with me? Why do I never get that off beat comment that is slightly rude and inconsiderate? Is it because of where I live? Or is it because of the people in my school? Or is it because I handle telling others particularly well? Or is it because Marc Elliot came to talk to everyone at my school and they really get it? I wish I knew the answer, but something tells me it's not one of these things. I think it's a combination of them all right now. Anyway, I'm just so glad that others are so accepting and understanding. It makes all the difference.
Wednesday, November 9, 2011
Fatigue and Class Participation Problem
I saw Ginger Therapist today and told her how tired my arms and hands get sometimes and right now we're attributing it to complete muscular and physical exhaustion due to the sheer number and severity of my arm and hand tics right now. Right now, my main arm and hand tics are jerking my arms out and away from my body, pulling my arms into my chest forcefully, tightening and tensing my muscles in my hands and arms, bending my wrists, hitting things with my hands ( my stomach, my chest, tables, other hard surfaces, and my computer), clenching my fists, bending and stretching my fingers and hands, cracking my knuckles, and pulling my fingers back with my hands. Mind you these are only the tics in my hands and arms. Ehhhh, I'm very very tired of all these arm and hand tics, but hopefully they will lighten up soon! The amount I tic during the day has also been making me severely tired at the end of the day and sometimes I'm even tired after only one period. Luckily the trimester is coming to a close! Thank goodness! And I'll have a three day weekend this weekend with little to no homework. It'll be a good time to relax and hopefully get together with Steam Punk and Tie Dye Socks.
The other thing I wanted to talk about was my class participation problem. I pretty much never raise my hand in class to offer up answers if the teacher asks a question or asks for comments on a novel or subject. I pay attention and I have things to say, but my OCD and anxiety disorder interferes. Basically here's what happens.
Mr. Texas : Can someone give me a plot summary?
Me (just thinking): I know exactly what happened in the story, but what I have to say is not perfect.Tic, Tic, Tic. There is something wrong about it. I need more time to think. Tic, Tic, Tic. I need to go over the plot summery in my head first before I raise my hand. I need to know EXACTLY what I'm going to say before I say it to the teacher and everyone else in the class. Tic, Tic, Tic.
Mr. Texas: Yes, Kelly, go ahead.
Me (just thinking): Okay. It's okay. I'll just get the next question. Wait, no. The exact same thing will happen. It always happens. I can't raise my hand until I know the answer is perfect, and as someone with OCD, the answer is never perfect enough.
Anyway with this mental war going on in my head each time a teacher wants a response, I almost never end up actually raising my hand. It's never really been a problem though. I have an action plan that all my teachers see at the beginning of the year before they even meet me. It basically says " I have Tourette Syndrome, OCD, a panic attack disorder, generalized anxiety disorder, and a math calculation disability *aka, dont freak if I start making noises or twitching, give me extra time on tests and in class essays, let me leave the room if I get nervous or ticcy, don't mark me off if I don't talk in class, always let me use a calculator!". Anyway, when teachers see this they don't mark me off for class participation! Like Ever! Except for this year. My Creative Writing teacher, Mr. Texas, is giving me a C+ in class participation. So it was time to get my parents, and the learning specialist involved because my teachers just usually get it. As my mom puts it "you can't give a student an F in gym if they're in a wheel chair! And you cant give a student a C+ in class participation if they have a severe anxiety disorder". So the learning specialist is going to meet with Mr. Texas and my dean tomorrow morning. I really hope the learning specialist is able to advocate for me and help Mr. Texas to stop marking me off for class participation. I hate being marked off because of my OCD and anxiety. They already win most of the time. I'm just so tired of it.
At lunch I told Steam Punk and Tie Dye Socks about my problem with Mr. Texas. Steam Punk is in the class with me and after I told her the issue I was having she told me that she really wasn't judging at all but she really just thought I didn't listen in class. I reassured her that I do listen in class! Knowing Steam Punk she really didn't mean anything by it really, she was just telling me what was on her mind. That's the really good thing about Steam Punk. She says what's on her mind most of the time so you're never really left wondering. Later in the conversation Tie Dye socks brought up how shes an annoying person to sit next to while taking tests. She gets extra time, doesn't use a scan tron, and sharpens her pencil a bunch. After this comment though, we all agreed that I beat her on this one. She doesn't make noises :P
The other thing I wanted to talk about was my class participation problem. I pretty much never raise my hand in class to offer up answers if the teacher asks a question or asks for comments on a novel or subject. I pay attention and I have things to say, but my OCD and anxiety disorder interferes. Basically here's what happens.
Mr. Texas : Can someone give me a plot summary?
Me (just thinking): I know exactly what happened in the story, but what I have to say is not perfect.Tic, Tic, Tic. There is something wrong about it. I need more time to think. Tic, Tic, Tic. I need to go over the plot summery in my head first before I raise my hand. I need to know EXACTLY what I'm going to say before I say it to the teacher and everyone else in the class. Tic, Tic, Tic.
Mr. Texas: Yes, Kelly, go ahead.
Me (just thinking): Okay. It's okay. I'll just get the next question. Wait, no. The exact same thing will happen. It always happens. I can't raise my hand until I know the answer is perfect, and as someone with OCD, the answer is never perfect enough.
Anyway with this mental war going on in my head each time a teacher wants a response, I almost never end up actually raising my hand. It's never really been a problem though. I have an action plan that all my teachers see at the beginning of the year before they even meet me. It basically says " I have Tourette Syndrome, OCD, a panic attack disorder, generalized anxiety disorder, and a math calculation disability *aka, dont freak if I start making noises or twitching, give me extra time on tests and in class essays, let me leave the room if I get nervous or ticcy, don't mark me off if I don't talk in class, always let me use a calculator!". Anyway, when teachers see this they don't mark me off for class participation! Like Ever! Except for this year. My Creative Writing teacher, Mr. Texas, is giving me a C+ in class participation. So it was time to get my parents, and the learning specialist involved because my teachers just usually get it. As my mom puts it "you can't give a student an F in gym if they're in a wheel chair! And you cant give a student a C+ in class participation if they have a severe anxiety disorder". So the learning specialist is going to meet with Mr. Texas and my dean tomorrow morning. I really hope the learning specialist is able to advocate for me and help Mr. Texas to stop marking me off for class participation. I hate being marked off because of my OCD and anxiety. They already win most of the time. I'm just so tired of it.
At lunch I told Steam Punk and Tie Dye Socks about my problem with Mr. Texas. Steam Punk is in the class with me and after I told her the issue I was having she told me that she really wasn't judging at all but she really just thought I didn't listen in class. I reassured her that I do listen in class! Knowing Steam Punk she really didn't mean anything by it really, she was just telling me what was on her mind. That's the really good thing about Steam Punk. She says what's on her mind most of the time so you're never really left wondering. Later in the conversation Tie Dye socks brought up how shes an annoying person to sit next to while taking tests. She gets extra time, doesn't use a scan tron, and sharpens her pencil a bunch. After this comment though, we all agreed that I beat her on this one. She doesn't make noises :P
Monday, November 7, 2011
A Rare Day :)
Short post for tonight! I need to get to my homework. Today was one of the most mild ticcing days that i've had in a long while! Only facial tics for the most part and a few vocals near lunch time. All and all a very rare day! Boy, would I like to have these more often! Besides that I'm prepping for an interview over skype this Friday. I was my school's Morehead-Cain Scholarship Nominee, which is a full ride scholarship to UNC Chapel Hill in North Carolina. It's apparently one of the oldest and most prestigious scholarships in the country so I guess there's a lot riding on this interview. Hopefully it will go well :)!
Sunday, November 6, 2011
If Skype Video Chats Were Recorded.....
Last night I was skypeing with my awesome friend from Canada who also has TS. It's really great talking with another person with TS who I can relate to so well! I know a lot of people with TS, but I'd have to say that out of all of them I can talk about TS the most openly and freely with my friend from Canada. We seem to have VERY similar situations and a similar severity of tics as well. Should I give her a nick name? Hmmmm.....Let me think. Let's go with Starry. It seems to fit in my opinion :). So last night Starry said something that really made me smile. I came up with a very random "what if" which consisted of "what if all the skype conversations were recorded and saved and there was someone who went through them and watched them". It actually may be a possibility considering that our phone calls are sometimes listened to by the government apparently. So I suggested that our call may be the most interesting out of a lot of others and that the person watching would probably be like "what the heck?".
The conversation that followed:
Starry: "oh yeah, because we're talking about Chinese food and other really weird stuff"
Me: "Haha, true. And we're twitching and making noises"
Starry: "OH, hahaha. I don't even think about that when I'm talking to you"
This really made me smile. Starry and I may have both been twitching and making noises but it was so normal for both of us that it was just background noise that we didn't even notice much. When I'm talking with Starry, I'm just me. I'm not the girl with Tourettes making noises and twitching and she isn't either. We're just two people sharing stories and being friends :)
The conversation that followed:
Starry: "oh yeah, because we're talking about Chinese food and other really weird stuff"
Me: "Haha, true. And we're twitching and making noises"
Starry: "OH, hahaha. I don't even think about that when I'm talking to you"
This really made me smile. Starry and I may have both been twitching and making noises but it was so normal for both of us that it was just background noise that we didn't even notice much. When I'm talking with Starry, I'm just me. I'm not the girl with Tourettes making noises and twitching and she isn't either. We're just two people sharing stories and being friends :)
Saturday, November 5, 2011
Self Injurious Tics and The Issue of Control
Over the past few months I've had a startlingly abundant number of self injurious tics. Self injurious tics are really no fun at all but just like any other tic, no matter how much it hurts I can't stop. My main self injurious tics right now are hitting my chest with my fist, hitting my stomach with my fist, and arm tics in which my arms often end up bashing into my face, legs, or head. Last week I bashed myself so hard in the jaw due to an arm tic that my jaw was sore for at least a solid few days. Luckily it didn't actually bruise visibly but it sure did hurt! the combination of hitting my chest and stomach is no fun either. I usually end up hitting so hard that I go into "coughing fits" where I start gagging and coughing violently. I've been having these a lot lately due to the frequency of my chest and stomach hitting tics. These tics are hard because they really hurt my body and I know I may be causing real damage, but they really are out of my control.
This actually brings me to another subject: control. I wanted to clear up this subject. Many people confuse suppression of tics for control. Many people with Tourettes have very little or no control over their tics at all but still many others can suppress their tics for a certain period of time. Suppression of tics is often confused with control. A lot of people can and do suppress their tics for short or even long periods of time but this really should not be confused for control. While many people can suppress their tics it often makes tics come out more severely later when they are able to let the tics out and some people can only suppress tics for very short periods of time or cannot suppress them at all. I'd say that my ability to suppress tics is pretty typical for a person with TS. There are times when my tics are not that bad that I am able to suppress my tics for periods of time, although its usually no more than 5 or 10 minutes at most that I am able to do this. Then after I can no longer suppress the tics, I basically "explode" with tics. My motor tics can become rather violent and very painful and my vocal tics usually end up being rather loud. Suppressing is painful and no fun at all and I rarely acctually suppress when I am able to because the consequences are so unbearable. There are other times though when I can't physically suppress my tics. Usually when my tics get to a certain level I am unable to suppress them and they come out whether I like it or not. There are also times when I don't even feel the tic coming and I don't realize it until after I have already ticced. I know a lot of people with Tourettes who explain their level of control over their tics in a very similar way. All in all, control is a funny word when used for someone with Tourettes. Suppression is certainly not control, especially when it is a full out battle with your own body to stay quiet and still for more than 5 minutes and when you always lose the battle no matter how hard you fight. Suppression is not control when there are consequences for fighting that end in you hitting yourself in the stomach over and over again so violently that eventually you end up in fits of couching and gagging and lurching over in pain but are still unable to stop yourself.
Thursday, November 3, 2011
"Heads Up I Make Noises That Sound Like A Pokemon"
Today I experimented with a new way of telling others that I have Tourettes. I usually take the advice from the tsa website which is to take the next time you tic as an opportunity to explain, but this time I decided to try the "heads up" approach. I was doing a long partner run during rowing today and I was paired up with someone I hadn't been paired up with before. After about 10 or so minutes of running I could begin to feel that farmiliar feeling that comes before my bouts of vocal tics and I decided that I would give her a heads up in advance. As we were running I said "Hey, just a heads up, I may make some noises pretty soon. They're involuntary. Don't worry, I have Tourette's Syndrome and It's pretty normal for me". The girl I was running with was really chill about it and told me not to worry at all. She then told me that when she gets upset she mixes german and english swear words together and it sounds pretty weird. Not sure how this really relates, but I just laughed along. It took less than a minute for my "eeekkk" sounding vocal tics to start up. I then added that my friends say I sound like a Pokemon which is kinda hilarious. She thought this was pretty funny as well. All in all I like this approach to telling people because it makes me feel less embarrassed. This way I knew before I tic that the girl was okay with it and understood. It made me more at ease and I image it made her more at ease as well.
Wednesday, November 2, 2011
An Attempt to be Ambidextrous
I've been trying to teach myself how to write with my left hand for a little bit now. I'm right handed but my right hand always seems to start ticcing during a hand written essay or a test. My two most common tics with my hand right now are shaking it pretty fast or turning my wrist and clenching my fist in a way that makes it look like i'm turning a key with my hand. Because my right hand is stronger and more coordinated it seems to be the one that's always ticcing. During my French test today I had to stop writing and drop my pencil many times because I was shaking my right hand pretty hard and doing the key turning tic. Luckily I have extended time for all my tests and with this extra time I was able to finish, but this would have been a very good time to be able to be ambidextrous! So far my writing with my left hand is legible even though it is much messier and larger than the writing with my right hand. Also it takes me a long time to write anything with my left hand, so right now it's not really practical to just switch hands when one of my hands is ticcing badly but hopefully this may be an option for me soon! I'll just have to keep practicing! :)
Tuesday, November 1, 2011
Tourette's Syndrome Makes me Unique- My Grandpa's Reaction to TS
Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.
As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to.
I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.
The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me.
7/29/14- Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing.
7/29/14- Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing.
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