Tuesday, January 31, 2012

Hip Drama Teacher, her Son with Tourette's, and looking ahead to the TSA Meeting with Marc Elliot

I've blogged about Hip Drama Teacher in the past on my blog. Basically she was my drama teacher in 9th grade before I switched from drama to photography. 9th grade was the last year I took drama and let's just say I think it was for the best. I barely spoke a word in the class unless I was forced to and hated having to talk at all or draw any attention to myself. With my anxiety, tics, and obsessions acting is not my forte.

Talk about a reason to have some stage fright. Walking into that classroom was enough of a challenge. It was like my throat just closed up and my mouth refused to open due to the massive amounts of anxiety. I had trouble talking in all my classes, but drama was the hardest for me.

I was in a play in 8th grade and before the play, all of my knuckles and my knees turned bright bluish purple and I started shaking like crazzzy. It just so happens that during the play two girls had to hold on to my legs as they wrapped me in toilet paper and after the play the girls who were holding my legs immediately informed me that they could feel how badly I was shaking and asked if I was okay.

Anyway back to the point of the story, Hip Drama Teacher has a son with Tourette's. Her son is about 10 or 11 years old now I think and she talked about him in the class a few times. I distinctly remember when she started talking to a boy in our class who happened to have Tourette's as well. She started talking to him about a Tourette's documentary that she was excited to see and then another time told us about about how her son ticced in his sleep and kicked her off the bed and broke her arm

This was before I was diagnosed officially with Tourette's and during 9th grade my tics were very very mild. Pretty much my only tics during 9th grade were twirling my hair, sniffling, licking/biting/picking my lips, internal tics like muscle tightening and air swallowing, and some nighttime tics in bed like stretching my legs out repetitively and rubbing my feet together which made it hard to fall asleep

My more obvious tics that I had when I was younger like crotch grabbing, slurping sounds, very loud sniffling, skipping,  and jumping had all faded into the background at this point probably because it was just a natural waning period for my tics. 

When that waning period faded and my tics became more obvious again by the end of 10th grade and when I was diagnosed in 11th grade, I looked back to 9th grade drama class with Hip Drama Teacher because this was really the first real life encounter I ever had surrounded Tourette's. 

Another thing I blogged about a long long time ago was when Marc Elliot came to visit my school to talk in assembly about Tourette's and tolerance. In my blog post I talked about how after the speech I had to opportunity to skip a bit of math class and meet Marc and how a lot of other students came to meet him as well and that my two best friends friends, Tie Dye Socks and Steam Punk accompanied me. 

I wrote about how hard it was for me to actually open my mouth and tell Marc (in front of about 15 other people) that I too had Tourette's and that his speech meant the world to me. The part I did not mention was that Hip Drama Teacher was in the room and that made it 100 times harder. I don't know why it made it so harder. I think I was afraid that she would judge me or because of the fact that after I was diagnosed (beginning of 11th grade) it was hard for me to even walk by her in the hall because it reminded me of my Tourette's and of how I was hiding from the diagnosis and dreaded it so much at the time. 

Anyway it was huge for me when I finally told my close friends and teachers at the end of 11th grade but for me it was even huger when I told Marc Elliot about my TS in front of 15 other students and the person I had been so afraid to have find out, Hip Drama Teacher. My two best friends who were with me told me how proud they were of me for speaking up like that afterwards and I was so proud of myself too. Its so hard for me to speak up in class about anything, and it was so many times harder to speak up in front of this group and say that I had Tourette's. The ultimate battle to have won against the diagnosis to prove that it does not control how I deal with it. I control how I deal with it. 

I never blogged about what happened after that either. Later that same day, I went into the student technology help room with my friend Tye Dye Socks and Hip Drama Teacher just happened to be there. I hoped she wouldn't say anything to me because I had had enough adventurous moments with Tourette's for the day! Sure enough though she did say something. 

After a few minutes she said my name and I turned around and she said "I had no idea you had Tourettes! I guess I just don't notice those things so much because I'm so used to my sons tics". I surprised myself even further by going over to her with my friend and being confident and talkative about it. I responded that I was only officially diagnosed about a year ago and she asked me what some of my tics were and if I had vocal tics. And apparently I  was calm and composed the entire time! Yet another thing to be proud of that day! We then started talking about her son and how he had a tic where he said "I love you" just like one of Marc Elliot's first tics. 

We had to leave and go to class then, but on the way to class my friend said to me "Wow how do you do that?". I was confused by what she meant at first but then she went on to explain. She wanted to know how I could be so confident and calm about talking to a teacher about that kind of thing. She said she didn't think she would be able to do that if she were in my situation. 

I think she would be surprised though with herself if she had been handed the cards that I was dealt. I didn't think I would be able to do that kind of thing when I was first diagnosed and I am was even surprised by my own ability to handle Hip Drama Teacher's questions and speaking up in front of Marc Elliot about my TS. It was nice for a change to be so open about Tourette's and I even enjoyed talking so openly with Hip Drama Teacher about it. I would certainly be happy to have the chance to talk with her about it again which I may just get the chance to do! Having TS and having to explain myself so frequently has made me a much stronger, more open, and confident person. That is something I am sure of! 

The reason all this is on my mind is because yesterday I came in to school a bit late. I was only about 3 or 4 minutes late and the hallways were empty. I was walking in, sniffling and making my slurping sound freely because no one was around and just then Hip Drama Teacher came around the corner. She gave me a passing hi (using my name which I always like when teachers do!) and I smiled and waved at her. 

Before I could get to far though she turned around and said wait! She stopped me and asked me if I remembered our guest speaker Marc Elliot from the fall. Of course! Lol. She then told me that he was going to be in town again and that he was going to be doing an event for our state's tsa chapter and was wondering if I was going. Of course I am already planning on going since the president of the chapter (who I know very well) had e-mailed me weeks before telling me about the event and really wanting me to come since in her opinion I really remind her of Marc. I told my drama teacher that I already knew about the event and was planning on going. She then told me that she would see me there then! 

Anyway this is why all of this was on my mind and why I wanted to recount the full story on my blog. Hopefully I will be able to talk again openly with Hip Drama Teacher about Tourette's at the event! I am very excited! And I get to meet her son! I've already met her son, but never really officially. Always from a distance. He's such a cute kid :). 

Anyway I'm excited if you can't tell from the length of this post! The event is next Thursday night and I will certainly blog about it afterwards. I have a super bowl party with my cousins and dad's side of the family on this Sunday so maybe I can convince my cousin Twitch to come with me too!  

Monday, January 30, 2012

A Smile As Big As the Moon

Last night my mom and I sat down on the couch to watch "A Smile As Big As the Moon" together. If you haven't heard of it, A Smile As Big As the Moon is a Hallmark Hall of Fame movie that premiered last night on ABC. The movie is based on a book and a true story about a special-ed class that was the first group of special needs students to go to Space Camp.

One of students in the class has Tourette's so I was very excited to watch the movie! My mom is a Speech Pathologist who works in a special-ed school and is the mother of a daughter with Tourette's and OCD (me!) so she was excited to see the movie too.

When we sat down to watch it though, my brother was doing his homework in the other room and only let us watch it at a very quiet volume. My mom and I tried to fight him on it, but we  lost and still had to keep it the volume down.

My mom fell asleep half way through, and by 10:00 I was pretty worn out so I decided to turn it off and watch the rest later at a higher volume. Even though I only watched half of it at a low volume I enjoyed it a lot.

The portrayal of Tourette's in the movie was very very accurate which I greatly appreciated. The boy who had Tourette's had other problems as well such as ADHD and learning difficulties which is why he was in the special-ed class, but in terms of the Tourette's and tics it was portrayed very accurately without any stereotypes like outbursts of profanities.

Of course I didn't expect any less from Hallmark, the same people who produced Front of the Class (Brad Cohen's story of becoming a teacher with Tourette's) very accurately and beautifully. 

Anyway I plan to watch the rest of the movie sometime this week or weekend which I am sure will be fantastic! I would definitely recommend watching the movie or reading the book to any educator, or anyone else especially those who who have Tourette's, OCD, disabilities, or special needs.

Sunday, January 29, 2012

Middle finger tic is back. Darn you Copropraxia!

So I've blogged earlier about my copropraxia which I have never been too fond ofWhen people think of Tourette's Syndrome a lot of them think of someone swearing uncontrollably, however very few people with Tourette's actually suffer from uncontrollable swearing which is called Coprolallia. I am always able to say "I do have Tourette's, but I don't have Coprolallia" but unfortunatly I have never been able to say " I do have Tourette's but I don't have Copropraxia". For those of you who don't know, Copropraxia is a tic that involves inappropriate gestures or inappropriate touching and it's something that i've dealt with since I was a kid. One of my first tics as a child was grabbing at my crotch area and it was a tic that I truly hated. Since then I still will occasionally grab at my crotch area but certainty not as frequently as I used to.  Now two of the tics that I have been dealing with that would be classified as Copropraxia are making the gun gesture with my fingers and extending my middle finger. I do the gun gesture tic every now and then as a hand tic but I haven't had the middle finger tic since October. Well that is until last night. Last night I started all over again with the middle finger tic *sigh*. That one went away in October when I practiced the competing response which is grabbing my middle finger instead of the inappropriate gesture. Hopefully I can just practice doing that again and then the tic will go away like it did last time. I figured I would give my boy friend, Speed Racer, a heads up about this one in case I am doing the tic when we hang out. He's really cute with this kind of stuff and always likes to joke about it so when I told him about it, his response was that we should go hang out at an old folks home. Haha, this made me laugh. Hopefully it will go away this time again, we'll just have to wait and see. 

Saturday, January 28, 2012

Meet Andrew: A brave 9 year old boy with TS who will be featured in the documentary

Andrew is a brave and smart 9 year old boy. Andrew has excellent talent for playing the drums, a passion for drawing, and Tourette's Syndrome. Andrew has an older sister named Sam who also has Tourette's, and he and his older sister will both be featured in my upcoming documentary, Out of Our Control. What is it like for Andrew, living with Tourette's? He has answered some questions that I asked him to help us find out.

When were you diagnosed and what was it like? 
I was diagnosed when I was 8 but have had tics before that. I knew my sister had TS and I was used to her tics but it was still scary because I had it now.

What are some of your tics?
I drum on everything. I also punch my jaw, crack my jaw, flip my hair in front of my eyes, touch everything, sometimes I punch my legs. I repeat my thoughts and if I am told to stop, I have to do it one more time. I make noises like clearing my throat. I also have this throat tic that makes me swallow before I eat. I also rub my eyes.

What's the hardest part of having Tourette's?
I don't like not being able to stop my tics. I don't like when other people tell me to stop my tics because I can't stop them and then I am treated like I am bad or something. 

Do you think they're a positive side to having Tourette's?
I have my sister who has TS and we get along and understand each other. My mom and dad understand too. I have not met anyone my age yet but my mom is looking.

What do you want others to know about TS?
I can not control my tics. Being asked to stop or told to stop only makes my tics worse. I am not a bad kid.

Do you have associated conditions?
I have OCD and anxiety. I also have sensory tics. I have to touch everything and I have to finish things and I don't like when my mom leaves during the day or night. 

Do you take medication? Has it helped?
I have not tried any medicine yet. I know it did not help my sister and I saw her tics get worse. I don't want that. I do yoga with my mom and sister. Oh we both take melatonin to help us sleep.

Have you ever been bullied or teased because of your TS?
I have not been picked on by kids. My teacher did not understand TS and she was punishing me at school even though my mom tried many times. I was just taken out of school until we move. My teacher made my tics worse.

When do you tic the most? the least?
I tic when I am nervous. My teacher always made me aware of my tics and always told me to stop. She even moved me from my seat because I could not stop but that just made me worse. I tic at bed time and in public places.

What would you say to someone who was just diagnosed?
To make sure your school understands what you have or you will not have a good time in school.

To hear more of Andrew's story and the stories of others like him, keep an eye out for the upcoming documentary, Out of Our ControlThe documentary features 18 people just like Andrew who live with TS every day and their opinion on what it's like to have it. 

Friday, January 27, 2012

What is Tourette's Syndrome? (Street Interviews and an Expert's perspective Video)

This is the video I put together of some of the street interview filming I did for my documentary with the help of my friend and of the TS specialist's interview I filmed! Some of the street interviews and more of the expert's interview will be in the documentary. This shows the public's perspective of Tourette's and then contrasts it with an expert's perspective of Tourette's. Keep an eye out for the final version of the documentary which will feature kids, teens, and adults who live with Tourette's in addition to the street interviews and the expert interview! Coming soon!

Thursday, January 26, 2012

Thank goodness! A day off!

I get to stay home from school today thank goodness! All classes are canceled at my school because the whole school is going to a basketball game. I actually should be at the basketball game but because of my sensory processing disorder (another one of my associated conditions that go along with TS) I am very sensitive to loud noise and the squeaking of shoes on a basketball court. Plus if we really aren't doing anything productive my parents agree that there is really no point in going. I could be much more productive at home. So today I'm taking it easy. I slept until 9am, ate some chocolate donuts, received my last video for the documentary, and have been watching TV/ working on my documentary. After this post I will start doing homework. Also my trailer for the documentary just passed 500 views! Yay!

Wednesday, January 25, 2012

Follow me on Twitter! Plus another Doc update!

Follow me on Twitter! @jspershing93
I tweet about my documentary, my blog, and my daily life!

Also tomorrow I will get my very last video for my documentary! And then I will be all done with collecting videos, filming, and such. I am still waiting to hear back from my cousin about the music and I am still waiting on interviewing a researcher with TS, but besides that I am almost totally done with collecting videos. I also have all of the videos now cut and put in their pretty much final order and format on the program I am using! Yay!!!! This is exciting!

Tuesday, January 24, 2012

Interview with Neurologist

Got a lot of great video footage for my documentary today! I interviewed a MD/ Neurologist who studies Tourette's. He was great! A very nice guy and he seemed to be enjoying telling me about TS and about all his research on it! The other researcher who I was supposed to interview was sick today so I will have to reschedule with her. The documentary is getting so close to being done! I can't wait! Just e-mailed my older cousin who is 22 to see if he could record some music for the documentary. He studies music in college and is a very talented guitar player! He also has some form of OCD/Tourette mix. Hopefully he will be able to record some music for the documentary! I think it would be great. Neck hurts a lot today from ticcing.....sigh.

Monday, January 23, 2012

Support is so much bigger than anything else!!!

Also last night I went out to dinner with my dad and my grandma (on my dad's side, not the one who is in the hospital) and my dad insisted on telling her about my documentary. At first I was hesitant about getting into details about it because this is the side of the family I was almost conditioned in a way to feel bad about telling when I was first diagnosed. But soon I realized that it was my dad who brought it up and if he wanted me to speak up about it then by golly that's exactly what I was going to do! Anyway she was so proud and excited about the documentary. She wants me to contact my older cousin who studies music in college and plays the guitar so he can maybe write some songs for it. I'll try to e-mail him about that soon. Anyway I sent her the trailer and this is the e-mail she sent back.

"I'm so impressed & excited for you. I watched the trailer twice & will send the link out to the family. We've (everyone in the family) all been wanting to support you, but haven't til now been able to acknowledge our feelings to you. I'm thrilled that you are taking the initiative to bring Tourette's into people's conversations and awareness. Our family believes in helping each other in whatever way that we can-sometimes silence is not golden.
 Can't wait to hear & see more of the Documentary.
  Grandma "

Getting this e-mail was like a wow moment. Wow, I have finally found a way to open up about my Tourette's to my extended family (who I am fairly close to) and for them to be proud and supportive with the support of my parents on the matter. Certainly a successful moment. This documentary has meant so much more to me than just making a documentary. It means that my parents are proud to show other people the trailer in and out of the family even if it requires me opening up about my TS. My parents and relatives have finally accepted Tourette's in our lives and I am so thankful for that. As my grandma says: sometimes silence is not golden.

Today a guy sitting next to me in class briefly imitated/ mocked my arm thrusting tic fairly obviously. The girl across the table got very upset and motioned for him to stop. I didn't even care about the guy imitating me one bit. There is so much support in my life now regarding my Tourette's that I could care less about the guy in class imitating me, or the people in the ice cream store staring at me, or the SAT teacher calling me out of ticcing, or the people who think TS is just about swearing! The support I have is so much bigger and compared to that, those little moments of ignorance are NOTHING.

Neurologist and TS researcher interview tomorrow!

Tomorrow after school I am going to meet with a Neurologist and a Tourette's researcher who has Tourette's as well for my documentary. I'm super excited! The Neurologist agreed to let me interview him on film for the documentary but the researcher was a bit more hesitant about that because of her TS. She says she might be able to do a short clip on film for the documentary but is hesitant about being interviewed on film for the entire time. Even though she probably won't do more than a short clip, I am most excited to meet her! I've never met an adult woman with TS so I'm excited. In fact that only two adults with TS that i've ever met were Brad Cohen and Marc Elliot, both very public figures in the Tourette's community. So meeting an adult who has TS but is not a pubic figure is something new for me as well. So I'm very excited for tomorrow! Tonight I will prepare the questions I'll ask them for tomorrow. My mom is going to come with me to hold the camera to make sure the film is good quality. I kinda wish I could do it on my own, but I do want the film to turn out well.

Saturday, January 21, 2012

What does the average person think Tourette's really is?

Today I went with my boyfriend Speed Racer to a popular and fairly alternative area to film for the documentary. We were on a mission to find out and to film what the average person knows about Tourette's. I was pretty sure we were going to get some interesting answers because earlier that morning my mom's co-worker/friend was over at the house to help my mom out with moving my grandma into her assisted living home and my mom insisted on having me show her the trailer for the documentary. Half way through she turned to me and said "I never knew Tourette's was real" and "I thought it was just cursing for TV". She's a special-ed teacher so her lack of knowledge on the subject was kinda shocking really. So after this encounter I was expecting some pretty interesting answers. Speed Racer and I went to breakfast first (even though it was the middle of the day) and then went to film. We just asked people one simple question "What is Tourette's Syndrome?". I was shocked for the second time in the day because they did not say what I would have expected. Every single one of the people we interviewed, besides a few people, had a pretty accurate idea of what Tourette's is. Most of them knew it causes involuntary movement's and sounds and that the stereotype was that people with TS shouted out profanities but in reality that's very rare. The few who didn't know what it was guessed that it caused muscle spasms which is actually pretty darn close. I was impressed! And so was Speed Racer! And the ones who didn't know exactly what it was actually stopped me afterwards and asked me what it really was and wanted me to explain it to them. I was impressed by their knowledge of TS and by the willingness of those who did not know about it to learn! I educated at least 5 people today! A win for awareness and acceptance! At least that's how I feel! Anyway, I already put the footage of today's filming in the documentary. It looks very good!

Sidenote: Last night I got out of the shower and entered my room to find my mother laying in my bed underneath my awesome weighted blanket! She told me that I would have to sleep somewhere else because she my weighted blanket was so comfy! Haha I told her no way and made her get out! She now steals it from me on a regular basis to take naps with or to read under. Haha, she says I will have to put up with her stealing it until she can buy one for herself and for my brother too!

Thursday, January 19, 2012

Meet Sam: A brave 12 year old girl with TS who will be featured in the documentary

Sam is a very brave an intelligent 12 year old girl. Sam has a killer hit in volleyball, a passion for art and writing, a knack at learning to play the guitar, and Tourette's Syndrome. Sam and her younger brother Andrew will both be featured in my upcoming documentary, Out of Our Control. What is it like for Sam, living with Tourette's? She has answered some questions that I asked her to help us find out.

When were you diagnosed and what was it like? 
I was diagnosed about the age of 7 turning 8. It was scary because we did not know what Tourette Syndrome was but also we felt better knowing there was a name for what I had.

What are some of your tics? 
I have many of them that come and go. I throw my arms out, crack them and stretch them. I bite the tip of my tongue, smack my head in a downward thrust, stretch my neck back, crack my back and twist at the waste, I crack my elbows, neck and knuckles. Oh and I also clear my throat, hum, and grunt.     

What associated conditions do you have? 

I have OCD, tics of the mind. I have sensory issues because I do not like to be touched. I get basilar migraines and I have anxiety.  

Do you tell others about your condition? 
I use to hide it and sometimes I still do. It depends on where I am and with who. I tic all the time at home with my family and close friends. I just started telling other kids about having TS and so I am ticcing more in school but I usually try hard to stop the tics at school or in public places. I am not always able to and sometimes I get worse or sometimes I try to make my tics look normal.

What's the hardest part about living with Tourette's Syndrome? 
Not being able to have control over the tics. They can really cause a lot of pain and I just want them to stop because it hurts so much but I cannot make it stop. Its hard to go to public places because my tics get worse and people just look at me. Sometimes people don't believe that TS is real.

Do you think there is a positive side to having Tourette's?  

I have met so many people because of having TS. I have a few great friends and we help each other. My mom has met a few other parents with children who have TS and they have become great friends too. I have been in a few studies too, maybe one day I will be apart of a cure.

What do you want others to know about Tourette's? 
I have tics every single day. Some days I don't notice them as much while other days I am in so much pain. Its not always easy to be upbeat and happy when your hurting but I try. I just want people to learn about TS because too many people don't know what it is or they think they do and its way wrong.

What advice can you give other kids who are newly diagnosed with Tourette Syndrome?
 I think I would tell them about all the other kids who have it and how its nice to meet others like you. Its not easy but I understand. Its not something anyone can fix but its nice to know others who have it. Its worse when you feel alone or misunderstood. 

To hear more of Sam's story and the stories of others like her, keep an eye out for the upcoming documentary, Out of Our Control. The documentary features 17 people just like Sam who live with TS every day and their opinions on what it's like to have it. 

Wednesday, January 18, 2012

Success at Taking Action Against Tourette's at Night and Some Documentary Info

So last night was my first night sleeping with my brand new weighted blanket. At first I thought it wouldn't actually be enough weight to make any difference or to quell my tics, but I was soon surprised! Soon enough I felt the weight settling in and after about 5-10 minutes under the blanket I found it was immensely comfortable. I did a few small tics in bed, tossed from one side to the other only twice, and then fell asleep! The weight was immensely calming and comforting and it definitely helped my tics. I didn't wake up ticcing once in the night or wake up for any reason at all before it was time to wake up.  It's one of the best nights i've had in a long while and for anyone who has TS and who has trouble falling asleep at night because of tics I would definitely recommend a weighted blanket for any age.

Here of some places you can order weighted blankets online:
http://www.sensacalm.com/weighted-blankets/ (SensaCalm, where I got my blanket from!)
http://www.weightedblanket.net/ (Dream Catcher Weighted Blankets)
http://www.cozycalm.com/ (Cozy Calm)

Also for my documentary or just for the purposes of my youtube channel, Speed Racer (my boyfriend) and I are going to go to a popular and alternative part of town on Friday to film short interviews with people on the streets or in the stores and ask them if they have heard of Tourette's Syndrome and what they think it is or might be. We are also planning on contrasting the basic and public knowledge of Tourette's with that of Autism and Aspergers Syndrome to compare. I will either edit that video into the documentary or post it on its own on youtube and I will certainly post the link on my blog when I am done with it and blog about the experience as well. In addition, I have made the deadline for turning in videos for the documentary this Saturday. So if you want to make a video but have not yet gotten around to it, now is the time to e-mail me, comment, or send me your video!

Tuesday, January 17, 2012

My Weighted Blanket Came!

So my weighted blanket was just delivered tonight! I was so happy to see the big package outside of my door when I came home from school! I took some pictures of it for my blog. It's pink and both my mom and I think its very pretty.

My mom says that when I take it to college she thinks everyone will be jealous of it and want there own. Haha, I don't know about that, but so far I am liking it. It's more of a throw over blanket for the bed and less of a comforter, but none the less I still think it will do its job.

I set it down on the couch and climbed under it to test it out and it was soooo comfy!!! It is now on my bed and I am really hoping that besides been a really pretty and comfy blanket in itself that it will also help reduce my tics at night and thus make it easier to fall asleep and stay asleep! I sure need the sleep tonight because last night after taking a full hour or more to fall asleep I was woken up at 1:30 am by a giant thunder and hail storm! It sounded like we were being attacked. My dad was afraid that it would break the windows.

So after being kept up until 2 am by the storm, the tornado siren went off and my dad insisted that everyone go down to the basement where we stayed until my dad was sure everything was safe. We stayed down there till 2:45 am and then when I got back up to my bed I found it hard to fall back asleep.

Luckily I did eventually fall asleep, but I need my rest tonight and hopefully my new blanket will help. My mom's night last night was 1000 times worse than mine so I really shouldn't be complaining. My mom was with my grandma in the ER until 5:30 AM! Crazyness! My grandma is okay really, she just has a slight case of pneumonia and some really bad anxiety which made everything worse. They had to admit her to the Psych ward and give her some kind of sedative. And this isn't even on the side of the family where my ocd and TS comes from. That's all on my dad's side. So on my mom's side we have severe anxiety and panic attacks and on my dad's side we have OCD and Tourette's. Lots of disorders, heh. Well it could be worse.

My weighted blanket on the couch!

A close up!

Monday, January 16, 2012

My Weighted Blanket is Coming!

Quick post for tonight! I got an e-mail a few days ago saying that my weighted blanket that I ordered from SensaCalm has been shipped and will be here on the 17th. Guess what!?!?! The 17th is tomorrow! I can't wait for my new blanket to come and I am really hoping that it will decrease my tics at night. I am fed up with not being able to stop ticcing and settle down for bed and I am really hoping that the weighted blanket will make a difference for me. Anyway we'll see if it actually does come tomorrow. Those UPS people can be deceiving sometimes. But I sure hope it does come tomorrow! I have been waiting for some relief from tics at night for a long time and have been waiting for the blanket since winter break! It's supposed to be pink too. Pink is one of my favorite colors!

Saturday, January 14, 2012

Update on the Documentary!!!

Just wanted to give an update on the documentary! It's coming along very well so far and as of now it's going  to be pretty long with 4 or 5 parts each about 10 min long because I got so many videos and I dont want to leave out anything about TS. Today I finished putting all the video clips together in their pretty much final parts! That took so long and it took a lot of thought deciding which segments of people's videos should be included and where they should be put in terms of the rest of the video clips. Anyway when I finished that today I started audio mixing as well as adding music. I've added music and done audio mixing to 3 out of the 4 parts now, so I'm pretty far along with that! So far I'm using a mixture of piano and guitar music and trying to use music that is uplifting but at the same time shows the seriousness of the subject matter. Right now I would saw I could have it out by the end of January but I am still waiting on more videos that people told me they are going to make and I don't want to leave them out. So I will finish editing and putting together what I have right now probably over the 3 day weekend and just put it on hold until I hear from the people I am waiting. Then when I hear from the people I'm waiting on I will review their videos, decide what parts of them should be included and find parts of the video where they could fit then stick them in! I am also waiting on an interview with my neurologist for the documentary. He's been out of town for it bit but i've already e-mailed him and he said he and his colleges who study Tourette's would be happy to do an interview for me. Anyway right now I guess I would expect the full thing to be out by the beginning or middle of Febuary? Just a guess on that one though. I really have no idea! We'll just have to see! I have also just set the deadline for uploading videos, marking them as unlisted, and sending me the link for next Saturday, January 21st. In addition, I have modified the questions. Here are the modified questions. 

Say your name, age, and that you have Tourettes
What is Tourettes? (explain it in your own words)
What does a tic feel like to you?
When were you diagnosed?
Explain what it was like being diagnosed.
What are some of your tics?
Have you ever been bullied or have you gotten negative reactions?
What has your experiance been like in school with TS? Were your school system/teachers supportive?
Have you had support from friends and/or family?
How do your friends and family support you and help you feel okay about your TS?
What's the hardest part of having TS?
How do you persevere through difficult times with it? Or how do you deal with negative reactions?
Do you think they're a positive side to having TS?
What do you want others to know about TS?
What associated conditions do you have? OCD?
ADD? ADHD? SPD? Etct..
Do you take medication? Has it helped?
Does anything else besides medicine help?
What would you say to someone who was just diagnosed?
When do you tic the most? the least?
What do you like to do? are you an artist? a musican? a writer? do you like to
cook or act in plays?
Anything else you want to tell people about having TS?

Friday, January 13, 2012

Friends Who Care!

So I just had to blog about this. A very bloggable moment in my opinion. Today I had a free period instead of my Holocaust class because my teacher was not there. My friend, Steam Punk, and I went to our usual hang out area where most of our friends hang out. I spent the period working on my documentary which I have gotten very far along with at this point, and Steam Punk was working on some reading and talking to a guy friend of hers. I was semi paying attention but my full attention was caught soon enough. Steam Punk's guy friend was acting silly and started trying to be funny by pretending to "convulse". He started joking and laughing saying that he was "convulsing". Immediately Steam Punk got very serious and said "Hey that's really not funny. There are lots of people who really have to deal with stuff like that, like people who have seizures and tics". This made me smile because I knew she was standing up for me and for others like me with Tourette's and in addition people who may have seizure disorders. The guy immediately apologized and stopped joking around. When Steam Punk gets serious, I mean she gets really serious. There was no messing with her. Gotta love a moment like this. Friends who care! :)

Wednesday, January 11, 2012

TS Awareness Stickers :)

So I wanted to do another quick post for today. The president of my state's TSA chapter who I know very well on a personal level wrote me a college recommendation for a specific scholarship about diversity and bringing diverse groups together. I am so grateful that she was willing to do this for me. It makes me feel so special. It just arrived in the mail right on time and I will be able to get it to the college before the deadline. When I flipped the envelope around I saw that she sealed the rec letter with Tourette's awareness stickers! This made me smile. I've never actually seen Tourette's awareness stickers before. They don't exactly sell them at your local drugstore! :)

Pictures of the stickers!!!

Dealing with How Tics Affect my School Life and Reading

Busy, Busy, Busy. Gosh this week has been crazy, and it's only Wednesday! I've been dealing with my teacher Mr. Colorado who has assigned CRAZY amounts of homework. A project, A paper, and 69 pages of Catch-22, all for one weekend and due on Monday. You have to pick one to assign. Project or paper or reading. Not all three!

He's a very new teacher so he's new to all this and still trying to figure out how much homework was reasonable. This was clearly not reasonable for any student, and especially not for me!  I finished the paper, and the project, but there was no way I could get the reading done. After the stress of dealing with the paper and the project, I was way to stressed to sit still and actually get through 69 pages of reading. I got about 20 pages done, but after that I had to stop reading because of how bad my tics had gotten.

So I knew I was going to run into trouble because I was already behind on the reading and he was planning on assigning 40 pages or more per night of this book in the future. Plus he gives these really hard reading quizzes usually every other day which I would surely do poorly on based on the fact that I had not done the reading! So I decided to go in and talk to him about this.

I e-mailed him to let him know that I wanted to come in to talk about the reading and the problems my tics were posing for me with this amount of reading and other homework. He told me we could definitively meet about it and after school when we met I was very happy with the outcome!

Mr. Colorado totally understood about my situation and told me that I should work on doing what I can do with the reading and how far I can get on it personally based on myself and not based on where the other students are with the reading. He told me I could work out a personal plan with him for the reading which we semi-worked out during the meeting and that if I ran into any more trouble, I could e-mail him and let him know. He made sure I knew everything was going to be alight with the class. Glad I worked that out and so glad that I go to a school where the teachers are so understanding.

I go to a private school that is one of the top schools in my state and they are absolutely fantastic about understanding differences, giving accommodations, and anything else in that area. I, along with a lot of other students have a personal school plan that tells my teachers about my accommodations and diagnoses. Mine tells my teachers about my anxiety, panic attacks, Tourette's, OCD, and math calculation disability. My school gives me extra time on every in class assignment, essay, or test and on out of class assignments if I need it. I have permission to leave the room when I need to due to tics or anxiety, and if I need to, I can take my tests in a separate room.

I usually don't need my own room for just regular tests but for larger exams I have chosen to take them in a separate room in the past so that I won't be so focused on my tics may be affecting the other students. For the ACT I got awesome accommodations thanks to the letter my neurologist wrote and thanks to the wonderful way the school learning specialist advocated for me.

I am allowed to make my ACT with double time, in a separate room, over multiple testing days, with a laptop to write my essay, and I could just circle the answers on the sheet and didn't have to bubble on a scan tron. I feel so lucky to go to a school where the teachers and learning specialist can advocate for me so I can have these much needed accommodations on national tests. And also I feel so lucky to have the accommodations in school and to have so much support and understanding surrounding me.

Monday, January 9, 2012

Marc Elliot Event for TSA Chapter

Sorry I haven't blogged in a while! I can't believe the last time was last Thursday. Ive been sooooo crazy busy with homework and college scholarships ive had to fill out. Anyway I wanted to share a little moment here. Last night the chair of my state's tsa chapter (who I know very well) e-mailed me to tell me that Marc Elliot would be doing an event for the chapter and she wanted to let me know this as well as the date asap because she really wanted me to meet him! Of course I have already met him briefly when he came to my school to speak, but I am so excited to get a change to meet him again. This time less rushed hopefully. The part of the e-mail that just made my day though was the part where she said that I really reminded her of Marc when he was my age. This made me smile. Marc is such a success. He graduated from one of the colleges i'm applying too, and now is a national speaker about TS and teaching tolerance and is just about to publish a book. Anyway the event is in early Febuary and I cant wait!!! Also still waiting on my weighted blanket. Boy this is taking way to long for it to come in the mail. :(

Thursday, January 5, 2012

New Tongue Tic, Starting 2012, and More Documentary Work

New tic....sticking out my tongue. Not so much fun. Gosh, I that tic was going crazy today. I've had tongue tics in the past but most of the time I would just keep my tongue in my mouth. Not this time, lol. Some days I just feel feel like why me? Today was one of those days. I just begin to feel like i'm so tired of this and and this is getting so old. I don't feel like this every day but today was one that left me feeling like this. Hopefully tomorrow will be better. Some days though I think that my blog, and the thought of writing about how I feel in it, and the thought of the fact that people may be reading it is the only thing that gets me through the day on days like this. I looked at my blog roll today and this is my 4th post this new year. As I looked at it I wondered what other posts it will be filled with. I will chronicle my life with Tourette's while i'm going through my last year as a high school student, deciding on what college to attend, graduation, my summer in transition, my first day of college, my first semester of college, and all the way up to December 31st of 2012. I will blog a full year in my life for the first time. It means more to me than to anyone else I am sure. To be able to put my life out in words almost every day and look back on it is something I have never done before. A year from now I will look at this blog and know what became of 2012. It will be written and it will just be text on a blog page. It's that simple. Something strange and unusual to think about indeed.

I also started working on the final version of the documentary today. Its very rough right now and its just the first 4 minutes. Let's just put it this way, I have a lot of work to do.  And I'm still receiving videos so when I get those I will work them in! I'm excited to do it though. I think I'll be sad when i'm done with the project. I'm having so much fun with it!

Quick post. Gotta get back to homework. Oh yeah and today the NJCTS Teens4TS blog featured my documentary trailer on their blog. That was exciting!

Wednesday, January 4, 2012

An Early Morning Comment on my Tics

I actually haven't had many comments from a person who I am not very close to about my tics lately. Most of the people I'm around at school and in my classes know I have Tourettes and when they see me tic they usually just don't comment. This morning in AP Photo class I was ticcing a bunch. Mainly motor tics. I left the class at one point to go out in the hallway and just shake and tic a bunch to try to get it out of my system. But when I came back I was none the less still ticcing. The guy sitting next to me knows I have Tourettes of course and we've actually discussed it on earlier occasions. He's just a guy in my class and I really don't know him all that well. Today we turned to me and said "Gosh! I'm learning lots of new tics today. It sure is interesting sitting next to you!". I just laughed along with his comment and we both went back to working. This has been the first comment from someone I don't know very well about my tics in a long while. I mean I know I have Tourettes but I don't see myself and its sometimes a shock for me to hear others comment on it because I'm just so used to ticcing. It's so normal for me. Anyway just thought I would share that moment. He said it in a very friendly way and wasn't trying to be mean or offensive or anything at all so that's always good.

Anyway the documentary is still going well! I e-mailed a lot of people about it yesterday. I e-mailed the link to  the trailer to my psychologist I see for my OCD, my moms cousin who produces real famous documentaries (one of his was nominated for a grammy!), my college counselor, and my school counselor. All per the request of my mom actually! My school counselor was soooo impressed with the project! And my moms cousin who is a real documentary producer was even impressed. This is the e-mail he sent me back after he saw my trailer:

"I just looked at your Tourette videos and I must say they are just wonderful and you are incredible for doing this.The idea of putting out the word like this and making a worldwide doc is a natural.... And I'm sure this will go viral...

The idea you are getting to, I think, is wonderful and will make this terrific and meaningful - the idea that Tourettes is symbolic for so many other things ---that everybody (every kid, too) has something that separates them, that embarrasses them, that makes them uncomfortable.  And the message  to stop bullying, to learn to accept each other and celebrate differences, is the path... it is wonderful...

I'd just advise you to carry on...you are doing great...

(just hold the titles on a little longer so oldies like me who don't read as fast can read them).

Anything I can do or any advice I can lend ---call or write me anytime..." 

I was so happy to get this e-mail back! It made my day! He is a real life documentary producer, and even though he is family I felt like I was e-mailing a movie star! So that's my update for today. I will carry on! 

Monday, January 2, 2012

Photo Montage of Some of The Documentary's Stars!

Emma, 15

Thomas, 8 

Lena, 17 

Alex, 16

Emma, 14

Sam, 12

Andrew 9, 

Sam and Andrew (Brother and Sister) 

Faith, 21

Edward, 18 

Audrey, 16

Blake, 12

Katie, 10 

Katie and Blake (Brother and Sister)

Phillip, 19

Emily, 15

Emily, 12