Today I went out to lunch with my mom and afterwards we went shopping and bought some awesome new Capri pants in all these different bright colors. I bought teal (TS awareness!), blood orange, and white colors! And I got some very cute shirts as well.
While I was shopping, I was doing a lot of my sniffling tics and the lady who was helping us said to me "Oh are your allergies bad this time of year?". I've never actually had real allergies. When I was little I was brought to more allergists, ENT's, and doctors than I could count for my "sniffling problems" and at one point a doctor told my parents that I "might be allergic to dust mites", but I never really did have any allergies. In addition to my many allergy tests, I had a giant tube stuck down my nose to get a picture of my adenoids to see if that was the problem that was causing my sniffling, and I had a CT of my sinus passages as well. All the doctors could come up with was that "maybe" I was allergic to dust mites and "maybe" I had moderately enlarged adenoids.
I didn't feel like educating the lady who was helping me find a shirt for two minutes, so I just shook my head. She then said "Oh my allergies get really bad this time of year, and your just sniffling a lot so that's why I asked". And then my mom replied with "she sniffles a lot".
Well that's my Tourette's story for the day, lol. Not too exciting or eventful, but just a snip-it of my day. #ShoppingwithTourette's!
Anyway, my uncle on my dad's side, his wife, and his kids come into town tomorrow night. His kids (my cousins) are pretty young and are only 6 and 8 years old. I've never actually met them and its kind of been an ongoing joke in my family that the kids are myths. I'm excited to finally get to meet them! My dad's side of the family is going to have a big dinner get together tomorrow night and I will also get to hang out with my cousins Kitty and Twitch as long as they can come! Hopefully both Kitty and Twitch will be there so we can hang out and catch up on stuff. I'll blog about it :).
Saturday, March 31, 2012
Wednesday, March 28, 2012
I think I have found my perfect college match!
Yesterday I had a really awesome awesome day!! I went over for an admitted information session, a N writing scholarship interview, a personal meeting with the head of the film school, and a freshman writing seminar for the N Scholars. I felt like I was a real college student! My Scholarship interview went fantastically! I was interviewed by the head of the program and throughout the interview she told me how fantastic my short stories and poems were and how much they reminded her of famous authors and poets like Sylvia Plath of Jumpa Lahiri.
At the end of the interview she told me that today alone she has interviewed 20 students, and she only has 8 places in the program. She then told me that out of all those students I was probably the most qualified for the program and that once in a blue moon she is able to offer a scholarship right on the spot and she wanted to offer it to me right then and there! I was so honored and excited and just knew this program was right for me! I thanked her, told her how honored I was, and told her how wonderful the program sounded and how much I wanted to be in the program.
Not only does the program give you some scholarship money, but it also puts you in the N scholarship program with the 8 other students from your grade. I will be with 8 other freshman who love writing as much as I do and will take writing classes and seminars with them all 4 years of college. Most of the time, the group bonds so well and they all become great friends. The program sounds like it was made for me and I can't even express how much I want to go to the University and be a N scholar.
I then attended the Freshman writing seminar with the 8 current Freshman N scholars which was absolutely fanatastic! I felt right at home with the incredibly intelligent students, and the amazing poetry and prose we were reading. We spent the entire time mainly on Billy Collins (whose poetry I am discovered that I love!) and we watched animations of the poetry on youtube. There was tons of yummy food, the students and teacher were all so nice and welcoming, and the school and program felt so right.
I truly hope I can go to the school and be a N Scholar next year. My parents and even grandparents are so excited about this accomplishment and seem to be taking the University and scholarship program very seriously as an option for me. My grandpa even said that he secretly hopes I don't get into any of the Ivy's that I applied to. I secretly hope this too. I think I have found my match and my home for the next four years.
At the end of the interview she told me that today alone she has interviewed 20 students, and she only has 8 places in the program. She then told me that out of all those students I was probably the most qualified for the program and that once in a blue moon she is able to offer a scholarship right on the spot and she wanted to offer it to me right then and there! I was so honored and excited and just knew this program was right for me! I thanked her, told her how honored I was, and told her how wonderful the program sounded and how much I wanted to be in the program.
Not only does the program give you some scholarship money, but it also puts you in the N scholarship program with the 8 other students from your grade. I will be with 8 other freshman who love writing as much as I do and will take writing classes and seminars with them all 4 years of college. Most of the time, the group bonds so well and they all become great friends. The program sounds like it was made for me and I can't even express how much I want to go to the University and be a N scholar.
I then attended the Freshman writing seminar with the 8 current Freshman N scholars which was absolutely fanatastic! I felt right at home with the incredibly intelligent students, and the amazing poetry and prose we were reading. We spent the entire time mainly on Billy Collins (whose poetry I am discovered that I love!) and we watched animations of the poetry on youtube. There was tons of yummy food, the students and teacher were all so nice and welcoming, and the school and program felt so right.
I truly hope I can go to the school and be a N Scholar next year. My parents and even grandparents are so excited about this accomplishment and seem to be taking the University and scholarship program very seriously as an option for me. My grandpa even said that he secretly hopes I don't get into any of the Ivy's that I applied to. I secretly hope this too. I think I have found my match and my home for the next four years.
Monday, March 26, 2012
My Dad's Side of the Family Definitely has OCD and Tourette's!
Ever wondered where I got my OCD and Tourette's from? Well from right here of course!
Well not exactly from shirts hanging in a closet! But compare this side of the closet to my mom's side of the closet and I think you can start to get the picture!
A bit of a difference there, huh? Well, the first picture is my dad's side of the closet, and you can tell that it's quite a bit different from my mom's side of the closet. Not only are the shirts ironed and flattened perfectly, but each hanger is exactly the distance from the hanger on either side of it.
That's because my dad has OCD, and as you can tell, my mom does not. My dad's hangers HAVE to be exactly the same distance from the other hangers in his closet as you can see, and as he has mentioned to me before it is one of his many OCD "compulsions". You don't have to live with my dad for very long to know that he has OCD, and living with him for my entire life, it sure would have been hard to miss the OCD.
I remember that when I was a kid, my brother and I would play little games with him to see how long he could go without his OCD taking over. Of couse we didn't know that this thing he had was called OCD, we just thought it was funny. One time my brother kept dropping peas on the table by accident and my dad kept putting them back on the plate. He just couldn't stand seeing even one pea on the table! Then either my brother or I (I don't remember which one) decided to purposely put the pea on the table and start joking with him and say "let's see how long he can stand it without putting the pea back on the plate!". My dad waited a few seconds then just had to put the pea back on the plate! We started laughing because we just thought it was so funny! It was all in good fun though! My dad and mom were laughing right along with us.
Another time, my dad ordered a beer sampler when we were out to dinner. When the beer came, there were 5 little cups and in each cup was a different kind of beer that was shaded a different color. They came all jumbled up and my dad just HAD to order then from darkest to lightest in a straight line. My brother and I thought this was very funny as well!
There have been a lot of moments like this over the course of my childhood, and i'd have to say that it's pretty clear that I got my OCD and Tourette's from my dad and his side of the family. Whenever it comes up, my mom will say "Oh yes, my husband definitely has OCD".
My dad also has some tics but it is a very touchy subject for him. No one ever brings it up, and he never talks about it. Ever night when my dad comes home for dinner, he makes these gulping/hiccuping sounds and he has been doing this for as long as I can remember. His body will also suddenly do these little jerks/twitches every once in a while and sometimes he will do a quick shivering movement when it isn't even cold in the room.
My dad isn't the only one on his side of the family who has OCD or tics though, not surprisingly, since it is genetic. My dad is one of 4 brothers, and at least three out of the four have clear OCD. One of my uncles asked for a vacuum for his 6th birthday, and when he got his very own mini vacuum, he went around for weeks as happy as can be vacuuming every dust particle in sight. He gets very embarrassed when my grandma or anyone else brings that up though! And sure enough a good majority of cousins will routinely report that his or her dad clearly has OCD. In addition, I have two other first cousins on my dad's side that I know of who have been diagnosed with Tourette's and/or OCD.
So my Tourette's and OCD is obviously genetic! I know that much for sure. My mom has also now become convinced that my brother has Tourette's as well. We've known he has had tics for a while, but he recently started doing a humming noise and a lot more blinking and mouth opening. Since he is 15 and is very insecure about this kind of stuff though, my mom doesn't dare even try to bring him to a neurologist just yet. Whenever my mom hints at anything in the anxiety/tic department, my brother will get VERY angry with my mom and will tell her to never talk about it with him again. So she is hoping that in a few years he will mature enough so that she can get him to a neurologist.
She mainly wants to get him diagnosed so that he will be able to have the accommodations he needs for the SAT/ ACT which he will take in just a few years. She also wants him to one day be a Tourette's Syndrome Youth Ambassador and go up to Washington DC for the TSA Youth Ambassador conference since we found out about the TSA Youth Ambassador Program too late for me to get involved with it. She thinks this will look really good on his college application and knows that if my brother ever became more secure about his tics that he would just love it because of how much he cares about and loves helping other people. Well we will see how that plays out over the next few years. I can tell you one thing for sure though: if he does ever become a TSA Youth Ambassador, I will be soooo incredibly jealous!!!
Sunday, March 25, 2012
What's been going on in the Tourette's/OCD community this week? (Week of March 25th)
(March 19th) American Idol’s James Durbin Talks About Living With Tourette's — Exclusive: http://www.wetpaint.com/american-idol/articles/american-idols-james-durbin-talks-about-living-with-tourettes-exclusive
(March 20th) Annette John-Hall: Embracing OCD as a part of her: http://articles.philly.com/2012-03-20/news/31215285_1_dark-thoughts-obsessive-compulsive-disorder-sufferers
(March 20th) Trek in Canada Closing In On $500,000 For Tourette: http://www.marketwatch.com/story/trek-closing-in-on-500000-for-tourette-2012-03-20
(March 20th) JSU student doesn’t let Tourette’s keep him down: http://jaxnews.com/bookmark/17944362/article-JSU+student+doesn%E2%80%99t+let+Tourette%E2%80%99s+keep+him+down#.T2mwPzVPaBs.twitter
(March 21st) Callum Hole and mum Lisa on what it’s like living with Tourettes: http://www.walesonline.co.uk/cardiffonline/cardiff-news/2012/03/21/callum-hole-and-mum-lisa-on-what-it-s-like-living-with-tourettes-91466-30585238/
(March 20th) Full version of the Tourette's Syndrome documentary "Twitch and Shout" produced in 1993 is available online: http://www.youtube.com/watch?v=UYLLfAcGTLU
(March 20th) Morning News, Trek from Tourette Video: http://www.globalsaskatoon.com/video/trek+for+tourette/video.html?v=2212779904#interviews/video
(March 21st) Blog post about Marc Elliot's impact on a college student who heard his speech: http://aduquesnel.wordpress.com/2012/03/21/live-and-let-live-the-challenge-of-tolerance/
(March 22nd) Charlize Theron and 8 More Stars with OCD: http://abcnews.go.com/Entertainment/charlize-theron-stars-obsessive-compulsive-disorder/story?id=15972302
(March 22nd) Bayside Teen To Participate In Tourette Syndrome Youth Ambassador Training In Washington D.C.: http://ballantynescoop.com/local-teen-to-participate-in-tourette-syndrome-youth-ambassador-training-in-washington-d-c/
(March 23rd) Local families talk about importance of supporting and attending Tourette Syndrome Awareness Day in New Jersey: http://www.prlog.org/11831418-local-families-talk-about-importance-of-supporting-and-attending-tourette-syndrome-awareness-day.html
(March 24th) Eureka Teen Becomes Tourette Ambassador: http://eureka-wildwood.patch.com/articles/eureka-teen-becomes-tourette-ambassador
Saturday, March 24, 2012
Going to be part of a Tourette's Research Study! :)
Okay, I am now ready to start blogging again! I took a little break from blogging this past week because my parents were out of town, my dog is sick, and I'm on spring break so there is really not much going on to blog about. Now things are starting to get back to normal, except for my dog who is sick. We originally thought she had a urinary tract infection but now we know it's more than that. She is acting just fine, but there is tissue and blood in her urine and the vet doesn't know what is wrong just yet. He is going to send out the sample for testing and give her an ultrasound and hopefully we will know more then. I really hope she is okay because I love her so much and all of my family does too. My grandma's dog has cancer and only has about 2-8 months to live which is hard enough to deal with, It would be just awful for something serious to be wrong with my dog too. My poodle is a part of my family and I am so attached to her. We will get her ultrasound done on Monday and will get the test results back then too, so I hope to know what is going on by then.
Besides that I wanted to blog about something more Tourette's related, lol. When I went to interview the Tourette experts for my documentary, the Doctoral Fellow who both has Tourette's and researches it mentioned to me that she was going to be starting a research study for people with Tourette's ages 18 and older. She asked me if I was interested and if I would be willing to be a part of the research study when it was all ready and of course I said yes! So last week she got back to me and told me that the study was all ready to go and I let her know that I was still interested. So....I am all signed up to be part of the study! There are two parts of the study, the behavioral testing and the MRI scan. I am set up to do the behavioral testing part on April 4th and the MRI scan part on April 7th. During the behavioral testing part there will be pencil and paper tests, verbal response tests, and questionnaires. I am a bit worried for the MRI scan because I am not sure how long I will be able to stay still. I'm sure they will be understanding though considering this is is Tourette's study, lol.
Anyway, besides a bit of apprehension about the MRI scan, I am excited to spend more time with the doctoral fellow who has TS (because she is just the kind of person who is really awesome and intelligent and who you want to get to know better) and I am also excited to get pictures of my brain! I've always wanted to see my brain. And of course I am excited to be helping neurologists and researchers to learn more about Tourette's. The more that is known about TS, the more tolerance and acceptance there will be for those with TS.
So, I will definitively blog about how both parts of the study go in the next week or two! In the mean time, I have one more week of spring break and I am going to take advantage of the extra sleeping and relaxing time!
Besides that I wanted to blog about something more Tourette's related, lol. When I went to interview the Tourette experts for my documentary, the Doctoral Fellow who both has Tourette's and researches it mentioned to me that she was going to be starting a research study for people with Tourette's ages 18 and older. She asked me if I was interested and if I would be willing to be a part of the research study when it was all ready and of course I said yes! So last week she got back to me and told me that the study was all ready to go and I let her know that I was still interested. So....I am all signed up to be part of the study! There are two parts of the study, the behavioral testing and the MRI scan. I am set up to do the behavioral testing part on April 4th and the MRI scan part on April 7th. During the behavioral testing part there will be pencil and paper tests, verbal response tests, and questionnaires. I am a bit worried for the MRI scan because I am not sure how long I will be able to stay still. I'm sure they will be understanding though considering this is is Tourette's study, lol.
Anyway, besides a bit of apprehension about the MRI scan, I am excited to spend more time with the doctoral fellow who has TS (because she is just the kind of person who is really awesome and intelligent and who you want to get to know better) and I am also excited to get pictures of my brain! I've always wanted to see my brain. And of course I am excited to be helping neurologists and researchers to learn more about Tourette's. The more that is known about TS, the more tolerance and acceptance there will be for those with TS.
So, I will definitively blog about how both parts of the study go in the next week or two! In the mean time, I have one more week of spring break and I am going to take advantage of the extra sleeping and relaxing time!
Saturday, March 17, 2012
What's been going on in the Tourette's/OCD community this week? (Week of March 17th)
"(March 10) "Talking to your class about Tourette's", Video
(March 10th) "How to Tell Someone You Have OCD, Without Embarrassing Yourself", Article:
http://thesop.org/story/20120310/how-to-tell-someone-you-have-ocd-without-embarrassing-yourself.html
(March 12th) "People make fun of me every day of my life. I’ve had enough.", Article about 26 year old man with Tourette's: http://www.thestar.co.uk/news/health/people-make-fun-of-me-every-day-of-my-life-i-ve-had-enough-1-4336410#
(March 12th) "Tourette and its co-morbid conditions: ADHD, OCD, Asperger’s" Article on NJCTS's TS Parents Online: http://www.njcts.org/tsparents/tourette-and-its-co-morbid-conditions-adhd-ocd-aspergers
(March 12th) "Leopard to make follow-up to BBC3 Tourettes series", Article: http://www.televisual.com/news-detail/Leopard-to-make-follow-up-to-BBC3-Tourettes-series_nid-1335.html
(March 13th) "There are Definite Possibilities for people with Tourette Syndrome", Article by Logan Kurtz on NJCTS's Teens4TS blog: http://www.njcts.org/teens4ts/there-are-definite-possibilities-for-people-with-tourette-syndrome/
(March 13th) "It's OK to have Tourette's Syndrome", Article: http://cmenyart1.hubpages.com/hub/livingwithtourettes
(March 15th) "A short video about Tourette's syndrome, and my personal thoughts", Video:
(March 15th) "A glimpse at life with Tourette syndrome", Article about a 12 year old with TS educating a class about her condition: http://ns.gmnews.com/news/2012-03-15/Front_Page/A_glimpse_at_life_with_Tourette_syndrome.html
(March 15th) "PIAA BOWLING CHAMPIONSHIPS: Management skills at work", Article about Johannah Joseph, Tourette's, and bowling: http://www.pennlive.com/newsflash/index.ssf/story/piaa-bowling-championships-management-skills-at-work/bb30c7ab47d54aca9575391d4d1c9635
(March 17th) "Tourette's Syndrome Doesn't Stop N.Y. Co-Ed's Dreams", Article: http://abcnews.go.com/Health/tourettes-syndrome-stop-ny-eds-dreams/story?id=15937604#.T2SFaB07OPY
(March 17th) "Bowling for strikes, local high schooler battles Tourette's syndrome", Video and Article: http://www.whptv.com/content/Lancaster/story/Bowling-for-strikes-local-HS-battles-Tourettes/8KuCkoOVkE2Oq0T2D5tqYg.cspx
Friday, March 16, 2012
Presenting my Tourette's Documentary to my Senior Class
It feels so weird knowing that everyone in my class knows that I have Tourette's now. I made a decision that when presenting my documentary to my class, I was going to do it the right way. I was not going to stand up there and say "I made this documentary just cause.....I felt like it....", nope! I promised myself that I would take ownership of Tourette's, I would be proud of my advocacy, and I would not hide behind my diagnosis.
People know when you are ashamed of something, and that can make you a target of gossip or bullying. But if you really take ownership and are not ashamed of your difference, others can feel that. Others will follow your lead and will feel more comfortable around you if you are comfortable with yourself, and that means being comfortable with even your differences.
People see or hear me tic, people ask about it all the time, and I felt that this was not only the perfect opportunity to show other people that I was comfortable and okay about my Tourette's, but also the perfect opportunity to just answer everyone's question all at once. haha, essentially a "Yes I have Tourette's! Now you can stop asking!"
It was simple, all I had to do while introducing the documentary was say. "The documentary is about Tourette's Syndrome, a disorder that I along with many many other people all over the world have". So that's exactly what I did.
So many of my peer's, teachers, and friends have been coming up to me and telling me how much they enjoyed it and how impressed they were with it. Everyone is being genuinely respectful and people really seemed to enjoy watching it. I have been talking with people in my class that I have never talked to before, and I feel as if this whole experience has made me more confident and comfortable not only about Tourette's but also about myself as a member of the senior class and myself in general. I've been ticcing a lot less today and yesterday in my classes than I normally do. Maybe this is because I am not so terrified that people will start asking me about my tics in class now and feel more confident about Tourette's, or maybe it's because today is my last day of school before two weeks of spring break and I am the opposite of stressed.
And my college adviser continues to rave about the documentary as well! I just went to see her to ask her some questions about college, and she mentioned that she is still raving about my documentary to everyone and has shared the documentary links with the entire college counseling office, and with lots of other people all over the school! :)
People know when you are ashamed of something, and that can make you a target of gossip or bullying. But if you really take ownership and are not ashamed of your difference, others can feel that. Others will follow your lead and will feel more comfortable around you if you are comfortable with yourself, and that means being comfortable with even your differences.
People see or hear me tic, people ask about it all the time, and I felt that this was not only the perfect opportunity to show other people that I was comfortable and okay about my Tourette's, but also the perfect opportunity to just answer everyone's question all at once. haha, essentially a "Yes I have Tourette's! Now you can stop asking!"
It was simple, all I had to do while introducing the documentary was say. "The documentary is about Tourette's Syndrome, a disorder that I along with many many other people all over the world have". So that's exactly what I did.
So many of my peer's, teachers, and friends have been coming up to me and telling me how much they enjoyed it and how impressed they were with it. Everyone is being genuinely respectful and people really seemed to enjoy watching it. I have been talking with people in my class that I have never talked to before, and I feel as if this whole experience has made me more confident and comfortable not only about Tourette's but also about myself as a member of the senior class and myself in general. I've been ticcing a lot less today and yesterday in my classes than I normally do. Maybe this is because I am not so terrified that people will start asking me about my tics in class now and feel more confident about Tourette's, or maybe it's because today is my last day of school before two weeks of spring break and I am the opposite of stressed.
And my college adviser continues to rave about the documentary as well! I just went to see her to ask her some questions about college, and she mentioned that she is still raving about my documentary to everyone and has shared the documentary links with the entire college counseling office, and with lots of other people all over the school! :)
Monday, March 12, 2012
Trying to Help out a Little Guy with Tics :)
This morning I went to the shoulder doctor with my mom (who just had shoulder surgery) because her appointment was right after my psychiatry appointment. While I was sitting in the waiting room, a 4 year old boy, his dad, and his grandma came in. The boy was frequently moving his arms, neck, and shoulders and I'd have to say, I know tics when I see them. The grandma kept bugging him about it and asking him "I've noticed your moving your shoulders a lot. Are they tired? Are they bothering you? Are they sore?" The boy answered "No" to every question and while she was talking about it, his movements really increased. I really felt for the little boy, and remembered all those years of not knowing why I ticced yet still having to dodge other people's questions or try to make up something that sounded legitimate. So I decided to write a note on a piece of paper. I wrote down on the paper that she should get her grandson checked out for a transient tic disorder or Tourette's Syndrome and that she should bring him to a pediatric neurologist. I wrote that telling him to stop will only make it worse. Then when the family came back out, I dropped the note in the grandma's purse without her noticing. I don't know if she will ever find it in there, but I sure hope she does. I asked the people on my facebook page and on twitter what they would have done in this situation and if they think I did the right thing. So far I am getting very positive comments. Here are some of the comments I have gotten so far.
" I think that is pretty awesome actually"
"As a mom, I would have been eternally grateful to you! Moms share info - it's what we do. One of us can't possibly know everything so we depend on the info of others to help guide us in raising our children. I can only imagine you expressing something like that thoughtfully and compassionately. Personally, I would have been open to you even saying it to me directly - unless my child was old enough to have been aware of our conversation. Great job thinking of writing it down!"
"I think what you did was brilliant, More awareness is definitely needed, I wonder if posters in dr surgeries would help?"
" I think you were very brave to want to try to help. I'm way more pushy, probably because I'm old! But, I would have struck up a conversation if possible, and asked benign questions like "does he have occasions where he has involuntary moment when he get's stressed, or worried"? And, I love your comment about how he might have a transient tic disorder. Because, that doesn't try to diagnose, but just helps her pinpoint that it could be a neurologically based condition and give them a direction to go in. When you feel more comfortable, you might mention all that you went through to discover the cause of your symptoms, and how you hope that sharing might help them. Very brave"
"I think you did exactly the right thing! My youngest started recently and I find it so much easier knowing from
his brother. Hope that grandma finds the note!"
"Great job, thats the goal, to help others"
"Oh sweet heart you absolutely did the right thing, and you re so brave!! Im proud of you! I wish someone wouldve done that for my parents. They would always tell me to just "cut it out". Even now that my son has Tourette's too my Dad still thinks its caused by being nervous instead of a nerological disorder. Pisses me off, but oh well, some people dont like "labels" and so they ignore their childrens needs. Hopefully you pointing it out to that family will make a difference in that childs life."
I think I did the right thing because my life as a child would have been 100X easier if someone had given me or my mom the answer we had been looking for written out on a note like that. I wish someone would have done that for my parents. My parents told me to "cut it out" and "stop it" all my childhood and never thought that something could be neurologically wrong. My parents had a hard time accepting the diagnosis, but I think that things would have been better somehow if I was diagnosed when I was younger. I really hope that I made a difference in that child's life. Maybe I was meant to be in that office today so that I could write the note and maybe I made a difference in this little boy's life. I sure hope so. :)
Besides this, I am going to be showing my TS documentary to my senior class tomorrow. I've planned out what I am going to say to introduce it, which has included practicing time and time again while in the shower. And I am going to meet with the tech teacher so she can show me how to set up the tech stuff in order to show the documentary. I sure hope all goes well tomorrow. I realize that showing my documentary will probably open people up to asking questions, telling me what they thought about the documentary, or talking to me personally about Tourette's, but I seem to be feeling okay with this. When I show my documentary, I will be bringing all of my classmates into my world, even if just for 30 minutes. I want them to know more about Tourette's, know more about what it is like to live with it, and hopefully help increase their compassion for any other type of differences that a person may have.
" I think that is pretty awesome actually"
"As a mom, I would have been eternally grateful to you! Moms share info - it's what we do. One of us can't possibly know everything so we depend on the info of others to help guide us in raising our children. I can only imagine you expressing something like that thoughtfully and compassionately. Personally, I would have been open to you even saying it to me directly - unless my child was old enough to have been aware of our conversation. Great job thinking of writing it down!"
"I think what you did was brilliant, More awareness is definitely needed, I wonder if posters in dr surgeries would help?"
" I think you were very brave to want to try to help. I'm way more pushy, probably because I'm old! But, I would have struck up a conversation if possible, and asked benign questions like "does he have occasions where he has involuntary moment when he get's stressed, or worried"? And, I love your comment about how he might have a transient tic disorder. Because, that doesn't try to diagnose, but just helps her pinpoint that it could be a neurologically based condition and give them a direction to go in. When you feel more comfortable, you might mention all that you went through to discover the cause of your symptoms, and how you hope that sharing might help them. Very brave"
"I think you did exactly the right thing! My youngest started recently and I find it so much easier knowing from
his brother. Hope that grandma finds the note!"
"Great job, thats the goal, to help others"
"Oh sweet heart you absolutely did the right thing, and you re so brave!! Im proud of you! I wish someone wouldve done that for my parents. They would always tell me to just "cut it out". Even now that my son has Tourette's too my Dad still thinks its caused by being nervous instead of a nerological disorder. Pisses me off, but oh well, some people dont like "labels" and so they ignore their childrens needs. Hopefully you pointing it out to that family will make a difference in that childs life."
I think I did the right thing because my life as a child would have been 100X easier if someone had given me or my mom the answer we had been looking for written out on a note like that. I wish someone would have done that for my parents. My parents told me to "cut it out" and "stop it" all my childhood and never thought that something could be neurologically wrong. My parents had a hard time accepting the diagnosis, but I think that things would have been better somehow if I was diagnosed when I was younger. I really hope that I made a difference in that child's life. Maybe I was meant to be in that office today so that I could write the note and maybe I made a difference in this little boy's life. I sure hope so. :)
Besides this, I am going to be showing my TS documentary to my senior class tomorrow. I've planned out what I am going to say to introduce it, which has included practicing time and time again while in the shower. And I am going to meet with the tech teacher so she can show me how to set up the tech stuff in order to show the documentary. I sure hope all goes well tomorrow. I realize that showing my documentary will probably open people up to asking questions, telling me what they thought about the documentary, or talking to me personally about Tourette's, but I seem to be feeling okay with this. When I show my documentary, I will be bringing all of my classmates into my world, even if just for 30 minutes. I want them to know more about Tourette's, know more about what it is like to live with it, and hopefully help increase their compassion for any other type of differences that a person may have.
Saturday, March 10, 2012
Saw a Musical with My Best Friend and Boy Friend! Excitement made my tics bad during the day, but they calmed down after school!
Yesterday was my last day of school for the week since it was Friday, and I was excited because after school I was going to hang out with my best friend (Tie Dye Socks) and my boy friend (Speed Racer). We were all going to see the school musical together and I was pumped! This means my tics were way worse on Friday though. I was doing a lot of my loud yelping vocal tics near the end of the day all through History class and my last period free period. During last period I sat next to my friend who is a Junior and was ticcing a lot! She knows about my Tourette's and didn't react to my tics at all, no matter how loud they were. A sophomore boy in the room was not however, so used to Tourette's. He turned around to face me from an adjacent couch and said ""I'm sorry, but what was that loud noise?". I think he thought it was my computer or a fire alarm of sorts because he seemed concerned like maybe he was supposed to react to it by going down in the basement, lol. I replied "Oh, I have Tourette's Syndrome. That's a vocal tic". He looked very surprised by this and my guess was that he was trying to contemplate if that sound could in fact come from a person. None the less he said "okay" after a second of thinking and went back to whatever he was doing and I just kept on ticcing. No one bothered me about it or drew any more attention to it after that. It's that easy when the school has been educated about Tourette's by Marc Elliot :)
The room started to fill up with people shortly after that because school had let out. I was beginning to become more self-conscious about my tics because they were particularly loud, but had to stay put because Tie Dye Socks was going to meet me there so we could go back to my house together. I stayed there for about 5 minutes after the room started filling up, and even someone from my class who knows about my Tourette's was startled by the yelping and couldn't keep herself from looking over once or twice. Thank god Tie Dye Socks came to rescue me so I could leave.
We both walked out to the parking lot and I drove us back to my house. My tics almost immediately calmed down because I just feel so comfortable around Tie Dye. We both greeted my poodle, played with her a bit, and talked. We started talking about my documentary, since I will be showing it to the entire grade on Tuesday! Turns out that she had yet to get a chance to really sit down and watch it and wanted to watch a part or two of it with me so she could comment and get my little annotations with it as well! We went out for ice cream with her mom, brother, and brother's friend and then came back to my house to watch some of the documentary. She was very impressed with it and liked it a lot!
It really got us talking about Tourette's and made me open up about it even more with her. She is my best friend, the person who knows me the best, and the person I always feel comfortable around, tics and all. Whatever issue I am having, I usually go to her because she always makes me feel so much better about it. While we were watching it, she mentioned that a few years ago even before I was officially diagnosed (probably sophomore year), a girl in her advisory asked "Why does that Ruthie always sniffle so loudly when we're taking tests?!?". Tie Dye told me that she turned around in a very sassy way, and defended me. She doesn't remember exactly what she said, but she knows she said it in a very sassy, defensive way, lol! This was very interesting for me to hear because I never really have a way of knowing how much people noticed my tics before my official diagnosis.
After we watched the documentary, Speed Racer came and picked us up. We went out to eat Arabic food and even though I ordered randomly off the menu, my meal turned out to be really good! I got these meat sausage looking things on top of pita bread with some salad on the side. I particularly liked the sauces, even though they were a bit garlicky. Tie Dye seemed to like the food too, but later that night said she could still taste all the garlic in her mouth! We talked about the environment, politics, school, sports, and so much more. We have odd conversations, lol.
We then were off to see the musical! We got there a few minutes late, but it was fine and they still let us in. The musical was so good! It was hilarious and just incredibly well done. I could rant about all of my favorite parts for quite a while, but I will not go into that. I wasn't ticcing at all hardly during the play because I was so engaged and entertained. At one part though, my loud sniffling started acting up but no one seemed to be bothered by it. Speed Racer confused the sniffling for crying though and turned to me and whispered "are you crying?". Lol, I assured him that I was not crying and later told him it was just another tic. All in all, a very fun night! Had so much fun before the play with Tie Dye and during dinner and at the musical. I think I will have some of the songs stuck in my head for at least a couple of days! It was just so catchy :)
The room started to fill up with people shortly after that because school had let out. I was beginning to become more self-conscious about my tics because they were particularly loud, but had to stay put because Tie Dye Socks was going to meet me there so we could go back to my house together. I stayed there for about 5 minutes after the room started filling up, and even someone from my class who knows about my Tourette's was startled by the yelping and couldn't keep herself from looking over once or twice. Thank god Tie Dye Socks came to rescue me so I could leave.
We both walked out to the parking lot and I drove us back to my house. My tics almost immediately calmed down because I just feel so comfortable around Tie Dye. We both greeted my poodle, played with her a bit, and talked. We started talking about my documentary, since I will be showing it to the entire grade on Tuesday! Turns out that she had yet to get a chance to really sit down and watch it and wanted to watch a part or two of it with me so she could comment and get my little annotations with it as well! We went out for ice cream with her mom, brother, and brother's friend and then came back to my house to watch some of the documentary. She was very impressed with it and liked it a lot!
It really got us talking about Tourette's and made me open up about it even more with her. She is my best friend, the person who knows me the best, and the person I always feel comfortable around, tics and all. Whatever issue I am having, I usually go to her because she always makes me feel so much better about it. While we were watching it, she mentioned that a few years ago even before I was officially diagnosed (probably sophomore year), a girl in her advisory asked "Why does that Ruthie always sniffle so loudly when we're taking tests?!?". Tie Dye told me that she turned around in a very sassy way, and defended me. She doesn't remember exactly what she said, but she knows she said it in a very sassy, defensive way, lol! This was very interesting for me to hear because I never really have a way of knowing how much people noticed my tics before my official diagnosis.
After we watched the documentary, Speed Racer came and picked us up. We went out to eat Arabic food and even though I ordered randomly off the menu, my meal turned out to be really good! I got these meat sausage looking things on top of pita bread with some salad on the side. I particularly liked the sauces, even though they were a bit garlicky. Tie Dye seemed to like the food too, but later that night said she could still taste all the garlic in her mouth! We talked about the environment, politics, school, sports, and so much more. We have odd conversations, lol.
We then were off to see the musical! We got there a few minutes late, but it was fine and they still let us in. The musical was so good! It was hilarious and just incredibly well done. I could rant about all of my favorite parts for quite a while, but I will not go into that. I wasn't ticcing at all hardly during the play because I was so engaged and entertained. At one part though, my loud sniffling started acting up but no one seemed to be bothered by it. Speed Racer confused the sniffling for crying though and turned to me and whispered "are you crying?". Lol, I assured him that I was not crying and later told him it was just another tic. All in all, a very fun night! Had so much fun before the play with Tie Dye and during dinner and at the musical. I think I will have some of the songs stuck in my head for at least a couple of days! It was just so catchy :)
What's been going on in the Tourette's/OCD community this week? (Week of March 10th)
(March 3rd) Meet Tyler, a young boy with Tourette's
(March 4th) An article about Jeff Koterba on Living with Tourette's: http://www.omaha.com/article/20120304/LIVEWELL01/703049991/116
(March 4th) Lena's "bad day" playlist d00d, a video about upbeat songs that help a teen living with Tourette's:
(March 4th) Emma says: Tic Update & Holding Tics In, Voice recording by a teen with Tourette's who is my awesome friend from Canada!: http://www.youtube.com/watch?v=Bjz4Z0iCTt8
(March 4th) Pittman (American Idol Contestant with TS) speaks out against peer bullying: http://www.areawidenews.com/story/1821235.html
(March 4th) Lubaroff, teacher and musician, doesn't let Tourette's define him: http://www.press-citizen.com/article/20120304/NEWS01/303040026/Lubaroff-doesn-t-let-Tourette-s-define-him
Daniel Radcliffe - Radcliffe Suffers from OCD and Encourages OCD Patients To Seek Help:
(March 6th) Pine Crest senior who is legally blind and hasTourette's to receive Spirit of Sport Award, Video: http://www.sun-sentinel.com/sports/highschool/trackandfield/broward/fl-blind-track-athlete-pine-crest-0305-20120306,0,4773340.story
(March 7th) Oak Park Native Fighting Tourette’s Through Boxing, Video: http://chicago.cbslocal.com/2012/03/07/oak-park-native-fighting-tourettes-through-boxing/
(March 7th) Meet Megan Phan, A college student living with Tourette's: http://www.thejibsheet.com/megan-phan-8813
(March 8) Utah Student with Tourette's wins writing competition, video: http://www.abc4.com/content/news/slc/story/Utah-student-with-Tourette-syndrome-wins-writing/opCYQLjF6kS9Q4XwDGL7_w.cspx
(March 9th) Reggie Yates to Host Tourette's Singing Show: http://www.list.co.uk/article/40934-reggie-yates-to-host-tourettes-singing-show/ http://www.thesun.co.uk/sol/homepage/showbiz/tv/4181927/Weve-got-Tourettes-singdrome.html
Thursday, March 8, 2012
My Experience with Sensory Processing Disorder (Another Co-Morbid Condition Associated with Tourette's)
So last week I wrote about my experience with Dysgraphia (a co-morbid condition associated with Tourette's), and this week I figured I would write about my experience with Sensory Processing Disorder. Below are two short paragraphs that help to define and describe SPD that I found on the SPD Foundation's Website.
"Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly."
-SPD Foundation
"Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or justmovement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold."
-SPD Foundation
The first signs of SPD showed up for me right around the same time as my first tics showed up, when I was 5 years old. I very very sensitive to any type of touch. I didn't like people to play with my hair, brush my hair, or touch me on certain parts of my body. When people tried to touch me too much, I would always protest and shake them off me the best I could. Sometimes I threw fits about this! For me my main sensitivity is touch. Another thing I could not stand was wearing tights! My legs were very sensitive and I refused to wear tights or pantie hoes. When my mom put tights on me, it felt like my skin was crawling and I just felt overwhelmed all over. I also never played with chalk because the sensation bothered me too much, and I never touched paper or anything dry after my hands had been wet because of the sensation.
Some other things that bothered me as a young child due to my SPD were the sensation of touching dirty cars, walking on garage floors either barefoot or with shoes, Styrofoam, the sound of chalk, the sound of department stores and the high pitched lights that only kids can here, the sound or feeling of hangers scooting on racks, metal rubbing together, having my fingernails or toe nails clipped, and the sound or feel of mechanical pencils. I am sure there was much more than just these things, but at the moment these are what I am remembering.
When I went to see my Occupational Therapist for my Dysgraphia, my mom told her about my sensory difficulties and she started treating me for SPD vid Sensory Integration Therapy. She had me rub a little plastic brush all over my legs, which I absolutely hated! And she had me play with certain toys or play on structures in her room in ways that were supposed to help increase my threshold of sensory tolerance. Even though I absolutely hated when she forced me to rub the plastic brush on my legs or when she did it herself, it was all therapy for the SPD that I needed at the time.
Today my SPD is much improved and I can tolerate a lot more sensory input and information than I used to be able to. I can now put up with wearing tights and being touched even though at times I really don't like it! I still cannot stand the feeling or sound of chalk, the feeling of touching paper after my hands have been wet, the feeling or sound of Styrofoam, the feeling of walking barefoot on the garage floor or basement floors, the sound of squeaking tennis shoes, the sound of mechanical pencils, and loud noises, and much more.
So that is my SPD in a net shell! Right now a fire alarm in my house is malfunctioning and is making a high pitched sound every minute or so. It is driving my SPD crazy nuts and my ears hurt from it! My head feels like it is very sensitive right now and overwhelmed by the noise. Hopefully it will stop soon, but my parents say they can't get someone out to fix it until tomorrow. I am trying my best to ignore it, but it is just so darn painful to listen to.
Some Video's about SPD:
"Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly."
-SPD Foundation
"Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or justmovement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold."
-SPD Foundation
The first signs of SPD showed up for me right around the same time as my first tics showed up, when I was 5 years old. I very very sensitive to any type of touch. I didn't like people to play with my hair, brush my hair, or touch me on certain parts of my body. When people tried to touch me too much, I would always protest and shake them off me the best I could. Sometimes I threw fits about this! For me my main sensitivity is touch. Another thing I could not stand was wearing tights! My legs were very sensitive and I refused to wear tights or pantie hoes. When my mom put tights on me, it felt like my skin was crawling and I just felt overwhelmed all over. I also never played with chalk because the sensation bothered me too much, and I never touched paper or anything dry after my hands had been wet because of the sensation.
Some other things that bothered me as a young child due to my SPD were the sensation of touching dirty cars, walking on garage floors either barefoot or with shoes, Styrofoam, the sound of chalk, the sound of department stores and the high pitched lights that only kids can here, the sound or feeling of hangers scooting on racks, metal rubbing together, having my fingernails or toe nails clipped, and the sound or feel of mechanical pencils. I am sure there was much more than just these things, but at the moment these are what I am remembering.
When I went to see my Occupational Therapist for my Dysgraphia, my mom told her about my sensory difficulties and she started treating me for SPD vid Sensory Integration Therapy. She had me rub a little plastic brush all over my legs, which I absolutely hated! And she had me play with certain toys or play on structures in her room in ways that were supposed to help increase my threshold of sensory tolerance. Even though I absolutely hated when she forced me to rub the plastic brush on my legs or when she did it herself, it was all therapy for the SPD that I needed at the time.
Today my SPD is much improved and I can tolerate a lot more sensory input and information than I used to be able to. I can now put up with wearing tights and being touched even though at times I really don't like it! I still cannot stand the feeling or sound of chalk, the feeling of touching paper after my hands have been wet, the feeling or sound of Styrofoam, the feeling of walking barefoot on the garage floor or basement floors, the sound of squeaking tennis shoes, the sound of mechanical pencils, and loud noises, and much more.
So that is my SPD in a net shell! Right now a fire alarm in my house is malfunctioning and is making a high pitched sound every minute or so. It is driving my SPD crazy nuts and my ears hurt from it! My head feels like it is very sensitive right now and overwhelmed by the noise. Hopefully it will stop soon, but my parents say they can't get someone out to fix it until tomorrow. I am trying my best to ignore it, but it is just so darn painful to listen to.
Some Video's about SPD:
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