Student with Tourette Syndrome

<p>My sister Piper will be starting 9th grade at an elite boarding school this fall even though she has a severe case of Tourette Syndrome. Piper has body tics and vocal tics which she can not control and she is afraid other kids will shun her. Piper shouts out "Oh, God!" about five times in an hour long class and some students will find this distracting. However, I believe the students will eventually get used to it and learn to ignore her shouts and will be glad that she is included in class. Piper is excited to live in a dorm with other kids but she realizes her shouting will annoy some hallmates and when her vocal tics are really bad she will study elsewhere and sleep in the infirmary. Piper is a bright, pretty, talented girl and my family always jokes that "she could be a model, if she could only sit still for a picture." I think the kids will be able to accept Piper eventually but it will be very hard at first. Piper is insecure about her TS and is very afraid of being a social outcast! At her current school, many kids stare and giggle when Piper's head starts spinning or her arms move for no reason. Piper wanted to go to a special boarding school for kids with Tourette Syndrome but my parents really wanted her to try this "top" school because of its famous reputation and prestige. Does anyone have advice for Piper on how to deal with the teasing? Do people think she will be able to fit in at a regular school? Thank you!</p>

<p>At the right school, your sister can have a great experience. As much as many regulars on this board talk about academic ranking, fitting in to the culture is far more important to educational outcomes than the prestige, as students achieve more in an environment where they are accepted and happy.</p>

<p>Not knowing which school your sister will be attending (I guess that decision has already been finalized), I can't tell you much specifically about how your sister's time will be.</p>

<p>There are several excellent boarding schools that emphasize social development. Many even handle learning disabilities (dyslexia, et al). Not that TS is a learning disability, but schools that do work with this population tend to have cultures that are more accepting of individual differences.</p>

<p>My D attends one of these schools, and although she herself does not have a learning disability, at least one of her closest friends does.</p>

<p>Smaller schools with higher percentages of boarders also tend to be tighter knit communities where the influence of faculty can also positively affect the community to accept the differences of individuals within the community.</p>

<p>I'm sure your parents will be in very close contact with the school and in particular the house parents to make sure that the situation is well monitored. And I'd be willing to bet that her situation has been well discussed with the administration at the school already. They must be comfortable with it or I doubt your parents would be placing her there.</p>

<p>BTW, Piper is a terrific name.</p>

<p>There are many, many great boarding schools that would help your sister with her disability, feel comfortable among her peers, and soar academically.</p>

<p>To be honest, I think that it was a bad choice on your parents' part to send your little sister off to a school for prestige's sake. (I assume she was admitted like everyone else -- because of her academic and personal triumphs -- and that she is beyond capable of intense academics and pressure, but what about what suits her best? It doesn't seem like a great fit if they don't have specialists or have any other TS/other serious disabled students.) Did your sister want to go there? Can they accomodate her disability? Did you talk about this with the admissions office/infirmary/wherever beforehand? Are they aware, and do they have plans for acommodations? Do they have specialists? Are there any other students w/ TS? Has the school (or any faculty member there) EVER dealt with a serious disability like TS? Will she undergo any type of treatment while there?</p>

<p>I think that sending her off as a 13/14 year old to an intense academic and social environment (although she's more than capable) would be a bad decision. If I recall correctly, tics and outbursts can (and often do) increase under stress. At prep school, she will be studying all day, participating in EC's she likely has no experience w/ (say, crew or ultimate frisbee or a campus radio station, all of which are very rare at any middle or high school), as well as trying to make friends w/ a group of strangers who probably know nothing of her condition. ..On top of being sent away at age 13 and being ripped away from her support system. It's intense for all students, and I can't imagine what it would be like for a student w/ TS.</p>

<p>I would reccomend a small school, and highly recommend a school with TS experience.</p>

<p>I love the name Piper too!</p>

<p>I'm sure your sister is going to be just fine. The vast majority of students at all of these schools are good kids and she will get plenty of support, student and faculty alike. I wouldn't worry about a thing.
Just be sure she stays away from that Tommy Meister guy!</p>

<p>ops is spot on.</p>

<p>Your parents know her well and I applaud them for the decision to encourage her to compete against the cream of the crop. She's already made the first -- perhaps toughest -- cut. Wow! So, your parents think she can do it. The school thinks she can do it. I assume she thinks she can do it.</p>

<p>And why not? Sometimes, it's much easier to appreciate someone and look past their quirks and differences if you live with them. Most people have lived only with family members and people that we take for granted. But living together with people doesn't mean you have less tolerance for the people you live with. THAT ONLY APPLIES TO FAMILY! ;)</p>

<p>I've lived with or among people with various disabilities. The general rule is that people adopt a heightened awareness. Not just a tolerance, but an affirmative appreciation/advocacy role. It actually leads to a heightened sense of awareness and sensory perception once you break out of your personal cocoon and start putting yourself in the shoes of someone else who's different from you. (We're ALL different from each other and we're ALL weird in our own special ways, but sometimes it takes being with someone who is noticeably different from us to bring us around to that reality.) </p>

<p>I expect that there will be some people who (at first) will whisper, "Hey, did you check out that freshman who screams out in the middle of class?" But soon those whispers will be met with the advocates -- people who go beyond mere "tolerance" -- and they'll start hearing, "Yeah, so what of it? As if you're so perfect?" That attitude will grow. I think quickly. People will want to be helpful, not just tolerant. There will be many people who will be acutely sensitive to any special needs -- including emotional adjustment needs -- that she'll face.</p>

<p>I think the BS dynamic will promote this sense of community that supports her in ways that a day school experience can't quite attain.</p>

<p>I recall reading a story of a kid who had ADD/ADHD and refused any special accommodations on the principle that life won't be dealing him such help later on. He said that his homework took 2-3 times as long as it did for other kids and when he took the SAT he had a lot of blank answers each time time expired, but he got into a very good college and won a student of the year award. I read another story of a double amputee from the Czech Republic who moved to the U.S. when he was 10 and didn't speak a word of English and he plays on the football team as a nose guard, moving around on his arms, even sacking the QB.</p>

<p>It won't be easy. It wasn't easy for these other kids. But people are inherently wonderful. You see this in Piper and I'm sure that Piper will bring it out in others. There will be tough times, but I predict many more extremely rewarding and joyful times to make it worth the journey.</p>

<p>"Success isn't final. Failure isn't fatal. It is the courage to continue that counts." -- Some Sci-Fi space captain dude said that during a montage of scenes from various shows during an ad for the Sci-Fi Channel that I saw while watching Comedy Central.</p>

<p>As I've seen from experience, kids who come to school who are extremely different from others - I knew this student at my school who wore extremely strange clothes to class each day - were kind of wondered about in the beginning. I found myself wondering if I should be friends with this person... but once I began talking to them, I found that he was very nice and now I don't notice anything else. Like D'yer said, she might feel uncomfortable at first but I'm sure there won't be any problem after a few days.</p>

<p>Thank you all for your comments! There is no right answer to where Piper should go to school and I can see both sides. </p>

<p>Thanks for liking the name Piper. Her name means one who plays the pipe and she lives up to her name by playing the flute. Piper is the type of adorable little sister that you always want to hug and tell her how cute she is. However, I realize that other kids are not able to see past her condition and I have had to comfort Piper many times after school when she came home very upset that kids called her "Tic Girl" and "Spaz." </p>

<p>The school has no TS students and it will be challenge for teachers to deal with their first student with TS. Teachers need to realize that Piper can not control her tics and that she should not be punished for them. You are quite right that stress makes Piper's tics worse and therefore it is important for the teachers to be relaxed about them. When a teacher warns, "Piper, if you shout out one more time in class today, you will have to leave" that makes it worse and the added pressure makes it more likely that Piper will scream. </p>

<p>As for how Piper got accepted, she had a strong academic record but wrote her admissions essay on dealing with Tourette Syndrome. I'm sure this essay tugged at their heartstrings and had something to do with her acceptance, a form of special preference for a student who is unusual or brings a different perspective. There is no cure for TS and Piper will NOT undergo treatment. The medication has bad side effects and makes Piper sleepy. But her body and vocal tics do NOT cause her physical pain and the worst thing about TS is the social stigma. Feel free to ask any other questions and thanks again.</p>

<p>I have always thought my son might have a mild case of Tourettes, but never had it officially diagnosed. He has mostly outgrown his symptoms, but when he was younger suffered from all sorts of facial tics, coughing, jerking his head until his neck hurt, clearing his throat, etc. In any case, I found private school much more accepting of differences in students than our public school. The students, as a group, tend to be more mature (and intelligent); also they are expecting diversity and, in many cases, this is one of the reasons they applied to bs in the first place.</p>

<p>Yes - I was about to point that out. Depending on the school, most kids at private school are more mature, educated, cultured, and because of the diverse community, I would say they're more tolerant. I imagine she will find a group of friends who will completely look past her disability, but there will probably always be a few who snicker, etc. The thing that concerns me is the classroom/extracurricular environment.. does she test elsewhere in her current school? Does she play sports now (will prob need to play at prep school)? I don't think dorms will really be a problem, unless she pulls an all-nighter and is especially loud. Will she have a single room?</p>

<p>What was that "Just be sure she stays away from that Tommy Meister guy!" comment about, ops? Do you have a problem with me? :)</p>

<p>Nice try, Doctor. But I already PM'ed the OP to make sure he doesn't divulge whether sis is going to be at Exeter.</p>

<p>Yes, Piper takes her tests in another room so that other students can have complete silence on those days. Piper does not have any interest in sports but will be required to play some sports. Piper enjoys writing for the school newspaper as well as acting in school plays. </p>

<p>The biggest reservation the school had about accepting Piper was whether or not she should be allowed to live in the dorm. At first, the administration was afraid her vocal tics would be too distracting to other students. One teacher who lives on campus suggested that Piper live in his attic but Piper really hated that idea! A compromise was made where Piper will live in the dorm 4 times a week and in the infirmary 3 times a week so no one will be too bothered by her screaming. Perhaps by the end of the year, Piper will be able to increase her time in the dorm as kids become more used to her. Piper desperately wants a roommate and the full dorm experience as much as possible. However, the school didn't think it would be fair to place her with a random, unsuspecting girl who knows nothing about Tourette Syndrome. The school is trying to find a senior who could be Piper's roommate and act as her "big sister." Students often volunteer to help disabled or disadvantaged children who live in town and this "big sister" would help protect Piper and give her some support. The "big sister" would also be able to put this experience on her college application and it is something unusual to talk about in a college interview. Hopefully, the girls will bond and it will be a rewarding experience for both of them and they will both benefit. Piper doesn't really have friends at her school now and she needs help overcoming her shyness and needs someone to make sure she doesn't stay alone in her room on weekends.</p>

<p>It is nice to hear that the school is trying to be flexible in accommodating not only her desires but the interests of the dorm as a whole. </p>

<p>Looking back at the posts regarding the acceptance of kids with differences such as TS, I will agree that HS and even moreso in college she will find kids more accepting. Middle school is the age where kids start to notice differences and have yet to develop the social maturity to accept those differences. The social maturity develops quickly in HS and later. BS kids tend to be a bit more mature (partially screening and partially self-selecting), so I am optimistic as to her being accepted.</p>

<p>I almost forgot to mention my personal experience with a house-mate with TS at college. I lived as a boarder in a sorority house (of all places) my last year and a half at college. It was a small sorority (20 members) in a HUGE house (80 beds). They only had male boarders as they wanted girls to pledge rather than just pay the housing bill. </p>

<p>One of the other male boarders had TS, although not as severe of symptoms as Piper. In my time there, I didn't hear one unkind word said about his condition and actually he was well liked as he was a thoughtful and interesting person. I guess my mind slipped about him during this discussion because I never really thought about his difference. </p>

<p>I think as time goes along and the maturity of her peers becomes evident, her shyness will dissapate as she finds she is more accepted. I think the change of scenery will be a good start in this case.</p>

<p>I have a son with Tourettes. Since he was diagnosed at age 9 we have taught him that he should never let the TS hold him back and I am thrilled your parents are encouraging Piper the same way. I have known kids who have much worse vocal tics than Piper's (yelling out obscenities) and classmates have easily learned to ignor/be oblivious to these with the right modeling from a good teacher. If she has not read the book "Front of the Class" by Brad Cohen, she should (he is a nationally recognized teacher with TS and the book discusses his experiences in getting through school and college) The best thing she can do is be up front with people, tell them why she has the symptoms she does. It is amazing how quickly the teasing stops and the acceptance starts when a student is able to do this (my son had the nickname "tic boy")
By the way, my son, now finishing 11th grade,
has done some great advocacy work locally, state wide and nationally, and we are finding that colleges we might not have expected he would get into are interested in him because of the things he has done. He took those lemons and made lemonade!
Please wish Piper the best of luck!</p>

<p>Great post, djsmom. Your son sounds amazing and it's great for someone to weigh in who has been through this.</p>

<p>THAT'S IT? No story yourself? </p>

<p>MomofWildChild...and all you have for us is a "great post" comment?!?!</p>

<p>When I saw that MomofWildChild had added a reply to this thread, I said (to nobody in particular), "This is 'Must See CC!" </p>

<p>And then...that? It's like getting that "You're a Millionaire!" Publisher's Clearinghouse letter in the mail and finding out that you didn't actually win after all. In fact, you haven't even entered yet.</p>

<p>C'mon...SURELY you have a story or two for us. You can't keep that user name if you're not going to follow through and share a story that begins, "Tourette's Syndrome? HA! THAT'S NOTHING! Let me tell you about..."</p>

<p>;)</p>

<p>For all of WildChild's "accomplishments", Tourette's wasn't in the picture. Search my old posts and laugh and weep!</p>