Any parents of kids with Tourette Syndrome out here?

<p>OMG, Momom2 boy do I see my son in your posts. No matter how many times I ask him if he has any homework it only gets done the night before it is due, if not the morning that is is due. He is so easily distracted that even then it takes him hours to complete.</p>

<p>I do not know if he will stick with Engineering due to how intense the studies will be, however, right now I am just please he has a goal to look forward to.</p>

<p>It is such a blessing for me to read these posts and I am so happy to have found this site. Although I know my son is not the only Special needs/TS kid out there and I am not the only Special needs/TS mom, it still feels lonely. My hubby does not have a good handle on our son’s abilities and disabilities so he is of little to no support. Although we do have a TS chapter but I work full time and my hubby works out of state 4 days a week. With another child, boy 12 y.o., as well as my 16 y.o. TS son, I can’t take on any more than is on my plate right now.
Thanks for the info.</p>

<p>I just found this previous thread. Not sure how much has been updated and/or outdated by now, but it would certainly be worth looking into!</p>

<p><a href=“http://talk.collegeconfidential.com/financial-aid-scholarships/168781-aid-scholarships-ocd-tourette-syndrome.html[/url]”>http://talk.collegeconfidential.com/financial-aid-scholarships/168781-aid-scholarships-ocd-tourette-syndrome.html&lt;/a&gt;&lt;/p&gt;

<p>Here’s another for folks in NJ:</p>

<p>[Find</a> a Scholarship Program for Students with Tourette Syndrome](<a href=“http://www.collegescholarships.org/health/tourette-students.htm]Find”>Find a Scholarship Program for Students with Tourette Syndrome)</p>

<p>Lulu63, doesn’t the Concerta make your daughter tic more? My son isn’t taking anything for the ADD/ADHD because when he did OMG did he tic 100 time more than without it.</p>

<p>For anyone who may be interested: The center I collaborate with has their forum up and running now. It can be found at <a href=“http://www”>www</a>. joshuacenter. com (spaces removed). Scroll down the front page and look for the forum link.</p>

<p>The Joshua Center is one of the largest suppport centers for parents and kids with neurodevelopmental disorders. </p>

<p>Please stop by and say “hi”!!!</p>

<p>I just want to pop in and advise you to pay very close attention to the executive function issues. In my experience, that is what troubles so many kids in college.</p>

<p>TO ALL PARENTS WONDERING ABOUT ACCOMADATIONS/ETC…</p>

<p>I am actually a high school junior with Tourette’s. My vocal/motor tics are relatively mild but kinda noticeable if one actually cares to pay attention, but unfortunately I also seemed to have gotten every other little thing that comes along with Tourette’s (ADHD, OCD, anxiety, depression that has since been treated, bad phobias, executive functioning problems, etc.) but oh well, I manage. We had not reported any of my conditions to the school (even the Tourettes. seems my school is really oblivious, even with me siiting there tic-ing in class lol).</p>

<p>Anyway, I have always been top of my class, straight A+s/ As, despite all of these challenges. Last year, however, when I was a sophomore like the OP’s son, my grades began to slip. I had B+s interspersed throughout the year, and was in danger of getting B+s for the year, as well. I KNEW that I knew the work, but when I took tests, I’d never be able to finish, or I’d have to rush through it to finish on time, thereby having less-than-stellar effort throughout. I <em>begged</em> my parents/guidance to get testing/504, because I KNEW that there was something wrong there. I told my guidance counselor I had ADHD (wasn’t ready to disclose the rest), and she said I <em>might</em> be able to get a 504 with that, but it would be unlikely. Despite being a Neurologist, my mom (and dad) agreed with her. I had to work my a$$ off in the end, barely ever sleeping, in order to finish the year with all As. But no one would believe that I had a problem because I still managed to get such good grades.</p>

<p>This year, my first quarter had about 50% B+s and Bs, more than I’d ever had. And when 2nd quarter was about halfway through, it looked to be the same. FINALLY, my parents got me tested, and my mom warned that they’d probably just recognize the ADHD/executing functioning stuff during the test, but that it would likely not be enough to get me accommodations.</p>

<p>Well, 2 weeks later we got back the results, and everyone was shocked: In addition to the stuff we’d already known was there, I had a HUGE processing deficiency that had gone undetected even though I had been insisting for more than a year that I had a problem. My parents and the guidance department apologized for not believing me earlier (as if that made everything all better. but whatever :confused: ) and immediately issued me a 504, granting me extra time as well as anything else I thought I needed. I decided to just stick with extra time, as well as a suggestion that teachers give me notes if I ever ask for it (I could have made it mandatory, but didn’t want to be a burden to them).</p>

<p>The week I got the extra time (time and a half), I had 4 tests. I got a 95 or above on * every single one*, when the week before I had had a 76% in math and a low 80 in physics, etc. It was great to do so well, but bittersweet, because I would have to now make up for those shoddy first 2 quarters in the last 2 (which I have been doing tremendously). Also, I realized that if they had all believed me when I first started suggesting I had a more significant problem than they thought (which really started at the end up freshman year, but I got more persistent sophomore year), I could have had an A+ in every class I’d had an A in.</p>

<p>I also just got back an email 2 days ago approving me for extra time on SATs/APs. I took the Chem SAT II last year, and though I only got like 5 wrong, I didn’t answer about 20 of the questions because I didn’t have time to finish. But I did realllyyyy well on my SAT I (because I studied for them for more than 9 months, knowing that no one believed me so I’d have no extra time, and worked my butt off), so they had at first refused to give me extra time despite the <em>clear</em> documentation of its necessity. But after an appeal, where they were given statements from my teachers indicating that the time in school had boosted my grades drastically, they agreed to approve me for accommodations.</p>

<p>SO, moral of the story: If you are seeing a decline in schoolwork (or even if it has always been a little low and you know your child is capable of doing well), immediately push for testing! And get outside testing (as I did), because school-appointed testers will almost always insist there is nothing wrong whatsoever, even if you can only finish 1 problem out of 20. But the school can’t contest clear data from outside professional neuropsychologists, so go with those. And even if your kid’s grades have dropped, but he/she is still getting amazing scores, if they have dropped at all, that could be a sign of a problem. It is unfair to them, even if they still outperform other children, because they are technically not on a level playing field, and could potentially do ** even better ** if given the proper accommodations. If an amazing runner was still faster than his competitors when he had a broken foot, would you still make him run with such a setback? No, because even being faster, he could still be **even more faster<a href=“excuse%20my%20poor%20grammar%20there,%20lol”>/b</a> if given a fair shot with a level playing field. And don’t let the school/College Board tell you you are doing fine anyway, so it doesn’t matter, because <em>you</em> know that something is wrong with the situation.</p>

<p>If anyone has any further questions, feel free to PM me.</p>

<p>P.S. My 9 yr old brother has everything that I have x100. And my older sister, even though she doesn’t present with Tourette’s, has been ruled as an incomplete-case (or something of the sort, don’t remember exactly what they’ve called it), because she has OCD, horrible co-dependency issues like no one I’ve ever seen, extreme anxiety, and some other stuff, so although the tic-ing isn’t there, the co-morbidities of Tourette’s show that she has the gene and is a carrier for everything. Oh boy, aren’t family genes just the greatest? <em>sarcastic eye roll</em> I am lucky to have a great support system in my family, though that is likely because all of us face similar things. So anyway, if anyone wants to just talk about Tourette’s or any other of these conditions, whether it is you guys as the parent, or if your child is having difficulties and could use someone to talk to who has gone through similar things, I’m always open to talking.</p>

<p>b2d94, thank you for giving such a comprehensive, personal, insightful testimonial. TS can be such a difficult condition to understand.
I am impressed that you, apparently, do let TS define you.</p>

<p>Actually, I don’t let it define me whatsoever. In fact, no one apart from my family and my 3 closest friends (and the guidance counselor as of last week-- I only addressed TS during my college meeting with her, wondering if I should disclose.) knows I have TS. Although it does affect my life, I tend to ignore it for the most part.</p>

<p>The only reason I went so in depth was in an effort to show that when someone suspects a problem and needs accommodations, they should trust their instincts and try to get the help they need, because it could benefit them tremendously.</p>

<p>But if I were to define myself, I’d start with words like writer, dancer, curious, loves languages, loves to learn, etc. TS wouldn’t even come into play. Yeah, I have it, but it in no way defines who I am.</p>

<p>B2D94 - Thank you SOOOO much for such a thoughtful post. I met with the school resource officer and we were supposed to get back together again after my S’s spring break, but such a meeting never materialized (and I also became very busy after my mom had to have an unexpected surgery).</p>

<p>I’m not sure about having my S tested because he doesn’t seem to have any processing deficits. Then again, you mom is a neurologist and she didn’t note yours and you were still performing very well. He hasn’t been tested since third grade and maybe I should have him tested. At minimum I WILL establish a meeting with his teachers at the start of the new school year to explain his executive functioning challenges. If I do get him tested, it will absolutely be with an outside neuropsychologist.</p>

<p>I greatly appreciate your taking the time to write. Your post has really got me thinking.</p>

<p>By the way, executive functioning disorders can in some instances allow for a 504 all on their own, depending on the situation.</p>

<p>And I’m happy that I could get you thinking. Lol.</p>

<p>Good luck, whatever the outcome! :)</p>

<p>I have not had a chance to read this entire thread, but I want to point out that Tim Howard, goalie on the U.S. National Soccer Team and also goalie for Everton of the English Premier League, has Tourettes. He is very open about and has talked about it in a number of interviews and articles.</p>