<p>Hi. My S, who is a hs soph, has TS. He is high functioning with relatively few additional problems like OCD or ADHD and relatively minor vocal and motor tics. But, he does have most of the neurological challenges (e.g., handwriting problems, poor executive functioning, lack of organization, inconsistent academic performance, etc.). I think his relatively mild TS presentation makes his teachers less likely to recognize these challenges and their relationship to TS. His grades have always been good, but now that his classes are getting more challenging, in addition to a gf, play practice, music, videogames, etc. his grades are dropping, or at least becoming less consistent. This is especially problematic should he ever miss a day of school.</p>
<p>I wish I would have had a 504 or IEP created for him back in 4th grade when his social immaturity was at its peak. I feel he is actually at a dsadvantage now being very attractive and intelligent, because his teachers (as do I, at times) tend to attribute his inconsistent performance to laziness and lack of self-discipline. However, I am finally meeting with the resource teacher tomorrow morning to discuss his situation.</p>
<p>I haven't been able to find an up-to-date message board where I can share academic concerns about my son. I was just hoping that if there are others on board here, we might link up and support one another. I am concerned about how my son will perform when on his own at college.</p>
<p>Hi Mom–
my neice was diagnosed as having TS. I’m aware of the TS website and I know they address educational issues. Don’t know if they have their own message board but it may link you up to a TS chapter in your area–
[Tourette</a> Syndrome Association TSA Home Page](<a href=“http://www.TSA-USA.org%5DTourette”>http://www.TSA-USA.org)</p>
<p>D had a major increase in tics during 10th grade. Her grades plummeted as well (she actually got a 2.3 average one quarter). I went to her school with all documentation and asked for 15 extra minutes on tests just to relieve some of her anxiety. They gave it to me without a formal 504 or IEP. The extra time did not carry over to AP classes so by the time she was a senior, she no longer had the accommodation, but also felt she no longer needed it. </p>
<p>Unlike your son, her major issues were (and are) anxiety and OCD. Her executive function was low in 5th grade when I had her tested but seems to have improved tremendously with age.</p>
<p>She is now in college and doing AMAZINGLY well. She never did this well (grade-wise) in high school. However she is home this week for spring break and I did notice a few new tics (shoulder raising) and increased older tics (eye squinting), but her vocal tics (which are the most bothersome for her) seem to have decreased.</p>
<p>Momom2–I had a very high functioning student with TS. I had no idea of his disability as he covered it quite well. It was his senior year and I had him in an AP class. He was a very diligent worker but seemed to be actually getting worse in the subject as the year went on (like he actually could no longer do things he once demonstrated). His behavior was quite worrisome as his stress level went just about through the roof. He would get stuck on particular lines of questioning (sort of OCD) and couldn’t seem to move on. </p>
<p>After talking with “mom” I was informed about TS. Mom didn’t want to bring it up at school because he did not want to be labeled. The GC and the school nurse immediately had a parent conference and we were able to get this boy some relief. The information completely opened my eyes to some of the things he had been doing (and how some of the things I had been doing were not helpful) and why. We were able to modify the assignments and tests and keep him in the AP class–none of the other students had any idea that anything was different.</p>
<p>I know very little about TS, but I would encourage you to let someone at the school know so they can keep an eye on him–just in case. They are usually quite discreet and your S would not have to divulge any more information than he is comfortable with–on the other hand, when (if) he is ready, he may want to educate his classmates on the syndrome.</p>
<p>Thank you all SO much for your replies. I had hoped we’d be able to skate by without having to alert the school. But, oh well. The TSA site does have some amazingly helpful information including a page (which I have printed out and given to the GC who has shared it with the Resource lady) pertaining to the neurocognitive and neurobehavioral deficits often accompanying TS.</p>
<p>Unfortunately, it is my impression that many students with TS do not go to the public schools and they are woefully unaware of TS many of the accompanying symptoms. I do aim to rectify this for my son’s benefit.</p>
<p>The TSA site does not have a discussion group or message board, so I greatly appreciate hearing from you all.</p>
<p>Queen’s Mom - your note was particularly reassuring. Thank you.</p>
<p>Mtnmomma - I appreciate the perspective of an educator, as well. It is good to know that concessions can have a positive impact.</p>
<p>My nephew has TS and is a college junior (he is actually graduating a year early). He sounds a lot like your son. My sister and nephew are very active in state and national TS Associations and are frequent speakers. My sister has a profession which has led her to be a strong advocate. If you want to send me a PM I can put you in touch with her.</p>
<p>I think actually tons of kids with mild TS go to school and no one ever knows it. I hesitated to post here because my son was diagnosed in middle school, but his tics were so mild most people didn’t realize what was causing them. He grew out of the annoying one (sort of a hiccup). Now I occasionally see him blinking or shrugging and realize he still has a few tics, but we never had to do anything about it. We were lucky that while he’s a bit anti-social, he’s never had trouble with school work. When he attended a tech university with more kids like him he was a lot happier though. Good luck the TSA site was very helpful way back when. I haven’t had to check it out in years.</p>
<p>We never did inform school, but did tell the sleep-away camps just in case they thought he was behaving weirdly.</p>
<p>My experience is extremely similar to that of mathmom. S was diagnosed around age 7 or 8; his tics (mostly shrugging, blinking and a throat-clearing) were worse when he was stressed or overtired, but could easily be mistaken for garden-variety movements. Thankfully if other kids noticed, they didn’t seem to tease or take it out on him. He outgrew it as a young teen, though every now and then he might tic a bit if he is super tired or paradoxically super relaxed. He was never at a level that warranted medication, and he has never had OCD, ADD, or any neurological or behavioral challenges. </p>
<p>I donate heavily to the TSA and think they are an outstanding organization. Good luck to you and your son.</p>
<p>I have TS that started around 7 years old (around 1970) and I’m 48 years old today. I still have TS with many facial and body ticks but the grunting has gone away (usually). I graduated with a Finance degree and have had an incredibility successful business career. </p>
<p>My extremely smart (much smarter than I) 7th grade daughter also has a mild form of TS and I have helped her through it. Have patience, understanding and let them know that it’s ok and that they are not a “freak.” Unless the TS is completely running the kids life and the TS is out of control, they will can be very productive and it should not be an excuse to underperform.</p>
<p>Thank you all, once again. I’m so glad I posted and so pleased with the reassurance you all have kindly offerred. I am connected to a local group called The Joshua Center. They are actually one of the nations largest groups, I think. A very good friend, coincidentally enough, is also one of the nations leading researchers on tic disorders and Tourette’s. So, we have the connections, but it’s not quite the same as having support from other parents of kids in similar predicaments</p>
<p>It seems that most of the kids, like Pizzagirl said, either are too challenged to go to school or mild enough that they go relatively undetected. My son has been very fortunate thus far, and I am sure he will manage to get by just fine, despite my neuroticism, and particularly if we get some minimal assistance from the school.</p>
<p>It is great to know that so many others have worked their way through school with Tourette’s and have found success and happiness.</p>
<p>Hello. May I add to this topic? My son is a Sophomore in HS and has TS,OD, ADD, ADHD, and low executive functioning skills. He is a great kid but is not in the least bit athletic, (he was always the last one picked in any sports he tried to play), he has only a few “friends” as he is in a small school and there is not an opportunity to make friends. So, he is socially isolated. He hates school because he has to try so hard just to get B’s and C’s and feels like he is just plain stupid. He is scared to off to college but says he really wants to. He is seeing a counselor to try and help him through his problems. He is on medication for his tics which only helps minimally and he cannot take anything for his ADD/ADHD as it only makes him tic far worse.
So, my dilemma is this… He wants to be an engineer what colleges are out there that will really, truly help him succeed? What do I need to do to choose the best one for him? There is so much material out there on colleges for students with disabilities but it is all so overwhelming to me.
I feel guilty enough for what my son has had to go through up until now and want to help him turn the tables in college.
Any help or advice that anyone can give would be so very appreciated</p>
<p>badfatty - I feel your pain. My S is also a sophomore. He originally wanted to go into acting. That really wasn’t going to work out in the long run given his tics. My S is now interested in computer science and digital media. I think what you might find is that a lot of kids with TS (and also with Aspergers) go into math, engineering, and computers. I think he will likely find several kindred spirits when he is around more folks in these areas. Do you live anywhere with a TSA Chapter?</p>
<p>We are fortunate in MO that we have a great center (The Joshua Center) that provides support for kids with TS.</p>
<p>My dilemma now is considering how much to disclose on college apps.</p>
<p>Good luck throughout this process with your S.</p>
<p>Yes, I am aware. And I have shared that with him, too. There have been other actor as well. I think Dan Ackroyd’s tics significantly decreased as he got older, though. My boy’s much more into game design and computer stuff, now. Still acts at school, but I’m fine with this trajectory.</p>
<p>My oldest son is mild Aspie and had some tics when he was younger but they faded when he stopped Ritalin so it was not true TS. I just wanted to point out that the school is not giving you “concessions,” it is giving you “accommodations.”</p>
<p>All of my sons are classified for various issues. I think people need to know that even if you are classified in 12th grade, that info does not travel to colleges unless you want it to. I do believe that extended time on SAT/aCT is reported, but I’m not sure. Only one of mine will need extended time and he’s a freshman. He’s dyslexic, so that is not being hidden from colleges…</p>
<p>Parents should not hesitate to seek accommodations or assistance for their children when the situation warrants it.</p>
<p>Extended time on the SAT is absolutely not reported to colleges. Many moons ago, they used to ‘flag’ the grades, indicating nonstandard test administration. I believe there was a lawsuit and the College Board stopped flagging them and started cracking down on allowing students accommodations. So, in short, it can be hard to get accommodations on the SAT especially if your student hasn’t had them in school but, if the student used them during testing, it will not be conveyed to the colleges.</p>
<p>Badfatty, Your son is still early in the process and he may change his mind in the next few years. For now, I would look for a way to support his current studies so he doesn’t get overwhelmed in high school. I would help him develop ways to keep himself organized (with folders, calendars, etc). As far as colleges… there are colleges that have good disability support. However, if 2 years from now he’s still struggling, I would consider starting at the local cc, maybe even part-time. It might be easier for him to have the security of home while getting used to the workload of college.</p>
<p>These are all very valid and thoughtful comments - and much appreciated.</p>
<p>Of course all kids are different, including those with TS. My son’s TS is not particularly impacted by stress. However, he does not have comorbid OCD. I guess the stress of any major employing “weed out” classes would constitute a serious consideration for any kid with any sort of anxiety, though.</p>
<p>For my S, it is really more a matter of having to have someone assist him with planning and organizing. Anything right in front of him and on his radar, is addressed. Anything due next Tuesday, for instance, is not likely to appear on his radar screen until Monday night, at the earliest. He has a couple of teachers right now who are good about making him write down projects that are due a week out, every day on his day planner until the day they are due. This has helped. Other teachers don’t seem to get it, no matter how much information I share with them, that regardless of whether or not he is ticcing, there are neurological challenges to consider.</p>
<p>We will DEFINITELY do a better job of setting accomodations (certainly a better and more appropriate word choice!) when he goes off to college.</p>
<p>MOMOM2,
Thanks for your words of support. It has been a long and very painful journey for all of my family but I think as the Mom I feel guilt that my husband does not understand. Therefor, I feel very alone when it comes to how to help my son and do what is best for him.</p>
<p>I have also wondered “How much to disclose” and I have come to conclusion that for the past 16 years I have tried to teach my son “just be who you are” and to never deny his strengths or his weaknesses as they make him the wonderful young man that he is. So, I have decided that I need to disclose everything to the colleges we apply to and if they do not accept him because of his TS, OCD, ADD and ADHD etc. then they never would have accepted him as an incredible young man who has lived with his disabilities since day one and yet has been able to “make it through the storm”. They would not have been there to help him when he needed it and that alone would set him up for failure. Plus, if they know ahead of time, they can help him from the onset which can only help set him up for success.</p>
<p>My only issue is what colleges out there can help him? If anyone has any experience please let us know. I have looked on-line and there are a few that look good but I don’t know enough about any of them and would love to talk/email to anyone who does have the experience.</p>
<p>Warm Hugs to all of the TS moms and kids out there.</p>
<p>My D was diagnosed with TS, ADD and CAPD (Central Aud Proc Disorder) in 7th grade. Our school system will only allow accomodations as her grades are very good. She is seeing a Neurologist that specializes in Tourettes. She exhibits most of the tics you mentioned above and they definitely increase with stress. She is a great math student but struggles a little in English/History and definitely exhibits anti-social behaviors or comments. It is so hard but she seems to be hanging in there. She is very athletic so this helps her vent her frustrations. She has been on Concerta and Sertraline for the past 2 years (with some adjustments) and it has helped immensely with her focus on homework. It’s not perfect but she is doing her best. So glad to see this forum! Great info. She is currently a freshman in high school and I have already started to worry about college!</p>