Kristin's Question: Did you have to have an IEP in school? Were any special concessions made for you? I have a son in the 3rd grade, newly diagnosed. He's having difficulty with comprehension and I'm not sure how much is the TS. I think his teacher believes it's not so much the TS as I believe it is. His tics are fairly mild and he does seem to be suppressing them while in school. Maybe that's why they think it's not so much the TS - they don't
realize TS is more than the tics? Any advice you could give me would be appreciated.
So glad you found my facebook page and that you asked me a question about Tourette from there! I am more than happy to answer your question in this blog post! Hope my answers and advice help! In response to your first question, No, when I was younger and was in grade school I did not have an IEP. But as I got older I was given the much needed accommodations in school starting in 9th grade. I am currently a senior in high school. I came across a quote the other day that I think is so true for many of us with Tourette's Syndrome.
"Intelligence can disguise disabilities and disabilities can disguise intelligence" - Kathy Giordano
This was so true for me when I was in grade school. My mom tried and tried and tried again to get me an IEP, but the school just wouldn't give me one. She later told me that the school wouldn't give me an IEP because even if I had reasons to need an IEP, they weren't going to give me one because I tested too well and because I was too smart.
I think this was a real mistake. Just because I was intelligent, doesn't mean that I wouldn't have really benefited from accommodations in school. I have Tourette's Syndrome, and many associated conditions that come with Tourette which include OCD, Anxiety Disorder, Panic attack disorder, Dygraphia, Sensory Integration Disorder, and difficulties with processing speed as well as what is being called a math calculation disability (in other words I can't do math in my head, but give me a calculator and watch me excel in calculus).
These disorders didn't just pop up in 9th grade (which was the first time I was actually given accommodations in school). I lived with these disorders even more so in grade school. Even though my intelligence disguised my disorders, without proper accommodations in grade school, I failed to learn my multiplication tables, long division, proper cursive, how to use and read a ruler properly, roman numerals, and much much more. With accommodations later, I was able to catch up with my peers, but it was not until I was given the extra time and attention I needed that I was able to learn what I was unable to in the past.
In 9th grade when I received a lot more of a proper diagnosis for some of these disorders, I was given an action plan (very similar to an IEP of a 504 plan but for independent schools). My action plan tells my teachers about my various diagnoses. It allows me to have extra time on every in class assignment, essay, or test and on out of class assignments if I need it. I have permission to leave the room when I need to due to tics or anxiety, and if I need to, I can take my tests in a separate room. I usually don't need my own room for just regular tests, but for larger exams I have chosen to take them in a separate room in the past so that I won't be so focused on how my tics may be affecting the other students.
For the ACT, I got awesome accommodations thanks to the letter my neurologist wrote and thanks to the wonderful school learning specialist who advocated for me. I was allowed to take my ACT with double time, in a separate room, over multiple testing days, with a laptop to write my essay, and I could just circle the answers on the sheet and didn't have to bubble on a scan tron. I truly believe that I would have done so much better in grade school if I was given these kinds of accommodations back then. Without them, no one could see my true potential.
I had so much trouble with comprehension in grade school, and it certainly was not because I wasn't smart enough to learn the material. No one really knew just how much my associated conditions affected me. In grade school my ADD made it hard for me to concentrate, my OCD made me repeat the teachers words over and over in my head and write out her words with my fingers over and over again (which meant no way was I paying attention), my anxiety made me feel rushed and anxious on tests, and my tics made me distracted and made me run out of time to pay attention or to take my time on tests. No one really knew that all of this was going on for me in my head.
There is probably a good chance that you may not know everything that is going on in your son's head. He could have OCD, ADD, ADHD or many other things that make it hard for him to pay attention in class and really have the time to process what the teacher is saying. Another thing that really could be effecting his ability to comprehend the material is suppressing tics as you said. When someone suppresses tics they can't think about anything else pretty much besides suppressing the tics. My suggestion would to be to really educate his teachers about TS. Let them know that TS is so much more than tics by calling them up on the phone to have a conversation or to arrange a in person meeting. Tell them your concerns about the suppression of the tics and how his associated conditions may be effecting him. Find out if there is any way to make your son feel more conferrable with letting out his tics so he doesn't have to focus on them so much.
Some kids and parents find it really helpful to educate the class about what TS is and what tics are. Sometimes this makes it much easier for a child to not focus so much of holding their tics back, so they can focus on what is being taught. I cannot stress how important direct communication with the teacher is for young kids with TS! In my opinion one of the most important things for a child with TS to know is that everything will be okay and they will still be accepted if they can't suppress their tics or if they decide to let
their tics out so they can finally focus in class!
Also my last piece of advice for you is to really sit down when you have time and watch the new TSA web series "Tourette Syndrome in the Classroom, School and Community". I think every parent with a child with TS should really watch this. It has fantastic advice for how to really help a child who has TS in the classroom, school, and community succeed. Talks about IEP's, accommodations, 504 Plans, testing, school, educating the class about TS, and just about anything else Tourette. Here is the link for that! You can also order it as a 2 part DVD set from the national TSA. http://www.tsa-usa.org/ZEdDVD/MainMenu.html