Some support would be nice!!!!

Karen - posted on 05/13/2010

Go to the national tourettes association site at www.tsa-usa.org. You can find out where the closest TS Support Group is to you. These groups can be life changing for you and your child. Our's here in our town is wonderful. While you are on the tsa site take some time to read as much as you can! There is so much incredible info on here. There is even an education section where you can print off TS info specifically for your child's teacher that talks about learning disabilities that typically come along with TS. Also, the more you know about TS and OCD the more you can help your child.
I have two kids with TS, OCD and ADHD. Hang in there!

Leslie - posted on 05/13/2010

When my daughter was little, she was diagnosed with ADHD and we gave her medication for that...Her IEP was centered around the ADHD. She did well for a while, but I was always searching for something. I knew that ADHD was not the only concern. I truly believed that she had Asperger's Syndrome because of her sensory issues and because she "marched to the beat of a different drum." Her intelligence is normal, but she had reading and math learning disabilities. Anyway, her testing always showed that she did not have autism spectrum disorders...but she struggled with the nuances of language and conversation. She was unable to carry on conversations with her peers without interrupting; she had poor volume control, speaking loudly and sometimes over others.

We re-tested her recently and her diagnosis still included ADHD, but also OCD and TS. It changed our course of treatment dramatically. We are more focused on the OCD now than anything else, because it affects the other things too. What I have learned through occupational therapy is that my child can be so distracted by the way her clothes feel that she cannot sit in a desk. She is very literal....One of her teachers casually remarked that taking a bath is like bathing in your own dirt and sweat; she has been unable to take a bath since then and now showers obsessively. OCD is a much different disorder than I knew. I have learned so much about how it controls her life...her learning, her relationships, and even her sense of space. I never knew how awkward she felt, but she is very unbalanced and physically clumsy. I had never realized this until we started the occupational therapy.

My point is...diagnosis is important because it helps you come up with a plan. If what you're doing seems to be working, putting a label on it doesn't matter.

My girl was kicked out of a private school when she was 3 for not respecting other kid's space. In kindergarten, her teacher stuck her in a corner by herself with some toys and told me she didn't have time to deal with her, and that her crying was constantly disrupting her classroom. In first grade, she went to the principal's office almost daily. The principal once called me and asked if she was schizophrenic because she played with imaginary friends...Well, what would you do if you were alienated by your teachers and classmates?

Scotie now envisions herself a great writer who is expected to be quirky and ecclectic....She plans to dress like a bohemian and tell great stories. She values her friendships, and she feels sorry for the kids who won't give her a chance...It's their loss, she says. I still worry about her, and I never know what our next challenge is going to be...and I have days where I think I just can't deal with it anymore...but I really wouldn't give up Holland for Italy.

I have not read any studies on how puberty affects TS or OCD or ADHD...but I do know that my son and my husband have both told me that they would feel angry, violent and aggressive...and they didn't have any of the before mentioned challenges. I would expect that it would be even more difficult for a boy with TS and OCD.

Dana - posted on 05/12/2010

Emma,
I feel for you, I really do. I know how hard it is to feel like you have no support or nobody that understands. I felt that way before too. My son was diagnosed at 6 yrs old although he had symptoms for a year before that. He is 9 now. He's been in special ed classes since preschool, but that's because he has learning disabilities and speech problems. Luckily, I've never really had an issue with his school but it amazes me to hear about so many other schools that just don't get it. At least at your son's new school, being that it's a special ed school, they will understand how to teach him and how to deal with whatever issues he has(OCD, aggression, etc.). Does the school have an IEP for him? That is definetly crucial. It will tailor his teaching plan to his needs. If you don't have one, get one.
My son is an angel at school and then melts down the minute he gets home. It's so hard and draining for me sometimes! He's like Jekyl and Hyde. He can be sweet as pie one minute and then just so mean and angry the next. We did put him on medicine and started therapy last week so I'm hoping we'll be seeing some positive changes soon. I do think therapy/counseling is the best thing for them. It will help them learn how to control thier anger and mood swings. We've also found a TS support group in our area that I plan on attending later this month.
What has your son's neurologist said about his behavior? Maybe he could help you with some ideas on how to help your son through this. What did you mean when you said your son started collapsing? Does he actually pass out? Has he ever been tested for anything besides the Tourette's? My son is still going through testing. He has been tested for Fragile X Syndrome and his doctor seemed a little surprised that the test came back negative. Last week he had an MRI. Now in July he'll have some more tests done. They know he has TS, but they also believe that he has something else on top of that. They can't explain the learning disablilties and the regression, speech problems, poor muscle tone...etc. And you know doctors, they want to label everything! I have to admit though, I do want a diagnosis only because, for me, it would help to put an end to all the questions in my head, all the "why's".
Just remember you are not alone. If you ever want to talk you can always email me at dmbishop5@yahoo.com
Hang in there!