Tourette Syndrome Support Group

Hi there everyone. I am new to this forum, but thought maybe I could find some help for my 13-year-old son. He is having trouble with school, and even though we have brought in a teaching assistant for him and cut back his work load, he is still having a very hard time. The biggest problem seems to be his inability to focus. He doesn't want to try medication for this as he already has a big enough daily dose of meds for his OCD, tics, anxiety, and depression. I was thinking that maybe someone here might have some non-medicinal ideas to help with his focus during classes.

Thanks.

Hello tatty2 and welcome to this site. Raising a child with tourette can be challenging indeed. You didn't mention whether your son has been diagnosed with adhd or add. I have read that focasing problems can occur with tourette, even without adhd or add due to the ticcing.

I raised a daughter with the same diagnoses plus the adhd. Even with medications, she had difficulty in school with focasing, due to her audible sensitivities, as every noise that most other children could block out, was a distraction to her, plus she had more tics at that age that interferred with her focasing. Around the same age as your son, she went into the "emotional support classroom", as there were only about 8 children in the class. She also had to have dexastrat for her adhd as she had to have something to help with her focasing. Dexastrat was the only stimulant that she could tolerate. It is a short acting medication with duration of 3-4 hours. Even at age 23, when she refused to take it anymore, she discovered how annoying she was to her friends. Knowing she needed it to continue her college education, she asked her Dr. to put her back on it. Life is now better for her.

I hated having her on any medication at all, but without it she simply could not learn.

Have you involved your state tourette syndrome association with school problems. They are advocates for ts and are able to help with your son's IEP. Also tsa.usa.org is the national website and they can refer you to your state chapter, and may have other information regarding school. I would suggest joining tsa and requesting their newsletter. I depended on that as well as the wonderful volunteers at my state tsa who were always available to listen to me, give emotional support, and suggestions.

There maybe others on the site who can give you other information, but please do not rule out medications. Children dealing with tourete are dealing with a lot. My daughter's Dr. said it was like having a gorilla on her backl. That's a lot to deal with.

She also was concerned with her image, of course, and didn't like being in emotional support class. She was mainstreamed the next semester but had access to the special needs teacher whenever she needed it, and was also able to go to the quiter classroom to do her work, if needed.

Hope some of this helps, and I hope others will give you their imput. We do have other Mom's with children around the same age as your son. You can check past posts and pm other members if you would like. Hugs to you and your son. He's really working very hard.

I remembered something else that is important. Computers are considered a necessary technical assistive device. Maybe you can get it in his IEP to do some of his work on the computer. It's a one on one. My daughter's limitation is in math.

She had to be proficient in math to graduate. Because of the "no child left behind act", the school had her do her math homework, at school, on the computer. This girl, who could do no more than 6th grade math, the normal way, became proficient in one semester, in 12th grade math on the computer. Now you tell me what happened.

Had it not been for that act, my daughter may not have graduated, or graduated without the self esteem of having a certain sticker on her diploma, saying she was "just like every one else."

thanks so much Nevayda. My son does have ADHD as well. I guess that I forgot to say that. We actually live in Canada and as far as I know there aren't any TS chapters here.

I did buy him a computer to help with him and his assignments in school. The school is actually very accommodating for Riley and very supportive in helping him and yet not making him feel any different from the rest of his class. We live in a very small town so he likes to blend in with the rest of the kids, and this town does a very good job in helping him feel this way.

I realize that medication is probably the best way to treat his ADHD and help him focus duriing school, but since we are still experimenting with medications for his other symptoms, he is the one that doesn't want to try any new meds for this problem. I am just greatful that the summer break is fast approaching and he can take a couple of months off and just be a kid again without having the daily stresses for a while.

Thanks for you help again Nevayda and I hope you had a wonderful Easter.

Take care

Hi, there is the Tourette Syndrome Foundation of Canada. Just goodle it in and see what they offer.

I am impressed with your school staff, and neighbors. Half the battle is won when a child is accepted by these important adults.

It seems like your doing everything right. Talk with your son about adhd and if he is willing to try something, let him know it can be stopped if he does not see a difference. Trying the various medications is frustrating. My daughter is on an anti-psychotic to help with tics. She has been on respiridone, then changed to geodon, and finally is on invega. None of these are made for tourette syndrome, but that doesn't seem to matter, as they help with tics. My daughter also has "mental tics", intrusive unwanted thoughts, usually those that cause anxiety. It has totally stopped that. She also is on luvox for ocd.

She is sensitive to side effects of meds, so we went thru a lot finding the right combination. Some that she was on as a child, she has been able to stop.

No mother wants their child to take medicines, but if it's necessary for their success, then it's good to know there are some to help.

One thing that seems to bother the kids, is taking medicine means there is something wrong with them. No so. They are normal kids who happen to have to deal with an inconsistant disorder, named tourete syndrome. Usually these children are extremely good at something as if nature is trying to even things up. I didn't know my daughter had a beautiful singing voice until she was in fourth grade. She was directed towards choir in school. Because she has to do things her own way, she chose to sing solo in church, where it was greatly appreciated and she recieved positive feedback. Academically, fine, gifted in creativity and writing, spelling, word meanings, and we play a game of my asking her what the words mean in that section of reader's digest. It constantly amazes me that she consistantly gets all of them right, except maybe one, and has not known the word.

So whatever interests your son, encourage him to go that way and he should do well.

You can still go to tsa.usa.org to the national tourette assoc. see the information, request some if needed, and also try their facebook page. People from all over this country and outside this country are using this fairly new site. You may find someone else from Canada or just get some questions answered by those who have dealth with ts.--hugs

Thanks again Nevayda. I am really impressed with the school and community here as well. I have never seen a place so supportive of everyone. It is a great little community that we live in.

My son does have a lot of interests. He used to really enjoy hockey and played that for 6 years until just this past year. Now his interst seems to have turned to guitar. He started lessons after the new year. I like him to pursue his interests as I have noticed that when he is focusing on something he is really interested in, a lot of the symptoms seems to disappear temporarily. He seems to be able to focus better too, which is one of his biggest problems.

I will google the Tourette Association here and see what I can find. Thanks again. You have been a great help to me in this short period I have been on here.

Take care

Please don't be a stranger, your welcome anytime, even if it's just to chat about other things, Hugs