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Looking for more support for my 12-year-old son

I have a son with Tourette Syndrome and Obsessive Compulsive Disorder. I want to share what I have learned over the years and perhaps learn something new from other parents. My son was diagnosed around age 7, and he will be turning 12 soon.

We have learned a lot over the years and have had the good fortune of finding wonderful doctors and therapists. I am tremendously grateful to them for the strides my son has made over the years.

Like those with TS know very well, there is a constant waxing and waning of symptoms. My son started middle school in September, and to my surprise the transition went better than I expected. My son is a very hard worker with a lot of determination and that certainly has a lot to do with it.

Over the years, I have been very disappointed with the lack of support groups for children with TS & OCD. Although there are many options for the parents, I have yet to find something where kids could meet twice per month to talk about what it is like living with Tourette.

I feel this is so important and so desperately needed. There is nothing like being able to talk to someone who truly understands what you feel and what you go through on a daily basis. My son is social and does have some very nice friends who seem to accept him for who he is, but I would love to meet another family with a 12-year-old boy in the State of New Jersey.

I think it would help my son feel that he is not alone and hopefully will help another child, too! We will be at NJ Walks For TS at Ramapo College on April 14. I am hoping we meet some people and maybe can exchange e-mails.

0 Comments

  1. My son is a little older (16), but went through the exact same thing when he was younger. Accepting that friends are hard to come by for someone that age with a disorder like TS is not acceptable. Why can’t people be more tolerant?

    • You are so right! When you find a good friend who is understanding, you just want to hold on tight.Now that your son is 16, are his symptoms better. My son will be 12 next month and we are embarking upon a very difficult time. He has OCD also. After your years of experience with this, do you have any advice? What do you think has been most affective for your son?

  2. Hi. I have also found it difficult to find support groups for my son who is 9( as well as myself). We live in Bergen County. Where do you live? We will be at the walk but if you live close, feel free to email me ccv0429@yahoo.com

  3. My son, too, is 12 and looking for TS friends. He also has TS and OCD.

    • My son turns 12 next month. With the onset of puberty, he has had an increase in both his TS symptoms & his OCD symptoms. He is currently being treated with ongoing therapy as well as medication to help him enjoy childhood. Have you had success with one treament option over another?

  4. My son is 10 and begs to meet other young people that have Tourettes. Camp Bernie was the experience of a lifetime for him but he would like to meet with other children more regularly. Unfortunately we won’t be at the marathon

    • We are going to Camp Bernie this year-our first time. We can only stay from the start on Friday to Sat night after the talent show because my parents renew their wedding vows for their 50th wedding anniversary on the Sunday.

  5. We can’t make it to the walk, but my son, too, is 12 and looking for TS friends. He also has TS and OCD.

    • I am looking forward to the walk. I live in Middletown, NJ. I would love to get some sort of support group going.

      • Hello, if you’re looking for support group information, please call the New Jersey Center for Tourette Syndrome office at 908-575-7350. Or come see our table at the walk! 🙂

    • Hello Jen. We are excited for the walk today. We have great weather. If you would like our boys to meet at the walk, my cell is (732) 720-5718. I’m AnnMarie

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