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What kids say and how to react

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  • What kids say and how to react

    My almost 12 year old son has had TS for about 7 years, although the symptoms have always been minor... until the eye rolling started about a year ago and I thought he was having a sezure :lol:. I had suspected TS because of some of his compulsions, but this was the first sign of motor tics.

    Now it's a year later. He has a diagnosis and the physical tics have gotten worse, are continually changing, but are still minor. He's dealing very well, gets B's and A's and does what he wants with very few if any difficulties. So it's not too bad.


    I we warned him that kids at school would eventually pick up and notice something. Today it happened for the first time, where someone told someone else and the questions started. This 'weeks' tic is a noticable pushing out of the jaw to one side.

    My question to everyone is: What have your kids found to be the most effective answers to the "why are you doing that" question? :oops:

    Thanks in advance for your replies

  • #2
    What kids say and how to react

    Hi Chris,

    Welcome to the TSFC website, we are happy that you found us.

    There is a Tourette Syndrome support groups all across Canada for support resources in your community.

    Now that you have a diagnosis, how has your family been coping? How has your son explained his TS to your family?

    It is wonderful that you are actively seeking more information about TS and its effects on your son. There is a section called Q&A for TS .

    My son is 9 year old and if someone asks him about his tics then he says that it is just my tourettes.

    There are some people who make fun of him but I guess there are always people like that who will make fun of people for any reason.

    Having other friends to play with helps him feel just like other kids his age.

    It is really difficult as a parent to see your child get put down by other kids especially when your son can't stop his tics. There is articles by the TSFC including Nine Faces of the TS Parent.

    We have many discussions on various tics throughout the body in the tic parade. Please jump into any discussion that you want or start a new one.

    You are not alone and we are always here to talk to and give support to you and your family.

    Looking forward to hearing from you.


    • #3
      What kids say and how to react

      I'd agree with "It's just my Tourette's"

      If they ask what it is, an honest answer is good. Other kids might not fully understand, but it's often easiest to be cool about it, and treat it as if it's not a big deal. (Kids are always looking for a weakness to exploit. :P )

      Pre-teen years (and early teens) are difficult socially. The social structure in school at that age is bizzarre, at best. If your son has one or two good friends who have his back it makes it easier. If he's pretty shy, it might be harder for him to confidently answer -- but if he learns to self-advocate, it'll make that time a bit easier on him.


      • #4
        What kids say and how to react

        Hello Chris and welcome to the TSFC Forum.

        Your best strategy for your son's encounters with others is to prepare him as you have been doing. To help him not be caught off guard, you may consider role playing a situation where he gets to practice his explanation that he has Tourette Syndrome and that his tics are involuntary.

        Being 12, he can he can help his friends understand what it means to have involuntary behaviour.

        Using the analogy of trying to hold back a sneeze, or trying to keep your eyes open for 5 minutes sometimes helps his peers better understand.

        Another strategy that can work is to enlist the cooperation of the teacher. If the teacher is unfamiliar with Tourette, the TSFC has an in service teaching program that helps acquaint teachers with Tourette.

        If you live in Canada, and you have a local Chapter, there may be a volunteer in service presenter to help...if not, the TSFC office sells a recorded in service presentation.

        If you are in the U.S. your local TSA Chapter may be able to help.

        Another resource you may wish to download and print, for your son to carry with him to explain Tourette is THIS
        TouretteLinks Forum


        • #5
          What kids say and how to react

          Hi Chris

          I'd agree with "It's just my Tourette's"
          I have to agree this is the best possible answer.

          My oldest is 14 and was diagnosed at 9 years old. His classes at school were all in-serviced so his peers were aware up through grade 6. Once he transitioned to grade 7... junior high school where he encounter other students who came to his school from other feeder schools, he didn't feel it necessary to have his class in-serviced. He was asked the same questions repeatedly by kids who did not know him and this is what he said every time, "It's just my Tourette's" For those who did not know what TS was, he quickly gave them a recap... he was fortunate and never had any issues... so far.

          TSFC Homepage


          • #6
            What kids say and how to react

            I thank you all for the replies and good info.

            Some background: We saw a doctor who specializes in TS almost a year ago. He specifically said "don't mention it to anyone who doesn't ask and I don't suggest telling his teachers or even friends. The connotation of the name can label him and we don't want that, best to ignore it unless it gets to a point we have to tell people"

            We'll we're on the edge, his tics are certainly minor but this particular one is obvious, so if we begin telling everyone and it goes away we've now put him in the position of having to explain forever.

            He is anything but shy! But at this point he doesn't want to tell anyone what it is for fear he'll be labelled the kid with TS. I agree with the doctors suggestion and as a vhild I went through some serious health issues (not related) and I completely agree with keeping it from anyone unless it's obvious or required.


            • #7
              What kids say and how to react

              We have done the same thing with our son as you. His symptoms are very mild and sometimes only obvious to us. He hasn't told anyone so far and we have not told the school. We are worried, as well, about the stigma that may be associated with him. Since his tics are mild and didn't begin until he was around 10 they may go away if not completely but at least become even milder. He knows he has TS and if the tics become worse or become a problem either at school or socially we will address that situation then. My son doesn't want his friends to know about his TS and I respect his wishes. He tends to disguise his obvious tics (pretends he has something in his eyes, or has a runny nose, etc.). I don't know if this is the recommended way to go, but it makes him comfortable.



              • #8
                What kids say and how to react


                Welcome and I am glad you found us.

                My son is 12 going on 13 soon. The past two years he has gradually begun to understand what was happening to him. His frustration level is zero now and all the tics are just the norm.

                In our case, we had a in service program for his age group while he was not in school. I attended just to see what the response was and everyone was surprised that the program was so well received.

                Often at that age group there are not many questions but the program ran long with hands raised. At least 30% of the room already knew about TS but only related it to some motor tics and phrases.

                The principal was so supportive she had her entire teaching staff attend a in service during a PA day two weeks later.

                Although every knows about TS, no one has labeled my son. They just don't question it and to prove the point; he attended his first dance a couple days ago and three girls asked him to dance.

                His motor tics are very obvious, especially when stressed and his vocal tics can carry sometimes. We have seen more noticeable tics over the past year but then I think we all have to agree that age range is not an easy one for boys.

                I hope you can spend some time reading and joining in on other topics. Contact your local chapter after speaking to your son's principal and see if you can get the program into the school.
                You may think the year is almost over, but it can make a difference.

                In connection to how to react, my son just says "o' its just my TS"

                If someone is not nice to him about it and they are showing out and keep pushing he usually tells them to try holding their breath, if they are actually willing to do it he tells them to count to 30 and then tells them not to breath. When they look shocked while still holding their breath he tells them thats how it feels when you have to tic. Then he says " A real pain isn't it?" and walks away.

                Kids only pick on him once after one of those moments.

                The more your son understands about TS over time the better equipped he will be to deal with those that just don't let up.

                Keep us posted and again I am glad you found us.