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Any advise on how to tell your child's classmates, please?

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  • Any advise on how to tell your child's classmates, please?

    Hi Everyone,

    This is all a bit new for me. I'm not one for joining fora - usually more of a reader than a writer.
    However, as the dad of a TS child, I've got to the point where some help and advise on the specifics of what is best for my son right now is much needed. A good friend suggested this, so here I am!

    My question is this: What's the best way to inform your child's classmates about their TS? I know that there won't be any pat answer to this. Just hoping to get some good, common sense advice from anyone who's tried it before.

    By way of background, my son (Steen) will be thirteen later this month. Seen with my eyes he's a bright, loving and generally happy boy/young man. About 5 years ago, Steen began to repetively nod his head and at the same time blink. A friend of mine, who is a nurse, noticed this one day and told me that I ought to get an appointment with a doctor to get it checked out, which I duly did. The first visit to the doctor (GP) lead to a visit to a specialist, which ended in a TS diagnosis.

    We've arrived at the decision to do this because his teacher, who has himself known ever since Steen was diagnosed, has put us under a certain amount of pressure to tell the rest of the class. His reasoning is that it would help Steen because at the moment he's experiencing an increasing amount of conflicts with his classmates because of his behaviour: having difficulty keeping up with the class, being disruptive, teasing some of the other kids (and not knowing when to stop). At the moment, the other children (and some of their parents) can't understand why when Steen does these things his teachers react differently with him than with them. In the absence of any other explanation they make up their own: Steen is naughty/a pain and the teachers are soft on him.

    I've always been against sharing Steen's diagnosis with the rest of the class. My reasoning has been that I don't want him to be labelled so that everything he does is seen as being caused by his TS. I've always been frightened that he'll be written off and perhaps even bullied. I have no problem talking about this with family and friends who all know, but the school I've always, up till now, seen as being different.

    Anyway, after our last meeting with the teacher, and some reading of postings on this and other fora, it looks as though the concensus is that telling a wider circle of people at the school, including classmates, is probably the best thing to do. If anyone has a contrary opinion, please do let me know.
    If this assumption is correct, I'm at a bit of a loss of how to do it? Who do we tell, how and what do we tell them?
    At school in Denmark where we live it's quite normal for conflicts in a class to be tackled by group discussions. Due to what's been going on with Steen recently he's been very much in focus in these discussions, so much so that, according to his teacher, it's got to the point were Steen seems to be singled out quite a bit. Steen is tired of this (understandably) so probably the last thing he wants right now is to come under the spotlight even more. I know it's not possible to avoid this entirely, but it is pushing me towards trying to do this in as low-key a manner as possible, but is this wrong? Some of the postings I've read seem to advocate something that sounds like a combination of an advertising/awareness campaign - that frightens me a bit, but if that's what's best, then that's what has to be done.

    So, please, can anyone tell me about their experiences with this? I'd be very grateful for any and all input.


  • #2
    Re: Any advise on how to tell your child's classmates, please?


    Welcome to the TSFC Forum and thank to your friend who pointed you in our direction.

    Your question is a valid one which needs to be addressed by our Forum members who have had experience dealing with their childrens' schools.

    I have not had that first hand experience, but I do feel strongly that for a person with Tourette to successfully get through life, they need to be prepared to make their colleagues aware of their disorder, especially if the disorder might cause some form of disruption. This would apply to a school setting as well as at a workplace.

    Your description of Steen's tics seem to suggest at the moment he is expressing motor tics (head nod and eye blink) and perhaps no vocal tics.

    The potential disruption would appear to be minimal, and so a minimum of information might be appropriate.

    Children can be hurtful to another child who appears to be different, so for that reason you may wish to explain Tourette to his classmates.

    Information should be on a "need to know" basis, so each situation should be evaluated.

    The TSFC has a in-service audio visual aid designed for use in a classroom, available in English and French, but probably not very useful in Denmark.

    You may wish to start by working with Steen so he can rehearse with you a short description of Tourette, in situations where he feels it necessary to let those around him know why he does what he does.

    The important information to convey is that Tourette Syndrome causes involuntary movements, which cannot be controlled at will. It is not a disease or sickness other kids can catch, but a disorder in the way his brain sends messages. It does not affect his intelligence or personality which is confirmed by your comment:

    Seen with my eyes he's a bright, loving and generally happy boy/young man
    As for specific ways in which you might communicate with the school, I would like to defer to our other Forum members who have first hand experience.

    Are you aware of the Tourette Support Organization in Denmark?

    We will look forward to learning about your progress.
    TouretteLinks Forum


    • #3
      Re: Any advise on how to tell your child's classmates, please?

      As a TS sufferer, I've done volunteer presentations when I was in HS to Family Studies class, because I knew the teacher and she was all for expanding me peer's knowledge about the disorders there are out there. It is ALWAYS a good idea to share information on disorders with people, especially if it will cease misinterpretation and assumptions that are inaccurate, and that will eventually do more harm than good.

      What I did was tell the class we'll be making motions and noises so I would close the doors until that part was done (it helps for people to feel like what is done in the classroom stays in the classroom). Then I would start with simple tics (twitching the head, shoulders, neck, tapping feet and hand, etc), and progress to more difficult ones (vocal tics including animal noises, yelling, screaming, swearing-a lot of people like this one :P - to jumping, skipping, kicking, etc), and then combining the simple, complex, motor and vocal tics all into one action. Afterward, they were told to sit down (after doing the tics involving standing up) and ask who felt silly doing that (in my case, every raised their hands). I said it's ok to feel silly or even embarassed. Now I asked them to imagine having to do that for every minute of every day, and wanting to stop but that you couldn't. That there was an interior 'itch' that had to be scratched not with fingers, but with involuntary movements.

      Then I'd proceed to share life experiences with tics, the teasing and taunting I endured for being different and misunderstood. I'd list the different tics there are from simple to complex, to vocal and physical tics. For older people, I also included different medications used, their side effects, and my experience with them (Clonidine is the one I'm on currently).

      In your case, you can introduce your son's condition with how I began mine, and then have him share his frustrations and experiences with tics from his own point of view. He can write it out on cuecards as a speech and that will help him focus and remember what he wants to say without getting overwhelmed. Have him practise what he will say too, and let him say what he's comfortable with sharing.

      I have a documentary my parents taped from a program on TS a long time ago. I believe it's called 'tic and shout'. I would show this video to the students and then have them ask questions or share experiences of their own with people they think might have TS.

      If you don't have a video or documentary (which is targeted to an older audience), talk about what kind of hobbies people like to do, and share your son's hobbies and interests. Make a point to have his classmates recognize he's the same as them as an individual, that he likes games and activities they like, he just has tics that should be ignored and accepted as a part of him being unique. It's no different than say, explaining to children why their classmate is in a wheelchair. It's obvious, and limiting to the child in some ways but they can have friends and do for the most part what their friends do, but just need a little help. Nothing wrong with awareness.

      Also, since you mentioned your son teases children. Explain to his classmates he has trouble understanding emotions, and have them use words like "I don't like that please stop" to get the message across. It's great the teacher's so understanding and willing to help, but they should be careful not to treat him much more differently than the other children. Have the teacher monitor him so when he gets aggressive and the children want him to stop, the teacher is there to remind him he needs to listen to them. I had the same social problem as a child, and still to this day deal with feeling comfortable around people.

      This can be done to the class only, or have a small assembly for just the parents and his classmates either in the school gym or the classroom, depending on how big it is.

      Bottom line, the point of him being unable to control his tics, and needing help with his social skills, yet still able to play and have fun like anyone else must be stressed. Especially with children. Tell them what is considered 'normal' for him tic behavior wise, and that the tics should be disregarded as a part of his personality.

      I understand you don't want your son labelled, but it is important people know what's going on and therefore will have an easier time understanding and accepting it. This will prevent him from being labelled, though I can't promise everyone will think that way. In my experience, most people changed their views and tried to understand better, though there will always be a small amount of people who are simply ignorant or refuse to listen to what they think are 'excuses'.

      All in all it's best to get your son used to sharing with people that he has TS. I tell employers I have TS, that it causes me to have tics, but that it doesn't affect my overall ability to work. He will have to tell his future employers of his condition, just so they're aware and don't panic thinking he's having a seizure or fit. It's always good to be honest and comfortable with yourself as well ;)

      I hope that helped somewhat. I wish you and your son the best, and good luck with the icebreaking
      Last edited by Poplover01; May 9, 2007, 08:23 PM.


      • #4
        Re: Any advise on how to tell your child's classmates, please?

        Marisa and Steve,
        Thanks very much for your replies and some very useable advice, which just what I was hoping for.
        All the best,