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Thread: Tourette Parents' Survey

  1. #1
    Join Date
    Apr 2005
    Ottawa, Canada

    Default Tourette Parents' Survey

    A survey of parents of children with Tourette Syndrome found that parents considered attention and learning problems to be their greatest concern, while the motor and vocal tics were less important.

    What is your view on the subject with your own child(ren)? Would you agree or disagree with the above survey results?

  2. #2

    Default Tourette Parents' Survey

    Hi Steve,
    Directly no to both - sorry
    Our main concern is that Tim is happy and has friends - that means enabling him to manage his TS which means, indirectly, that he can control his tics.
    In short I disagree :evil:

  3. #3
    Join Date
    Apr 2005
    Ottawa, Canada

    Default Tourette Parents' Survey

    For the sake of discussion, lets say your son could be offered a magic wand where he could choose being popular with his friends or getting a good education...

    A young person might choose the former because peer validation seems to be the most important consideration from a child's perspective.

    Would not the ability to successfully learn and to socially interact pay more dividend in the long term?

  4. #4

    Default Tourette Parents' Survey

    If I may (I have no children). This is a tricky situation that will probably get many different answers depending on who you talk to. Like you said steve, the child cares more about having friends while it seems (this may be a sterotype, sorry) parents just care about school work. (although you david disagree). The problem to me is at a young age kids will be kids which means they will acknowledge, and when I say acknowledge I mean make fun of, someone for their differences. But as kids get older, either it seems to not be as big of a deal or everyone figures out that everyone has something they are "ashamed" of. Obviously school work is important and TS can affect it and its very obvious being happy and having friends is an instrumental part of life but I dont think there will be a true definate answer here which is more important. So, I dont really know where Im going with this now but I guess I just think that study may paint an incorrect picture in some peoples minds. Ok, I have no idea why Im still typing, so Im going to let someone else say something to this matter. :oops:
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  5. #5
    Join Date
    Jun 2005
    St. John's NL

    Default Tourette Parents' Survey

    found that parents considered attention and learning problems to be their greatest concern, while the motor and vocal tics were less important.
    I believe this survey reflects that there is more parental concern with the negative impact from the attention and learning problems vs the impact of the tics, which if you talk to adults with TS, it is often the other symptoms of TS vs the tics that impact their lives. Then again depending on how severe the tics this could vary. I, like David, feel that quality of life ie social life is what is most important to me as a Mom for my kids. For both my boys that was what we have targeted first and then the learning difficulties. I will point out that the attention and the lack of impulse control that comes from the ADHD was what was impacting my son's relationships with his peers not the tics.
    Janet, mom of 4

    TSFC Homepage

    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  6. #6

    Default social clues

    Janet, I completely agree. My 10 yr old sons ADHD and OCD were interfering with his friendships more than the TS when he was first diagnosed at 7 yrs. He would miss social clues from peers and not know when or who to approach or back off. He would be distrcted when they wanted his attention and this often seemed like he wasn't interested in their overtures of friendship. So it is not just from a school context that I would wish to wave the wand and fix the ADHD or OCD. With a bit of maturity, some skills coaching, and Strattera, we seem to have manufactured our own wand of sorts. At least for the moment anyways, puberty may just throw it all out the window, but that is tomorrow.

  7. #7
    Join Date
    Sep 2005
    Georgia Chapter of the TSFC

    Default Tourette Parents' Survey

    How easy is it to repair gaps in academic achievement versus emotional growth? VERY! Self-esteem is the bottom line on all of this. Period. The child or adult must care how they do before they can do well. This is valid for all disorders, not just TS+.

    Also, for some reason we are separating out social success and academic success. For a lot of Touretters, these go together. I am talking about therapy and medicine as part of a treatment package. Caring about grades and caring about other people's opinions are the same ideas - caring about feedback from the universe as a whole. This is often damaged or turned off in TS+. Remember we, by definition, do not respond to long-term goals in the same way as 'normal' folks. Success in life is the key - the rest is just details. School and friends are subsets of life.

    Do not forget that tics are affected by stress. Success in life, in any part of life, alleviates stress, which alleviates tic symptoms. Controlling tics to ensure self-esteem or social or academic success is putting the cart before the horse. Only in the most severe TS+ cases is the ADHD or OCD a secondary issue. For most people that I have talked to about TS+, the tics are a nuisance, but the ADHD and OCD are show-stoppers. How many of us have lost partners, friends, or jobs due to over-ticcing? I think 'controlling' the tics is a bit short sighted - no offense to the parents, this is VERY difficult stuff to understand, especially if you do not have it yourself.

    But you said it yourself: happy. Not ticcing is not what makes me happy. Paying the bills, having friends, being a part of society, having toys (like a car), are what make me happy. My tics? They can go hang, they don't concern me that much any more. :-)

    Oh, and I have more bad news: it is starting to become evident to those of us with TS+ that the most severe symptoms seem to correlate with abuse, neglect, or some other emotional damage that weakens the self-esteem or the 'ego' of the Touretter. I know some severely disabled Touretters who are just spoiled. Their parents were not up to the fight, and spoiled the kids. They are now spoiled adults, with debilitating TS symptoms. Even in that case, I stick to my guns: self-esteem is the key to reducing the impact of the symptoms. Note how I said that: the IMPACT, not the amount or frequency.

    Okay, okay. I know. Time to get off the soapbox. I hope I was not too forceful here. I just get pretty heated when I think about how often I was 'forced' to sit still in school. Guess what I learned that day? Only one thing: teachers are capable of just as much accidental cruelty as any other group of people.
    Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"

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