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Thread: Today is the day

  1. #1

    Default Today is the day

    Hi all!
    My Name is Karen. My daughter was diagnosed with Tourette Syndrome today. She also suffers from an anxiety disorder. She's an amazing 7 year old girl. We started out with some vocal tics a year ago and they have progressed from there. Today she has a multitude of motor and vocal tics.
    I'm not entirely sure how to explain this diagnosis to her. She knows she has tics (obviously) but we have never really discussed the why or given it a name.

    Any suggestions? Advice?

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: Today is the day

    Quote Originally Posted by kyeosy
    She knows she has tics (obviously) but we have never really discussed the why or given it a name....She's an amazing 7 year old girl
    Hello Karen and welcome to the Forum!

    Your daughter would be aware that she is being evaluated for something, given the examinations and interviews that would have taken place to reach her diagnosis, so this would be the right opportunity to give her some tools to deal with the world, on a need to know basis. As she gets older, learns more about Tourette and perhaps experiences situations that need additional resources, you can elaborate at that time.

    The first question I would ask of you, Karen, is how has the rest of the family reacted and responded to your daughter's tic expressions as they evolved over the last little while?

    It should be understood that from your daughter's perspective, her tic expressions are part of who she is, and that from her perspective whatever her tic expressions might be are perfectly normal for her.

    That being said, it's important for all concerned, family, friends and school that Tourette expressions are not behavioural, but rather symptoms of a neurological disorder and that reprimand, scolding and requests to stop are inappropriate.

    Your daughter should know the term "Tourette Syndrome" and should be able to explain to anyone who might ask that the sounds or movements she makes are involuntary, and that these expressions are part of her Tourette Syndrome.

    I would suggest role playing with your daughter, to help her develop her own way to accurately explain her disorder using the right words....it is not a sickness, nor a disease...it is not "catching" and that it is involuntary (cannot be controlled). Tourette does not affect her ability to think, to love to laugh to be creative and should not affect her relationships with her friends.

    You may want to find one of the written brochures or overviews located HERE on the Forum to print and to keep handy for situations where further explanation might be required.

    Finally, I would suggest contacting your local TSFC support Chapter where you can receive local information, meet other parents and children living with Tourette and where your daughter can meet other kids to see she is not the only one, and where she can learn from the experiences of others.

    You might also consider looking into the TSFC National Meeting in Mississauga this September where authorities from across the continent will convene to discuss support and treatment strategies.

    What treatment strategies, if any were recommended by your daughter's doctors?

  3. #3

    Default Re: Today is the day

    Thanks Steve!
    we do not react to her tics at all. If one happens that is really loud, the odd time she will look to us for support. She quickly gets an encouraging glance or smile. Her tics Do not bother anyone in our family. My younger children have been taught that this is a part of her as much as her smile or laugh is and they do not comment to her. They often come to her defence if a stranger mentions it.(people love to comment, don't they?). I was lucky that a teacher in her school has a daughter with Tourette syndrome and I looked to her for guidance right away for how to respond (or not respond).

    I am also an educational assistant and have some prior knowledge of tic disorders. Our visit to the paediatrician came quickly and we also receive quick feedback from her and she wrote a letter to the school outlining how not to react. Everyone has been very supportive.

    Sadly, the school seems to think that a identification of Tourette syndrome falls under a behaviour identification. I will be fighting this. My daughter will not be identified behaviour. It will fall under communication or there will not be an identification.

    I live in North Bay. There isn't a local chapter. I believe Muskoka is the closest one. I will contact them.

    The paediatrician is referring us to a clinic at Toronto Western. Beyond that, we will see her again just after the start of the school year.

    Karen

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    5,945

    Default Re: Today is the day

    It's good to hear your daughter has such a supportive family; it should serve her well in the future.

    You may wish to contact the office of TSFC to find out what if any support services there might be in the North Bay area.(800) 361-3120.

  5. #5

    Default Re: Today is the day

    You sound like a wonderful mom.

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