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More questions and would love opinions, please!

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  • More questions and would love opinions, please!

    My daughter was recently diagnosed with TS+. We believe she has had some issues with OCD (Repeating words in her head) and dyslexia and ADD.

    My question is this: She whistles all the time. Just a quick whistle in the middle of whatever she is doing and repeats it throughout the day. The other day she said something about whistling and told me she likes to whistle. I told her I just thought it was a tic and did not know she was wanting to do it. She said it is not a tic, she knows she is doing it and does not HAVE to do it like with her tics (Or I assume like the other tics she has had). What I am wondering is if it could be a tic and her not realize it is a tic. I really do not care one way or another but it puzzled me because it SEEMS like a tic because she is not whistling a tune it is random and it has been happening for days. Wouldn't she know it if it were a tic? I just wanted to understand. I am just happy she enjoys it if it is in fact a tic and it does not cause her pain!

    Also, I wanted to vent quickly. Today we attended a birthday party and my mother in law said she does not believe my daughter has TS and would NOT believe it unless she saw her jerking all around. This really upsets me because she says all kids do odd movements and odd things and behaviors. If she does not believe it I suppose she thinks I am labeling my child or made this up. Who would want this for their child, who would choose this for them? Please know, I mean no disrespect to anyone with TS but I would not wish this on my child or another person. I am not making this up and it is offensive to me that she said that. How have others dealt with comments such as this. I will not say anything to her about it because in the long run no one knows my child like I do, but it is frustrating to me. I am thankful that she does not have major body tics and have been mostly mild. But, this just angers me that people seem to think I created this no existent issues with my child.

  • #2
    Re: More questions and would love opinions, please!

    My daughter was recently diagnosed with mother in law said she does not believe my daughter has TS and would NOT believe it unless she saw her jerking all around
    If your daughter's diagnosis was made by a competent medical professional with clinical experience in movement disorders, and made the diagnosis through observation and interview of both your daughter and close family members, then you have a diagnosis.

    Two thoughts come to mind:
    • Your mother in law is in denial, refusing to accept the reality her grand daughter's image is not living up to Grandma's expectations.
    • What medical school did Grandma graduate from?

    Denial is a major part of dealing with resistance from friends, family and even those afflicted with Tourette. "That could not possibly happen to me" "What will people thin?" "How will that make me look in public when I'm with my grand daughter?" are some of the forms of thinking in a state of denial.

    Your mother in law needs to become informed about Tourette Syndrome, perhaps using some of the material we have on the Forum, contained in the "Sticky" posts in the section titled "Tics Overview".

    Acquaint her with some of the heroic stories of individuals with Tourette who have accomplished extraordinary achievements, such some of those we feature in Myths, Stigma and Raising Awareness.

    The reality is that Tourette Syndrome is a part of who your daughter is, just like the color of her hair, her height the shape of her nose and the color of her skin. Tourette Syndrome is an involuntary neurological disorder, that is not affected nor controlled by behaviour, and most important has no correlation with intelligence, emotion or any other attribute your lovely daughter might possess.

    In fact people with Tourette Syndrome are often thought to be more creative and resourceful than the general population, allowing them to achieve just about any goal in life that can be imagined. There should be no limit to what your daughter can achieve in life, so long as she is given every opportunity to thrive, and given every support and encouragement possible by every single member of your family.

    Her self esteem is her most valuable asset, so nothing or no one should be permitted to demean or restrict her in any way.

    She whistles all the time
    So do I, by the way.

    I don't see my own whistling so much as a tic but rather as a form of redirection of tics to a more "socially acceptable" expression.

    As a strong proponent of re-direction, from my own experience in finding ways to deal with my own Tourette, if your daughter has found ways to suppress tics or re-direct her urge to express a certain tic to another movement or sound that she finds more pleasing for the situation, then allow her to do it, and yes, even encourage her to do so.

    I might add that bringing attention to her tic expressions, serves little useful purpose, except to increase her anxiety about her tics. Increased anxiety raises stress levels, which in turn trigger more tic activity.

    Your daughter needs to feel safe around family and friends and especially at home and in her private space. She needs to be able to express her tics without interference and without drawing attention to her.

    Ultimately her comfort with her own Tourette and her self confidence should allow her to integrate into academic life, her social life and eventually into her professional life.

    The lessons she learns at home will determine her success in dealing with her Tourette as an adult.
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