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Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

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Hi, i'm new, looking for support

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  • Hi, i'm new, looking for support

    hi i am a mother of a 5 year old girl. She has been displaying motor tics. She is blinking her eyes, and now she is turning her head back and forth. So far they have not been noticeable by anyone other than family. She has been doing this for about 5 months now. My brother has severe TS. My mom says my brother showed symtoms when he was very small. My brother is now 32 years old, and he can control most of his tics, but i remember growing up they were horrible, he was made fun all the time, and was eventully home school. My dauther will be starting kindergarden this week, and i am so worried, i don't know want her to go through the same thing as my brother. I don't know what to say to her, I have asked her after one of her tics why she did that, and her reply is "i just want to," i said ok, and left it at that because i know that she cannot help it. This is very hard to me right now. I am not realy sure what to do, i have read many heartbreaking stories of parents and children on here. I will take all the advice and support that i can get.....Her father is no help at all, he is not supportive and is very uneducated on the subject and thinks that it is my fault, since it is thought to be hereditary. He has alot of mean things to say to me so i try to stay away from him and his negativity.

  • #2
    Re: Hi, i'm new, looking for support

    Hi mommy143, I am relatively new too and I am sure the experienced members of this site will have lots of advice to give you. Everyone is so helpful and supportive. There are lots of resources that you can lend to your daughter's teacher about TS - many are available on the TSFC website. Nowadays, bullying at school is so discouraged, it may be easier for your daughter than it was for your brother - it may take some education of her classmates about TS. Has she had a diagnosis? My 11 yr old son's psychologist has been a great support. Maybe you'll find a good therapist who will help your whole family get a handle on the situation.


    • #3
      Re: Hi, i'm new, looking for support

      The situation for your daughter can be quite different than what your brother experienced growing up. One major difference is that alot more people know about Tourette Syndrome now then when your brother was in school.

      Don't assume that your daughter's tics will be the same as your brother's. Each person with Tourette Syndrome is dealt a different hand -- the neurology will not necessarily express itself the same. Your daughter's symptoms could end up being mild in comparison to your brother's.

      One of the best ways to ensure success in school for your daughter is to get informed about Tourette, get involved with both the TSFC and your daughter's school and help to educate and inform your daughter's teachers and schoolmates. The TSFC has several resources available, including books and the Educator's Resource Kit from their website. Contact the National office to find out if there are in-service presenters in your area who can provide a presentation on dealing with Tourette in the school to your daughter's teachers and/or classmates. If your daughter's symptoms are mild you may not need the in-service at the kindergarten level.

      If you can, plan to attend to the TSFC conference September 27 to 29 in Niagara Falls. The conference is an excellent opportunity to get quickly up to speed on Tourette Syndrome and to meet some truly amazing people who have Tourette Syndrome as well as parents who are helping their children be successful while dealing with Tourette and its associated disorders.

      The other thing to keep in mind when reading the stories on this site -- there are also as many, or more, stories about the joys of dealing with these spontaneous, energetic kids. Unfortunately we don't share enough of this side of the equation.

      Is there a TSFC chapter in your area you can contact?
      Forum Moderator


      • #4
        Re: Hi, i'm new, looking for support

        Welcome Mommy143!

        As others have said your daughter's TS and her experiences with it will not necessarily mirror your brother's. It is highly likely that she will have a different experience entirely. A lot has changed since your brother was growing up. Schools, medicine and public perception of people with differences has come a long way.

        Please feel free to browse the forum and chime in whenever you need more information. By adding to older threads new conversations can be started as well as new views discussed.

        I look forward to getting to know you better.


        • #5
          Re: Hi, i'm new, looking for support

          Welcome and I am glad you found us.

          The forum can offer experiences, open discussions and help you better understand TS.

          It is correct that everyone's tics are not the same. It can also be that only one or two of the tics you may see now will continue as your daughter grows while others could come & go.

          You maybe interested in reading more about how people have TS. It was once thought that only one partner could cause this but in fact it is now thought that a recessive gene in both parents can trigger a child to have TS.
          I believe we continue to learn. In our case we could not find someone in the family to single out and yet my son has TS.

          Everyone deals with the process of diagnosis a bit differently and it can be common for one partner to pull further away as it can be hard to understand. Unfortunately blame can happen as a part of dealing with the experience.

          Try to find a local support group in your area while continuing your quest for answers. You will find more support and possibly a mentor for your spouse to relate too. Once everyone better understands the stress & anxiety will improve and you can focus and finding answers.

          Please keep us posted on your progress and I look forward to your continued visits.