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suggestions greatly appreciated

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  • suggestions greatly appreciated

    hi !

    I am new to this site and just had my 9 year old grandson diagnosed with TS. He lives with us for reasons I won't go into right now.
    He has been treated for and labelled ADHD for a few years with no stopping him no matter what meds he was on. I had him assessed today and found out that yes, he does have ADHD, however, it was minor compared to the tourettes. He has been through a lot for a young child and we thought he had major anger issues, (he had plenty of reasons for that) The tics were coming out loud and strong and were getting worse everytime he was on meds. I wanted and well, demanded answers instead of " I guess so and I assume so" So one peditrician down and where do I go from here? I got the answers today at long last. Now we are heading in the correct direction instead of helter skelter with him.
    The biggest issues we are now facing is educating the teachers who, because of large classrooms, simply don't want to understand nor help a child with any sort of disorder. I have lots of ammunition for them, however, little to no co-operation from the school or it's board here in Ontario. Besides standing in the pricipals office and demanding that they read the pamplets and books on tourettes and how to help the boy better, anyone have any ideas that I might use to educate the teachers?? as well as the students? all suggestions would be greatly appreciated

  • #2
    Reply to Karen H in London

    Hi Karen
    Sounds like you have been through a lot getting your grandson diagnosed. There is hope! The London Chapter holds support meetings the second Thursday of each month (except July and August) at Madame Vanier in London. So there is a meeting this Thursday November 11 at 7pm. If you can make it we would be pleased to try and help you. We also provide in-services to schools in the area and would be only too happy to help you in that area too.


    • #3
      Grandchild with TS

      Hello Karen.
      Your Grandchild is very fortunate to have you.

      It's not uncommon to hear stories about school's seemingly ill-equipped or un-interested in the needs of a "special" child. I have been down this road myself.

      I suggest you contact the School Board directly. Ask to speak with someone who can assist you directly with your concerns. Let them know that your child has a dissability (Tourette Syndrome) and that you want to know how to access services to assist him/her better in the classroom environment. It might be better at first if you hold off telling them that you don't seem to be getting anywhere with the child's school directly.
      You should inquire about what services are available.........such as an Educational Assistant who may be able to work with your grandchild in the school setting. I believe that you have to start some formal paperwork etc. to request additional assistance.

      You might also find out where the closest chapter of the TSFC in your community and contact them. They may be able to provide and inservice to the school where your child goes. It can be an inservice for the whole classroom, so that the other children can better understand their class-mates difficulties and hopefully, appreciate what he is going through......or an inservice for the teachers and principal.

      The other suggestion I have is to obtain a new booklet that I've recently heard about from the Cdn Psychiatric Reserch Foundation.
      There are two books:
      "When Something's Wrong - Ideas for Teacher"
      "When Something's Wrong - Ideas for Families"
      You can find out more at or 1-800-915-2773

      And lastly, you can always contact the new Children's ministry for guidance. It was established this year and they are hoping to help families with mental health issues of children etc.
      Contact: Ontario Ministry of Children & Youth Services

      Best of luck and God Bless.
      Being different is special.


      • #4
        suggestions greatly appreciated

        Hi Karen! I too have struggled with my son's education since he was six yrs old (8 yrs) and have learned that my husband and i need to be very proactive where the school sytem is concerned.(I'm in BC). Now that he's 14, with all that goes along with him being a teen, i'm finding that with class sizes, and busy teachers, that it's a constant struggle for him to get not only his responsiblitites completed, but also to get the teachers and administrators to actually UNDERSTAND what a child with tourettes stuggles with on a daily basis! BUT i always keep in mind that my important mission is to advocate for my son as best as i can and if feathers get ruffled along the way, then so be it! It's been my experience that if you push hard enough, eventually someone WILL have to listen!

        Good luck!


        • #5
          plugging away

          Hi Karen, I think my greatest wish is that my son could have the same teacher year after year. It seems that you meet with the teacher at the beginning of the year and explain your child's differences and the support he (or she) need in the school environment. You often feel as if you are viewed as an overly anxious pushy parent and dismissed, no mater how much they seem to listen. Then by January the teacher will start to come around and may try to implement some of your suggestions in class... maybe you have legitimate concerns after-all. So after several different methods are tried out by the teacher to discover what will work best in their class it is April or May. You child finally is getting the support and understand they need from the teacher... for at least the last 2-3 months of the school year. And then a new teacher and you start all over again.

          We finally got our first Individual Plan which will follow him from year to year.... but it has no academic component. Just things like rewards for not losing his inside shoes or coming in early to clean out his desk each morning, etc. (ps. he is in Gr. 4). I got a call from his teacher two weeks ago about how he suddenly changed, he is waxing something fierce, and maybe we need to set some other assistance in place. Like I haven't been asking her to do this since the beginning of the year. She asked if maybe now I could set up an in-service.....

          Check the board and provincial requirements, they may try at the school level to tell you that certian things are not available or required and if they don't return your calls go over their heads. My theroy is you just have to keep plugging away and advocate, advocate, advocate.