my son has just been diagnosed with tourettes syndrome

my 7 year old has just been diagnosed with tourettes syndrome after a very long process and lots of appointments he was first seen at the age of 4 this was when i was taken seriously. But i had been persuing people for answers since he was roughly 5 months old! I now face a long ongoing battle with his school to get things right for him, up until they recieved the report saying he does indeed have tourettes he has been labelled a naughty boy and is always getting told of for and i quote "making silly noises" "disturbing other children in class" etc etc etc. Thjey have tried to label him with autism, asperges, adhd or just plain old bad behavour. Luckily i have had the professionals on my side the whole time who were never convinced of any of these conditions and helped me fight my corner. However now I have had a diagnoses i fill very alone suddenly I have to know what to do and how to deal with this. To be honest im still very much learning about what ts entails and my head is about to burst.

Is there anybody who has a child with ts who might have suggestions in the best ways to deal with it at school?? any suggestions would be greatly apprieciated as I am still very new to all this.

3 Replies

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  • I don't have a child with TS but I was a child with TS. Not diagnosed until I was 26 though. I had the same as your son with being told off constantly for making noises. I was made to sit on my own in many lessons because they were convinced I was chatting to friends and just acting up. I also got into trouble for being rude, yet I was painfully shy and just wanted to not be noticed most of the time. I spent about 80% of my time in lessons putting all my energy into not ticcing and so could barely take in the information they were telling me.

    I can't offer any advice on dealing with the school, but I can tell you that although I did not do very well it never held me back and I now have my own design business.

    Jen

  • I have suffered from Tourettes as a child to the age of about 13/14 years old and then i was almost free of it from that age apart from certain periods in life when i believe i was under stress, but it as not held me back in doing those thing in life that i wished to do, OK, there are some with to much ignorance and seem to think it funny, as i went through life, but to tell the truth, i felt sorry for such people, after at first, wanting to give them a mouth full on a personal Tourettes!!!, i can swear, and i mean swear, that's my oral tick, although i have it under control, and used only when i am alone, as more of a release, at the age of 78, i am wiser in the world, you must feel so alone, There is a Brighton tourettes organization for parents that have children with tourettes. i do not know the address, that group would be able to help you in your situation I'm sure, if nobody comes up with the address for you just say, and i will do a search on the net, and find it for you.

    From Worthing

  • I have found the Brighton & Hove Tourettes Group at this address... amazebrighton.org.uk/

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    And here are some other sites that may be able to help you in your research on the subject.

    well.blogs.nytimes.com/2010...

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    consults.blogs.nytimes.com/...

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    bbc.co.uk/sn/tvradio/progra...

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    tourettes-action.squarespac...

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    nhs.uk/Conditions/Tourette-...

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