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Tourettes dx in 8yo. What and who to tell?

(6 Posts)
TeamEdward Tue 25-Mar-14 10:14:01

Message withdrawn at poster's request.

mrsbaffled Tue 25-Mar-14 12:40:42

Hello. I have two DSs 9&6 with Tourettes. The 9 yo was dx last week, and the 6 yo a year ago. It is in my family on both sides (dx in my father, and undx in DH and DMIL). They are both quite mild at the moment.
We told close relatives and the teacher/SENCO. No one else really needs to know unless you want to tell them. I printed out a leaflet from the tourettes Action website and gave it to school....I will see if I can find it again. The whole TA website is really good. There are local groups and meet ups every so often, so ding up to the newsletters.

How are you feeling?

mrsbaffled Tue 25-Mar-14 12:44:52

TA website
Longer booklet about TS

This is what I gave school

mrsbaffled Tue 25-Mar-14 12:47:41

I find people can be weird about it as they don't know what TS is. A few key facts can help. Such as what the diagnostic criteria are and how common it is in the population, percentage with corprolalia etc. I take it as an opportunity to educate x

TeamEdward Tue 25-Mar-14 20:09:22

Message withdrawn at poster's request.

Hardtothinkofanewname Wed 26-Mar-14 21:38:26

Two of mine have Tourettes too. I tend to tell people because there is nothing to be ashamed of and I also see it as a chance to educate.
My kids mostly appear normal in public - but are worse at home. The rages, obsessions and anxiety are worse than the ticcing.
Because the kids appear normal I do get people who don't believe they have T. I've taken to comparing it to illnesses such as Diabetes - which is serious - but not obvious when you look at someone.

I think an important point to get over to the school is that even when a child with T looks normal, they may well be suppressing tics and that takes a huge amount of energy.

My children's school is doing health talks about different diagnoses - Tourettes, ASD and ADHD - to try and educate the children.

I also refer to it as a neurological illness or Neuropsychiatric condition. I want to point out to people that there is something wrong with my children's brain and they have to suffer from it. If they swear it's because they are being made to, and it upsets them too.

I found reading some of the autobiographies by adults with T very helpful. Nick Van Bloss is a world famous pianist who has written about his experience

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