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I have severe Tourettes (swearing etc) AMA

86 replies

wombatsandaplant · 23/04/2021 19:39

I have severe tourettes, mainly swearing, with lots of random noises and words and phrases. Plenty of motor tics too.

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RainedOn · 03/05/2021 10:39

@Chunkymenrock

Great AMA! But sadly lots of asks and no replies.Confused

How rude.
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wombatsandaplant · 03/05/2021 17:52

@GNCQ whilst it’s great having friends and family that understand, I also agree with @CrazyHorse that it’s really important that the public understands more about tourettes. I find public awareness is really low and acceptance is nearly non existent. People just think you’re crazy if you tic (because not everyone knows what tics are) and they think you’re just being disruptive and annoying or offensive.

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wombatsandaplant · 03/05/2021 17:53

I just wish I knew how to make the public more aware. I wish there was something I could do.

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alloalloallo · 03/05/2021 18:53

@GNCQ - I think it's really important that there is more public awareness about tics and Tourettes, because it does matter if people don't understand, and think negatively of someone if they tic

Yes, this!

DD has had a couple of situations where people have behaved negatively towards her when she’s ticced. She told a male cyclist to “pedal faster moron” a little while ago who then threatened her despite her and her friends she was with explaining.

Definitely agree that a lot of medical professionals don’t understand it either. DD had a nasty fall off her pony a few weeks ago and we took her to get checked at A&E, and despite me warning the A&E doctor that DD had Tourette’s, he was very impatient when she ticced - even asked her why she couldn’t sit still.

I find that people just think Tourette’s is “fun” because they watch the crazy TikTok and Instagram videos or think it’s great you can tell your teacher to fuck off, but it’s so much more than that. DD has head butted a metal bar and knocked herself out, she had a knee locking tic for a month and couldn’t walk, she doesn’t actually want to tell her teacher to fuck off either

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SpottyOrange · 04/05/2021 11:27

What can I do to help support my pupil? Lovely child, highly anxious, tics massively exacerbated by stress.

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SoMuchForSummerLove · 04/05/2021 12:32

@SpottyOrange there's a post way upthread where a PP lists what her child's teacher does - it was quite helpful I thought. I think the poster was Fuckshit or something.

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alloalloallo · 04/05/2021 13:19

@SpottyOrange

I can’t speak for others as everyone has different ways of dealing with it, but things that DD has found helpful:

Making sure all teachers and staff are fully aware and understand. The worst thing for DD was walking into a classroom and wondering if her teacher knew - we had a supply teacher a little while ago who hadn’t read her pupil passport and it all went pear shaped very quickly.

DD has a collection of bitey, rubbery, squashy/stress ball things that she uses as a bit of a distraction, also doodling helps. At first teachers weren’t keen as they felt they would be a distraction but DD finds the more her hands are occupied the better

Ignore the tics, unless she hurting herself, and never try and stop them. DD occasionally gets ones where she punches herself in the face, we try and redirect them but never stop them - it just makes them worse. DD hates being smothered and is much happier when a teacher calmly sits beside her and just talks nonsense with her, rather than lots of concern.

School have been fab and she has lots of access arrangements - her tics mean she struggles to write sometimes so she has a scribe for exams, she gets hand locking tics sometimes, last week she spent a whole lesson opening and closing a laptop so her teachers are great at emailing her notes from class and just being realistic about when work will be handed in - she gets extra time for tests, takes tests on her own,

Being able to just get up and leave a classroom without any fuss if she needs to. She sits at the back of the classroom and has a red card, she puts the card down and leaves. She can then go to a quiet area to chill until the tics calm down.

Tourette’s Action have some resources for schools. Just talk to the child and their parents - how do they manage it at home?

www.tourettes-action.org.uk/60-professionals.html

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SpottyOrange · 04/05/2021 14:03

Thanks both.

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MrsJuliaGulia · 10/05/2021 22:01

I have always wanted to know what would happen if you were in an airport and involuntarily shouted something like “I’ve got a bomb”.
How would you prevent something like that happening?

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wombatsandaplant · 11/05/2021 18:38

@MrsJuliaGulia

I always let the airline and airport know I have Tourette’s and now with the sunflower lanyard I’d wear that too.

Some people can suppress for a bit but it’s best just to let the the tics happen as it means the tics won’t get worse. There’s plenty of videos on YouTube of people with Tourette’s in airports and on aeroplanes ticcing stuff like that and most of the time it’s fine. Sometimes though some discriminated against and are kicked off the plane despite telling them they have Tourette’s,

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Mags5Bia · 22/05/2021 18:31

If you have to telephone a company, eg a bank, do you warn the agent you are talking to that you have Tourette's?

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