Tourette’s - it’s not just random swearing and chucking eggs around

[Alloalloallo]

My 15 year old daughter has Tourette’s.

I spent last night with her at the urgent treatment centre after her hand locked on Wednesday morning. It was extremely painful so she had to be given Valium to try and relax the muscles.

For the whole of February, she had to use crutches as her knee locked and she couldn’t walk. Before Christmas we ended up in A&E after she head butted a metal bar at school, knocked herself out and gave herself 2 black eyes, then again in January when she punched a doorframe and we thought she’d broken her hand. Then there was the time she called a random woman a “fat cunt” and I thought she was going to punch us both, or the male cyclist she told to “pedal faster moron” and he came over and threatened her and the woman in the co-op who called DD a freak and dragged her kids away.

Of course we do have a laugh together. I’ve tried to encourage DD to try and have a bit of a sense of humour about it for her own sake, and the randomness of some of the stuff she comes out with always makes us giggle - although when she gets a word stuck on a loop it drives me up the wall.

I have the day off work today and was supposed to be meeting a friend for a dog walk and a catch up, but after last night I’m completely knackered, plus DD is feeling quite groggy and spaced out so she’s off school. We’re just going to have a lazy, mooch on the couch, chill day.

I called friend this morning to explain and she was just so shitty about it. Didn’t really understand why a clenched fist could cause so many problems.

I follow a couple of people on Instagram with Tourette’s and it’s all “Tourette’s vs baking” and chucking eggs around and random sayings, which is great that there’s more awareness and it’s brilliant that they share this stuff, but at the same time, I’ve found that people don’t realise it can also be painful, debilitating, frustrating and downright embarrassing.

I don’t know, I just feel a bit overwhelmed tbh, this is DD’s life and she copes with it so amazingly well and I just find it frustrating that even close friends seem to think it’s just a bit of random swearing

[Happylittlethoughts]

I have taught some children with Tourette's and it was so exhausting and frustrating for them. People do focus on the trait of swearing/shouting out offensive things and don't understand it can be a myriad of traits.
How very tiring for your daughter and heartbreaking for you to think of her life long struggle.
Other people dont get it. My daughter has anxiety and people don't get it. Hell I didn't get it until we really had to live it.
I can only suggest you dont look down the road to the future too often. Take it one day at a time , cliched I know.
She'll have you and her family and you are fantastic

[Alloalloallo]

Thank you!

Yes, it is exhausting. Even when she’s just chilling on the couch, she’s ticcing.

The levels of concentration needed to perform simple tasks is knackering

It affects her schooling - sometimes she can’t write as she’ll just be stabbing her book, or just opening and slamming shut her laptop lid. She has to have a scribe in exams and she hates the attention it brings when she’s at school.

We do have a laugh with it, it’s not all doom and gloom by any means. Baking with her ends in chaos (and scraping ingredients off the kitchen ceiling) but we have fun doing it. When we got back from the hospital last night she had a bath and all I could hear was “SPLASHING!!” Followed by sounds of the bathroom being soaked, and “just keep swimming” and we both got the giggles.

People do focus on the swearing and think it’s hilarious. People constantly say “oh, at least she can swear at a teacher and get away with it” or “she can say what she really thinks”, but she’d rather not be swearing at teachers as it draws attention to herself that she doesn’t want, and it’s not so great when you end up being threatened because you’ve called a random member of the public a moron.

She wears a Hidden Disabilities lanyard in the hope that it’s a bit of a visual cue for people, but it’s not always successful.

I do try and take it one day at a time, keep our chins up and stay positive, I’m just a little disappointed I guess, that even a close friend doesn’t get it.

[wombatsandaplant]

I have Tourette’s. Mine goes through phases when it’s very noticeable and other times like now when it’s almost exclusively mental tics.

Even when it’s just mental tics it’s exhausting. Most of my T-shirt’s have some sort of reference to tourettes. Sometimes it’s hilarious but vast majority of the time it’s horrible and exhausting.

[StayingHere]

Interestingly I was talking to DH about this yesterday. I have taught in 3 schools and in each have taught a child with a different presentation of tourette's. I was saying how absolutely exhausting and hard it must be to have tourette's and I am sure it must be really hard for a parent. Sending sympathy I'm sure its frustrating for you and your DD.

[Alloalloallo]

Thank you!

DD has complex motor and verbal tics, they kind of come and go in phases.

She’s very verbal right now, but sometimes 1 particular motor tic will appear and be quite predominant for a while and it will then fade to a background tic.

I also find, that most people think of tics as a more simple thing - a sniff, jerk of a shoulder, a blink, which DD does do, but she has a lot of complex tics too - head butting a metal pole, she went through a phase of licking everything, we had a phase of chucking drinks so she had to use a travel cup with a lid. She really can’t deal with eggs. I think people don’t really understand Tourette’s and tics, and some of her tics look deliberate, if that makes sense, which means some people think she’s faking.

If she watches a film, she’ll repeat phrases endlessly. She’ll sometimes get a word stuck on a loop, which drives me round the twist - at the moment it’s “poo bags”. If she sees a cow, for example, for the next hour all you’ll hear is “mooo”. Her brain will make funny connections - I was clipping DH’s hair in lockdown and she heard the buzz of the clippers and got stuck in a “to infinity and beyond” loop. Plus all the other totally random stuff she comes out with

The swearing is such a tiny part of it.

I do try and encourage her to laugh at herself and try and have a bit of a sense of humour with it, for her own sake and the sake of her sanity. She can be horribly anxious, which only makes the tics worse, so we try and walk a fine line between being silly and always being there for her when she’s hurting or frustrated or just downright pissed off with it all.

[picklemewalnuts]

I think it's important people understand the swearing, because in other circumstances it's an aggressive, deliberate, hostile act and people need to know that there are times when that isn't the case. It's less important other people understand things that only affect the sufferer, IYSWIM.

That said, I hadn't realised the physical tics can be so problematic- that they cause injury or are in themselves painful. DS had tics and still has significant tremors. As long as he avoids sharp tools and full kettles on trembly days, he's unlikely to injure himself or anyone else.

I'm impressed you and she can find the humour in it- it must be exhausting and infuriating for her.

[TransplantedScouser]

I’ve never understood why Tourette’s swear - can someone explain? I’m not being goady just genuinely asking.

Why is it always swear words and not just random words?

[mrswhiplington]

You sound like such a loving, patient mother. I don't have Tourettes but I had various tics when I was a child. I used to pull my tongue out at strangers, stop in the middle of the road to rub my ankles together, throw my head back. I also stammered for a while. Yes it was exhausting. My parents never made an issue of them. I outgrew them apart from very mild ones when stressed. My brother also has mild ones. Sometimes my peers would laugh at me which was hard. You are doing a wonderful job.

[DaisyDreaming]

There’s a good article about TikTok and Tourette’s, whether TikTok is fuelling new cases but they couldn’t make a firm conclusion due to the pandemic. It really does seem on trend at the moment. It’s a shame it’s not raising awareness of what Tourette’s can really be like

@TransplantedScouser only 10% of those with Tourette’s do swear. It’s more common to have things like motor tics and lots of people tic random words. There’s a comedian whose main word is ‘biscuit’. I guess swear words stick in peoples mind more when you think of the condition.

[wombatsandaplant]

@TransplantedScouser it’s definitely not always swear words, that’s a massive misconception. Only 10% of people with Tourette’s have coprolalia. Coprolalia is the term for ticcing of inappropriate words and phrases. The tourettes often says the worst thing you could possibly say at a given moment.

[beginningoftheend]

Sorry you and your daughter have these extra challenges, situations and events to deal with.

I have appreciated reading this as I don't know much about Tourette's so this has been enlightening.

I think you should maybe try to explain to your friend? If they are worth it that is.

Hope you have an event-free day today

[Gilead]

I have a dd and a ds with tourettes, it’s hard work for them. DS (26) broke a tooth a while back due to a gross motor tic.
Has your daughter seen the Tourettes hero Facebook page, Jess Thom is fab.

[picklemewalnuts]

Scouser, you know that feeling some people get approaching a high ledge? That you are afraid you'll throw yourself off? Irrational, but compulsive, none the less.

Some people develop anxiety around 'the worst that could happen', 'the worst thing I could say' etc, and the very anxiety about it causes them to say that thing. A bit like Basil Faulty's determination not to mention the war, or the fear of getting the giggles at a funeral.

[Alloalloallo]

@TransplantedScouser

I’ve never understood why Tourette’s swear - can someone explain? I’m not being goady just genuinely asking.

Why is it always swear words and not just random words?

Swearing is actually a very small part of Tourette’s, as a PP says, it’s only something like 1 in 10 sufferers who have Coprolalia.

DD likens it to laughing at funerals. You know it’s highly inappropriate, unpleasant and you shouldn’t do it, but the more you try and suppress it, the worse it gets.

She doesn’t actually swear much, and it’s always as a part of a more complex verbal tic. It is always the most inappropriate thing she could possibly say.

It’s completely involuntary.

With regard to TikTok/Facebook/Instagram, DD has completely unfollowed all Tourette’s accounts as she found herself picking up some of the tics. She used to go to a support group pre-COVID and says she often picked up tics there. It’s like they’re socially contagious. Her knee locking tic appeared after she’d watched Trippy Hippy who has the same tic.

Thanks all

[beginningoftheend]

She used to go to a support group pre-COVID and says she often picked up tics there. That is rubbish because it makes it hard to get support from others who know what it is like

I feel really moved by the story of your daughter. Sorry if that sounds patronising. Just I bet she is a great girl and it sounds hard work for her.

[Alloalloallo]

Thank you!

She is pretty damn awesome.

The support group stopped due to COVID, they are hoping to open back up soon and she will start going again. It moved to zoom, which she hated so stopped doing them.

[ParisWasWonderful]

Two of my four children have had severe Tourette’s

It’s a really painful, complex illness. I hate that people get fixated on the swearing.

Both of mine swore- they hated it - their brain forcing them to shout out words they barely knew.

We lost a lot of friends over Tourette’s and family did not speak to us for months. They can’t acknowledge it now.

Tourette’s should be recognised for the awful neurological condition that it is.

My son is doing well now, he manages his tics in public. Tragedy is that people don’t realise that because they see ‘ normal’ and don’t realise what lies behind it. He should have been referred to adult Psychiatry for support- but they are refusing to see him.