Talk

Advanced search

To ask everyone to read this on Tourettes?

(28 Posts)
toomuch2young Mon 20-May-13 10:17:14

Ok, so we are now in Tourettes Awarness month. I regularly chat to people on here and other forums, in real life and day to day about Tourettes Syndrome, and still people think it is something to be scared of, laugh at or mock. I and many others try and support and educate parents and other people affected by TS.

People on here and elsewhere regularly use tourettes as an alternative word for swearing, people still think tourettes jokes are amusing and fine to be published all over social media sites in a way that no other disability or condition would be. People fear tourettes and if their child is showing tics desperately try to find any other diagnosis it could be. I can understand the fear - It is almost impossible for me to leave the house without someone imitating or mocking my tics but it doesn't have to be this way.

Tourettes is a lifelong and complex condition, yes some children do outgrow tourettes, but many do not. It is a whole spectrum from very mild to very severe. Some people's tics are so mild it causes almost no impact in their lives. Others are so severe it makes even the most basic functioning impossible. ADHD, OCD, depression and anxiety are some of the conditions that often come with tourettes, in lots of cases it is these that cause as much or more difficulties than the tics. Swearing only affects 10 - 15 % with tourettes and when it does it is rarely as portrayed by the media. Motor tics are movement and can be anything from head shaking, blinking, jumping, waving arms, nodding, touching, grimacing and many more. Vocal tics include coughing, popping, clicking sounds, animal noises, stuttering, repeating phrases, shouting words or sentences, whistling, grunting and many more. They come and go and change frequently, some days can be lots of tics, some days less, this can lead to kids being accused of putting it on, or faking it, they certainly are not. I believe no one could fake tourettes long enough to get a diagnosis of it, and why whould they want to?! People with tics often learn to disguise some Tics or surpress them - but they always need to be let out at some time and are often worse when been surpressed and can cause you to feel ill. People living with severe tourettes often go through many different medications to try and find one to reduce the tics, these can come with many side effects. Is no cure for Tourette's syndrome.

Tics can be painful physiclally, humiliating, exhausting and isolating, and it is my passion to educate others so the children and teenagers with tourettes live in a more accepting world.

So please, if you are angry and are swearing then please don't say your having a 'Tourette's moment' , if you see someone ticcing please don't mock them, or pull your children away as if we were infectious, don't share 'jokes' about tourettes as all this reinforces the stereotypes and makes life that little bit harder for someone who already is having a difficult time.

flowers

DianaTrent Mon 20-May-13 11:45:36

thanks toomuch

I am sad you encounter so much prejudice. So many people are so scared of anything outside their own narrow view of normal.

Frustratedartist Mon 20-May-13 14:32:01

Bump

Bravo!
I think you're doing wonderfully to raise awareness of Tourette's
I have two children with it. Both came on suddenly and severely. They are doing reasonably well on medication
Both are at the top of their class in terms of academic ability and athletic ability. But they both have to cope with tics, anxiety, rage and obsessionality. Mostly they tic at home rather than in public. I don't think their friends and our family would believe it if they saw how they saw how my children really are.
It is a difficult illness to explain. Even Drs and Nurses can be pretty useless in their level of knowledge.

The tics are involuntary, they have no conscious meaning- even if they are sparked by something in the environment. The associated symptoms (see above) can be worse than the tics.

One of the ways to understand the nature of tics is to try not to scratch your face/nose. You can't last more than a few minutes once you start thinking about it. That's what an impulse to tic feels like. You can't resist for ever.

The teachers at our school have shown that people can be educated.
They have taken the time to read books on the subject, and have paid heed to my emails. They understand that my children suffer an illness, and they can see the wonderful potential that my children also have

Dawndonna Mon 20-May-13 15:09:05

Recently went to look at Sheffield University with ds2. We stayed at a lovely b&b, unfortunately, because he was nervous ds had lots of tics and knocked the teapot over at breakfast. If anyone wants to stay in a beautiful and totally non judgemental b&b outside Sheffield, let me know. The woman that ran the place was fabulous. Calm and efficient, didn't make a big deal, but we could see she wasn't being arsy either. Fabulous and so very rare.

marjproops Mon 20-May-13 17:34:21

yep. great thanx.

Dc has it and im fed up people thinking shes a badly brought up brat (also autistic) and their tutting and judgy glares at both of us.

I think Im quite discerning when it comes to figuring out someone has touretts or theyre just sweary people.

ddubsgirl Mon 20-May-13 17:52:12

A man was kicked out of a shop here in Brighton due to Tourette's sad my eldest ha facial tics and has been bullied over it inc so called family have shouted at him when he was younger to stop it hmm

Pixel Mon 20-May-13 19:02:10

I saw that in the paper ddubsgirl.

The shopkeeper defended himself saying he was "perfectly entitled" to throw the man out, then he said the immortal line I know what Tourette’s is but there’s no excuse for just making silly noises.

Idiot.
(the shopkeeper obv, not the man with tourette's).

ddubsgirl Mon 20-May-13 19:10:29

Yep showed himself up as a right dick grin we have a guy that comes in where I work and has Tourette's shouts 'bob' mostly he can't help it you see the odd person looking but most just ignore it and he gets on with his shopping Sure as hell not gonna demand he be kicked out!

marjproops Mon 20-May-13 19:15:21

shouldn't that shopkeeper get done for disability discrimination? and a good education too?!?

LittleMissGerardButlerfan Mon 20-May-13 19:39:44

I have OCD and anxiety/depression and can understand where you are coming from.

I never used to admit to anyone I had OCD as I was embarrassed, and I still don't tell a lot of people now, but I do try to raise awareness and don't mind talking about it in the right situation. I am open about it on here. I hate it when people think OCD means you just have a really clean and tidy house. And when people say they are 'a bit OCD' I just want to scream you have no idea! Just because they have to have all their tins facing the right way or something!

Don't get me wrong, it's great people are becoming more aware and are talking about it, but I do feel people make a mockery of it.

They really have no idea how debilitating it can be, and that there are many forms of it.

Well done for raising awareness of Tourette's smile

toomuch2young Mon 20-May-13 20:07:53

Thanks for all the messages of support. I saw that about the shop keeper and thought it disgusting, but sadly not unheard of. If I was closer I'd be going in there!!
frustrated I'm so glad your DC's are getting the help and support to realise their potential at school. In so many cases that isn't the case and is a lot of work to be done.

dawn hope your DS is doing ok and great you found somewhere supportive, people like that make all the difference don't they.

littlemiss yes I agree your spot on, people do also joke about OCD in a similar manner to TS. It's great your raising awareness of that to, it's not easy to talk about our neurological differences is it?!

50ShadesOfGreggs Mon 20-May-13 20:20:11

Thanks OP, I knew a bit about Tourette's but I have learnt a lot more from your post.

I will try and pass on the knowledge to others.

thanks

Thumbtack Sat 25-May-13 16:03:02

Really interesting post OP, I'll try and pass that message on too. What do you think of the various documentaries on Tourette's - good awareness or trashy tv?

Thumbtack Sat 25-May-13 16:12:35

Oh sorry, didn't realise this thread was 5 days old - Oooops

JuicyShops Sat 25-May-13 16:13:13

thank you, just trying to get a diagnosis for my son, he has most of the above, it is heartbreaking!!

TheRealFellatio Sat 25-May-13 16:16:36

toomuch I remember a couple of years ago seeing a documentary that was part of a Channel 4 season on mental health I think, about a young man (late 20s) who had such severe and debilitating Tourettes that his life was literally torture. He lived alone, isolated, unable to work or maintain relationships, too afraid to leave the house, he lived on delivered takeaways because he couldn't bear going into shops, and on bad days he could not stop ticcing long enough to cook or wash or care for himself, or even sit still to watch the TV. His levels of depression and anxiety were through the roof, and he lived such a lonely and isolated existence that my heart felt broken for him. He was an intelligent and otherwise articulate young man whose suffering was so huge as to be incomprehensible to someone like me.

He eventually died, alone in his flat. I think it was almost literally his ticcing that killed him in the end. He was just physically exhausted and all-consumed by it, as it would often go on for many many hours, relentlessly, so that he could not sleep. I will never forget how watching that made me feel.

I rarely meet anyone in real life with Tourettes but I hope when I do, however difficult it may be for me, I will be able to smile and chat and just make them feel normal, or at least as normal as possible. I have huge respect for anyone who can get out and live their life in the face of such enormous challenge.

McNewPants2013 Sat 25-May-13 19:02:49

What a very good post, all I know of TS is what I have seen on tv.

Apileofballyhoo Sat 25-May-13 19:27:18

I have googled Tourettes but nothing made it as clear as you, OP. Thank you for sharing.

weirdthing Sat 25-May-13 19:47:07

I used to work with a guy who had Tourette's. We worked with kids. All the kids loved him. He also had a Phd, a girlfriend and a child and had a great life altogether. I have lost touch with him which is a pity as he was a great guy.

LeoTheLateBloomer Sat 25-May-13 19:56:15

Thank you OP and other posters, I feel much more informed now. All the best to those of you who are living with Tourettes and a big up yours to the twats who make your life even more difficult.

elfycat Sat 25-May-13 19:59:29

I used to speak on the phone with a man who would call in sick when his Tourettes was bad call centre job for me. He also worked in a call centre and his tick was mostly silences.

I feel positively towards the company who employed him. But most of all I admire him.

I also see someone around town who grunts and head jerks. He gets some strange looks but I always say hi with a nod and a smile if we pass. If it's not Tourettes it's something similar.

Letitsnow9 Sat 25-May-13 20:13:34

Just a reply to say that I read your post xxxxx

Frustratedartist Sat 25-May-13 20:43:43

I was really pleased to see more responses on this posting because my experience of living with Tourettes is that others prefer to ignore it and not acknowledge it or learn about it.
My two children look so normal in public some of their friends and their friends parents don't believe they have the illness. So there is very little support for sufferers and their families to just talk about what it's like to live with Tourettes.
At times at home it is just like they show on the TV. But the TV doesn't get across the sense of suffering and embarrassment associated with your brain making your body DO and SAY things it wouldn't choose to.
I think just to get across the message that this is an illness that people should be congratulated on living with, would be a great start. If in anyway mumsnet can manage that I would be so grateful

ipswichwitch Sun 26-May-13 11:14:58

My 9 year old nephew has Tourette's and autism and last night asked me to go on the Internet and find a cure for him sad
He said he used to have a friend at scool who also had it, and it was great because they understood each other, but his friend has moved away so now he has nobody. Even his two friends he has now sometimes call him weird. It's heartbreaking, and even though the teacher explained it to his class, he's still having a hard time.
Today we were in the park and he went over to some other kids, introduced himself and announced he has Tourette's. they pretty much scattered sad
It's so heartbreaking.

edam Sun 26-May-13 11:24:33

My 8yo niece has recently been diagnosed with Tourettes. It's a relief in way because at least she has a name for it and realises it's not her fault, or anything for which she is responsible. But it is very hard for her. She's been seen at Great Ormond Street by a consultant team who seem to be the country's leading experts on Tourettes, but has recently decided she doesn't want to follow their programme right now - they made it clear she has every right to choose whether she wants to attempt to control/displace the tics or to live with them as part of who she is. She has the option to go back to them when she's a little older.

Thankfully her Tourettes isn't as severe as some people experience. And I've noticed she has developed her own coping mechanisms - she runs around like an over-excited child to disguise the tics.

She does have lots of social problems, relating to other children - can be over-exuberant and frighten them and gets on best with younger children rather than her own age group. She's rather isolated. unfortunately, and that hurts. In the last school hols, she was supposed to have a classmate over to play - the girl never turned up and my sister couldn't get hold of the mother. When she went back to school, it seemed the girl had decided to do something else that day and the mother hadn't even bothered to tell my sister. sad

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now