Tourette Syndrome - a little education.

[DestinedToBeOutlived]

There has been a lot of misinformation on here due to recent events, so I thought I would share what life is like for my dd, who has been living with tourettes and seizures for almost a decade.

I hope other parents, and those who live with tourettes can also share whatever they feel comfortable with.

syndrome - NHS [[https://www.nhs.uk/conditions/tourette-syndrome/ share.google/mxz8qKuhru11KtzQH

My dd also has epilepsy, often the two go hand in hand. Her tics are as involuntary as her seizures.

She absolutely cannot help what she shouts or when. It's not just shouting either, it's things like head jerking, whistling, blinking really hard, hand movements. These are often painful for her, and as such her school is at about 40% attendance.

Because of the narrative around tourettes, as displayed on many threads, kids stay away from her, so she has no friends, the only other kids that talk to her are other kids who have tics and they can't really be in the same room as they all set each other off a lot of the time and it all ends up very painful for all of them.

We have tried endless medications, most made her worse, some made her tics a little better, but came with side effects that just weren't worth the trade off.

Because of the attitudes of others she suffers from anxiety, which make things worse for her.

She can be walking along quite happily and the shout that I'm a slag, or she can be in the middle of school and start shouting things like "jam and toast" as well as many, many other things.

Sometimes she will have a seizure and people rally round and understand that, but there is no understanding for her tourettes, because people seem to think those are voluntary, or she can suppress them, or she can walk away and calm down and she will be fine.

Tourettes simply doesn't work like that, the tics are as random and involuntary as her seizures.

It could come on at any place and any time at all.

She has tics in her sleep so wakes up in pain every morning, which also effects her schooling.

You may see a 20 second snapshot of someone and think it's funny or offensive, but unless you have to live with it you really don't have a clue.

It's not a case of "well you must be thinking that, that's why you said it", it can't be prevented any more than you can prevent a hiccup.

To anyone who has formed an opinion due to the recent news story, please educate yourself about tourettes first. It's a scary syndrome and you're not in control of your own body. Can you imagine living with that day in, day out.

You wouldn't tell someone in a wheelchair to walk because their wheelchair is in your way, or someone who has asthma to stop having it because their coughing is pissing you off, or someone having a seizure to snap out of it because you need past them, so why are we telling those with tourettes to make their world smaller to accommodate people?

I would expect an apology accident or not . If my partner accidentally hit me in the face and tried to carry on like nothing happened . I would think he was a disturbed individual .

He has apologised.

That may be the case now I haven’t read the news today. Yesterday he put out a statement that is not the same as a personal apology . Plus most people are stating he doesn’t need to apologise.
because they aren’t personally offended .

There are a million other threads on the BAFTAs. I've said all I'm going to say on that.

If someone with severe mental health problems killed you they wouldn't be found guilty of murder and they wouldn't be treated the same as someone who had capacity and murdered you deliberately . So your analogy is not quite the gotcha you think it is. Although being killed or assaulted is not quite the same as being offended now is it.

Well if a mentally ill person had murdered someone in your family . they wouldn’t be walking the streets .
So an apology is the least they are owed .
you do realise this is public site and I can write what I like. You can’t police that.
and who are you to say that someone being racially abused wouldn’t have long-term effects on that person . Or is their mental health not as important as someone with Tourette’s.

It was an embarrassing outburst for all three men and should have been edited out by the BBC. I hope Davidson apologised afterwards for spoiling the other participants' big night and I hope they both said "not at all, think nothing of it".

I've seen the film, it was worthy and mostly harmless. I did not approve of the moment when he hit his neighbour and she said it was her own fault for standing on the wrong side of him. I know it was meant to be showing she understood his condition but it is such a dangerous and damaging trope. Especially after the nice man said he'd kill him if he hit the dog again and seemingly he never did. You can't hit a dog but women understand.

I’d rather live my gray life than your black and white one with such a limited understanding of this situation and derailing a thread with my own agenda because you cannot understand the concept of ‘involuntary’.

You're ranting for the sake of it now. I'm not going to engage with you or your misplaced anger, made up scenarios or blatant lies about what Ive said anymore so no point in keeping on quoting me.

you said that last time but yet found the the need to quote me again .sometime he truth hurts not everyone is going to agree with you

Dd goes through phases of having very violent physical tics. They do tend to be on her right side more than her left, so it's wise for any of us, including my grown up sons, not stand on that side during those tics. Nothing to do with being a woman at all. If we forget and end up hurt then, tbh, it is on us because we know it's likely to happen and dd can't control it. As much as it hurts being hit, the tics also really hurt and exhaust dd as well.

I don't think you quite got my point there. Being expected to understand is very much about being a (nice kind) woman, and the film handled that badly.

His friend understood, another woman in the film absolutely didn't understand and arranged for him to be attacked. So I disagree it's about women being kind.

Exactly. A man was able to set limits and still be kind. The film did not show a woman set limits (even for her own safety!) and also be kind and udnerstanding. That was my problem with it.

Same with my daughter. She has very violent tics sometimes, and nasty tic attacks. Most of the violence is towards herself but she does hit out occasionally.

Her worst is her right side - maybe because it’s her dominant hand? I don’t know, but we do know to avoid that side of her if she’s violently ticcing. She has caught me a few times, but it is what it is, she can’t help it and she’s never really hurt me and has never hurt me as badly as she’s hurt herself and she’s highly unlikely to be around any other people when it’s happening though.

What limits do you think she should have set? She stood on the side of him knowing he has violent tics at that side.

It's not a film about men vs women, it's a film about his very real life and experiences. This happened to be how those parts of his life transpired.

I think it must be to do with it being the dominant side. I know of a left handed kid with tourettes and her tics tend to be on her left side.

If dd catches me she will says something about me being on that side. I've had a couple of black eyes through the years, but it's totally my fault for forgetting. I don't blame her at all.

Dds are also aimed at herself frequently too, it's absolutely heart wrenching to see your child going through it, so solidarity to you 💐

I told you upthread that he had apologised directly and that it was in Variety. If you're going to be awful about a disabled man, at least keep up.

She stood on the side of him knowing he has violent tics at that side

And he stood on that side of her knowing he has violent tics at that side. Or maybe he didn't know that yet. But it wasn't exactly explored.

It's not a film about men vs women

No it wasn't, but then again women are likely to be carers. Like I said, the film was mostly OK, I just noticed that contrast and it jarred.

how have I been vile to a disabled man for stating an apology was needed .which obviously he agreed with ,if he has in fact apologised
so you’re the only viral one
calling people names.
so seems I was right 😀
FYI I like to I like to check facts not listen randoms on MN .

She wandered over to that side of him to get something. It happened quite quickly.

They couldn't explore everything in great depth, there was a lot to get through but I feel they did a great job of representing tourettes in a very real way.

I don't see that as a contrast, I just feel it was 2 things relevant to his story that were put into a film about his life.

Just to add as well ime it's a good representation of the reality of what happens.

If dd tics and I'm standing in the wrong place , his reaction is almost identical to dds, she will make light of it and so will I.

Inclusivity has to have limits, for safety if nothing else. It’s not all or nothing.
Someone with that type of Tourettes would not be safe around young children or adults with learning disabilities - I’ve read about John’s dog having to be specially trained because he shouts at it to go cross the road in front of lorries - so would it be ‘discrimination’ ’ to not let him have a job as a lollipop Man?
If he can’t control his words then he absolutely needs to exclude himself in certain situations precisely because he Knows he will say something, what happened to personal responsiblity? It’s NOTHING like Alzheimers for example.

But presumably the character had to learn to avoid that, and your DD has to learn to avoid it too? Because not everyone is going to make light of being hit, nor should they.

And if someone can't learn to do that then inevitably their life will be limited.

My dd needs to learn to avoid ticcing?

Accidents happen, they always will.

And if someone can't learn to do that then inevitably their life will be limited.

Well, yes, the point of this thread was to speak about all of the limitations those with tourettes face. She can't learn her way out of it.

I’m not the OP that you quoted, but my daughter has similar issues.

Are you saying my daughter needs to learn to avoid ticcing? Or that she needs to somehow learn avoid random people walking up to her close enough that she can hit out at them?

And yes, her life is extremely limited and isolated