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?

It’s still going. Over on the other thread they’re saying John Davidson shouldn’t have been allowed to go to the BAFTAs, that it’s good he’s not going to the Oscar’s, and that his ‘disability is abusive’ - direct quote. It’s his responsibility to mange his disability (which would mean stay indoors at all times I presume as to not offend anyone). Yet wondering why their posts are being deleted and decrying they aren’t ableist.

Thanks for sharing your experience OP.

Nobody disputes that the word was extremely inappropriate - that's what coprolalia is - as well as hurtful, but it was an involuntary outburst. By saying it shouldn't be dismissed suggests that you think there should be some sort of repercussions for John Davidson, or further discussion around him saying this word? He has apologised - the man is mortified. What do you expect him to do? I feel for all the people involved, including of course the actors on the stage.

Also thank you to the posters who shared their own experiences and those of their children 💐. Without wanting to sound patronising, I can't imagine how difficult it is.

This^
I also think the headlines were a bit wrong sided - they shouldn’t have focused on meaning of the word, they should have focused on lack of care and adequate response from BAFTA team and BBC.

thank you for your thread @DestinedToBeOutlived
I also have limited knowledge about this and certainly didn’t realise about physical side and that ticks could happen while person was sleeping.
It must be so difficult and depressing for your daughter and heartbreaking for you.

@BlushingBrightly surely that is on the Badta organisers who should have informed them that there was someone with tourettes in the audience and that his tics mean he can swear, say offensive things but that there is no intent behind it. They could have been offered the opportunity to do a Tourettes awareness course, Tourettes action do a free online one that is very good. Obviously no one has to.

Were they definitely unaware? I know at the start there was something said to the audience? But they hadnt warned other actors and professionals taking part? I Think that is fault of the organisers. In same way in a school or workplace we have a duty to alert our coworkers or to make other students, colleagues aware. We would say please be aware X may say/do this they mean no harm. You can do x, y, z if you dont like it, are upset etc.
Clearly lots of planning and oversight goes into these big events so that was a glaring error.. but equally look at all the publicity they have gotten some might say they did it delierately.... and in doing so they are harming the black actors and community themselves AND those with tourettes.

If the bafta organisers had not done that then that is in them. It is not Davidsons fault as a guest.

That would also have given those actors the chance also to say, I dont want to risk being subjected to that/to hearing that and decline their role.

I also wonder about positioning of microphones? Lots of factors that could have helped.

Perhaps they should ban all rap music where they call each other it every 5 seconds! Everything now is so over the top, last week it was Sir Jim or whatever hes called, now its this, next week it will be something else, surely people must have offense fatigue!

@pizzaHeart exactly I think that this is the issue, why did Bafta organisers not warn everyone that this could happen and explain the language that might be heard. I know they warned the audience? Or was that just in TV but did they not warn others taking part, handing out awards etc? That is the fault of Bafta.

What do you mean feel more kindly towards Tourette’s? Honestly at this stage, people must realise what Tourette is and move on. I hope the actor is ok.

I'm extremely fortunate that I don't have tourettes syndrome, but I have followed John's films, books and documentaries and I have so much compassion for him. I have another neurological condition myself, that makes my body have painful and involuntary dystonia. It affects my speech and movement, and it's awful to not be in control.

Bless you, I understand dystonia as it is part of my tardive dyskinesia movement disorder. Hugs to you 🤗

Exactly! If a student will start screaming “slat” at me outside DS’s school I will be upset, uncomfortable and scared but if I will know that it’s a
part of his Tourette’s and what’s behind it I won’t be scared or upset as I won’t take it personally. It won’t make any difference what he will say about me. My only concern will be whom to let know about it e.g reception or head of the year or pastoral team etc etc

I meant DD’s school but the approach is the same

I am not sure how it would work with a school and parents of other pupils in terms of respecting the privacy of the child with tourettes. But I would hope and expect at a minimum they educate the children in that childs class and year group. I am not sure how they can make parents aware. But maybe they could say something about different conditions and to make families aware of them. They obviously cannot say X child has tourettes but they could say we have students with various needs including tourettes, autusm, adhd etc and so sometimes there will be behaviours that you kay find concerning. Please speak to member of staff..

Generally kids will go home and name the child anyway but hopefully they will also say they have tourettes or school has tokd is about tourettes.

Honestly its very difficult, my child is very sensitive about his diagnosis and does not like it talked about.

At the school I worked in the parents of the lad with Tourette’s actually came in for one of the assemblies and explained how it worked, in particular explaining the fact their DS often said the very worst thing imaginable in a situation, gave a few examples of things he’d previously said and how it worked.

They basically said they didn’t feel there was any benefit to their DS by focussing on his privacy in that way when their child was likely to be in his class for years (it’s a one entry school, and even our high school isn’t huge) so everyone was going to know very quickly who he was and that he said things so they’d rather explain it all.

Over the years there was one or two times when other parents spoke to the school, but it was more in a “is there anyway we can deflect this current tic at all?” than outright complaining.

Sadly the lad still avoids me. My baby daughter died when I worked with him and he begged our HT to move things around because he feared what he’d say. He’s a young adult now and still tries to avoid me as much as possible.

@JustAnotherWhinger I have always taken the same method of explaining to parents etc. And acknowledging his behaviours can be upsetting but to say please let me know and I can try and see what can be done and also so that parents were aware.

I think as he gets older he will hopefully learn to do this himself maybe, it's hard to know as he has a lot of things going on and the interplay between them is hard. At the moment after very bad experiences in mainstream he is protective and doesnt like anybody talking about it. I have to respect that but can make sure I quietly explain ie befioe we go somewhere I might do a heads up appointment etc. He isnt in an education setting with others at all so it will be something to navigate as one goal is that he is able to access small ie no more than 6 children group activities once a week. But we arent there yet.

I am really shocked by the attitudes to Touresttes. I would have thought that the film winning awards would raise awareness and understanding.

I have been at the theatre, someone with Tourettes had verbal tics and was shouting "fucking cunts". Initially there was shock, the second time he shouted a few people laughed. After that, everyone realised and there was no response to it. People just got focussed on the performance.

There are teachers with tourettes, with classes full of children who are able to accept and behave appropriately. If children can respond appropriately, then so can everyone else.

Words can be offensive, but there is no intent to harm or distress others. And I think its rude to apologise on behalf of someone else' disability.

Popping in to give solidarity to fellow parents of dc with Tourette’s. My son is now an adult and absolutely winning at life despite the Tourette’s - perhaps because of it ? He’s had to learn so many social skills - putting people at ease creating humour out of the tics. His best friend is black - he was from Nigeria originally - good luck trying to call my beautiful boy racist when he tics the n word which he does. - I’ve found people pretty understanding in the main and we should look at the overwhelming support most British people and poc with Tourette’s have given - that’s been lovely to see x

I know a few school that adapted this approach for a different condition. It’s certainly benefitted to the child.

I would expect someone to apologise for saying something that offended someone else .

Watch the movie before commenting perhaps

John spends his life apologising
he should not have to be excluded and he should
not have to grovel

Yes he should have to apologise regardless of his disability he has racial abused someone . Educate yourself. If someone is mentally ill and kills someone do you go oh well. His mentally ill.

Have you read any of the heart-rending stories on this thread about what it's like to live with Tourettes? This isn't about the sodding Baftas. There are other threads available.

Thank you for sharing this. I knew very little about Tourette’s, I watched the recent film and have done some reading about it. It baffles me that people have watched the film and still have no/very little understanding.

The presenters/guests should all have been made aware that people with Tourette’s may be attending (not sure if they did), should have been bleeped out as they could obviously have done this and explained to the presenters afterwards- think they were American and it’s a British film so they may not be so familiar.

Have you read my post ??? As I was replying to a comment. And the OP references recent events multiple times.

No one has said he should grovel or not attend anything but an apology when significant harm has been caused by the words that have come out would be appropriate IMHO.

Thank you to all of those with experiences who have contributed.

I do think, unless you have experience, or go out of your way to learn, that most people think it's just some quirky little shouting every now and then, and that people who have tourettes can control it on some kind of level.

They absolutely can't, and trying makes it so much worse.

It's painful and debilitating and effects absolutely every area of your life from education to friendships to sleeping.

I really don't want to derail by going into the whole BAFTA thing, I've seen a lot of misinformation and this thread was about, hopefully, trying to counteract that.

I will say this though, we have no idea if JD has privately apologised to the two actors involved, nor should we know, that should be between them. He isn't due an apology to the world at large, that goes against everything he has been advocating for his whole life.

To you it's a word and an apology afterwards, to him it's a word and an apology every minute of his life. There are times when an apology is appropriate and times when it isn't needed, and I felt his statement and the fact he removed himself was more than enough.

Can you imagine for a second having a life like I've described in the op, and then having to apologise 1000 times a day as well.

This thread isn't about the baftas though, lord knows there's enough threads about that, it's about those living with tourettes.