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?

"Davidson, a Tourette's campaigner from Galashiels in Scotland, who was made an MBE in 2019, shouted loudly several times before and during the Bafta ceremony.

He said on Monday that he was "deeply mortified if anyone considers my involuntary tics to be intentional or to carry any meaning".

"I have spent my life trying to support and empower the Tourette's community and to teach empathy, kindness and understanding from others and I will continue to do so," he said in a statement.

"I chose to leave the auditorium early into the ceremony as I was aware of the distress my tics were causing.""

https://www.bbc.co.uk/news/articles/cz6edwg06n1o

I brought up masking earlier in the thread and want to point out that this can cause major problems for those that are able to mask their tics, as often they build up and then come out later.

And repeated tics can also cause medical issues. for example if a tic is to repeatedly shout, constantly over a long period of time it can cause problems with the vocal cords and in some cases cause problems swallowing.

They have done. It would be nice if people like Jamie Foxx could do the same for claiming to know it was deliberate and not his condition. I doubt he will though.

Did you miss the part where the OP didn’t want this to be about the BAFTAs. I suggest YOU educate yourself by reading some of the posts on here from people who have children with Tourette’s and stop being a judgemental and ignorant person yourself.

How fucking awful for you both….it must be so so difficult for your DD to try to navigate life

I write and post what I like scroll on . Then she shouldn’t have referred to it multiple times .

He has not even personally apologised to the people he racially abused. He only put out statement. He should personally apologise to them

On threads on MN about the BAFTA incidentI have seen appalling and offensive ignorance about Tourette’s and appalling and offensive ignorance about racism and its effects. I know
black MN users who have had to hide these threads they found them so upsetting.

Saying JD did not mean it, so it’s ok, misses the point. His vocalizations are informed by culture. Shouting that word is a reminder to black people that this is how some people will always see them, no matter who they are or what they do. No acheivement or public acclaim will change the fact that this how how too many others see them. That word was a reminder of the culture that means that word exists and has power. It’s not about JDs intent. It’s a reminder of the culture that means that word was chosen by his disability.

It’s not an either /or: no one should be minimizing the hurt or harm caused to anyone in these incidents, whether the shouter or the shouted at. Minimizing it causes further hurt.

I have no idea what the solution is to situations like this, but I do know we should acknowledge the legitimate experiences of all parties.

OP, I am so sorry about your daughter. I genuinely can’t imagine how hard that is for your daughter and you. Watching your children suffer is the worst pain. I hope one day that is medicine or treatment that can help your daughter.

I agree @tealgrey

He didn't abuse them.

As I have said a few times throughout all this, it's the difference between your husband opening a cupboard and accidently elbowing you in the nose, and him deliberately punching you in the nose. You wouldn't call the first one abuse because it's an accident, even though the pain would be the same, the second one is abuse because it was meant to cause harm.

You have no idea if he has personally apologised or not.

Dd and I aren't white so we absolutely get all sides of this.

There is no solution really. JD couldn't help shouting it, they were hurt to hear it, they should have some understanding about his situation, he has already shown understanding by leaving, they can make choices not to be around him, or any tourettes sufferer again if they wish. That's about the best that will come out of an impossible situation really.

Dd has said some awful things, in fairness they are usually aimed at me , and it does sting a little in all honesty, but I soon get over it as I would any accident.

My mother has it. I hate to say it but after 64 years of living with this I feel like a coiled spring when she is around. She doesnt swear but does things like hyena laughing and clown faces and I cant bear it any more.
Being with her is like being with someone who continually scrapes their nails down a black board. It isnt just the person who has it that suffers its the whole family.

I feel for your DD.

I don’t have Tourette’s but I have epilepsy - adult onset - and i definitely can’t help a seizure so I do get what you’re saying.

I’ve also worked in an educational environment where I’ve come across a couple of individuals with Tourette’s although not as severe as your daughter from what I could see (maybe they were medicated).

I watched I Swear in the cinema - it was very affecting and really taught me a lot about the condition.

As far as the incident goes,the bbc were remiss in not editing it out which would’ve stopped so much of the backlash. The fault lies with them (again!).

Your DM is very strong to live with it for so long. It must get very wearing for you both. I understand how hard it is for you to see her with the condition but she has to live with it... having no control over how your body moves is very shitty, and I know unfortunately 😕

I was a youth worker when I was at uni, and worked in a youth club for 11-16 year olds. We had one young lad there who was 14 and had Tourette's. He'd shout out things like fuck, you're a slag, cunt, tosspot and so on. In all fairness to the kids there, they ignored it but most importantly they didn't ignore him.

He's really done himself no favours here.

I swear should be shown in schools. It might hopefully raise awareness so the next generation isn't as close minded as the one we are seeing now.

I totally agree OP.

People I have known who suffer from Tourette's (and I use the word suffer deliberately as that best describes it) have told me that the things they shout are in fact the complete opposite of what they actually think and it is as if their brain finds the thing that will embarrass them most and that is what comes out.

I think the reaction from the Baftas is ridiculous and in fact will be counterproductive to genuine issues of racism because it is overreach and inappropriate.

Your posts are offending me…

I don't want to derail the thread more by responding, but he had in fact personally reached out to apologise, it's in Variety.

Oh do get a grip dear.

The Queen didn't ask him to apologise when he shouted F the Queen where she awarded him a medal. If the Monarch can be understanding and have empathy why can't the rest of them?

Oh get a life dear

And who exactly is them

😂😆😂

Who are you to say an apology it not needed ??? Two things can be correct at the same time . He can not help what he said . But also people can be offended. One doesn’t out rule the other .like I said if someone get attacked or killed by someone with mental health issues. Do you also so say well it can’t be helped they are mentally ill.