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?

Doesn’t mean they were right…..

clearly it does as the person directly involved felt it was right to issue an apology.
which is a personal decision which can only be made by the person that issues the apology.

Exactly, so you shouting your mouth off about what he ‘should’ do is so much hot air. It was his choice. Not yours or anyone else’s.

Equally had he decided to stay quiet that would have been the right decision for him. As he would have made it.

His choice whether or not to apologise for something that was out of his control.

OP thank you for this thread. I’ve learnt a lot. I wish all those with TS the very very best.

So just say you agree 🤣🤣 as he clearly did that’s why he apologised. Or are your feelings hurt because you was wrong .

Though we don’t know the reasoning behind it. He might well have thought that an apology was the only way to close all this down.

Or it could simply be
because even though it was no fault of his own . He still offended someone and apologising is the right thing to do .

I’m still struggling with your first post containing the phrase ‘educate yourself’ which appears in direct conflict to everything you then write viz. understanding and content. Still, here we are.

or did I reply educate yourself as a play on words repeating the exact same words that was said to me .

I’ve no idea to be honest most of what you write is incomprehensible.

🥲🤣 but you still find the need to keep commenting on my posts. and result to insults when nothing more interesting to say .

Yep that’s me . I really need to get a life oh wise one. Thanks - I’m off to teach Johnny D and my son how to apologise for their tics which will solve everything. I’ve ’educated Myself’.

I’ve had enormous sympathy ever since I watched the documentary My Street, by Sue Bourne.
Adam’s story was utterly heartbreaking.

Im so very sorry for your daughter and all she has to go through.

I hope posts like yours raise awareness and more funding can be raised to hopefully one day find a cure.

Thankyou for starting the thread

I think I remember this, it was absolutely awful.

Well teaching your kids to apologise for insulting someone is basic parenting really . The same way I would apologise if I accidentally stood on someone’s foot.
You expect people to understand tics . But you cant understand why someone would be offended being called the N word .
Guess you only understand when it suits you .
Two facts can be rights tics can’t be helped . Nor can someone being offended by the insults
understanding goes both ways.

I’ve not RTFT but thought I would post. I used to work with young adults with Tourette’s (late teens). There was one teen who had shredded arms from scraping himself on the floor and his self-hate from his vocal tics was truly horrible. (Not UK and many years ago). It’s awful, misunderstood. I am sorry OP.

I’ve had enormous sympathy ever since I watched the documentary My Street, by Sue Bourne.
Adam’s story was utterly heartbreaking.

Well teaching your kids to apologise for insulting someone is basic parenting really . The same way I would apologise if I accidentally stood on someone’s foot.
You expect people to understand tics . But you cant understand why someone would be offended being called the N word .
Guess you only understand when it suits you .
Two facts can be rights tics can’t be helped . Nor can someone being offended by the insults
understanding goes both ways.

I can’t understand how someone can read the whole thread and still refer to it as insults and compare it to standing on someone’s foot. Just the lack of empathy and humanity.

I would be completely fine with a tourist's sufferer around all my young children.

Ffs, what is wrong with you?

I can’t understand how someone can think being called the N word. Does not require an apology but there you go .

You heavily implied that a tourette's sufferer should apologise every time they cause an offence, which is clearly beyond the realms of ludicrous.

How can you come on this thread, designed to spread awareness of the horror of living with this awful condition, and make it your personal vendetta to attack thrm, one and all, for not apologising?

Heartless.

I can’t understand that you can’t understand that.

I've been trying to ignore you but in the light of your utter pig headed rudeness in the face of a number of parents of children who suffer a debilitating and deeply distressing condition. I am going to say: no-one was called the n word. People with Tourettes don't 'call' other people things. They say words - often the worst word they could say - often in stressful situations. Please just go away and troll someone else because your horrible lack of empathy is really distressing.

Well he apologised now so 😀