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'm so sorry 💐 my dd also struggles with food. We have had quite a few choking instances due to her tics, so she needs someone with her 24/7 and she is also tiny. I need to be outside the bathroom door when she's in the bath, a shower is impossible.

It's absolutely debilitating in every area of life.

It really isn't just shouting a few words every so often it impacts absolutely everything.

I am glad these important discussions are being had today, however infuriating it's been.

While I understand how upsetting the insensitive comments have been I do think overall the fact this has raised awareness of Tourettes is a good thing. Is there any hopeful research into new treatments op? It sounds like such a debilitating condition.

I agree. It has been a pretty upsetting day, but I'm glad the conversations have started.

There isn't a lot of money put onto researching tourettes. I know for a while dds doctors were hoping if we could get on top of her epilepsy that may help with her tourettes, but it seems as though her seizures are largely under control now, her tourettes is worse if anything.

My personal opinion is there's no money to be made from researching and trying to help tourettes sufferers so they don't bother.

We luckily have had no choking. Just physically can't get food up to her mouth. Tics will sometimes cause her to throw any food she manages to pick up.

The vocal tics can be constant sometimes. Almost like a running commentary on everything she sees or hears. I remember vividly the first time she told my poor parents to Fuck off (as a tic obviously) and she was absolutely distraught.

Unless people live it they will never fully understand it. We are 5 years post diagnosis and it's still developing and changing on a daily basis. Still takes us all by surprise. (Told a police officer I was a drug dealer the other week). I'm not!

I have taught several children that had torrettes.
It took a good while to convince them that they shouldn't mask their tics, and even then they were never fully confindent that they could just let the tics out.

It’s most be so hard to parent a child you feel everyone judges . Sending love and compassion.

Jamie Foxx comes across as IGNORANT and ableist. He claims it was intentional and inappropriate because he is so fixated on his own sensitivities (very valid ones) that he has lost all ability to see outside at other people’s issues. Tourette’s is a disability abs a well documented one. JF has just outed himself as stupid

On the Baylen outloud programme she tries a wearable device that apparently has also been used by Lewis Capaldi.

https://neupulse.co/

For those that don't want to click the link, this is the device that was in the John Davidson film

I was on a train opposite someone who had Tourette’s. Within a few minutes you could see how absolutely exhausting it was. Obviously was a bit of an interrupted journey for me but honestly how anyone could fail to see how debilating a condition it is

I've seen those, however great they may be dd can't have it due to epilepsy, which is devastating.

I'm not sure of the exact percentages but I do know it's very common for people to have both.

Sorry I havent seen the film and didnt know it had been mentioned there. I just saw it on the discovery show and googling brought up lewis capaldi

I’ve got Tourette’s. Had it since I was a child and I’m 36 now.

i shout things involuntarily. The things i shout, can be linked to what im seeing and also to what im trying not to shout. If you have Tourette’s you will be aware of how many things go through the brain at every moment. Like neurons or pathways firing, so you may shout something related to what you see but not what you want to shout.

i feel sorry for the black people who obviously had a horrible word shouted at them when they shouldn’t have had to. and I also feel sorry for the man who shouted it and worries people think he meant it. I would feel the same way.

I’m so sorry for your dd and everyone else, it’s a horrible condition and I do understand that tics are involuntary, I have always had some tics myself as am ASD, though not Tourette’s, and have been bullied for them as a child. But, I can also kind of see it from the other side too as whilst people should be as tolerant as possible, there’s some situations which just don’t work. For example you can’t have someone ticing swear word s or other inappropriate things around young children, and racial slurs aren’t really acceptable even if you know it’s not the persons fault. In a controlled place that raises awareness like in the awards ceremony is different , but out on the streets with random people where you don’t know their story, or family places with young children, are just different. I’m not sure what the answer is as it’s not their fault but I can see why people are less tolerant in certain situations.

The film absolutely blew me away and I thought about it for a long time afterwards, it must be so hard for your daughter and your family just trying to live day to day, I hope that the awareness of the condition is given more discussion and that it's not overshadowed by one comment. The film and John has done so much to raise awareness and it's a shame if that all goes to waste now.

Sending love and solidarity to you and your daughter 🩵

The fact he left the BAFTAS half way through because of the shame he felt is absolutely heartbreaking. OP I’m so sorry that your DD has to live with such a life limiting condition ❤️

One of my DC has Tourette Syndrome. Thank you for this thread OP. If people want to debate what happened last night, maybe they could find the other (ableist) threads and pontificate on there.

No-one will ever understand the suffering and judgement people with this awful condition face. My DC had to change schools after the teacher told me that [my child] 'comes to school to improve in every area, and that includes their TS'.

No-one, unless they live with a TS sufferer, or have it themselves, can have even the tiniest understanding just how desperate life is. Many posters on the other thread should be absolutely ashamed of themselves.

You say you realise that tics are involuntary then say they shouldn't happen in front of children. That's not possible - because they're involuntary. You would be condemning people with Tourettes to never go out if you were demanding they never say anything inappropriate in front of children.

Today I've seen people on MN say those with tourettes should slap their hand over their mouth to stop a vocal tic, that those with tourettes shouldn't be out in public, that JD must have had that word in his vocabulary and use it that's why it came out, that that's the first thing he thinks when he sees a black person, comparing those with involuntary tics to child abusers and on and on.

Thank goodness MN has been hot on deleting the worst ones, but the overall attitude still prevails.

I advocate for my dd all the time, as all the parents on this thread advocate for their dc all the time, and it's exhausting, but clearly being an advocate in my own corner of the world isn't enough.

I really hope that this incident doesn't stop JD from his important work, and long may the discussions continue.

Am I right in thinking that often tics manifest as fundamentally against the person’s own beliefs, in a similar way to intrusive thoughts. It’s because they desperately don’t want to say them that they sometimes come out.

But this is what I mean, it’s an impossible situation isn’t it. Of course someone with Tourette’s can’t and shouldn’t stay at home, but I don’t think it’s ok to say offensive things round children such as in a soft play or a school as examples. I don’t think many parents would be ok with that. And you can’t know everyone’s stories, yes adults should be more tolerant where children aren’t involved, but you don’t know that someone is ASD and might not pick up on the situation or be able to tolerate shouts of swearing, or that someone has mental health issues and can’t be having abusive language shouted at them, no matter the intent or not.

Yes, a lot of dds vocal tics are pretty much intrusive thoughts coming out. So when I get an intrusive thought my brain allows me to suppress it, when dd gets one her brain doesn't allow her to, it just comes out. Like trying to suppress a hiccup. You can't, or even if you can fir a second it comes out louder.

They can also just be random sounds or words or phrases or movements. Dd can hear something on TV and pick up on the most random thing, she blew kisses for a while, says a word or two in a funny accent etc.

There are worse things in the world than children hearing someone shout cunt. Some children do what sweating all the time. My ds used phonics to sound it out when it had been sprayed on a playground 😁.

Children are actually very aware of swearing and they are pretty good at working out context and when words can and can’t be used.

My son had tics and was diagnosed with chronic tic disorder at 9. He is also dyspraxic, and the tics have decreased and never moved to Tourette’s. But they were painful and disruptive for him.

My dd is autistic and it’s similar when people don’t believe she should be able to queue jump at the airport, because “nobody likes waiting”. Without realising for her this isn’t a won’t, but a can’t. There are lots of things with some disabilities tha people are selective about believing. Especially if they perceive the disabled person getting one up on others.

My DD17 has TS as well as ASD and both cause chronic fatigue so she struggles so much being around noise, busy-ness etc even a few hours at college can be debilitating. She’s quite lucky that the meds, clonidine, work pretty well so brief spells at college mean people don’t realise she has it, but tonight she wanted to watch I Swear and goodness those tics came out thick and fast! It didn’t help she was quite ticky today anyway as she’s stressed about college today after a week off where she was meant to be recharging after being burnt out, except she got a horrible cold just as half term started so has been exhausted with that
it’s such a debilitating condition, rarely escaped, antipsychotics aren’t nice drugs re side effects (thankfully DD responds to a different type of drug), but the BBC are completely to blame for this multifaceted pile-on, for TS sufferers, POC and anyone with disabilities, they’d never show a clip of someone with any disability struggling with their condition, but it’s deemed , what to me seems like a good sensationalising clip, to throw a raft of people into the pits to see what happens … bastards!

My youngest chikd has tourettes. I love the film I swear and am glad there is more debate. We only recently got the diagnosis (on top of several other diagnosis that he already has including autism, pda and adhd) the interplay of these comorbid conditions is hard!

I found this free training/information by Tourettes Action really helpful for anyone wanting to learn more

https://www.tourettes-action.org.uk/155-elearning.html