My Tourette's Family

[SouthWestmom]

Anyone watching? Hate those t shorts

The mum is so strong! The kids seem lovely. Very sad story

Really? I'm getting something v different!

What do you mean ? What are you getting ?

I don’t want to seem horrible, and I couldn’t cope but the mothers anxiety seems to be picked up by the kids.

I thought I would understand more about Tourette’s by watching it but other than the social impact on the family, I am no wiser. Would like to know more about the science behind it. Seems triggered by anxiety although they seemed to manage their tics well going through security at the Eurostar.

Df was angered when the oldest boy controlled his ticking my chewing his hoody cord and his dad kept telling him to stop. I kinda agree, I’m maybe miles off, but surely helping him feel in control might actually let him be in control.

I thought mum was ace, the boys very sweet.

Opened my eyes to something I've not considered before. Getting out and about for a family with Tourette's.

I'm also seeing a very different picture

Hmm.very tough.i don't know much about Tourette's but how do they distinguish the genuine tics from the inappropriate comments that kids sometimes make? So for me watching some things seemed like genuine tics but other things the boys did seemed contrived, like the Hitler comment when she said they were going to Germany.

But I think in this programme it wasn't obvious their tics. Like if I'd seen them out and about and ticcing, certainly with some of them I wouldn't have thought they had tourettes. And I think normally you can tell can't you

My son has Aspergers, not Tourettes, but in the build up to our first trip to Berlin he kept saying 'Heil Hitler' and doing Nazi salutes. I was terrified he would do it while we were there, but he managed not to.
He had tics too, and you could see how hard it was for the older boy trying to control his tics and I definitely identified with that.

2 boys with TS here. Yes i watched the programme. I guess what i find frustrating about these programmes is that they always focus on the few that have swearing tics, i guess it wouldn't be entertaining without it . Also they don't mention wether they have co morbidities with it, which again is usually the most debilitating part of (for the majority of the TS population) having TS. Obviously i can see that the boys in this particular family have struggled hugely due to the swearing. My point is just that if the media are really interested in educating and raising awareness of the condition it seems odd they only feature what 10% suffer from.
The title of the programme also made me wince. Awful, but again done to draw viewings.

Twogirl Hmm.very tough.i don't know much about Tourette's but how do they distinguish the genuine tics from the inappropriate comments that kids sometimes make?

Very hard for those without it to distinguish i agree, but very easy for those living with it. So for instance when my sons have a tic be it a motor or verbal tic i can tell the difference but others can't. The Hitler tic, is because when you say 'Germany', there are certain thoughts that automatically run your head subconsiously, but you don't normally verbalise them. If you hear America, the word 'Trump' pops into the head, say, ethinc minority, 'black' might pop into your head with some associated thoughts. But for a person with Tourettes those odd, random thoughts pop out sometimes with meaningless phrases, like 'can i have fish and chips BLACK person?'. Words also get stuck in a TS person's head, an example might be some years ago, i watched a program where someone was described as a 'necrophilliac'. Thought nothing of it after that but for a TS person, that words is tucked away somewhere ready to come out later. Months after the program, the TS person is in a shopping centre and suddenly blurts out to a stranger, 'Necrophilliac!' are you a necrophilliac? TS person is wondering where the hell that word came from but can't stop themself.

Many times there's also slight change in voice when its a tic, its done or said out of context. I noticed the older boy in the had a lovely calm voice but when ticcing it changed slighly. When ds has a verbal tic his voice sounds more aggressive and strained, nothing like the usual way he talks.

I'm not sure this makes it any clearer for you, but it helps a little or perhaps confused more, if so i apologise.

Purpleme You are partly correct in what you observed. Most tics are actually just normal body movement or sound like a typical phrase. The difference is they happen out of context and are repetitive e.g waving when there is no need to be waving at anything, hoping and twisting for no apparent reason. The ones most people easily recognise are things like strange neck shrugging or body shrugging, grimacing and of course swearing. This is the reason why many do not recognise people with TS because when they tic, people they think its just normal like my dc.

I really find it hard to accept that people watched this programme and felt judgemental of the parenting: this rather misses the point, that the programme was trying to highlight what we may not otherwise realise- the day to day struggle of such families to do perfectly ordinary things (walking to school even, bless him), the stress it brings about for all concerned and how limiting and isolating it can be to the children and their families. I felt only compassion, must say.

We had a wonderful woman (with Tourette's) come in and talk to us at work recently. She did tell us some of the science and talked in an interesting way but what is more interesting was her talking about family life, the struggle to get a job/ have a relationship etc.

I have taught several children with Tourette's. One thing the programme didn't show was how bloody exhausted the sufferers (for want of a better word) are nearly all the time, although it did convey the almost continual anxiety sympathetically.

I want really sure what a couple of the people above meant when they said they got something different from the programme

It felt (to me)they were implying that the parents were either causing or exacerbating their own DCs' Tourettes. The first is scientifically ridiculous and the second horrifically unsympathetic imo.

As a parent of children with SEND I couldn't relate to the huge focus on Tourette's - t-shirts, wrist bands, telling strangers before any need etc esp with the ages of the dc. However I appreciate that tv is edited and this may have been the production company .

Definitely not implying cause or exacerbating.

I know parents of children with ASD who do that, though.

Tourette's isn't a SEND as such though ( I mean obviously it is educationally) but it's a neurological condition which is also heritable (as mentioned in the programme)

I thought the waiters and Eurostar people were great with the kids.

But I am relived to hear that was not your implication.

Haven't watched it, am sure it will show people who swear because after all it makes much better telly, despite the fact that swearing tics affect a small percentage of people with Tourette Syndrome. It gives me the absolute rage.

I got the impression the parents know what’s what with their kids. Eg if their kid said fuck off they’d know if it was the tic speaking or if their kid was saying fuck off and therefore needed telling off for swearing.

I didn't think that's what they were doing with the swearing. It wasn't sensationalised. We didn't actually hear that much swearing.

I loved the older boy's really deep voiced mate.

@Piggywaspushed yes, generally I don't like that. If the kids had ASD I would have felt uncomfortable.