My Tourette's Family

[SouthWestmom]

Anyone watching? Hate those t shorts

I thought this family were amazing. I was in awe of how the parents were with their boys. I found the programme uplifting.

I imagine the telling people is based on advice from support workers and advisers though noeuf

Tourette's isn't a SEND as such though, Piggy can you explain what you mean by this?

OP i think the telling of people their dc had TS was incase their kids swear at someone or start shouting/swearing on the train, so people are at least prepared and also to guide against any confrontation. I think that was quite a sensible thing to do. I think the wearing of TS shirts etc as well was for the same reason wherever they are.

Afraid I dont share your opinion on not sensationalising the swearing. I have never seen a programme about Tourette Syndrome which doesnt include someone with that particular tic. Yet it is actually quite rare to have the swearing tic. Whether it is overt sensationalising or not, more people will watch because there are people in a TV programme who cant help swearing inappropriately. And if you ask anyone about the condition, the very first thing they will always mention is swearing, which is solely down to TV programmes.

*winners8 , I suppose what I meant is it is a medical condition (not all DCs with Tourette's even have an ECHP which is interesting...) and not 'the same as', say ADHD , although it can be accompanied by that. I am actually directly quoting a Tourette's advisory teacher there.

If I come across someone behaving as those children did in public (especially the swearing form of Tourette's0 , I would rapidly conclude it was Tourette's but I work in educational and so am informed (and open minded). I, too, can see exactly why a parent would tell diners in a restaurant and so on, where their child's form was extreme, as was the case with the younger boy in particular.

I think it would really help if you told people

@Piggywaspushed
EHCPs are reserved for very few of the pupil population (just over 2%) lack of one is no indicator of no SEND.

I'd love to meet some advisers and support workers to give me some advice. Six years post dx and it's non existent. (Various incl ASD and ADHD, OCD)

I am sorry to hear that. In my area that are good Support Workers and advisers for ASD, Down Syndrome and Tourette's but they are often parents who have just had the resources, knowhow and sheer bloody mindedness to set them up.

I know lack of an EHCP does not indicate no SEND but our support worker was clear in saying educational and advisory work would often focus on the co -morbidities which affect learning the most, rather than the Tourettes itself.

Anyway, I think those parents were doing what seemed and felt right for themselves and their family.

Yes I was surprised. I thought we'd get some strategies but it's just guesswork. I tried one par by led group but it was not for me . Lots of moaning and anger. What I want is what I've seen happen on other countries and I guess is an ABA type approach to help dc learn strategies to manage

Piggy (Like the username by the way)

What did the Tourettes advisory teacher mean by its not the same as ADHD though? they are both neurological conditions. (Infact the prevalence of having TS with ADHD is as high as 60-80%). We know they are two separate conditions, although with some overlapping symptoms, but what did they mean in relation to SEND?

My dc do not have an EHCP but one is on the SEND register because of the ADHD element. I think EHCP and SEND are red herrings because it all depends on type of tics, severity of tics and co morbidities the person has at any one time, because the wax and wane and change. Whatever it is, they still struggle and not being statemented doesn't really indicate the struggles the person has in accessing education. What it does highlight is that there are many TS sufferers especially children, suffering in silence without any support.

I can't verbatim quote her and didn't want to send this thread down an SEN route to be honest!

What I don't like on some threads(or in SEN in general) is the idea that parents must or must not do things : more that there are a range of things which suit some families. The family in the programme clearly had support networks, hence the wrist bands etc

I think what our lady was trying to communicate to use is that when we know a student has Tourettes, we don't realise all the SEN issues that can accompany it and assume they are symptoms/ part of the Tourettes , rather than seeing them as separate, but intertwined issues. Not being very clear.

Some students with TS have 'milder' (for want of a better word symptoms than others so many will be on an SEN register but receive little to no in school support whereas others will get loads, but probably more related to ASD issues etc. She was trying to make it really clear to us that TS is medical and not behaviour related / caused by anyone/ something a bit of a firm hand can sort out.

Not trying to be unnecessarily argumentative BUT I'm not sure what distinction the advisory lady was trying to make exactly. ADHD is medical and presents behaviourally. It is not something you just develop or is caused by someone, neither is it going to be cured with a bit of a firm hand.
Its not by coincidence that 60-80% of those with TS also have ADHD, likewise those with ASD (i don't know what the percentage is) also have ADHD. It is the same part of the brain that is affected and they are born with it. ADHD is also more than just behaviour, it affects executive function skills, it comes with anxiety.

ADHD can be managed with therapy and behavioural techniques to manage the impulses. But the most successful treatment to date is with medicine.

Yes, I don't thinks he was trying to distinguish actually : she was just saying they weren't the same and that there weren't things in the same way to 'manage' Tourettes. I think.

Why do I feel like they put it on abit 🙈