As I said in the CISD thread, my son has finally been diagnosed with Tourettes syndrome after several years of assessments and "cosy chats" with child psychologists - despite it being one of the first things we suspected, everyone has prevaricated about it until someone finally made it official the other day. He also has mild symptoms of other autistic spectrum disorders, and possibly has petit mal epilepsy - he has to go for an EEG to check that out.

Anyone on here have any experience of this, either within their family or amongst pupils they teach etc? Please PM or email me if you don't want to post in public, but I'd really appreciate any advice you can give.
Thanks,

Hazel

Hello Hazel,
Yes I have experience of caring for people with Tourettes- a condition which is closely linked to Autism. Please PM and I can help with your questions. Or if it might help others, post on here. One resource which is invaluable is the Tourettes Association. They have an excellent website and if you register, they will send you regular newsletters and updates in Tourettes care etc.

Jillian x

Thanks AB - will look at their web site tonight! Any advice is welcome, and I guess my primary concerns may be answerable by others even if they don't have direct experience of TS, as the same issues could crop up in many scenarios.

The first one I'm having trouble with is how to tell family members - I found it quite easy to tell his teacher, as she's been very involved in the whole assessment process, and like us, already "knew".

Likewise I have told a few people at work, again ones I'd already discussed it with (and we work in a hospital ).

I've told everyone here! but none of you "know" me / him...and I also really respect everyone's advice and know you'll all be supportive...but broaching it with family is MUCH harder - Mum has enough on her plate with Dad and his Alzheimers and other things, and I'm also worried about the "don't be ridiculous, all he needs is a good talking to" approach that I know will come from some of the others who think that things like ADHD, TS and Aspergers are just society's excuse for bad behaviour and poor parenting.

Also the fact that the doc said it is almost always inherited from either the mother or father - we keep thinking, so which one of us has it then....and we keep examining each other for symptoms

The doctor said not to broach it directly with him yet, he would give us some guidance on that next time we see him (end of April), so again I don't want to tell family, and have one them blurt it out or say something insensitive in front of him.

Which also brings me to band tour - we are all going on the band tour at Easter - should I tell everyone at the next rehearsal so that they understand his behaviour whilst we are away - but at the same time tell them he doesn't yet know himself, so to be careful what they say? Or should I not tell them and hope nobody twigs?

So many questions, sorry!

Hazel

I personally think it would be a good idea to mention this quietly to a few other people. Some years ago I made a right fool out of myself because I was questioning my next-door neighbour's sudden outburts, resulting in many tears from him. My mum later told me it was Tourette's, and I've never bothered about it since. Occasionally it surprises me, but I've learnt to accept it and think that complete acceptance of Tourette's Syndrome in society would be a large breakthrough for sufferers of the condition.

Surely, in this situation, diagnosis means nothing. He has exactly the same syndrome before and after, so treat him in the same way you have done, before and after.

I think there is now a much greater understanding and tolerance of Tourettes. Not too long ago I saw a lad with his mother in Liverpool City Centre. He kept shouting out swear words, some directed at people he was passing, calling them the 'c' word, and other things. At one time people might take offence at this sort of behaviour, but nowadays, people know about the condition, accept it and ignore these outbursts.
I know having your son diagnosed will be a major concern to you, but its far more understood and accepted now. I wish you all the best in coping with it.

No experience except many years ago at work when it was not understood so well. A worry for you, and so hugs are sent to you
Beverley.

Thanks everyone, and those who have PM'd / emailed me too - really appreciate your support!

You're absolutely right bobifier, he is still exactly the same boy as he was a week ago (and a very lovely one at that )

Everyone at band is really nice, and they're all quite intelligent too, so I strongly suspect that over the course of the week's holiday, (sorry tour!), it will become apparent, which begs the question, wouldn't it better to be up front with them, rather than people be wondering?

Hazel

BTW the form of TS where oscentities are voiced / gestured is quite rare, mostly it's just twitches, grunts, or coughs. His little thing at the moment is to do a double nod, which he finds quite disruptive when he's trying to read or watch TV - also when he speaks he often "barks out" one syllable of a word which people interpret as him shouting. Before Xmas it was screwing up his eyes in conjunction with tipping his head back, his school work really suffered with that one

It might be worth letting the organisers know, then if it doesn't become a problem, they are watching out for him but it's not an issue for anyone else, and if it does come up, they can deal with things from a position of knowledge not ignorance? If he may have petit mal epilepsy too then that I am sure they would want to know, if he is under their care then it's only fair that they are aware (IMO) though I don't think it's necessary for his contemporaries to know unless they need to... if that makes sense... Hopefully if it's an intelligent group they will have the sense to accept him "as is" (don't we all come "as is" anyway, one way or another ) but I think it would be fair on those taking responsibility to be upfront.

D'oh! Just realised you said "we're going" so I guess he will have you as back up - still think it would be fairest on the organisers for them to be made aware of it just in case it becomes an issue though... you don't want people to ask him insensitive questions, though I guess if you've been in the band a while they may have come to accept some minor symptoms from him? I think children can be remarkably accepting, but both children and adults can end up asking (unintentionally) thoughtless questions if they don't know the full picture...

I should add, I have no experience of TS, just thinking of it from a clueless person's (ie my!) point of view if a child showed behaviour that I couldn't explain when I didn't know there was a problem... it would be good if key people were in the know and able to explain.

Hope you manage to work out satisfactory answers for all these thorny issues, it must be stressful but at the same time probably a slight relief to at least have a diagnosis.

Hello Hazel,

I think I would be up front with everyone if I were in your position. Your son will show signs of "odd" behaviours and it's far better if people knew- especially other youngsters who might not understand, or who could take the mickey. I wouldn't make an announcement about it- just an explanation if anyone came up and asked me what was wrong. Perhaps a quiet word in the tour leaders ear would be a start so that he/she is aware.

I work now with a lad who has Tourettes. He has his medication which helps his tics. He comes out with grunts and half words like your son does. It is human nature when we are out that people will look or pass comment but on the whole, the community has been very accepting. Unfortunately, it has been known for youngsters to be turfed off buses for their "Behaviours" purely through the drivers ignorance of Tourettes,

I believe there is a card that they can carry now to show people if their tics or language worsens, so that they can make them aware they have a condition, rather than a behavioural problem. They can also show it to supply teachers so that they can leave the lesson if they need to go off and deal with their tics and things. I have hundreds of advice leaflets and numbers I could pass on to you, but unfortunately I am not at work until Monday now. If you want anything PM me with specifics and I will do my best to find out for you.

Jillian xx

Thanks Sarah and AB - I probably should have made it clear that there are only a few other kids going on the tour, and none of them actually play in the band, they're just joining in with the holiday aspect of it, so it's mostly adults and partners, and whilst our band leader will organise the gigs etc, he'll have very little to do with the "organisation" of the rest of our time. But you're absolutely right, I will make sure he is aware, and at least a few key others too, especially those whose kids are going too.

My husband thinks I am secretly hoping someone else from band is a forum member too, and hence this is a cop-out way of getting the message round, so if any of you are, please let me know on Monday night Although I don't think anyone is, I'm sure I'd have recognised them by now....

Thanks for the website link earlier AB, it was very helpful.

Anyway, I have spent far too long on the computer over the last few days (and nights!) worrying about this (and work ). We have a hectic few days coming up with several parties and my daughter is in a ballet show (she is a chicken in "la Fille Mal Gardee!!!), so we have rehearsals, and then the shows themselves, which we all plan to enjoy!

So if anyone has any more to add, please do so, I may not get to respond for a few days, but I shall get to it eventually!

Hazel