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Tourette's syndrome.

(17 Posts)
kidsarehardworkbutgoodfun Fri 01-Nov-13 22:00:07

Do any of you have grandchildren with Tourettes?

Two of my children now have the illness. I've had a difficult time in recent years looking after them, and helping them manage their illness as well as possible. Happily, they're both doing well.

However, my mum has really upset me. She has told me I'm 'difficult' for having told everyone about the illness- trying to get some support. She also denies that my children even have Tourettes because she's never seen them tic. She has no idea how bad they can be. I think she fails to understand it as a neurological illness, and must just think it's bad behaviour on their part.

I'm not looking for anyone to sort out this problem. I just want to know what Grandparents think about Tourette's.

gracesmum Fri 01-Nov-13 22:14:24

Do you belong to any sort of support group? It sounds as if you are coping very well from your "name" and I am sorry your Mum doesn't have a more open mind about it. I think I can understand why she possibly does not want to admit there is a problem, but that's no help to you. I have no personal experience but every sympathy for sufferers and their families. Good luck with it (and with your mum!)

petra Fri 01-Nov-13 22:38:28

How awful for you that the one person, your Mother, does not support you.
I have just finished reading a book called, Biscuit. That was the word she used a lot when she was 'ticking' Very sad but very funny and uplifting in a lot of ways. It was free on Kindle.
I wish you all the best in what is going to be a very challenging time for you.
For a lot of older people this can be a very frightening condition. And especially the swearing can be offensive. But they are her GC and she must love them. Give her time.

Galen Fri 01-Nov-13 23:09:24

I have seen many people with Gilles de la Tourette syndrome in tribunals.
I can state emphatically it is a genuine syndrome and NOT a naughty kid thing.

Flowerofthewest Fri 01-Nov-13 23:18:23

My youngest DDS has a mild form of Tourettes not diagnosed until he was 19 though. Since about 5 or 6 he had verbal and physical tics. He even strained his shoulder and ankle muscles by tensing his muscles. He managed to 'hide' it quite well but the noises were more difficult to stop - he told me once that he has to let all the tics out when he is in his room. This was when he was and he asked to go to speak to our GP. While there he never ticked once. He is now 29 and a wonderful loving son. He has had a couple of long term relationships. He still tenses his muscles - normally stomach - the tics have lessened as he has grown older. He never had the shouting of obscenities or loud shouting. Although he did once scare a whole sett of badgers when he was eight. My DDH is a keen wildlife photographer and my DDS had the compulsion to 'bark' each time a badger popped its head out of the hole.
Didn't realise it was Tourettes - thought he was being a 'brat'. We don't really mention it to him because it is not an issue now. If you met him you would not know he had Tourettes at all. It does get worse if he is upset which, thankfully, is not very often. He was bullied badly at school and we thought the tics were because of this but it was probably the other way round. When he was 16 he started at a Red Balloon Centre in Cambridge which is a centre for badly bullied children and acts as a safety net until they are strong enough to return to mainstream or college. It was his saviour and ours. I would advise a support group as I would have joined one if I was aware that this was the problem.

grannyactivist Fri 01-Nov-13 23:22:40

Hello Kidsare, no grandchildren with this problem, but a lovely young student who suffered from this condition lived with me when he was learning English. He was Asian and very popular with the other children who, once his condition was explained to them, were very understanding. Have you come across tourettes action? If not, please do click on the link - I found the site very helpful when I was researching the condition before my student arrived. Might help to involve your mum in researching the condition too. smile

kidsarehardworkbutgoodfun Fri 01-Nov-13 23:33:01

Thank you. They were quick answers!
I'm very clued up about the condition. I've looked into the local support group - but it's not going to add anything- it's actually quite negative in its outlook.
I think it's just because it's my mum, and no matter what age you are- you're mum is special. When I mention anything about Tourettes on the phone I can feel her switching off.
I know the answer, it's not age related. It's just her and it's her problem. I can't do anything about it. And it was just getting to me tonight. I do want to thank you all for your support. It's not an easy condition to understand. My children are wonderful for putting up with it. I've had some wine & now I'm maudlin! But I feel a bit more positive again! Thank you

grannyactivist Sat 02-Nov-13 00:29:40

Kidsare, if you know quite a bit about the condition then you'll know that there's usually a great improvement with age. smile And if you're in need of a bit of TLC yourself at at any time then just pop back. Gransnet is a really good place to have a moan and groan and get a bit of support. Why not pop over to Soops's kitchen for a brew?

Hannoona Sat 02-Nov-13 04:58:04

I have a 22 year old son with Tourettes as well as Classic Kanners Autism, and additional mental health problems including paranoia and psychosis - the latter developed about 4 years ago.

When I told my late nana I thought my son was autistic, she told me - och don't say that. When I told her he'd been diagnosed she said - do you want me to keep it a secret. We live abroad so it could have been done according to her. She was a product of her time, that's all, but I also believe that because my mum had mental health problems, she had bi polar disorder, my nana thought she was perhaps in some way to blame for both of them being 'affy no weel' as we say in Scotland. And as it happens when researching my family tree I discovered my granddads grandfather had died in our local asylum in 1919 of a heart attack. Why he was there I really don't know, it could have even been due to mustard gas poisoning after the war but I doubt it. I think the facts speak for themselves - there is something in the family.

My sister in law here in Muscat stunned me the other day by saying I'm really happy that DS2 is going to be a father but I am so worried about this autism thing. I was stunned because there are 4 children on the spectrum in the family, there's my son, my sister in laws eldest granddaughter who has more of a global developmental delay but definitely on the spectrum, my other sister in law has a HF granddaughter, and I have my thoughts on the toddler grandson of another sister in law. There is also Bi-polar and Schizophrenia in my husbands side about 5 times over.

I was stunned because its just a year ago that my sister in law still spoke of the time her granddaughter got a bump on her head at 3 months of age and that's why she is the way she is - she's now 20. But more than that she has always said - there is nothing like this in our family, meaning autism. I would just say to her, there could have been in the past, and that you didn't see it.

My sister in law is everything to me, I adore her, we are each others support in life, but I have always had to leave it when she said - there is nothing like this in our family, because she would look so ashamed and uncomfortable when she was saying it. I felt heart sorry for her and not just because I knew she was in turmoil inside her heart and head.

It took a lot of learning and coming to terms with things for her to be able to say she is worried and she has now said - we will be worried about all of the babies to come. She's right, Im waiting on grandchild number 4 and each time I have a new one on the way I worry. I just told her what I tell myself and my children - well there's no better family to be born into, we are experts at this and we have the means to deal with it, whatever comes we will face it together.

Ive blethered, I know, but hopefully it may help you KAHWBGF.

kidsarehardworkbutgoodfun Sat 02-Nov-13 08:31:49

Hanoona (hope I've got that right), that's very helpful. I think I just need to know I'm not alone in having a close relative who really doesn't get it. I can't change what's happened, but we can deal with it and live the best life we can. If it all gets better, great. I do think my son will be left with OCD as he gets older- as he has those features now. But I also think he can still have a good and fulfilling life with our support and all his interests and other abilities.

It's the lack of being able to mention it at all to my mum, without feeling her totally disengage from the conversation. We generally talk on the phone as we live far away. All she wants is the superficial stuff about how well they're doing at school, and she has little enough interest in that. I think if she was genuinely interested just once I would be happy.

Someone was right about TLC for me! That's what it comes down to. And sometimes I'd just like a little bit. I do have good friends, and I do go to the support group. But hardly anyone does go, and the leaders tend to talk about their own problems - so it's not much support.

I do want to thank you all. It's helped put things in perspective again. We are doing just fine. I do realise a different Gran would care and would be there for me. Hope your families appreciate you!

Nelliemoser Sat 02-Nov-13 08:57:18

There have been a few programs on television made by those living with this condition, including a group who chose to make a comedy show about it.
To my mind this can only be a good thing. The more publicity people can give to these conditions and show how actually ordinary those with the condition are the better.

I can't find any immediate links that are not in German.
It is certainly a very difficult condition to live with but the more information poeple get the better.

shysal Sat 02-Nov-13 09:01:49

I think that sometimes older relatives find it difficult to accept that their children/grandchildren are anything less than perfect. I hope that, given time, your mother will accept that your children have a genuine condition and will prove to be the support you deserve and need. flowers

Did you see the TV programme where Reggie Yates got together a group of sufferers to sing and accompany a song? It was handled sensitively, but was hilarious at times and they were able to laugh at themselves. I hope viewers who come across the condition are now more understanding and will be able to look past the Tourettes to the real person. Seeing a Big Brother winner a few years back will also have helped the public perception.

Take care, have goodfun x

Mishap Sat 02-Nov-13 09:37:15

Tourettes is such a strange condition and it must be very hard for your mother to understand, as indeed it is for everyone. I think that she is just concerned for you and your children and is wanting to minimise (not belittle) things. Are you able to talk with her about how being open about the problem is a help for you and your children? Can you offer her some further information about the problem that might help her to understand?

It must be so hard that you are not getting the support from the one person from whom you had hoped to find it. I suspect that she is trying to deal with the problem in her own way - she loves you all and does not want to face the existence of a problem with those she holds dear.

We are all slightly in denial about my 8 year old GD who has been told she needs hearing aids - we are all saying that we never noticed anything and cannot believe it; and then when we sit down and think we realise what a dreamy little soul she is and that it may be because she is not always clued in to what is going on around her.

You sound like a really good Mum - doing your best for your children under difficult circumstances. Cut your Mum a bit of slack - attitudes to disabilities of any kind were very different when she was young - there has just been a fascinating programme about this on TV - and she is trying to deal it in her own way. It is a shame that she cannot support you as you might wish - but I am sure there are plenty of volunteer "Mums" on this site with relevant experience who will gladly step into the breach!

Good luck - and enjoy your children.

JessM Sat 02-Nov-13 09:53:16

Hi there
Have you ever seen this film The Tic Code about a boy with Tourettes? I enjoyed it. Pity it did not get more exposure.

Hannoona Sat 02-Nov-13 11:13:56

Re something Shysal said about people perhaps wanting grandchildren to be perfect - I think they can but perhaps for some its because they dont want their loved ones to live the difficult life associated with additional needs.

GadaboutGran Sat 02-Nov-13 12:18:19

All neuro conditions seem to suffer in this way but perhaps Tourettes is particularly misunderstood. My SiL, with Adult ADHD & Dyslexia, still suffers from his parents not believing his diagnosis. They are rude to him & my long-suffering daughter who has to micro-manage. They add to their stress when they really need admiration for what they do achieve. SiL has worked with someone with Tourettes & she managed to hold down a job in spite of involuntarily shouting out swear words. Also you may be interested to know that there is a lot of help available right through Higher Education to people with neuro diagnoses in the form of study skills/computer mentoring etc. Some people who matter really do help to find the ability in their 'dis-ability', which is as much a social as medical problem.

kidsarehardworkbutgoodfun Sat 02-Nov-13 16:24:40

Thank you everyone.
Lots of what you say rings true, and is very helpful.
I won't have regular access to the internet over next few days- so apologise in advance if I don't post again soon