Times article about severe autism

[Jimjamskeepingoffvaxthreads]

\link{http://www.timesonline.co.uk/article/0,,7-2141717.html\here} I don't necessarily feel the same way this mother does, but I think its a very honest and real article.

Thanks for the reminder Jimjams. Have been meaning to read this all day but things have got in the way. I will ensure it doesn't end up in the recycling basket before I get a chance to read it.

Just re-read it- I think the last bit stood out, that she doesn't know anyone in the same situation as her, I would feel like she does in that situation. I do have a friend that I can ring and say "OMG...gues what...' and she can usually tell me something equally hideous in return. Essential.

Very good article.

I have to say I feel more or less the same way she does about a lot of it. Not that Helena has Autism technically, but they seem functionally very similar. I just hope that by the time Helena's 14 I'm in better shape about it, mentally. And that I'll still be married to her father, though that's a whole other story of course.

Thankyou for drawing this to my attention. I know that I have no idea what it is like to have a child with severe learning difficulties of any description - although my Godson has AS. I have read some of your other threads JJ and it has really helped me to understand a little better what my friend has to cope with.

oh, I am glad someone has already done a link to this, I ripped it out of the paper to do this morning.

She is in Manchester and wanted contact info for anyone in the area in the same situation, can anyone help? It had a link at the bottom of the article to contact her c/o Times2, 1 Pennington Street London, E98 1TT.

I have seen lots of articles since the Alison Davis case has been reported .

Fiofio- I've just written to my loca NCT and said i'll host some coffee mornings for people affected by SN (for those with siblings they're too paranoid to take to normal groups as well :o). I'm doing it through them because while I don't mind making some cups of coffee once a month I can't be arsed with setting uo something and doing all the organising. I think the NCT is crap with SN anyway- they should be better.

Agree about talking about shit :o

what really disgusts me is the centre had to close as needs £200,00 atyear to keep it open.

I MUST STRESS THAT I DO NOT SUPPORT OR BELIEVE IN MOST OF THEIR VIEWS but 3 weeks a go we had a party election form put through the letter box for BNP and they said in birmingham the last year all the MPs and councilers there resturant bills and banquits bill was over £200,00.a year Thats JUST birmingham they said thats enough money to pay for transport to 1 special school for ayear. That treally shocked me so while we have these GREEDY councilers eating our money that money could be used for centers that they said in the times article it would stop a lot of suicides and give parents a breack and support they need.
Well i could also mention Cherie Blairs hairbill that we paid for £7,500!!!!! and all the stupid art works they give thousands to just think what that could pay for for our special needs children.

I saw a woman the other day who is a local counciller. I haven't seen her for years but I worked for her husband before I had ds so she knew enough about me to ask after ds, where he goes to school etc. I told her which special school he goes to and how fab it is (gushing a bit I suppose thinking she would be pleased that the 'system' is working for someone sort of thing)and she said "but think of the cost". I was a bit surprised and made a joke about him being worth it. Then she asked if he got transport to school and when I said yes, "Oh but the cost". I was so shocked to hear this that it didn't actually sink in until I got back to the car and I sat there for ages wondering if I should go back and say something but then I didn't know what to say. In the end I drove off but was fuming for days afterwards, partly at her attitude and partly at my lack of a brilliant put-down. If this is how all councillers think about the vulnerable people they are supposed to protect it is no wonder they would rather spend money on their tea and biccies.

Of course people have to run the coffee mornings (I dd some bumps and babes until I found that it didn't work for me and was turning me into a paranoid mess), but the NCT is one of the biggest parenting support organisations in the UK- the biggest at grass roots level I would guess and they provide nothing for parents of children with SN. I meant at a national level- as far as I can see (and I did search when we started having problems with ds1 as the NCT had been my biggest source of info up to then) they don't even mention SN, parents of kids with SN don't even seem to exist as far as the NCT is concerned. That's what I mean when I say they are crap. Maybe a start could be made with someone responsible at a national level for SN,- a kind of information co-ordinator, which could then filter out to the regions, and volunteers taking up responsibility locally. Since I;ve mentioned locally to other parents that I;m doing this they have said that they would be happy to host something as well- but it has to start somewhere- I do thoink the NCT could make a start by providing info if nothing else.

Ah I'm being unfair, I forgot about the experiences register. And tbh in one way the NCT is working, someone I met through it put a newly diagnosed mum in contact with me, which I guess is the point of it.

I've only just read this article. I have to say, horrible though I am, I thought "wow, she gets a holiday every year and describes him as placid".... I wish. I know there's never any point in comparing situations as they are all different, one of the main things being how we cope with them, but I thought it didn't sound too bad tbh

Davros, yer 'orrible you are :o I must be 'orrible too, because I thought the same thing.

Just to jump on the NCT convo, I think it must surely depend on the group that runs the NCT locally. I was a member of a post-natal support group when dd was born, however I dropped out once I realised that she wasn't developing typically.

Why? Because of the comment of 'ohhh, does that mean she's going to be a bit slow then?' or from the NCT chairwoman 'oh you have our utmost sympathy' (FGS, dd hadn't died!). I also felt that the support I needed was a bit more than, 'poor you, is she still not sleeping through the night then?'. I'm not knocking that level of support, it's just that my worries were very different.

However, I have kept in touch with a couple of the women from the group, who did make the effort to contact me when I was being crap, they have been really kind.
I think it's a great idea of jimjams to have the SN coffee morning. I often wonder where I would go to meet other mums if I was to have another baby, I couldn't face the 'standard' groups, but dd will probably be too old to qualify for SN toddler coffee mornings by then. If we end up moving I will offer to run one in my new area, however I think my local NCT group is a bit of a lost cause!

Hope you don't mind me butting in? We have a local SN parent & toddler group. Once the children go to playschool or school the parents are encouraged to continue coming. It's a mutual support & sharing of info. It realy works.. I just couldn't go to the nt groups anymore.

I've never had any shortage of groups and support networks for me as a parent of a child with ASD, too many if anything! But we do live in fairly-central London.... but like Jimjams, there's nothing to stop anyone doing a simple coffee morning without making a huge commitment.

Thanks Chonky for thinking the same as me about the woman in the Times! I had DD a long time after knowing all about DS and his ASD (7.5 years). The best thing I did was have help so someone else could make sure she was going to playgroups, soft play and meeting other kids. THat meant I KNEW I had some free time but also dedicated time to do things with DS. It was a good combination as I took her to Crechendo and to a weekly playgroup but that didn't put all the stress on me if I found anything unsuitable or that the other people were not my cup of tea. And I knew that I could take DS to his swimming and trampolining and get to meetings or school stuff for him too. I was lucky to be able to do that but, at my age, I prob would have collapsed without some help anyway!

davros can your son swim? My dd goes swimming but I think she is very far away from being able to swim. I have started to wonder whether she ever will be able to swim

alot of the support groups here seem solely for children with autism and we dont seem to fit into that category which makes us unable to go. We do get involved with Snaap groups though (usually daytrips out/fundays etc)

Yes, DS can swim, but he learnt at this club/session we go to for people with disabilities. They use the Halliwick method (I think its called) and, although you can't see WHAT exactly works, he learnt to swim very fast there. The session is good as its a big pool and we have it all to ourselves. THere's usually up to 10 disabled people plus carers/parents if necessary - adults and children - including severe physical disability, a couple of kids with ASD, adults with arthritis etc etc. I like the mix and its turned into MY swimming session as much as DS's.