Do you use RL support groups?

[lisad123isgoingcrazy]

Just being nosey

I run an NAS one

No.. I'm sure they are actually very good.. It's just not my cuppa tbh.. and I have to have the time to go as well.

With mn sn I can work and mn at the same time.. Or be about and on hand for ds.. And it can be dropped at a seconds notice.

I go to an evening one. I get back home happier.

Hi. I'm trying to start a london based one but have only had a couple of takers so far. I appreciate its hard to fit in around caring for our dc...

I go to an evening one thats held at a pub - its lovely as its more just a group of friends than a support group.

I used to go to another one but it turned into a session where mother would compete over who had the worse time of it - which wasnt my bag so I left.

No, but I'm considering it at the moment... Local carers centre was talking about organising a parent carers group,

We have an informal group where the mums whoes kids are at the SN group sessions get to meet for coffee and chat in the parents room, I have found that a bit of a closed group to be honest, but as kids have moved on and new ones have come it is getting more open I think...

I dont but may start a local one. :)

hmm intesting, I guess Im asking because I have just taken n the role of co-ordinator for our group. we have about 80 memembers but many dont come to the things we arrange. We have a core group of people who come to the parents stuff, and quite a few of the girls come to the activities we sort out over the holidays, but just trying to work out if its because they just arent group people or if theres something i can do to help. They have been a great support to us, and i have made some great friends :)

I used to go to the monthly parents support group run by a national children's charity beginning with B.

I posted on here a couple of months ago asking for opinions on what people would look for in a support group. This one had decided that some of the discussion was 'too negative' and members were being discouraged from talking about bad experiences with the SN system, we had to keep things light and positive . Some of us argued that it's actually not all that jolly living with a child with autism, especially when there's no real help out there, to no avail.

I felt that there wasn't anything there for me any more. I couldn't talk openly any more about lack of access to services, or the poor quality of them if you could get anything, and I couldn't offer my support to other parents because that would be encouraging them to be negative by telling what their problems were. It seemed to have turned into a 'support group' where those who were struggling weren't actually allowed to mention it and that kind of negated the 'support' part for me, so I left.

A few of us who were similarly disgruntled by this change in direction now meet once a month at my house, to offload all our 'negatives' and keep each other going. It's much better but sad that we've been forced out of what should have been a valuable resource. Shame .

Still, we have Gu brownies and we only got custard creams at the old one .

More so in the past, less now DS is at residential school and is 15 years old. I ran one for parents using ABA in London for over 7 years, I have gone to NAS branch in the past and we have one for our LA which is for parents of disabled children and then another LA one for parents of children with ASD. From going to them in the past I have now got a circle of local friends and we support each other informally, less need to go to formal meetings. I love MN but it isn't the same thing for me.

We have one nearby that meets once a month, which I haven't been to yet, but am planning on going next month. This forum is certainly helpful, but it would be nice to speak to people in RL as well. I honestly sometimes feel so isolated by this that I feel I need to meet other parents that are dealing with it as well.

I hated them when ds was small. Felt like one half of it was a competition, one half was listening to do-gooders telling you how to claim more benefits. [Disclaimer: My head knows those people perform a very useful service but my heart was screeching shut up just tell me how to get rid of this cerebral palsy. Of course I was living in cloudcuckoo land and suffering depression.]
Now I run Parents Group at school. We have become known as a little unorthodox as we rarely discuss the children, preferring instead to lay on the chairs, talk about each other marriages, eat biscuits and swap murder mystery books.
Recently we have come under pressure from the school to conform more. They have even appointed a Parent Support Advisor to help us. We have the benefits lady coming in to visit in January. And the Deputy Head has called a meeting to discuss outreach aspects of the Group. AND to cap it all, a new lady tried to make us put all the chairs in a circle. Good christ, we don't want to actually look at each other!
So we shall have to work harder. Therefore, in support of the Outreach Aspects, if anyone fancies coffee and biscuits with weird ladies at an SN school about once a month and you're in the Croydon/N Surrey area, do PM me. We don't fuss about what sort of SN or SEN your child has, nor whether they're at MS or SN school. More, have you got any good books to pass on to us.

Can I be a misery and say 'goodness me, no thank you'

I was offered a 'post diagnosis workshop' and poo-poohed that one asap.

Just not me- hate meeting new people and always too bloody knackered.

springlamb - I'm not in the area, but sounds like a good group to me. I don't think it always has to be "moan about how difficult it is" kind of thing. Sometimes it's nice to rediscover normality a bit with others that are doing the same thing. What can possibly be wrong with that?

I think that's one of the reasons I've been a bit hesitant about going, as I don't want to be in a "competitive moaning" session. I would find it depressing. Nor do I want to go and see that I'm the only one having difficulty coping lately, and see everyone else all Stepford, if that makes sense. Middle of the road, talk about anything and everything, feel like a human for a bit.. that sounds wonderful to me.

No, I have never been. Contacted our local NAS group via email and somehow ended up getting ranted at because I didn't want to apply for benefits and any help.

Apparently I had a duty to hold my hand out for anything going whether I needed it or not. Needless to say I never got as far as actually attending a group. I don't feel like I am missing out on anything although I suppose I could be.

I have to say, you will meet arseholes wherever you go, parents of kids with Sn included. I've met my fair share. But I've also met some great people who I might not otherwise have known and who are local. I wouldn't go if you are feeling very vulnerable but you often don't know until you get there do you? I think the fact that the one I ran we all had ABA in common helped, and maybe being in the same LA is a good enough excuse to get something out of it. I am a bit fed up with LA ones though, under the guise of consultation and parent participation they seem to want us to do their work for them, and this is before they've all been cut! I never felt that way in the past before they made such an "effort" to include us!

Nope - as the one time I went the people were v funny with me as DS didn't have an ASD DX, I felt they were prepared to tolerate me attending iyswim. Not so bothered now, but would have loved to have had a relevant sort group in the pre-school years, MN was an absolute lifeline at that point.

springlamb and streaky - very and at the powers that be thinking they know better than the parents themselves what the support group should be. unfortunately I don't live anywhere near Surrey, otherwise a non-DX dependent chat about murder mysteries sounds fab!

im so surprised by the comp feelings, never had this (lucky for me) but did once have a parent say "I would never put your DD1 on the spectrum"!! yes because thats helpful
I know our group does a lot for the girls, so maybe thats what helps.

Lisad123 Is your group in Herts and an ASD support group?. Im in B/S Herts with DD3 ASD and im sure i read one of your past posts saying you are in Herts.
Ive been looking for a local support group but they are all so far away. Hope you dont mind me asking.

no, and never have
I have always found other parents at dd's school to be the best support.

me12 you have a pm

If your child goes to a special school you do become part of a community/group but then you also have to sort out the ones you can be mates with. I think there is a difference between a group for parents only to talk and socialise, those that organise outings and events for the kids and those that do both. I have never minded putting up with or dealing with people I don't like or disagree with although I only go to our local ones if I feel like it, I won't go because they want bums on seats and prove they are including/consulting parents. The LA ones should, in theory, help inform local services but I'm still waiting to see that happen......

no I did go to one for a while but becuase ds was not considered disabled enough and or did not have challenging behaiour or Asd we was made to feel unwelcome

Hell one of the parenst said oh your ds is so a ms child and no she was not making pleasent conersation , he cant walk far can only just draw a wobbly line with penic struggles to use fork , minmal verbal and has mld but he was not disabled enough for them

opps thats pencil