Here are some suggested organisations that offer expert advice on SN.
Real Life support(19 Posts)
Just wondering, are any of you involved in real life support groups? I'd like to know if you find it beneficial, if you get more info and support than you can get online etc. I feel like I'm getting all I need right now but don't want to give myself a false sense of security, if that makes sense.
Well I've made friends with 2 other mums whose children have Down's syndrome and one of those mums keeps in touch with about 6 women who I've met, all in my age bracket and all of whom have children with DS and it's nice to go out and have a glass of wine with them, or we all meet and get the kids together. I also met someone at church on Sunday whose little boy has DS and she made a beeline for me and sat next to me and was so pleased to meet me and invited me to a group of mums who meet the 1st Sunday of every month whose children all have SN and I think I'll go along.
We have a local NAS support group. They're a lovely group but unfortunately their meetings are difficult to get to if you don't have a car. I try to get to see their guest speakers when I can. They have also arranged an evening at a local play centre for families with children with AS/ASD. The whole family is invited and even non-sociable dh is really looking forward to it.
We go to an "Opportunity Group" playgroup for special needs children. The children get some (usually one on one) help from a volunteer while the parents have a cup of tea and a chat. It's lovely to be able to take ds2 to such a non-judgemental environment and it's nice to talk to people locally who know the system and have seen the same professionals etc. One of the problems with not having a diagnosis is that it is hard to know which specific support group to join so we haven't joined anything else as yet.
My son is deaf and I have met lots of other parents and children through our local NDCS group and an implanted (cochlear implants) children's group. I find the info exchange very useful. I hope it doesn't sound bad but I also find it useful to compare my son with other children, to see what to expect and try and change anything if I can. I think both positive and "negative" examples are useful. I also like the comments I get from other parents who haven't seen DS in maybe 6 months or more, it's nice to see his progress through other people's eyes. I also like to see how other children have got on meanwhile and that they are really all "getting there" sooner or later.
I take my ds along to one local support group which is every other Saturday at a junior school. They have alot of toys and facilities for SN children and have 1:1 support. My ds really enjoys it and lets off steam, mostly in the soft play room and I toddle off for a cuppa in the Parent's Room where I can let off steam too. It's good to speak to the parents there - we swap stories, consultants names, guidelines etc and I have made some very good friends there.
I am also a member of a behaviour difficulties group which have guest speakers every so often, and we receive newsletters and updates every month. I really find it beneficial. Good luck with finding a group near you Karen, if that's what you decide to do. x
belonged to the dsa in the UK as well as two local parent groups. Found the DSA very helpful in terms of conference days and information. Found the parent groups very helpful with info and support on a more practical level - as well as social events.
Here in Aus we are members of the DSAQ - very helpful in pointing us to the right people for therapy, referring us to other people for different things - so very helpful for that sort of thing. They have coffee mornings which often feature guest speakers or are pamper mornings for parents ( usually mums!!). Again found their support a very practical kind in dealing with things that crop up.
I run various support groups for different subject matters and i think they are for a certain type of person, who feels comfortable talking about themselves. Of course there is a lot of valuable support in meeting others in similar situations to yourself. My advice would be to give it a go.
I always tell newcomers that they do not have to feel obliged to join in, if they'd rather sit and watch for the first session thats fine.
Thanks for your replies, guys. Good to see that some of you do get good support from these groups. My own concern comes from my personal situation - having ME means that I have to balance my activity levels very carefully or I make myself ill, sometimes too poorly to cope as well as I need to with J. I'd love to be able to attend local support and meet local people in similar circumstances, but I'm worried that the risk I'd be taking with my own health would outweigh the benefits I'd get from attending the group. ATM I feel like I'm getting good support and info from online groups, though I appreciate that's not quite the same in terms of local resources. Perhaps I need to make more enquiries and find out what's available in my area first - it's not a problem at all if there are no groups for me locally!
I see!!!!!!!1 Sorry, I read it the wrong way if thats possible (anything is with me!!!)
I thought "real life " support group was an organistion!!!!!!
I am friends with a lady who lives round the corner. Weirdly we made friends as we bumped into each other with our major buggy's Weirdly her daughter has very similar problems to my daughter and we get on really well.
Also go to a group, once a month run by carers voice
Karen, DS1 has ME, and I am in contact with a couple of other mothers locally whose teenagers have the same illness. I was asked to speak to the other mothers to give them support, and of course have found that I am getting as much support from them as I am giving.
I find Mumsnet great, but the problem I have with online support is that I can't remember people's login names, so find it hard to follow discussions, as I have forgotten the background. Online support gives access to a wider group of people, which is really useful for conditions which are unusual.
Are you a member of any of the ME organisations?
I made friends online and then met some people in RL. We now speak on the phone a lot, and the local ones see often. May be easier for you than going out?
Some support groups can be a bit wearing as they are used for offloading (fine but not necessarily something you want to hear every week).
I go to a local ASD support group, they hold coffee mornings and evening meetings/guest speakers. I find it really helpful, especially as they know the LEA and local schools/nurseries/services very well.
They also offer help with things like DLA applications, statementing etc.
Keane - you've just reminded me that I met a woman at J's swimming class last week who had very similar problems. She's in the process of seeking a referral for her daughter's behaviour difficulties. She does sound very like J in many ways, so perhaps there's an option there.
mfh - I have much the same problem with the internet! I'm still struggling with the volume of posts on MN and confess to skipping the longer threads completely - I find it very hard to read and take in much of what's being discussed and it wears me out. I don't belong to any of the organisations - too political for me! I know someone has to do the campaigning etc but I don't want to feel guilty because it can't be me!
Beccaboo, your group sounds ideal but there aren't many like that around, I suspect.
I do have one good friend via an online ME group, she and her dh have ME as do her two oldest children, the third currently being assessed for AS. We talk a lot and exchange info, which is a huge help and outlet for both of us, I think. Would like access to local info, though.
There's an ASD support group in my area. They meet up one evening a month in a pub.I keep promising myself that I will turn up at the next meeting, but I never do. I would definetly go if my ds could go along though.
I must admit I've taken the one in my area for granted - I didn't realise they didn't have the same thing everywhere. Socci, have you contacted NAS, i would assume they will have all details of local groups?
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