What is your support group like? Do you attend one?

[mamadadawahwah]

Just interested what kind of support parents receive on the ground via their own support groups. Do you get plenty of opportunity to view your opinions? Is your group politically oriented or more just for talking and sharing.

I would love to find a support group that meets my needs and one that isnt afraid to speak up about how dire things really are and are willing to do something about it via each parent. Nothing like that near me.

My dd's condition is too rare to have a local group, but the national/international online one is fantastic and very supportive. I've learned that it's very helpful to be able to rant to people that truly understand the exact problems that you face.

We have had several meetings, and some of the other adult members with this condition have even made or sent presents for my dd to cheer her up if she's been very unwell.

I realise that this isn't the same or as good as being part of a proper group, but it's the closest I'll get.

My pead has sent us info on a possible support group in our area but the person who organises/runs it hasn't sorted it out yet.

I'm really looking forward to it, so is DH. It will good to speak to other parents with the same issues.

our official local DS support group is rubbish - the acivities are completely geared towards families with teenagers and up, and they took a year to contact me after dd2 was born (despite me putting in a request when she was a week old - I could have really done with some support during the early weeks/months).

I'm happy with the national organisation though (DSA).

The local group for SN parents focuses very heavily on autism so it's not really for us. They organise courses etc., but pretty much all geared towards families with children with autism.

Don't go to any, but the ped, who told us that DS has "severe development delays" and will need care for the rest of his life (he's 10 months old, no definite dx, no past events to indicate he should have a problem) did give us the special needs pack ("here's the rest of your life (in a box...)), and a pamphlett about the local "special needs playgroup" (as we'll feel out of place amongst "normal" mothers and babies...)...

Not planning on going....I've got a lot of support in the past just from internet sites / fora (not just here but more specific ones...)

I ran a support group for 7 years and still run it now as an EGroup only. I also have a very good friend who runs a local, very active, branch of the NAS. Very often support groups are run by parents on a purely voluntary basis and I have found that some people treat you purely as a resource and think you are there to do things for them. This can be very annoying, although most people are not like that. Our group is for people using ABA and is not based in any one LEA or local authority, it has never been associated with or affiliated to any organised charity - things which I think helped it work. Our meetings always focused on an ABA topic but with plenty of time to socialise and share info/ideas and our EGroup is open for discussion on any topic. What happened over the years is that those parents who had things in common, e.g. biomedical interest, children the same age, same LEA etc tended to get to know each other away from the Group. No-one was barred from saying anything but everyone had to keep in mind to respect others' povs and not dominate too much. I found running a Group very rewarding and it also helped me in practical and emotional ways. I knew very few other parents at first but then acquired a reputation for "knowing everyone", all purely through networking via this group. When we started very few people used the internet so there was much more of a need for a RL face-to-face group, although I still think that the internet is no substitute for meeting in RL but people just don't have to anymore. We had an evening meeting every other month in someone's home and this also helped make the group very friendly. We also got a lots of dads attending which was great for new dads who often have no-one to talk to. HTH

MM22bys, how awful and apparently common for that kind of response to be received.

Isnt it great how "they" like to write our children off before they even get on their feet??????

Great how these people seem to know more than God above about our children.

You could start a support group just on this basis, get all the other moms who have been told their children will never be up to much. we got the same B.S. from our paed when my boy was diagnosed at 2.5.yrs. She said she was NOT HAPPY with his progress that she had loads of kids coming to her office who were talking and playing appropriately who had an ASD. Wow, big deal.
If only she could see my boy now , with his thousands of words and his place at a mainstream school.

The only group in our area is like a tea and sympathy group. If anyone suggests something be done, they all say that is a great idea and one person usually gets left with doing it all. they want it all, but they dont want to do the work, so they end up not doing anything but moan about the way their lives are.

Your paed said that lots of kids with ASD are talking and playing appropriatelyif that were so, how would they have autism? -triad of impairments. What a strange thing to say.