Support group for your childs disability?

[MandM-Mom]

Does anyone belong to a support group for your childs specific disability? In our area they are scarce, but thinking of finding one. Does anyone have any experiences with support groups, would you go to one? I think it would be good for my family but I am nervous, whats your experiences?

 

[MarieS]

I am involved with several list servs on the internet that have been very helpful. They include groups for kids with cerebral palsy, hydrocephalus and gtubes. As far as face to face groups, I am in a mother's groups for children with special needs. We meet once a month. I met these moms through my sons school or therapy. One day one of us ( can't remember who) said would anyone like to meet for coffee?
My area also has groups for kids with autism and down syndrome. You can find those types of local groups by calling the national groups. My sons have hydrocephalus and there are no local groups for that. I have found lots of info and support from my internet listservs. The mother's group is great because although we have kids with different disabilities we can support each other and we do have some things in common like school issues.

 

[Linda Bell]

Does anyone belong to a support group for your childs specific disability? In our area they are scarce, but thinking of finding one. Does anyone have any experiences with support groups, would you go to one? I think it would be good for my family but I am nervous, whats your experiences?

I belonged to the Spina Bifida one for my son years ago (face to face meetings), adoption support for special needs (all party based get togethers) and currently belong to an internet one for my daughter who has MD.

They are excellent for support. Especially good for those odd challenges that parents face as most have "been there, done that" and can offer useful suggestions. The Spina Bifida and MD ones have doctors which belong to the group too and sometimes they did special medical discussions and were more than happy to offer suggestions on general physical problems and adaptive gear to ease life's burdens in general.

For the kids it gives them a chance to find friends like them. Also get togethers were they fit in and can flourish.

Be prepared for lots of "fund raisers". On the plus side they are a ton o' fun.

Linda

 

[AJKMOM]

You could always start one. Maybe advertise at the local school, or special ed. center.

 

[BeckyScott]

I've been round and round with this.

I wanted to start one right after DS's diagnosis w/ autism. The autism epidemic hit a little late here, so there wasn't much need for a support group until about 3 years ago, at which point it hit like crazy. Since I was trying to start a group by myself, and with no $$, I met up with several problems. First off, I had a hard time finding anyplace to hold a meeting. ("Hi, uh, can we use one of your rooms for a bunch of autistic kids and their parents to talk?") Most places cited liability. Then. Short of running an ad in the paper, there wasn't a way for me to contact other parents. The school thought I was sweet, but they weren't cooperative. HIPPAA stuff. I approached our local disabilities center, sent the Big Cheese a wonderful letter, and they said they would consider it, never to be heard from again.

There have been a few attempts since then, by other people, that are general "kids w/ disabilities" groups. None of them has taken off very well. In our case, they are at odd times or too far away.

The closest thing we have, is the school district has a SpEd parent/teacher advisory committee. It's pure fluff invented by DESE, and they only meet 3 times a year. But they do feed us, and they provide respite. It's as close as we get, and I am always "up" for making friends with school personnel. They've done one meeting on autism, which of course was very introductory-level stuff, but we were welcome to add to the discussion. (and believe me, we did!)

 

[MandM-Mom]

Thanks for sharing everyone, all the groups by me are a few towns away, I don't want to make the drive but it looks like I might have to so that my family can get connected with other families.