Experiences of parents' support groups?

iVillage Member
Registered: 01-07-2008
Experiences of parents' support groups?
8
Wed, 03-05-2008 - 8:42am

Dear all,


DH and I are thinking of joining a local parent's group run by the Autistic Society. We thought it would be a useful way of finding out about local services (we are new to the area) and also to possibly make friends with fellow parents who 'get' the sometimes roller coaster experience of parenting a child with AS. I don't know how many of the parents in the group have children with Asperger's, or autism, or other spectrum disorders, so I don't know how our experiences will measure up.


I was wondering what experiences you have of participating in such groups? The only similar thing I have done is that I joined a self-help group for people with rheumatoid arthritis when I was first diagnosed, and I actually left the group shortly afterwards, because I felt a complete fraud. Most people there had much more significant mobility and other impairments (eg were in wheelchairs) compared to me, and I felt fraudulent looking for support for my fairly insignificant and, at the moment, temporary bouts of pain and mobility problems.


I am slightly concerned that I may end up feeling the same way, because DS (9) is certainly what you would call 'very high functioning' (non-professionals are always very surprised when we tell them the diagnosis because unless you know a lot about AS and recognise some of the tell-tale signs it isn't apparent at all) - he's in mainstream school, he has plenty of support, he's thriving and happy and doing really well socially and academically. I don't think I am going to have much to offer fellow parents whose children have different needs, so I don't want to end up feeling a 'fraud' again.


thoughts? Obviously we need to check the group out, and it may or may not be for us, but I was wondering what other people's experiences with support groups for parents of autistic/spectrum kids have been, and if there is anything I can do to prepare myself before the first meeting (the group meets informally at a local pub once a month). I really don't want to be one of those awful parents moaning about little Johnny's cut finger whilst you are dealing with Jessica's cancer, kind of thing!!


Kirsty, mum to Euan (9, Asperger's) Rohan (5, NT) and Maeve (2, NT)

"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 09-10-2004
Wed, 03-05-2008 - 9:04am
Kirsty, I don't have much experience with support groups as my son is so young and we're so new to the dx (last Dec).
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iVillage Member
Registered: 06-02-2004
Wed, 03-05-2008 - 10:25am

We have belonged to a parent support group for a few months now. It's been a great experience so far. There are parents of children with classic autism there as well as all other parts of the spectrum. There are times when someone is talking about something they are going through with their non-verbal child and I feel a little guilty because my dd with pdd-nos is pretty high functioning. But then I remind myself that there are others in the group who are in the same boat as me and I don't feel so guilty. My dh and I have learned quite a bit about services in our area and that has been helpful too. I would encourage you to give the group a try. You may be surprised at how much it helps to be around parents who have BTDT. Hope this helps!

Amy~Natalie & Lily's mom

iVillage Member
Registered: 10-03-2004
Wed, 03-05-2008 - 11:39am

Hi Kirsty,

We have found that participating in support groups has been so helpful for us, regardless of how different the children are from our ds. The best thing has been the friendship of other parents, and then the support, and finding out about professionals or camps or events, etc. Great networking.

Right now my son participates in a terrific social skills group (he is 10, PDD-NOS) where most of the kids are advanced of him socially, and most days he is pretty gosh-darn social for a spectrum kid. The group is challenging for him, and he gets a lot out of it. At the same time, all the parents of the kids doing the younger group have their own group, and I look forward to going every week. We discuss whatever is going on in our lives, and there is lots of sharing, laughter, even tears, among people who truly understand each other. I find this very helpful.

I have made several close friends at these groups over the years, and many of my son's best friends have parents that I love, which means we all really enjoy hanging out on weekends, even traveling together. And I have no trouble with my son sleeping over at their houses, and vice versa.

So, (obviously) I would encourage you to try the group out. Especially as you are new to the area, I suspect it will be very useful on many levels.

yours,

Sara

iVillage Member
Registered: 11-13-2003
Wed, 03-05-2008 - 11:47am

Hi Kirsty,


I say go for it!

Molly
iVillage Member
Registered: 01-25-2007
Thu, 03-06-2008 - 4:50am
I know what you mean. A new support group in forming in our area too and we are thinking of joining. I'm kind of nervous about it for just the reasons you mention. Another reason to be honest with you, is that Dh and I aren't exactly social butterflies ourselves! We're both fine once we get comfortable with a situation but we are definitely going to have to force ourselves to make the first move.
iVillage Member
Registered: 06-25-2003
Thu, 03-06-2008 - 8:38am

I have been a member of two local support groups both just for parents of special needs kids -not particular to Autism. One was facilitated by a social worker, the other is not. I found both groups to be great.

Most of the parents in my current group (unfacilitated) have high-functioning school age children, and even though the DXes are different, a lot of the issues are similar. I remember early on, one woman said something like; "You know when your kid has gone totally wild, and is climbing the bookcases in the library?..." and about three heads around the table nodded. She just got kind of choked up and said "You know, nobody has ever nodded before when I said something like that" Then we all got a bit misty and lovey -even Rob who is a man. LOL.

Our group is a bit like being here. People just get it and they don't judge.

Maybe I am just incredibly lucky, to have that kind of support IRL as well as here, but I don't think so. I think special needs parents are just different. Period.

I say go for it. What do you have to lose except and hour or two? And if you join a group and don't like it, you can always leave and join another

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 01-19-2005
Thu, 03-06-2008 - 12:51pm

I say give it a try too.

iVillage Member
Registered: 02-20-2001
Thu, 03-06-2008 - 1:57pm
In my area we have an autism group and an aspergers group both run by the same woman.

 


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