Parental Support

As a parent of an autistic child, where do you find support?  Only on the internet via your blog?  Do you have a face-to-face network?  What is it like?

For the past two or three years I’ve been attending Al-anon and ACOA meetings.  In our format, a topic is introduced, there’s often a corresponding reading, and then attendees will reflect on how the topicapplies to their life.  But each share is supposed to focus on the members experience, strength and hope.  Negative venting happens, of course, but the point is to figure out how to take a situation and make it better.  Perhaps by acknowledging your part in a situation and taking an action to correct it, or perhaps by realizing there is nothing that can be done and simply accepting your current reality with grace.

Our BOCES is trying to start a support network among the parents of autistic children in our school district.  I’ve attended all of the meetings, but they’re awful.  There’s no mutual support, offering suggestions for what works in other houses, no positive reflections on what is working or proactive ideas for how to address a problem.  There isn’t even a hug or an expression of empathy when someone is having a difficult time.  It’s mostly just bitching and blaming.  Two families arrive angry – every single time.  They talk about causes and lawsuits.  There’s another family I’m trying to connect with but progress has been slow.  I’ve tried exporting what I know from alanon – not in a preachy way, I just mean I try to share a recent success or a problem we’re having and what we’re currently trying in addressing the problem.  It goes over like a lead balloon.

However, I refuse to give up on the group.  I want to believe that the anger will fade with time and we can actually support one another in a meaningful way.  There’s another meeting tomorrow and I’m looking forward to it with equal parts dread and anticipation.  Last time we met I ended up ranting on a post here that I had to make private, there was just nothing good that would come of leaving that out in the ether.  Tomorrow, whatever happens, I’ll find the good and accept the rest.  And continue to use my blog to find the kind of support I need.  🙂

Published in: on January 10, 2011 at 5:16 pm  Comments (7)  

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  1. There is a similar group in our area. I have been to two of their meetings. The first one scared me and I didn’t go back for another two years. I only went back because they had a topic that was really interesting for me. The thing that I struggle with is that people need to be able to tell their stories because for many it is healing. However, when I hear some of those stories I become anxious and overwrought with worry. I worry about how those emotions change how I interact with the school. It doesn’t help the parent/school relationship for parents to be operating from a “watch out….they are just looking for a way to not provide services” mentality.

  2. I wrote about our experiences with support groups in March:

  3. The hardest lesson I learned in Al-anon is that the room is not filled with healthy, recovered people. It is filled with people struggling through the disease of alcoholism. Sometimes their reaction to something I said wasn’t healthy, loving, or supportive. I had to learn to accept that fact. The people who attend BOCES might be filled with pain and anger. They might not know what a healthy support group looks like or feels like, or how to participate in one. They may not have a higher power on whom they should rely. It takes others to show them the way. I know that kind of stinks. You want and need support, but you end up being the leader supporting others for awhile. This too shall pass. Blessings to you.

  4. […] “Parental Support” from the blog, Understanding My Son,  which is about the author’s journey to understand her […]

  5. […] 2.  “Parental Support” from the blog, Understanding My Son,  which is about the author’s journey to understand her autistic son. […]

  6. […] 2.  “Parental Support” from the blog, Understanding My Son,  which is about the author’s journey to understand her autistic son. […]

  7. […] 2.  “ParentalSupport” from the blog,Understanding MySon,  which is about the author’s journey to understand her autistic son. […]

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