Wednesday, June 21, 2006

Parent Groups.....

Attended a support group last night and remain a little frustrated. I went in hopes that I could hear other parents talk about their day-to-day lives. It would be nice to connect with people who live near me, too. Again, Adams county is pretty rural. But instead I heard yet another lengthy lecture about why we should all have our kids on glutein-free, casein-free, soy-free diets. When that was done, we heard about how the school systems are all stacked against our kids. Rather than be intentionally deceptive to our faces, they simply choose to reveal as little as possible. If we don't know we can ask for something, they aren't going to volunteer to provide it. I can't blame them. I have a background in teaching and some understanding of the vast cost involved in supporting special-needs kids. I know that a showdown between us and some unknown administrator is inevitable. But gosh, right now I just don't have it in me to hear about it. Kindergarten is just over one year off, but I've been fretting over it since Bird was diagnosed. How's he going to manage on a bus? Who will help him when he's stuck and unable to tell someone? Will the teachers really understand what autism is and why my child might react strongly? Will they understand that when Bird is behaving nicely, when he's quiet or gazing around the room, they *must* make sure he's not disappeared into his own little world? That's actually the stuff I want to know more about. Not battling for a good IEP, but what the daily classroom experience has been like. Any takers?


At 6/24/2006 1:04 PM, Anonymous Uncle Jim said...

I've been trying to gather my thoughts on two of your posts, this one and the previous one about dads. I hope I've been able to discern an undertow of feelings in the two.
As you know, my wife an I had a premature child a long time ago.We found very little in the way of support for us, and in particular, support for fathers. Fathers are often to ones ignored by the public in general. I can't tell you how many times I was bombarded with questions about the baby and mom , but very few people asked how I was doing. How I was doing was crying all the way home from the hospital every day as my child and his mother fought for their lives.
So, we did what we could - we started a support group, in association with the hospital, for the parents of ill newborns. We contacted professionals who could assist us and reached out to others in the same situation. I am saying this to encourage you to become the force that seeks change. If you are not getting the answers from your group then step up and say so. Suggest topics, contact the parents yourself and reach out to others. It may seem to be too much to ask, but you may find that the effort results in the kind of support you need and, thus, may well reduce your stress level and apprehension about the future.
I would expect that you are not the only parent in your group that feels the same way. I would suggest that you get phone numbers and ask if you could call them when you need to talk, and make the same offer to them.
When my dad was dying of cancer several years ago, I was sitting on a bench in front of the doctors office one day. He paused and looked down, then he said to me "I just don't know when it's appropriate to ask for help."
It is appropriate to ask for help when you need it.
Luv to all.


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