Tuesday, March 23, 2010

Get Freaking Involved

"What a difference a year makes, huh?"  The CPSE chair smiled at me at the end of a parent workshop about transitioning from CPSE to kindergarten.  I was signing up to be a volunteer parent member at other families' future CPSE committee meetings.  "I remember vividly your first meeting with us.  You were crying..."  Her voice was light and chiding.  "But now look at you.  You're confident.  You're like, 'This is what we have to do.'"

She's right - I was a wreck.  I was doing fine until I asked the three professionals in the room, "Do you think Ryan might have autism?"  They all looked at each other.  And the district psychologist exhaled and said, "We do see some signs..."  That's when I lost it.  I knew nothing about autism, nothing about my child's future.  All I knew was this scary word.  Over the last year-and-change I've learned more about raising a special needs kid than I ever thought I would need to know.  

What struck me as odd about the chair's comment was that she remembered our first meeting.  This woman has a heavy case load, and she's certainly not brand new on the job.  Was that meeting really so unusual?  Don't all parents melt down when given a name for the not-quite-right feeling they had about their child's development?

Then the chair looked around the room.  "I have 75 cases a year.  How many parents do you see here?  Eight?  Maybe we'll have eight again when we do this workshop again next month.  Most parents just aren't involved."

I was stunned.  I understand that a lot of single parents might he pressed to secure a babysitter so they could go to a meeting after work, and many working parents might have a hard time taking off from work to go to a morning workshop.  But there were parents who brought their kids to the meeting I went to - it can be done.  In my world, if you have a special-needs kid, your primary responsibility is to be as informed and engaged as possible so you can be an effective parent and advocate.

Then I realized that the most likely reason the chair had remembered our first meeting was that I'm one of the few parents who has been actively involved this year.  Going to the meetings.  Calling.  Emailing.  Making requests for services.  Making work for this poor woman.

And because I've been involved, I've almost always gotten what I've requested for Ryan.

The parent workshop was ostensibly about the differences between preschool-level and kindergarten-level services, but the underlying theme was that the parent is an equal member of the Committee, and that it is imperative for the parent to participate in the Committee's decision-making process.  Parents should not have to be told that they have a role to play in decisions made about their child's well-being.  Parents should not have to be encouraged to become involved in their child's life.

I had been annoyed that at our CPSE meetings, the volunteer parent member has never opened his mouth, but now I understand why: he's there for the benefit of parents who don't understand the power they wield.  He knows that I can speak for my child, so he has backed off and let me do the talking.  Now I'm just looking forward to being trained to become a parent member so I can help other parents advocate for their own kids.

That's a job no parent should have to be told to do.


4 comments:

  1. Ryan's so blessed to have you as a mommy!

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  2. I feel the same way. I get everything I request for Daphne because I call, write, research. I know exactly what she is entitled to. And it's still hard. I wonder what would happen if I weren't involved. Ryan is indeed lucky. I'd guess that you grew together in the past year.

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  3. how great that you are so involved and informed. Ryan is a lucky boy and so are the parents you will help.

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Keep it civil, people.