Friday, January 22, 2010

Writer Mom Rant--Advocacy, Armor, and Other Reasons I Need a Good Blacksmith

As the writer mom of three active girls, two with special needs, I wear many hats. Lately, the hat I've been wearing most is the advocacy one, not out of choice but out of necessity.

To be honest, the little number is less hat and more helm. And I've donned it for so many encounters in recent months that it's in serious need of repair.

I used to think I didn't need to wear my advocacy armor when dealing with our girls' IEPs. I used to trust the system to do what was appropriate and meaningful for my children educationally. Then E got well enough for us to escape our bunker mentality, and I found the uninterrupted time to examine our girls' IEPs for substance, progress, and accountability.

You know that old adage that says agreements aren't always worth the paper they're written on? There's truth in those words. After reviewing our files, I realized I've got years worth of IEPs to prove it.

That's not to say that all of our IEPs have been ineffective. There are a few glimmers here and there. But thinking about them now, I can admit how innocent--and uninformed--I was about the process.

I wish I had known then what I know now. I wish someone in the know had taken the time to pull me aside all those years ago, and forced me to listen to the hard truth about having a kid in the system. Now older and more informed, I've commiserated with enough parents of kids with special needs to know the drill, hear the stories, and, unfortunately, experience many of the system's flaws first hand.

What do I wish someone had told me coming up through the ranks? Raising kids with special needs is hard work. It's stressful, exhausting and time consuming. If you're lucky enough to find free time outside of parenting your son or daughter, the last thing you want to do is bird dog your child's school. But you can't leave things to chance. If you have a child with special needs, you have to learn the law. You have to learn what it is you don't know. Don't assume the school is going to tell you what you don't know. If they do, they're the exception to the rule.

And then there are the really big revelations, the ones that kick your feet right out from under you.

One contact's chilling inside view of the system: "I'm not just the parent of a special ed kid. I was a teacher once. I was told by administrators not to offer services even if they were in the child's best interest. I was told not to follow IEPs. You have to be involved. If you don't ask, if you don't know the law well enough to know what you don't know, it won't happen, even if it's appropriate for your child."

Why the rant? The big IEP for S happened last week. While E and I were in Detroit meeting with specialists about her latest health issues, P sat at the IEP table advocating for S.

The concern? In addition to on-going speech issues, S continues to struggle with the ability to read to learn. It's become so problematic that we spent the last 6 months collecting and tracking data to back up the fact.

We came to the table asking for an intensive program to help close the gap between S and her peers. This isn't the first time we made the request. We were prepared to go to mediation if the team didn't respond. We'd even scheduled mediation through the state for a week later if we needed it. We've never been pushed this far, but with S about to enter high school, the stakes are too high.

The team proposed a solution. There's enough potential in it that a six-week trial made sense. Progress will be monitored and reported the first week of March. The team will evaluate whether or not to continue the program at that point.

Sounds good on paper, doesn't it? Sounds like we're all finally on the same page. Unfortunately, the first week of the trial ends today, and as of the end of the school day yesterday, the computer my daughter needs in order to begin the trial wasn't yet in her hands.

Had I not asked questions about status earlier in the week, I would never have known this little detail. Hence the dents in my helm.

Counting the days until my February writer's retreat. Oh, and before I forget, anyone know a good blacksmith?

edited: 1:01 p.m.

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