Sunday, May 24, 2009

Missing My Muse

Coaxing anything useful out my muse in recent weeks has been less than satisfying. It wasn't until P and I were chatting about it yesterday that I realized why.

"Give yourself a break," he said. "Of course you're having trouble. Have you thought about what you've got on your plate lately? It's high stakes stuff. I mean don't even think about all the IEP stuff we've had to deal with. The trip out East alone is more than the average family has to deal with."

Oh, yeah, I thought. When you put it that way, we have had a boat load of stress on our plates, and it's not over. Here's a taste of what we've been dealing with (and what's upcoming):

1. IEP meeting last week, along with all the prep that went into preparing for it.
2. Follow-up IEP meeting this coming Tuesday (to finish up last week's business which was a follow-up to an April meeting.)
3. Trip with E to the East Coast Wed.-Fri. for visits with specialists in E's type of dwarfism and the issues surrounding it.
4. IEP meeting two weeks later for S.

Hmmm. No wonder my muse is less than enthused when I ask her to come out and play.

Saturday, May 23, 2009

Packing, Planning and Parades--One Writer's Life

You'd think the process of planning for next school year would be routine by now. After all, our two younger girls have had IEPs for years. How hard can it be?

Well, this year is different. Both girls are in different places educationally. S is entering her 8th grade year. E is finishing up as a sophomore and looking forward to post secondary life. And P & I are in a different place, too. This year, for the first time in what feels like forever, E has been healthy enough (knock on wood) that I've been able to drop out of emergency mode long enough to really study the IEPs.

What I found saddened me. All these years, I'd assumed we'd been effective advocates for our girls. Yet, after studying the small print, I realized we have A LOT more to learn.

I cried after I discovered this. I cried for E and S and the fact that they need IEPs in the first place. I cried for S whose voice went unheard for years because we didn't know we could ask for an assistive technology evaluation and the school didn't offer one. I cried for E and all she's been through with her aneurysm rupture, surgeries, and frequent illnesses, and the fact that she deserves more. I cried for what we didn't know and the fact that we could-have should-have known more. I cried for that and more, and then I found a way to turn my emotions into advocacy.

Both girls deserve results-driven, transparent, accountable educational plans. P and I are working hard to achieve this. Getting there will be a process, but we're talking about our children's further education, independence and employment. The stakes are too high for us not to be committed to this process for the long haul.

On tap for the next few days:

Today--IEP review and goal re-visioning in preparation for Tuesday's meeting, planning for next week's trip out East for doctors' visits, and, then, if time allows, head out to the local Pet Expo.
Tomorrow--Sunday school, church, more trip planning, and more IEP preparation.
Monday--Parade and picnic with long-time friends, and packing.
Tuesday--IEP meeting and packing.
Wednesday--E and I leave for Delaware where E will spend the rest of the week meeting with specialists in primordial dwarfism.

Tuesday, May 12, 2009

Wrightslaw, Jean-Luc Picard, and Donning my Advocacy Armor

No, I haven't given up posting. (Or writing.) I'm on a hiatus of sorts, driven by the need to don my advocacy armor for my two youngest girls whose special needs require individualized educational plans (IEP). Why the need for protective gear? We discovered recently that our daughters' IEPs have so little built-in accountability that they're barely worth the paper they're written on.

After shoulding on myself for letting the inefficiencies go unchecked for so long, I vowed to make it right. First order of business was attending a kick-butt conference by Wrightslaw. While there, I networked and sought advice from parents who've gone before us on how to create effective, measureable, accountable IEPs, and came away with an action plan.

Not only have P and I vowed to make it right for our girls, we will borrow from our favorite Star Trek captain Jean Luc Picard and "make it so."

A small portion of what I learned at Wrightslaw (which is well worth the money for anyone considering it): Federal law is written to protect the rights of children with special needs to have a free and appropriate education. The burden of proof, however, is on the parents to know their children's rights so that they can create a plan that meets their unique needs for further education, independence and employment.

For parents who are already taxed by the day-to-day job of raising kids with special needs, it's a daunting prospect, one I personally believe many schools take advantage of. I'm grateful to report that thanks to Wrightslaw, I feel much more confident about the process.