This is what #IEP prep looks like: notes from parent advocate, part A and B. The first draft of the IEP, from which the comments came, split in two: the half we got through last week, and the part we have to do today—the goals, i.e the basic shape of her middle school experience. Finally, draft 2, which we will finish marking up today.
This is our 10th IEP meeting. Our first happened in preparation for her entry into ECSE (Early Childhood Special Ed) shortly before she turned 3. This is the first time we’ve hired a parent advocate, having realized over the past year that we have, in fact, been delusional the past 9 year in thinking we had a good enough handle on the process that we could do it on our own. And I have to say, I’m so much more relaxed this time than I have been in the past because there is an expert in the room who’s there just for us.
Even so, this is inherently a stressful process. What you can’t see from the picture is that each of those drafts is 20+ pages long. It’s a mind-boggling amount of information, written in lingo like this:
“Julianna will use clear speech (over-articulation) strategies at the sentence-level in 80% of opportunities. Baseline: 60% in structured speech activities at the word-level, with visual cue only (e.g., written minimal pairs).”
Did you all follow that?
My guess is that most people who have never been through an IEP were like me, completely unaware of the complexity of the process. Even now, I can sense eye rolls. Why the lingo? Why does it have to be so complicated?
Well, to effectively administer something like special ed, you have to have specific, measurable targets. And as targets zero in, you end up with specific language to make clear the distinctions. Ergo, lingo. Let’s face it. Who but a speech therapist would ever think of the fact that you can struggle to say “f” and “v” in three different places in a word–beginning, middle, end? Until it happens to you or your kid. (Oh, but that’s a different goal. I spared you that one!)
The process is what it has to be–but it is hard for parents. Hard to keep it all straight. Hard to understand. Hard to gauge the right level for pushing the envelope yet not overreaching.
What the IEP process doesn’t do, we realized, is create the specific shape of her days. Last spring, we spent 3 hours in an IEP meeting creating what we felt was a good plan, with 61% of her time spent in reg-ed. But in the fall, we found out those reg-ed minutes were so splintered, they were all but irrelevant. We had to have another hour and a half meeting to rearrange the schedule so that she could actually spend meaningful blocks of time with her peers.
It worked. She now has a group of typically-developing girls that she pals around with during the day. But the IEP didn’t guarantee that.
As always, posts like these run the risk of making special needs look like all stress and drudgery–and scaring off parents confronted with a diagnosis. But I really want the general population to get an idea of what supports are needed, because disability is kind off the radar for the vast majority of people, and even for those who do have it on their radar, it’s easy to underestimate the experience and think, “Why are you people making such a big deal of these public policy questions?”
We’re making a big deal of it because from inside the situation, the stakes are so high.
Kathleen M. Basi 
Wow, I forgot about those IEP meetings for our FAS adopted daughter. But she’s in her mid 20s now, living with a roommate and working inependently. I don’t think she ever tested for IQ, which I figure is just as well.
We’ve been told you should never have your kid’s IQ tested until they’re 17, at which point you have to have it in order to qualify for adult services. Doesn’t matter b/c we were already past that option when we heard it.