IEP Day

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IEP

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.

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Jonah, Marines, and prenatal diagnosis

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Jonah Cast Forth By The Whale, by Gustave Doré.

Image via Wikipedia

Jonah had a really bad attitude. God gave him a job he didn’t want to do– the people of Nineveh weren’t worth his trouble–so he took off in the opposite direction, only to find himself stuck in the belly of a fish. When he proved indigestible (how lucky for him he was spit out near shore!), he did as he was told…but he did it with bad grace. The people of Nineveh repented, and God spared them.

Jonah should have been ecstatic. Who gets that kind of chance to change the world? Instead, he pouted because he thought God had made him look stupid. So he went into the desert to die. When his shade tree died, he threw a little hissy fit, and God said, “How can you get so upset over the death of this little plant, and simultaneously be completely insensitive to the deaths of the people of an entire city?”

This is the story our associate pastor told in the homily yesterday. It reminded me of a column from our diocesan newspaper this week, addressing the story about the Marines who urinated on the bodies of dead Taliban members. I won’t share it all because I don’t have permission, but this part really stopped me in my tracks:

“The irony is so great that we don’t get it. A sterile liquid produced by the kidney and streamed onto a cadaver is morally debated, but the hail of bullets that penetrated those bodies, making inanimate what was only minutes before a breathing, sentient being, does not enter the discourse. War gets reduced to an etiquette that shows more respect for the dead than the living.”

Christian and I spent Saturday morning at a training session to learn how to talk to parents receiving a diagnosis of Down syndrome–part of our local effort to start a hospital visitation program. Right now, the presenter told us, most people are being “surprised in the delivery room.” But very soon the paradigm will shift to almost exclusively prenatal diagnoses, because of the new tests. She reiterated that the Down Syndrome Guild is “pro-information,” not “pro-life,” a position I have always thought was untenable–how can you advocate for people without taking a stand that they are inherently worth taking a stand for?

But as the morning progressed, I began to see the wisdom, or at least the necessity, of such a position. If we come out all guns blazing, laying down a blanket “law” via a prolife message, we will never get the opportunity to witness at all; people will never let us near them, because they will know that we are more about our soapbox than we are about helping them. The fact is that abortion is an option, whether we like it or not. If we hope to be credible witnesses, we have to acknowledge that, and say “Look, we know what you’ve heard about Down’s is scary. Here’s the part the doctors can’t tell you”–without trying to “guilt” people into proper behavior at a time when they’re wounded and bewildered. If we can’t do that, then we can’t be trusted to have a family’s best interest at heart, and we have no right to be doing this work at all.

Sometimes we get so focused on the unborn child that we forget the wounded parents before us. And that’s why I bring it up in connection with Jonah and the dead Taliban. We must respect the dignity of every person–even when they are considering an action we find morally reprehensible–even when the dignity of another life is at stake. The risk to the baby’s life does not negate our responsibility to respect the parent as well.

I don’t have my thoughts all in order on this topic yet; I can’t help feeling there are holes in my logic that I haven’t yet identified. So I’ll be interested to see your thoughts.