|Individual Education Plan
One Long Meeting
13 July 2001
|I keep thinking about the IEP meeting, wondering what happened, why it went the way it did, why -- well, let me just tell you what happened and you can judge for yourself.
I slept remarkably soundly Wednesday night. No endless speech rehearsing in my head, no trying to think of other ways to bullet-proof our approach. Just sleep. No dreams.
The morning was a little different. Butterflies fluttering in my stomach, flapping in my chest, caught in my throat. Stage fright.
We met my friend Janice outside the school parking lot. Id asked her to come as a note-taker in case we needed the ammunition for a mediation hearing. After some soul searching and a consult with her lawyer father, she agreed. (He said it would be a mitzvah, a Good Deed.) I was glad to have her there, a friendly face, someone on our side. The butterflies wreaking havoc with my insides wearied of their task and flew off in search of other anxious souls to harass.
In the room. A rickety table, rows of chairs on either side. The school district folk arrayed on one side. We sat on the other. Us vs. Them. The speech therapist (lets call her Lady ST) and school psychologist (Mr. Psych) were there, along with the special ed teacher (Teach) in charge of organizing the IEP. The other chairs were empty, waiting. The other officials -- the Administrator and occupational therapist (Ms. OT) were late, as was our Regional Center case worker (RC Guy). So we sat for half an hour, chatting. I knew theyd already decided what they were going to recommend, because thats how it works. They say they walk in with an open mind, not having made any decisions, but thats baloney. The team discusses each case in advance to make sure they can present a united front. But of course they didnt give a hint which way theyd lean. Not yet.
Do you know how very strange it is to be exchanging small talk with people who have the power to make your life very difficult. Sitting there knowing theyve made up their minds but not knowing what theyre thinking? Poker face, game face, impenetrable.
But they were smart folk, thoughtful folk. I asked them the question that seems to come up once you know something about autism: how do you tell parents in denial that they should get their child checked out? Its an interesting question, more complex than youd think. What is denial when it comes to a childs neurological deficits, when were ill informed at best, as (unfortunately) are our pediatricians? But thats a matter for another entry, a more contemplative one.
Back to the story at hand, the long-awaited meeting. The stragglers came in and we introduced ourselves all around and began. Five of them, four of us. Nine adults sitting in a room talking about one small child, who was probably racing around the house at that very moment, chasing his babysitter and giggling wildly, no idea of the intense discussion going on less than a mile away.
We began with the assessment reports. We read them in advance, of course, we knew what they said, but it was somehow different hearing the words in their own voices. And somehow we couldnt help ourselves, Dan and I. We broke in and corrected mistaken impressions, commented on some of the observations. Its our child, we want an accurate report, even in the details. For better and for worse: he doesnt usually stop his headlong gallop down the sidewalk when you shout "stop!" He may not be able to process the word and what it means he should do, not fast enough to act on it. On the other hand, he is now toilet training. (Lady ST chimed in as a mom, talking about how to teach Damian to use the potty.)
The assessment reading went on for well over an hour. It kept devolving into discussions of what it all meant. The way Damian quotes from books is apparently called "scripting." This I didnt know. Mr. Psych said, and Lady ST concurred, that its actually a problem with parents, because they encourage it. They think its communication when its not ("Look, hes talking!"). Lady ST said she has to work hard to break the kids of the parent-reinforced habit when they get into her office. The Administrator had a different slant: it can be communication, the quoting. When theyre searching for a way to say something and they land on someone elses words, its okay as long as it does communicate what they want. Dan said yes, theres a difference. When Damian says "Im quite hungry myself" (from Hi, Pizza Man!) because he really is hungry, thats fine. When you say "All done, Damian?" and he responds, "Day is done" and launches into a complete rendition of Taps, thats not so fine. Dan commented that he always says, "Thats a very pretty song, Damian, but are you done?" The Administrator suggested we ask Damian if hes finished rather than done and avoid the whole issue. I didnt expect to get parenting advice during an IEP!
The atmosphere was friendly, relaxed. I found myself liking these people. Enjoying myself, even. Wondering when or if it was going to turn around and become unpleasant, difficult, antagonistic, officious.
The next phase: Goals for a year from now. Was this where it was going to all fall apart? But no, they were all intelligently conceived, things like: "will use phrases and/or sentences to answer simple wh questions with models and/or prompts 75% of the time" and "will participate in parallel play with minimal adult support in 4 of 5 opportunities sustained for 8-10 minutes." Reasonable. Appropriate. Focusing on the important stuff and finding a way to measure progress.
Ms. OT asked if theres occupational therapy available at Damians current school. Does that mean what I think it means? Lady ST alluded to his school too, referring to speech therapy. Sure sounded like it. Sure sounded promising.
Nevertheless, when the next phase of the meeting started, the recommendations, my heart sped up. I could hear the blood pounding in my ears. This was the moment of truth. Maybe I was misinterpreting their words, maybe they were just asking as a point of comparison. Maybe it was one big Gotcha! Its not over till the paperworks signed.
The tone in the room changed. It got colder, more still. No longer buddies, we were down to business and I think we were all afraid. We, of course, were afraid they wouldnt give us enough for Damian. They, I think, were afraid wed get angry at what they did offer and turn the heretofore pleasant afternoon into an ugly confrontation.
Teach gave us an overview of the different public school programs available. The Administrator asked why we hadnt been able to see any. I told her the deal. Pretty straightforward. Mr. Psych said "Now, I wasnt clear, do you have a school placement preference? Some parents are open to various possibilities but others feel strongly about keeping their child where he is."
I couldnt read him at all. I said, very carefully, "We are in theory open to putting Damian in a public school classroom, but since we didnt get to see any, we have no way of judging how appropriate that would be for him. And were very happy with where he is. Hes doing so well. Wed love to keep him there."
There. Its said. Their move. Dont hold your breath, that doesnt look dignified. Just breathe shallowly and wait to see what happens next.
"We cant recommend a non-public school placement unless we can back it up with strong reasons the public classes wont give him a free and appropriate classroom environment. Why do you think it would be best for him to stay where he is?"
Breathe in. Breathe out. Say, "Since we havent had a chance to compare, I can only tell you the reasons this school is good for him, and you can tell me whether the other schools can do this for him."
Nods all around. Okay. Go on. "First of all, they have a three-to-one student teacher ratio. Damians not a disruptive child. Hed get lost in the crowd with a greater ratio." (The public special needs classes have a 5:1 ratio.) "Hed be intimidated and overwhelmed. Hed just go off in a corner and perseverate." (IE: lie on the floor and roll a truck back and forth, which is what he did at his old school.) "He wouldnt obviously need attention therefore he would be that much less likely to get it with fewer teachers."
Okay, they were listening. Their expressions opaque, game faces on. But Mr. Psych said, "Youve also mentioned your concerns about transitions." Leading me in the direction I needed to go next.
Bingo. "Yes. He has had a terrible time separating from us, especially me. He took a long time to get used to his babysitter, it took several sessions before I could leave the room at speech therapy, and then of course there was the preschool before this one. He was there three months and in that entire time, he never let me go to the bathroom without him. He wailed if I tried. It wasnt manipulation or a power struggle. He was terrified."
"And at this school?"
"A few weeks." (In reality, it was more like three days, but that doesnt exactly make it sound like he has transition problems, does it?)
"What do you think made the difference? Why was the transition easier?"
What I wanted to say was, "The two main teachers rock, thats why." What I said instead was also true: "The three to one ratio played a big part, I think. But also -- and this may sound strange -- I think it was the fact that a good ninety percent of his classmates are autistic. There are no rambunctious kids racing around the room, bumping into him and making him feel overwhelmed. I think that made a huge difference."
I didnt know it, but this was exactly the right thing to say. The Administrator said the reason they dont like to recommend non-public school placement isnt money but that it's considered the most restrictive environment for a child. The public school special ed classes are on a regular school campus, therefore theyre surrounded by typical kids and can intermingle on the jungle gym or in the cafeteria. In theory. I think we all know thats as likely as a mouse becoming friends with a cat.
This theory says putting a child into a school which is entirely for special needs kids is locking them away from their typical peers. Thats as restrictive as it gets. Well, yes. And I agree. In theory. Damian needs playdates with normally developing kids, needs Dance and Jingle. And hell probably gradually transition to a typical classroom over the next few years. But hes not ready yet. Hed be terrified. As he was at his old school. So what good does a segregated classroom on a typical campus do him? Not a whole hell of a lot. My description of the contrast between his former and current classrooms and how he does in each told the story loud and clear. Thats all they needed to know.
They wrote up the recommendation: keep him where he is for the next year. Hes doing incredibly well there. A transition right now, after hes only been there for less than four months? Not in the best interests of the child.
Imagine that. They were thinking of the best interests of the child. Whoda thunk?
We moved on. Lady ST recommended two hours of speech therapy on the school grounds. The school has two speech therapists on staff. They do one-on-one, no group, so that was a moot point. Were getting one-on-one. Ms. OT recommended two hours of occupational therapy: one in a clinic setting and the other broken into two half hours at school. The occupational therapist will pull him out of the classroom, have him string beads, draw circles, bounce on therapy balls and jump on trampolines, then bring him back all happy and revved up. We have to figure out how this works out with Damians wonderful (private) occupational therapist Heidi, but thats for another day.
And that was that, except...
"We have another request. We want ten hours of Floor Time therapy."
They looked at each other. We just threw them a curve ball.
"Why? Arent you getting ten hours through the Regional Center?"
And this is where it gets tricky. We had to explain that the Regional Centers vendor isnt as good as the school districts vendor (which happens to be the selfsame school hes currently attending -- theres a reason we love that place -- theyre The Floor Time place in town). We had to explain this with RC Guy sitting right there on our side of the table. I said, in part, that the place were getting Floor Time from right now is as good or better than any other place in town EXCEPT Damians school. I said Floor Time is the lynchpin of his therapy. That its the reason hes doing so well. Its the philosophical underpinning to every treatment hes getting. Its very important to us. So what I was saying was: if we only have ten hours, we want THESE ten hours from THIS place.
Dan took another approach. He said "Weve been doing Floor Time with Damian since February. Its wonderful but its hard. Were burned out. We want the best for him and were willing to do everything we can, but we dont know that we ARE the best for him anymore. We need more help. We need twenty hours of Floor Time per week." Ten from the school district, ten from the Regional Center. Tears welled in his eyes as he spoke. Every pore of his being showed his exhaustion and the depth of his caring for our little guy. He looked like he was about to burst into sobs.
They filed out of the room to convene out in the school yard and discuss this unanticipated move on our parts. We looked at each other and shrugged. We had nothing to lose, not really. Hes already got ten hours of Floor Time. But oh my god, wouldnt it be wonderful...?
They came back in, single file, looking for all the world like a jury filing in to reveal their verdict.
The Administrator sat down and said, "Ill bet, when you became parents, you never expected to be sitting here."
Huh? Does that mean you did or didnt agree to our request?
But we went with it, agreeing with her about how strange it was, the twists and turns of fate.
Lady ST started talking about how some parents get overly invested in how their kids are doing, pushing all the time and wearing themselves out and forgetting to have fun with their kids in a simple parent-child way. Dan said "You arent talking about me, by any chance?" Laughs all around, but the point was taken. Dan said, "Thats why we want more Floor Time! So we can relax a bit."
Mr. Psych said, "How would you express the goals for Floor Time?"
"So you agree? We should get the ten hours?"
"Oh, didnt we say?"
Yes. They agreed.
We got everything we wanted. We didnt have to fight for anything. The meeting never got even slightly confrontational. I walked away with new bits of knowledge and the feeling that they knew and even liked our son and they truly wanted the best for him.
Leaving that meeting, I felt like hugging every one of them. Ill probably never see them again and I find I like them enormously. It wasnt just not a bad meeting, it was a very very good one.
I walked around in a daze all afternoon (what was left of it, after that marathon meeting) thinking, "It went well. It went really fucking well." Feeling light and even a little dizzy. My brain almost empty now that the space which had been cluttered with "if they do this, say that" and "this is how to tackle that issue" has been wiped clean.
Ive heard countless horror stories and I know they must be true; the school district keeps getting sued by pissed off parents. Advocates have waiting lists. It doesnt usually go this well. This morning when I told May, Damians teacher, what we got, her jaw dropped. Its what we should get, its what all parents of autistic children should get, but for some reason its not a given. What made this case different, I keep wondering. What did we do right?
Part of it, I suspect, was what we said at the assessment, playing up his current placements. Part of it may have been simple human nature: Damian charmed the assessors. Part of it was luck of the draw: we got an intelligent team. Part of it, assuredly, was the tangible progress Damians made since we started down this road. Nearly every question they asked us at the assessment went like this: "Does he do this (good) thing?" And our answer was usually "Yes, but he just started." And "does he do this (bad) thing?" "He used to, but not really anymore." Tangible progress. And Mr. Psych said that when he compared the Regional Center psychologists assessment, written in March, and his own, written a few weeks ago, he couldnt believe it was the same child. Damians progress is amazing but the timing was lucky too. Its ironically a blessing that we entered the system as late as we did. It lets us show his "before" and "after" in a four month span. Which cries out: "stay on course, dont mess this childs life up." They heeded the message.
Ive said it before and I suspect Ill have reason to say it again: Damian is a blessed child. He may have neurological issues and that's sometimes hard as hell, but the path to solving those issues seems to be shockingly free of brambles. As Dan said to me yesterday, Damian is his own lucky horseshoe.
copyright 2001 Tamar