a/k/a
One Long Meeting
13 July 2001
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. I’d 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 (let’s 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 they’d already decided what they were going to recommend, because that’s how it works. They say they walk in with an open mind, not having made any decisions, but that’s baloney. The team discusses each case in advance to make sure they can present a united front. But of course they didn’t give a hint which way they’d 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 they’ve made up their minds but not knowing what they’re 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? It’s an interesting question, more complex than you’d think. What is denial when it comes to a child’s neurological deficits, when we’re ill informed at best, as (unfortunately) are our pediatricians? But that’s 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 couldn’t help ourselves, Dan and I. We broke in and corrected mistaken impressions, commented on some of the observations. It’s our child, we want an accurate report, even in the details. For better and for worse: he doesn’t 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 didn’t know. Mr. Psych said, and Lady ST concurred, that it’s actually a problem with parents, because they encourage it. They think it’s communication when it’s not ("Look, he’s 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 they’re searching for a way to say something and they land on someone else’s words, it’s okay as long as it does communicate what they want. Dan said yes, there’s a difference. When Damian says "I’m quite hungry myself" (from Hi, Pizza Man!) because he really is hungry, that’s fine. When you say "All done, Damian?" and he responds, "Day is done" and launches into a complete rendition of Taps, that’s not so fine. Dan commented that he always says, "That’s a very pretty song, Damian, but are you done?" The Administrator suggested we ask Damian if he’s finished rather than done and avoid the whole issue. I didn’t 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.
Cool.
Ms. OT asked if there’s occupational therapy available at Damian’s 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! It’s not over till the paperwork’s 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 wouldn’t give us enough for Damian. They, I think, were afraid we’d 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 hadn’t been able to see any. I told her the deal. Pretty straightforward. Mr. Psych said "Now, I wasn’t 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 couldn’t read him at all. I said, very carefully, "We are in theory open to putting Damian in a public school classroom, but since we didn’t get to see any, we have no way of judging how appropriate that would be for him. And we’re very happy with where he is. He’s doing so well. We’d love to keep him there."
There. It’s said. Their move. Don’t hold your breath, that doesn’t look dignified. Just breathe shallowly and wait to see what happens next.
"We can’t recommend a non-public school placement unless we can back it up with strong reasons the public classes won’t 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 haven’t 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. Damian’s not a disruptive child. He’d get lost in the crowd with a greater ratio." (The public special needs classes have a 5:1 ratio.) "He’d be intimidated and overwhelmed. He’d 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 wouldn’t 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, "You’ve 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 wasn’t 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 doesn’t 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, that’s 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 didn’t know it, but this was exactly the right thing to say. The Administrator said the reason they don’t like to recommend non-public school placement isn’t 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 they’re surrounded by typical kids and can intermingle on the jungle gym or in the cafeteria. In theory. I think we all know that’s 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. That’s as restrictive as it gets. Well, yes. And I agree. In theory. Damian needs playdates with normally developing kids, needs Dance and Jingle. And he’ll probably gradually transition to a typical classroom over the next few years. But he’s not ready yet. He’d 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. That’s all they needed to know.
They wrote up the recommendation: keep him where he is for the next year. He’s doing incredibly well there. A transition right now, after he’s 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. Who’d’a 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. We’re 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 Damian’s wonderful (private) occupational therapist Heidi, but that’s 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? Aren’t you getting ten hours through the Regional Center?"
And this is where it gets tricky. We had to explain that the Regional Center’s vendor isn’t as good as the school district’s vendor (which happens to be the selfsame school he’s currently attending -- there’s a reason we love that place -- they’re 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 we’re getting Floor Time from right now is as good or better than any other place in town EXCEPT Damian’s school. I said Floor Time is the lynchpin of his therapy. That it’s the reason he’s doing so well. It’s the philosophical underpinning to every treatment he’s getting. It’s 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 "We’ve been doing Floor Time with Damian since February. It’s wonderful but it’s hard. We’re burned out. We want the best for him and we’re willing to do everything we can, but we don’t 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. He’s already got ten hours of Floor Time. But oh my god, wouldn’t 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, "I’ll bet, when you became parents, you never expected to be sitting here."
Huh? Does that mean you did or didn’t 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 aren’t talking about me, by any chance?" Laughs all around, but the point was taken. Dan said, "That’s why we want more Floor Time! So we can relax a bit."
Mr. Psych said, "How would you express the goals for Floor Time?"
Wait. Backtrack.
"So you agree? We should get the ten hours?"
"Oh, didn’t we say?"
Yes. They agreed.
We got everything we wanted. We didn’t 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. I’ll probably never see them again and I find I like them enormously. It wasn’t 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.
I’ve 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 doesn’t usually go this well. This morning when I told May, Damian’s teacher, what we got, her jaw dropped. It’s what we should get, it’s what all parents of autistic children should get, but for some reason it’s 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 Damian’s 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 psychologist’s assessment, written in March, and his own, written a few weeks ago, he couldn’t believe it was the same child. Damian’s progress is amazing but the timing was lucky too. It’s 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, don’t mess this child’s life up." They heeded the message.
I’ve said it before and I suspect I’ll 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.
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copyright 2001 Tamar