Tuesday, October 5, 2010

The Inclusion Dance

Susan Etlinger

It's official: I'm a bitch. By which I mean I've moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now -- inevitably -- relentlessness.

And it is relentless -- for reasons bureaucratic, cultural, personal, possibly gender-determined and sometimes inexplicable.

The day starts with a clamor of children in the big yard. It's an expansive space -- too much for the Kindergartners, much less any child with sensory issues -- and children whiz around, hollering, bumping into each other, a chaotic, moving mass of kidness.

Isaac refuses to set foot in the yard. This full frontal assault first thing in the morning is unbearable. He makes a beeline for the library, and insists we sit and read a book. He falls apart when I tell him it's time to go to the classroom. "Nooooo," he wails, sinking boneless to the floor. "Come on, Isaac," says one of the administrators as she briskly picks her way around him. "You'll be late."

We are on another planet, I think. One where there is no word for "late."

In my most philosophical moments, I realize that it's not their fault. This is a foreign language, and they are struggling to learn even the most basic syntax. If he melts down right after lunch (a hasty affair in the multipurpose room, where the echoes are too much even for me), they ascribe it to stubbornness or poor impulse control. They don't ask about what happened right before. That's not the point for them; his behavior is the point.

And so, like a detective, I try to sift through the scraps of information I glean from time to time to find the answer: What was he doing when he got upset? What was the class doing? Where was he? They think I'm making excuses, but I'm looking for a pattern. Was it noise? Did something upset him?

It's exhausting, for them and for me, but mostly for him. "He's so smart," they'll say. "He knows he'll get a reaction. What do you do to discipline him at home?" "Well," I respond, gathering what is left of my wits, "It depends on the situation. If he's dysregulated, I help him collect himself and vocalize how he feels. If he's just being five, we set limits, give choices, the usual. It's annoying, but developmentally it's actually really great." And I chuckle weakly. But no one is interested in an impromptu lesson on theory of mind.

What they don't realize is that Isaac is starting to become aware of his differences. His father and I know this because we see how hard he works to keep it together throughout the day. By the afternoon he's clinging to regulation like a shipwreck survivor to a fragment of driftwood. They're not seeing that his nerves are fraying. And when he lets go and hurls a book at the wall in frustration, it's back to the question of discipline.

What they should do instead: tell him how proud they are that he kept it together this long, soothe him, help him understand what he needs and a better way to ask for it. I worry, more than ever, that his self-esteem is at stake, that he's learning the worst lesson of all: to internalize his feelings.

And yet there are amazing moments, too: hearing that the other children in the class ask him to help with their spelling, or that he loves his social speech group; seeing him stand up with his class at the Thanksgiving pageant.

Inevitably, my crusade to explicate my son is impossible without a fundamental understanding of how his wiring works, and that is in short supply. It's not just that the autism experts in our district are too understaffed and overstressed, it's that they are starting from square one; they have to make up for years of inertia. It's true, he's a complicated kid, and I don't expect anyone to care as much as his father and I do, but ... he, and the other kids like him, deserve better.

This was my saddest lesson of the year: being nice doesn't help. I hoped it would. I was empathetic, I sent links to articles, I offered to bring in experts. But, as one of our therapists said to us, they just don't know what to do with the bumpy kids. So I became that mom: the one whose calls the administrators dread.

When Isaac was just about to graduate from his amazing inclusion preschool, a panel of parents of some older children came to share their experiences. There was one woman who told a story of how she had put her son, a "high-functioning" boy, into inclusion because she couldn't bear the thought of sending him to a school for kids with special needs. But after a year of struggle, she decided that this decision was more about her self-image than it was about what he needed. It was a disservice to him, she felt, and they changed schools.

That story depressed the hell out of me at the time, but it also felt oddly liberating. What if we were in a place where the natural response to a meltdown was joint compression and heavy work rather than yet another pullout? Or where multiple modes of communicating -- verbally, visually -- were routine? What if we were with our people?

But there is no workable option here, and at the end of the day, he's back in the rest of the world, which is not filled with wiggle chairs and chewies and people who appreciate his quirks. And we have to teach him to live in the world we live in, not the world we wish we lived in. It breaks my heart.

So we include, even though the inclusion experience feels like a kind of noblesse oblige. We wake up, we get dressed, we go to school and we crash the neurotypical party every single day. And it hurts, but we do it anyway, in the hope that, if only by our sheer relentlessness, our sheer bovine refusal to disappear, we'll clear a space for him, and, more importantly, help him clear a space for himself.

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The above essay was written during my son’s Kindergarten year. Would it surprise you to learn that first grade, and, so far, second, have been an entirely different experience for us? Isaac has a more appropriate support system, and, as importantly, has matured to a point where some of the earlier sensory challenges have smoothed out somewhat. He still requires continual support, but is thriving and happy -- and very much part of his class.

It’s not perfect -- we still fight the good fight -- but we’ve entered a new phase. We’re no longer in an active war; it’s more of, well, let's call it ongoing diplomatic engagement. We don’t expect this phase to be permanent -- nothing ever is -- but we’re appreciating it while it lasts. 

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The Inclusion Dance originally appeared in Parent and Sibling Roundtable: Neurodiversity and Caregiving, Disability Studies Quarterly (Vol. 30, No.1).