Teleos

April 8, 2012 | 5 comments
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The door is the first thing I notice: an automatic sliding door with three wide panels of glass.  When I step on the sensor mat, the third panel slides back behind the second and the second slides back behind the first, leaving a doorway at least ten feet across. It takes me a minute to remember where else I’ve seen a door like this: the children’s hospital. The ER, to be exact. Not the main entrance, but the one in the ambulance zone, where EMTs rolled gurneys bearing little bodies into the fluorescent light of the trauma center.

But this building isn’t a hospital. It’s a school.

Specifically, this is the Kauri Sue Hamilton School, the Jordan School District’s facility for children with multiple and severe disabilities. It’s a beautiful building, only a couple years old, as large as a high school. It serves the needs of students from Kindergarten through age 21, when federally mandated services end.

I’m here with Reed and our son Thomas, who will begin Kindergarten in the fall. With his dual diagnosis of Down syndrome and autism, plus an auditory processing disorder to keep things interesting, he’s not a good candidate for the mainstreaming approach to special education that’s becoming increasingly popular, or even the more traditional programs held in the resource rooms of neighborhood schools.

His preschool teacher told me this after the assessment tests last month, using apologetic tones that I understood and appreciated but didn’t need. After Thomas’s autism testing a couple of years back, Reed and I came to terms with the fact that he wasn’t going to be one of those kids with Down syndrome who goes to school with the kids down the street, a classroom aide in tow, or plays neighborhood T-ball with a few “special” rules. I was glad, I told her, that Thomas qualified for this school. Here he would receive the very best care available, from a team of dedicated specialists with a dizzying array of adaptive techniques and technologies at their fingertips.

And so, I’m optimistic as Reed and I pass through the extra-wide doorway and into the two-story atrium streaming with light. A banner hangs on one wall, a huge banner with foot-high letters: Every Child, Every Day, Whatever It Takes. I blink and look away, determined to keep a tight grip on my heartstrings. Again I remember the children’s hospital, this time the lobby, with its raised lettering above the information desk: The Child, First and Always. Those words always made me teary, too.  In the white space between the letters and in the white spaces of the hospital halls I sensed something exceedingly beautiful, or exceedingly awful–I wasn’t sure which. And of course, being at the children’s hospital to begin with meant there was something traumatic afoot in my life, so the tears seemed fitting enough.

Yet today is a different story, I tell myself. This isn’t about trauma—it’s about the hope called for by this aesthetically pleasing state-of-the-art facility full of caring professionals eager to help Thomas maximize his potential. Only the smallest fraction of the smallest percentage of disabled children in all of human history have had such privilege. Maybe that’s gratitude welling up in my throat. And if not, maybe it should be.

When we turn the corner I drop that pretense. Before us is a long hallway lined with machines—dozens upon dozens of them, arranged single file against one wall. They are made of wood and metal and plastic. They have ramps and levers and wheels and straps. They have parts that open and close, fold and expand. Some look like wheelchairs from an alien dimension; others remind me of drawings in the book of medieval torture instruments that I read, fascinated and repulsed, when I was ten.  They are, of course, pieces of equipment used to facilitate schooling for severely and multiply disabled children. Their hearts are good but their faces are sinister.

At first I figure their presence in the hallway means some kind of spring cleaning for the equipment room, that someone had dragged each of these machines out of storage like pioneer mattresses needing air and sun. But when I return the following week nothing has changed, and I realize the hallway is a waiting room of sorts for the machines not in immediate use. A wide array of adaptive apparatus, readily accessible on any given school day to meet the needs at hand. Special needs. The machines all look somewhat the same, but no two are exactly alike.

It is difficult to look at the machines. Each one represents the broken body of a child, of ten children or fifty or a hundred, of hundreds of thousands that have walked this earth—or have not. Each represents a family called upon to care for the child, a responsibility few welcome, even one that parents take great pains to avoid. In times past, many “special” babies were abandoned in the woods or outside the city walls, abandoned to the mercies of mother nature, who is more ruthless than we care to acknowledge. More recently, the babies were abandoned to institutions and asylums, to prisons of the unwanted, where they languished and died young. Today, abortion can end the ordeal soon after it begins. I say this not with righteous indignation, but with simple acknowledgment of the burden that parenting a disabled child can bring—a burden that leads many mothers to forfeit their fetuses out of pity, or to wish they had. This is a reality of motherhood, which can be more ruthless than we care to acknowledge.

I do not return until nearly the end of the semester, when an appointment requires me to fetch Thomas early from school. I pass through the three-paneled door and find myself in the midst of an unexpected crowd. The holidays are approaching, and students from local high schools have come with their violins and xylophones and trombones to play music in the glassed-in atrium. Teachers and parents and aides have assembled dozens upon dozens of children attached to machines. Their metal frames hold lagging bodies upright, sitting or standing. Their moving panels lift and lower flesh and bone that cannot lift nor lower itself. Each is both a miraculous instrument of hope and a testament to tragedy, like the school itself, like the families these children go home to, like the lives they live—or don’t. First and last; always and never.

It’s the first time I’ve seen so many of these students gathered in one place, with their wheels and levers and restraining straps. They all look somewhat the same, but no two are exactly alike. As the holiday music swells I’m seized by the same emotions I tried to control during my first visit to the school. Emotion isn’t really the right word. Nor is idea or thought or feeling. What I experience transcends vocabulary. It rushes into the hollows of the human body and vibrates every cell.  It is emptiness, but also fullness. It is something like anguish, or something like joy—I’m not sure which. I’m not sure, anymore, that there’s any difference.

5 Responses to Teleos

  1. Wm on April 8, 2012 at 9:35 pm

    This last paragraph (the whole essay, but especially this last paragraph) is something to ponder and treasure. Thank you.

  2. Stephen M (Ethesis) on April 8, 2012 at 9:39 pm

    Wow. I am beyond words.

  3. Jacob on April 9, 2012 at 8:39 am

    Difficult to distinguish between anguish and joy. That liminal space in which the experience of being alive is most tangible. Brilliant.

  4. charlene on April 9, 2012 at 11:52 am

    It’s been nearly 30 years since I was negotiating the resources of the school and social systems the way you are now. Your words bring back all the anguish and gratitude of those days. God bless you and especially all those who choose to work with and help our special children.

  5. Heather B on April 16, 2012 at 7:25 am

    thanks K. Beautifully bled onto paper. Love.