Tuesday, February 15, 2011

Change what you see

The eye is a lens.  It frames what it sees, setting some images in the center and some at the periphery.  Or some outside the frame's edges altogether.

Back in October, I took the kids to Target after daycare where we loaded up on Halloween candy.  Roger had been working late most nights because of the impending election.  On our way south on Rockville Pike, we stopped at McDonald's.  Darkness had fallen, and I was happy to find a handicapped spot free--despite the fact that the ramp on our van descends from the rear of the vehicle, I like to situate Robert in his wheelchair in the access alley after unloading him while I close up the van, or before loading him.  Simply put: it's safer than leaving his wheelchair behind a parked car within striking distance of a driver coming through the parking lot.

We maneuvered through the crowd of people at the counter to place our orders--only Edith and I eat food by mouth, a grammatical construction I don't use often with respect to the two of us, although it is true. At McDonald's, I always order the tweenie version of a Happy Meal, a Big Kids' Meal, I think, so that Robert may have the toy. It seems the least I can do. A contract of sorts: you will sit in a restaurant only to be disengaged from the activity in which all others are engaged, and I will make sure you have some sort of reward.

From the corner of my eye, as I wheel Robert to one of those perma-tables with attached seats, but one with a gap for a wheelchair, one hand on the wheelchair, one hand balancing the tray, my amygdala begins sending me some sort of signal, a flash alert, some neurons firing a warning. I'm with my kids, so my amygdala is usually on alert. At the corner of my eye, the next table over, someone, a male someone, is chewing with his mouth open. Something about the face and body are, well, "off." I won't look directly, so I'm not sure. A consideration of safety passes through my conscious mind, but the gentleman remains seated, and we all sit down. This series of neural events happens within a few seconds.

Settled, I look up and directly at the man-who-may-not-be-safe. He's not dangerous, he's disabled. He has a bleary, weepy eye with a malformed lid--perhaps my brain read this as the slitted eye of malevolence--and he is wearing a bib for all of the obvious reasons. Not to be outdone by my protective instincts, my maternal instincts then kick in: is it safe for him to be here alone? who is taking care of him? And then his caregiver appears, and within a minute or two, she is speaking to us because like people at a cocktail party discovering they went to the same college, we have things in common. His name is Peter, and they've been riding at a special program, and they always go to McDonald's afterwards.

All I can think about, behind the curtain of our chatter, is where Peter's mother is. Peter is an adult; while it's difficult to say, it would seem he was in his thirties. Logical for him to be with another caregiver. I wondered if she were dead, and I worried she didn't care about him anymore. All of these thoughts were absurd. All of these thoughts anticipating a time I would not be responsible for Robert, as though that were possible. Would other people think I didn't care?

We left all at once, with Edith holding the door for Peter in his walker and Robert in his wheelchair, in the dusty gray light of a roadside McDonald's. The ramp van greatly speeded our exit from the parking lot, and Peter's caregiver expressed her wistful envy, much as I might have a year ago, as she supported Peter's weight and slid him onto the front seat, which is not as easy as it is to write that sentence. The walker folded, but by that time, we were waving our good-byes and pulling out into the night before Halloween. The night before everyone gets to wear a disguise. Robert's would be Darth Vader, which amused him something fierce, as we've come to tell him that his 'scary breathing sounds' (which he affects for various communicative acts of need, defiance, annoyance, and so on) are much like DV.

All of this prelude to my IEP meeting report. The past is prologue, or something like that, although I think that really refers to the distant and not the recent past. The eye is a lens. It frames what it sees. And in Peter, I saw a vision of what my son's future might be--if he were to live, to outlive me. In a world where he might need to ride the bus, need to count change.

IEP meetings across the country share the same visual format: 12 to 15 people sitting, or, really, wedged around a conference table, one of those institutional ones with the plastic wood-grained top, in a school conference room decorated with framed images that, by necessity, imitate art. A hundred thousand parental amygdalas on high alert.

I distinguished myself at the very beginning of the conversation by bearing down on one of Robert's teachers, who was parsing her own observations of Robert's communication. An inability to answer questions, an inability to be consistent, no way to be sure how he was absorbing the material. So she tried to figure out how he would answer a factual question about his own environment (she was the science teacher, after all)--she asked him if the elevator were still broken after he had just come up in it, and he answered, yes. So I pointed out that you had to be careful with his answers because, lately, he'd exhibited a reflex that drew up the 'yes' hand before the 'no' hand rose. And he likes to joke about obvious things--he thinks it's funny to tell you the opposite of what you expect. I was not especially nice about this, my opening volley should things turn ugly.

But we had come to compromise. Roger and I agreed that school is becoming hard on Robert both emotionally and physically. He is shutting down in his classes--in part, I am sure because he cannot express much more than yes or no to questions formulated by others. Only so far you can go when your intellect is so contained.

We agreed to switch him from diploma-bound to certificate. We offered this ourselves. And the talk spiraled round the table as it became clear that, behind the fence of the County's accountability system, the teachers and therapists wanted to offer him something he could do, something he could take pride in, to be able to step back away from the commodifications of No Child Left Behind and its value exchange, its ranking systems.

We spoke of how the new diagnosis gives us a vocabulary to put Robert's behaviors and movement problems in context, to explain what we could not explain before. How the very definition of his disorder is a lack of consistency with movement, with thinking, with all of that. And here is a child whose definition is inconsistency who must be placed within the bureaucratic bounds of consistency.

There is no way for me to describe this; there is only saying it: empathy permeated the room. People were seated at the table who had been through the difficult meetings at Bethesda Elementary, people who knew.

I felt a sense of defeat in the service of good when I stood up at the end of the meeting. Lately, I'm acutely aware of my agency where Robert is concerned. I speak for the child who cannot speak for himself. Being the parent, this is my role, yet my responses "for" him are complicated by the fact of his disability, the fact that the choice I make for him may take into account benefit to me.

My life is a house of cards: part-time work to secure top-flight health insurance, writing, Robert's care, Edith's care, all of the ordinary things in addition. Robert's care involves not only school, but managing the complex and ever-shifting medical care he receives, including his medications, the insurance company, and the plethora of doctors and nurses, and his home care, including being responsive to the case manager who monitors our budget, and our home aide. And there's also the inclusive daycare center. Everyone has questions, needs, all of that directed to me. At the moment, Robert receives no private physical therapy because we simply can't fit it in. Our favorite physical therapist used to remind me that, with Robert's level of involvement, I needed to pick focal points. You can't do everything, she would say.

Education, at this time, cannot be a focal point, sad as I am to say that. We cannot keep up with the homework demands, as complex as they are becoming. Robert's new diagnosis requires my focus on his medical care, his equipment needs, his burning need for physical therapy. And his happiness. Without that, he's lost. And it's to that factor, happiness, that I feel most responsible.

Robert will remain at Westland. He may even go to the cluster's high school, B-CC. As JH said, a significantly impacted child is there right now, so it won't be anything new for them.

After the meeting, I spoke in private to JH, who started working with us three years ago, and told her how much we had been through--how we had believed in him, saw he was at grade level in second grade, how we now knew his disease, his organic condition, was progressing and, like a stick tapped on the surface of a pond, blurring, replicating, and fragmenting images in such a way that the original image could barely be distinguished. Or, rather, I say that last part now as a sort of shorthand for the conversation. She promised me an educational contract, that teachers would be held responsible for him learning somethings--and in the midst of all my explaining of our fear of giving up what we had just given up, her eyes teared up. And so, we were all human that day.

After that, one of Robert's augmentative tech specialists spoke to us. For the last several years, she's been on the other side of the table, as she put it, coping with her own child's IEP. Why are these meetings so negative? she said was her first response as a parent. In the mid-afternoon winter sun, which might as well be the late-afternoon sun, she told us we had been models for her own advocacy. That anything might be possible, if we could get a $10,000 device into the system in a week for our son's use. That everything available must be brought to bear. That we had, essentially, shown her the possible.

While she spoke, I thought about the epigraph to Louise Gluck's book, Vita Nova:

The master said You must write what you see.
But what I see does not move me.
The master answered Change what you see.

But I didn't mention that because I didn't know if it would make sense to her.

I wish I could explain to all of you why I let this go. Let Robert's education go. It wasn't acceptance. It was adaptation, an act of changing what I saw or could see.

As Gluck observes, sometimes we have agency to enact change. Most times, I think, we recognize it after the fact, after its work is done and our choices have been erased. But on occasion, change steps forward that it might be known. Offers a handshake, if not a choice.

Which is why I thought of my brother's coming-out on the drive back from the school. My brother who is also named Peter. We had been at church, Peter had become emotional singing and had left. I followed him out to the parking lot behind the church. A light snow was falling. No one was disturbing it but us. The kind of snow where large flakes spiral down, just catching on others with the faintest grasp that makes an odd and fragile geometry rising upward from the ground.

He told me he was gay. It was, I think 1987 or 1988, just as the tidal wave of AIDS was crashing down, before Tom Hanks' "Philadelphia," before Ellen, before gay marriage, before anyone I knew had much thought about any of this. I'd been living in big cities for two years, had seen my first drag queen, knew several people of varying degrees of acquaintance who were openly gay. At one level, I was non-plussed.

My only thought was that this moment marked how everything would not be the same. How the four of us siblings would not all grow up to have children of our own. How this would be different. How things would be different going forward. Maybe it was a failure of the imagination, maybe I was a product of that particular moment of time. At any rate, I turned to my brother and told him, in a way I can't quite recall, that I accepted who he was.

And that's how this was, leaving the school. A recognition that, now, everything would "suffer" change. Or maybe not. Maybe one more time I can change what I see and it will be alright.

3 comments:

Bora said...

Jeneva, you are eloquent, compassionate, dedicated, fierce, a mother's love embodied. You rock.

A said...

I'm long past the days of IEPs, and glad of it. Not that I wouldn't like to turn back the hands of time, but...
Regarding Robert's understandably wiggly reaction to the binary squish of conforming to endless yes/no, my daughter taught me years ago that three choices were mandatory, the third being totally open-ended. Along with her yes card, and her no card, there was the well-worn, often replaced card with the words: something else.

Elizabeth said...

I don't know what to say. In one sense, my heart aches for you and for Robert. In another, I feel release -- even for myself as you've written something for, selfishly, me.