Thursday, February 16, 2012

The long, familiar, steeply curved road (down the mountain)

In the summer of 2001, I attended the Bread Loaf Writers' Conference, the first time I'd taken time away from Robert, in fact, the first time I'd been away at all. At the conference, I spent more time talking about Robert and his puzzling illness than I did talking about poetry. While everything I said about Robert and about our situation was true, by the time I left, taking the long, familiar, steeply curved road down the mountain and back toward the town of Middlebury, where I attended college, I had the uneasy sense that I'd somehow made Robert up.

On the one hand, the facts of my life sat as they sat, and I had conveyed them, yet picking up these pieces and arranging them into a variety of narratives, which answered a variety of concerns and questions posed by others, was a new experience. Unlike doctors and assorted therapists, played mostly by versions of Jack Friday asking for 'just the facts, ma'am,' non-medical civilians wanted to hear what I thought, what I felt, and how I saw Robert, an activity on my part that engages in a subject-object relationship that may not be strictly reliable as an arbiter of fact.

Robert can't speak, still can't speak, and his limited physical abilities have made assistive technology or augmentative communication extremely difficult. What I've written about this has been published as an essay at The Collagist, read it if you like--repeating that backstory is not my aim today.

What I mean to say is that--and the construction "what I mean to say" itself being a noun clause, a verb structure masquerading as another part of speech, a noun, an abstract expression substituting for something unknown or indescribable--what I mean to say is that I have an extremely limited sense for his subjectivity. I knew then that he didn't like doctors (duh), had a crush on Tigger, loved me, liked certain toys more than others, and so on. I understood how he made some differential choices in the world. But I didn't know what he thought, although context and facial expression and where he glanced about the room might enable me to construct his thinking.

The child I constructed at Bread Loaf was as I knew him: bright, engaged, severely disabled, attentive to nuance, alert to the world. I wrote my version of Robert and I believe it to be true to this day. But I knew already that other people looked at Robert and saw little of that: severely disabled, disengaged, distracted, unintelligent. Which stories am I responsible for telling? My own, Robert's, or an amalgam of the perspectives of other people? If other people, whether they're medical professionals or family members, express doubt about Robert's abilities, in what ways am I expected to incorporate those into my own story? Does it depend on the audience?

Complicating matters, the poet Ellen Bryant Voigt delivered a lecture about poetry in which was embedded what I'd come to know (through Robert's speech, occupation, and physical therapies) as a typical narrative of human development: I wrote in the Collagist essay about "her assertion that the ability to speak, to process the world into language, is the primary turning point for a child, what makes a child fully human at last." Ellen, of course, would later admit me to the Warren Wilson MFA Program for Writers and I would come to love her dearly in that capacity, but I never asked her about her lecture.

I'd pushed back against that narrative for  three years, though, backed in part by one of our neurologists, who read Robert's case differently and supported me in my refusal to participate in full-scale developmental testing, a resistance that upset some of my close relatives. We had to know what to do with Robert, was what they argued. The neurologist would not take an absolute position on Robert's intelligence, except to point out that he had bright eyes (yes, that really is something neurologists look for), but made the rational argument that without an appropriate communication method or device, the test results would be skewed, most likely irrelevant and almost certainly harmful.

Regardless, one must drive the long (now familiar) steeply curved road down the mountain, using the brakes to avoid this or that certain catastrophe, knowing full well the road will end in a different location each time one drives it. When I reached my parents' lake house (in Vermont we say "camp," but I'll use a more familiar term), where my family stayed while I was at Bread Loaf, I'd been away for 11 days. Edith was 17 months old, and when she came flying around the outside of the house, chasing her cousins, I remember her pausing in mid-stride to look at me the way an adult at a cocktail party looks at someone he knows he should remember, but doesn't.

Robert and Roger were inside, where the light was dimmer. As I pushed open the screen door, I could hear Robert's soft vocalizations, which were not words, but by or through which he intended to share something with us. Robert recognized me. The look of recognition is universal, is it not? When I saw his face, which on that particular day was less responsive than on others, I felt the slippage between the Robert I'd narrated at the conference and the possibilities of the Robert before me at this instant in time. I'd become dishabituated to his presence. But how is the narrative with Robert expressed--the reflection of his face, his gestures toward communication, a reading of his body against popular stereotypes of children with physical disabilities, where? Where might it be located?

Roger helped him stand and step toward me, Roger's two hands under Robert's shoulders, and I knelt on the floor and held him close to me, my right hand pressing his face against my shoulder. And Robert said, "Mmmmm," which is a difficult sound to make, one he'd never made. He said it twice. And has never made that sound again.

To answer your question or assumption, yes, I do believe he was trying to say "mom." But I know that many of you will not believe me. Or you may suspend your disbelief because you know I care about my son and you're willing to grant my wish and my belief a credibility stronger than it might otherwise deserve.

No matter. The medical world has borne us out in our beliefs--as Dr. Hamosh described to us in January, research on basal ganglia damage shows that many persons with "liquified" basal ganglias have perfectly strong intelligences. This breaks the link society often makes in assuming that persons with severe physical disabilities, persons who are non-verbal, do not possess significant intelligence. It supersedes the developmental narrative I've been resistant to all along.

The point of bringing this up today is the experience of this previous Tuesday, which is another drive down a steeply curved mountain, a road I've been on before.

We've been exploring the possibilities of eye gaze communication systems again: the use of a camera and computer that allows a user to operate software with his or her eyes, generating speech. The last time we did this was in 2005, I think. The technology was relatively new and had its limitations, depending on the limitations of the user. To make a long story short,  Robert showed promise with this technology, but, in the end, after a couple of years of trying to make it work, the limitations imposed by his still unknown illness prevented Robert from success: he could not sit long, even in his wheelchair, at the 90-90-90 position required for the camera to properly track his eyes (his neck could not be strengthened); he had a tendency to look away from the screen (which meant the camera had to be calibrated to his gaze again); calibration itself required up to 10 points in order for Robert to hit very small targets with his eyes (what might be required for him to look at a screen with 40 or more icons on it, or type on a virtual keyboard); and so on. We thought he could overcome some of this--he couldn't.

We had spent weeks arguing with the insurance company about this $17,000 device. It took hours and hours of our time, the involvement of the human resources department of Roger's payroll company (how he got our insurance), and the intervention of any number of other individuals. In the end, the payroll company wanted to keep my husband's business and exerted leverage on the insurance company to deliver this as we'd been in-process transferring to that insurer (through the payroll company) when the matter came up and they'd indicated they'd "probably" pay for it if we signed up with them. Insurers rarely pay for communication devices, and this was a stunt I could not pull off again, a maneuver accomplished under particular and exacting circumstances. A relative provided part or all of the money for the co-pay, which was about $2,000, plus an additional $600 for equipment the school system insisted we buy so that Robert could take the main parts of the device back and forth more easily. The school system promptly reneged on everything it had promised us, insisting that we had to train Robert to use the device before they'd ever consider its use in the schools--a position they dropped after we sought help from one of our state legislators, who delivered a letter on our behalf to the school board. At that point, months later, the school system said they'd discovered another vendor that made a less expensive device, which was something they might have told us earlier.

I told you the road down the mountain was twisty and perilous.

Five or six years later, in the fall of 2011, I was told by a therapist at HSC Pediatrics, the technology is much better. Where we'd been dealing with a multi-component system that had to be attached to a rolling bed tray, systems are integrated. In addition, the eye tracking software and hardware is much advanced. For example, Robert's wheelchair can be tilted back, only a 5 point calibration is required, and Robert can disengage with the screen and return, his calibration preserved.

I was still skeptical. The last go-round had been hard enough and there were bad feelings on many fronts when this "investment" in Robert did not work out. It might be said that Robert is not an investment or a business, and that X dollars in does not and cannot equal or guarantee X outcome or product. Robert's only outputs are the stability of his health and the quality of his life. I consider being able to communicate the most important piece of his quality of life, but I am aware of people who disagree with me.

But where did this all stand this past Tuesday? Tuesday was session six of an eight-session evaluation of Robert's ability to benefit from an eye gaze communication system. Two manufacturers, PRC and Tobii, loan devices to the clinic. On each, Robert showed promise, but the various parameters of the system software, the eye tracking hardware, the picture symbol libraries, all had downsides for him. I could see Robert using each device, but I knew from hard experience that his progress would be on an uphill road.

Then the Dynavox rep came with her device. On Tuesday. Within minutes, Robert was making selections--pushing virtual buttons with the strength of his gaze--answering basic questions about basic choices on the screen. Then we just let him play with a series of screens, all of which had phrase and sentence building symbols on them. He was paging back and forth, putting phrases together: "mom," "dad," "mine," for example, "go to" "MacDonald's" was another. Yes, we were his mom and dad and we were both there. We promised him we'd take him to MacDonald's. The product placement was a tad scary. But. He put these phrases together more than once, and there were others I forget, so wrapped up was I in watching him activate this newly miraculous machine, just with his gaze. The ease of it. His excitement. The possibilities. He had about 35 minutes with it, then the rep had to leave.

On the PRC, he'd told us that he wanted to play checkers. We've never played checkers before, but Edith has recently built a chess set made of Legos. The boards look the same, and that picture was the icon for the screen "checkers." I know what he was trying to say, even though that software set up did not allow it.

And here we are, brought back around to the issue of narrative again. At what point does Robert get to tell his own story? I'm not the gatekeeper of his story--I'm merely the conduit. The gatekeepers are all of you out there. Because this device costs, depending on the package, $12,000 to $15,000. At the present moment, I'm not in the position to write a check, although I'm already working the resources I can find. I am nothing, if not industrious. The school system might pay for this, but as you can see from the above, that's a long and treacherous path.

People who can't speak for themselves rely on the open-mindedness and the tax base and the public welfare agreements between society and the individual. Upon whether all of you out there think Robert is "worth it." IF I had a Medicaid waiver, Maryland Medicaid would pay for this. In three years, Medicare will probably pay for this, but by that time, Robert will have only 3 years left in the public school system, which would provide him with the best supports for learning to use this (he can stay in high school until he is 21). He has about 6 ahead of him at the present moment, if we had the device for next fall.

But I do not have a Medicaid waiver--because I have a job and my husband has a job and we have medical insurance. Robert does not require hospice, his health is currently stable, and he does not require 24-hour nursing care. He is not on a ventilator. Maryland does not take into consideration the overall severity of Robert's disabilities. Maryland's Medicaid waiver program serves a total of 200 children state-wide. Robert is in category 6, which is the lowest priority, and is currently #24 on the wait list for category 6. The last time a child was taken from category 6 was last fall. More than likely, he will qualify for Medicare before a Medicaid waiver is available. Medicaid is one of the few sources of funding for this device.

I have friends who might tell me that my level of personal responsibility with regard to my child (the job, the health insurance) qualifies me, in their eyes, more highly for Medicaid waiver-ship than others they might imagine out there (although I can imagine many more persons who deserve Medicaid more than I do). I have friends who have told me I should "go broke" to qualify for Medicaid, as though that would really solve anything. Oh, the extremes of the American electorate.

What's the story of your child's first word? First sentence? I'd love to tell mine someday.


A said...

It's humbling to think how long he's waited for the chance to say something. The first time my (non-verbal) daughter was able to express original language, truly in her own words, she was completely mind-blowing. Remembering it still makes my hair stand on end.

Elizabeth said...

Can we have a fundraiser? Seriously. Dead serious.

Elizabeth said...

When I took Sophie from NYC, where we were living at the time, to see Dr. Shields of UCLA, she was ten months old. I'll never forget that he described her as a "bright" baby -- he wrote it in the notes, even -- "bright-eyed" baby. I've held on to that for nearly seventeen years.