I am a writer; my whole life I have worked with words. And yet on my journey with my son I have come to know the quiet secret every writer knows in her heart: despite our love of words and the power they have over us, words can only ever approximate. I remember once asking a pediatrician to consider re-hospitalizing my son after a spate of seizures when he was ten months old. "He's a super preemie," I told the doctor.
"He's ten months old," the man corrected me. "That makes him an ex super preemie."
With that one word -- "ex" -- my son's prematurity had been dismissed into the past, and made history. No longer a preemie then, but something else.
In the beginning, I could call my son a "preemie" or, if I was feeling jaunty, the evocative "super preemie." By ten months of age, as the pediatrician so artfully corrected me, the word no longer applied. So what was next? Evan's life after birth became a long search for the words we would use to describe him: mentally retarded; blind; nonverbal; developmentally delayed. And yet with each word, I was reminded once again how great the gap between the name and the thing itself.
To call my son nonverbal, for example, is to gloss over his lovely singing voice. Is he mute then, technically? Not at three in the morning when he's laughing up a storm in his bed. Evan's lack of speech does make him nonverbal, and yet, given the assistive technology he uses, he's still a communicator.
The distinctions go on and on. For a blind kid, Evan's got an incredible sense of direction. At the park, he'll find his way from the gate to the swings -- a good fifty feet -- without bumping into a thing, and barely using his cane. For a mentally retarded kid, he's keenly intelligent. He knows to come into the kitchen when he's hungry, to find his cube chair at school when it's circle time, and to rattle the sides of his bed if he's tired. When I think about the words I use to describe my son, none of them really add up at all to who he is.
Most parents of special needs children can speak at length about their difficult relationship with the language used to describe their children. Many will seek out a label (or diagnosis) in order to gain services for their child. Like my own tendency to seek out words for things, our governmental systems need labels too. The first page of the infamous Individualized Education Plan includes a rubric of "eligibility," i.e., the diagnoses, labels and language used to define the child and qualify him or her for special education. "What's his eligibility?" is often the first question asked of a parent about a child with special needs.
In Evan's case, there is often a quiet moment at the beginning of the yearly IEP meeting when we toss around the labels, and see which one seems to apply best. "Mentally retarded" is one term of eligibility. A former teacher of Evan's resisted that label since, as she put it, "We just don't know yet." Besides, she added, "he qualifies under the other labels anyway."
Where I live, there are five categories of eligibility for state-funded services. That's where Evan's blindness doesn't carry the day, but where we apply the "moderate mental retardation" label instead. What works for the school doesn't work for the state, and so Evan puts on a different shirt, one that reads "MMR."
In the world of special needs, the language we use to describe our children comes loaded with meaning. I've resisted the mental retardation label for Evan because at its heart resides that terrible word, "retard." A word used to taunt kids like Evan, exclude them, make them feel awful for being different, or slow. An insult. While our governmental systems need words and labels, as mothers and fathers we resist identifying our children with the label. Words carry connotations; they are rigid, inflexible.
Like any other act of parenthood, our job is to keep our child's identity fluid until set -- by them. For a typical kid this might mean cheering a victory on the soccer field even if we see, quite clearly, that our child is not a jock. Or, perhaps, avoiding the term "boyish" to describe one son over another. For a child with special needs, this might mean keeping a diagnosis private -- not as a means of denial, but as a means of protection until the child is old enough to know how to speak the words, and to know what they mean, especially when applied to herself.
As a college student I was a big fan of deconstructive criticism, a branch of literary theory devoted to unchaining the connection between words and things, mostly by showing how those connections are arbitrary rather than inevitable. In the same way, the pediatrician unchained Evan from his preemie status by declaring him "ex." I learned then what I continue to know now: that the power of language often resides in the stories it cannot tell, the moments when the names for things don't add up, or are cut loose from their mooring.
And so when it comes to my son, I pick my words carefully, and try to name only the things I know to be true, for now.