Names for Things
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.
16 replies on “Names for Things”
Perfect timing as always! I was just thinking this weekend how difficult it was to move from the term “developmentally delayed” to “special needs” with Jenelle. Now that she is 5, is she still “developmentally delayed?” How long can that delay be accurate, if the development never comes? Mental retardation fits the bill better for her now. And as you mention, it gets the services! ;)
So eloquently worded, and so very very true. Thank you!
Wow. Yes, you pick your words very carefully, and the result is nothing short of amazing. Thank you for a beautifully written piece.
Thanks so much for these wise words on words. It is so important to think and talk about this! As always, you hit the nail on the head with your own eloquent words!
Beautiful! I am linking your essay to my blog as we enter IEP season.
It’s unfortunate that names, labels, tags, etc. are necessary for dealing with information but lacking when dealing with people. The only word that I think accurate describes Evan is “wow.”
Thanks for this article Vicki. My hope it that each time I call some ignorant (usually young, but not always) person on their use of words like retarded or gay to describe something they don’t like, that they will hear my challenge each time they utter those words again. Your words expressed here will hope for the same.
The problem with Diagnoses today is that they are just lables, they describe a group of problems, but as you know they can’t tell you what went wrong, they only speculate, I agree with The Institutes for the acheivment of human potential this are brain injured children and we need to repair the damage the doctors have done to them in the name of science…prebirth, during birth and/or after (vaccines, medicatios and more!!!) Love, Gabby. :0)
P.S. I am going to Costa Rica to give my sons stem cell infusion… in hope of repairing their brain injury!!! And the only word that describes our children is LOVE!!!
“If I accept you as you are, I will not help you: however, if I treat you as though you are what you are capable of becoming, I will help you become that” …Johann Wolfgang Von Goethe.
Wow Vicki, all i can say is you have an amazing gift and thank you for blessing all of us with it!
“the power of language often resides in the stories it cannot tell…”
beautifully said. all of it!
you are a master of words — this was so accurate and beautiful. at the other end, IEPs fail to address my daughter’s interests/needs/etc… yet I go to the meeting every year.
Living a life without a diagnosis is hard, getting a diagnosis – medical terms that describe your child – is also hard. I don’t know which is worse. For me, it’s been a long 2 1/2 years and every new appointment seemed to bring us closer to understanding why our daughter is falling further and further behind. The words used by professionals – “developmentally delayed”, “speech impaired”, “globally delayed”, “cognitively impaired”, “mentally retarded”- never seem to apply to my child. Until the diagnosis. Still, after the professionals have spoken, one must remember that the medical world see our children for brief moments – we see their complexities.
Vicki, your courage is inspiring. Thank you.
Thanks for another great piece, Vicki.
I especially appreciate what you say about Evan being an “ex.” It makes me think about my different “ex” identities; how I define myself as well as how others might define me.
Hope you’re well.
A luminous read. Thank you.
Your experience with labels and “how” to describe Evan is heart wrenching. I believe right along with you that Evan is not the label, he is everything else that you described. The little boy who lives in a world custom made and navigates it with better ease than any of us could. A world that we could all learn from. What I am finding is that for every label there is a possibility. How can I bring an awareness to others about how accommodating the environment is for every one but those with labels? Evan is adapting to life using his talents to adapt, to explore and to astonish just like the rest of his peers. The challenge is to remove as many barriers as possible. To hold states accountable, to know the system and work with it as best as we can learning how our world can adapt to special needs children.
I have a twin daughter, Grace, who is 2 1/2 years old. She is bright, beautiful, developmentally delayed and has a feeding disorder. Our state has a program that uses state funds to provide therapy at a fraction of the cost. Now that she is nearing 3 years old we will have to embark on the label frontier with IEP meetings as we transition to the public system. I have been wrestling with labels and although I want funding for her I am conflicted. I am conflicted because if I label her, she might become that rather than what she can still develop into. I don’t want people to see the disability. I want people to see Grace. I have no doubt in the end that she shines through. What she might lack in size she definitely makes up for in spirit and personality. She can light up an entire room with her entrance. It’s so heartwarming to see and deep down I know she’ll be alright. Sure, she has her moments where she feels scared, nervous or unsure of her abilities. But she picks herself right back up and moves on. She is a fighter and for her I will fight for the best services possible. She is not defined by the disability, her inability to eat, her inability to run and jump and play as fast as her playmates. It’s not that she won’t. I believe she will in a little thing we call Gracie’s time. She has done most everything milestone wise, in her time.
I wish you the best of luck in your journey with Evan!
Like any other act of parenthood, our job is to keep our child’s identity fluid until set — by them.
This is so true and you put it so well Vicki!
I have made many sleepless nights trying to understand the imapct of a DS dignosis on my son. Nights when I didn’t want that label to define all he could be. In the end I told myself my job was to ‘put the bar up’ for him and his job is to decide if he can or wants to ‘come over the bar’!
Thanks for describing it in one sentance…..Great article!