January 2014


CELEST MARTIN teaches Journalism at the University of Rhode Island, where she has been for 35 years, in English, in Writing and Rhetoric, and since 2009, in Journalism. She has published non-fiction essays in a variety of venues, and has written about the uses of creative nonfiction within a Writing Major.  In  addition, she has published in Disability Studies, teaches a course in that area, and is an active member of the Rhode Island Council of Developmental Disabilities.

PERFECTION BY ANY OTHER NAME: A NEW PARADIGM FOR PARENTAL DREAMS

      


“But the child who is born on the Sabbath Day
 Is bonny and blithe and good and gay.”
                              - 1887 Nursery Rhyme

January 1990.
“What we’re seeing with Andrew are pervasive, across-the-board, delays.”

      Pervasive?  That sounds ominous.  That sounds long-term. . .  much worse than what Boston Children’s was suggesting—they just said a “delay.”  “Delay” means he’ll catch up, right?  He’s all blond curls, blue eyes, and long eyelashes. And he’s smart, I know he’s smart. He just doesn’t like doing the same things as other kids.  Once he’s learned how a toy works, he’s not interested.  He wants something new.  Isn’t that a sign of intelligence?  How can he not be perfect?  Does this mean he’s going to need. . . special ed?

     The stuffy little room in the basement of Adams Hall became stuffier. I wanted to grab almost three-year-old Andrew and run into the cold January air and BREATHE.  I glanced at his father beside me.  His face was unreadable. It was always difficult to tell whether Riley was listening or whether his ADD had caused him to tune out. Not that I knew it was ADD then. I mistook it for indifference.

     My academic brain remained on auto-tune while Gerri spoke. I liked and trusted her from the very first encounter she’d had with my son. Unlike other clinicians, she didn’t exhibit veiled impatience; she didn’t rush him in the sugary-sweet sing-song voice I’d begun to learn was used on those who are perceived as “different.” She’d been wise enough to let him roll his beloved school bus back and forth until he calmed sufficiently to be videotaped, a first step in the evaluation process.  She was a tiny woman with dark, contemplative eyes. I learned later that her unflappability and centeredness came from daily meditation.  In her profession, her size was an asset, since she worked frequently with toddlers. Small and soft-spoken, she was unintimidating.  But today, calm and small of stature though she was, she stood tall in expertise .Her knowledge in communicative disorders had invested her with the power to explode my parental dream of the perfect child.  My four-year-old daughter, though temperamental, already exhibited unusual artistic ability, and had been labeled “gifted,” by her pre-school teacher for both her artistic ability and her advanced verbal skills. I was certain that my son, though he had different strengths, was gifted, too. I was sure he was perfect.
     And I was right on both counts.

June 2008

     I am standing in the bleachers of the University of Rhode Island, where I teach.  But tonight I am not here for any academic reason.  I am here because URI is hosting, as it does every year on the first weekend in June, the Rhode Island State Special Olympic Games.  Andrew passes below me in the parade of athletes, waving enthusiastically as former teachers, bus drivers, teachers and teacher-aides, home-based workers, and friends from all of his 21 years call his name from every side of the football field. At 6’4”, with very blonde hair, (still wavy, thick, and the envy of his sister) and a high-voltage smile that glows even after three laps around the field, he is easily visible among the rainbows of uniforms, the wheelchairs, the proud coaches, and military flag-bearers. One of his many special gifts is this: His smile is like the first lit candle passed around in a family  circle when the power is out: each candle lights the next, and what begins as a circle of darkness ends as a circle of light. Except that his circle is people. They don’t forget him. Former teachers call to tell him of a new baby, therapists from years past check in. We joke in the family that of all of us, he is the social butterfly, always on the phone, always making plans with someone. Before he goes to bed every night, he checks his bank balance on the computer, then catches up on e-mail with his extended family. So the next time you read that people with autism aren’t socially inclined, don’t believe it.  People with autism, like everyone else, are individuals. Whatever else the screenwriters got right( (and they got a lot right), they got the ending in Rainman all wrong. I am certain that Ray loved his brother, and would have sacrificed his comfortable routine to be with him.

     Born at 9:18 AM on a March Sunday in 1987, Andrew is a true Sunday’s child as described in the old nursery rhyme in the opening quote. Watching him tonight, my heart contracts with love for him, and vignettes of memories play in my head. There are moments of fear--fear that he would never learn to produce an original sentence, for example--and moments of joy, like the day he learned to read. But one of them is that moment when I thought I had lost my “perfect” child. It is a moment of which I am ashamed.

     What flew through my head when I first heard Gerry Theodore’s clinical impressions of Andrew were Andrew’s undeniably good looks, and his obvious ( to me, anyway) intelligence. But is either of those what really makes a child “perfect” to her parents? To the world? Or does the perfection reside in the fact that the child completes one’s life in a way that no other individual or event ever could? A friend of mine once said to me, shortly after my daughter’s birth, “We get the children we deserve.”  At the time, her son was in a particularly obnoxious phase of the teen-aged years.  As Roberta could be rather acerbic herself, I assumed that for once, she was regretting her dry, and borderline- hurtful, wit.   But I have thought many times since of what she said, and wondered just how much truth true it might contain. .

     When I was sixteen, and in the “college track” at my regional Catholic high school, my Depression-era mother became concerned that I didn’t know how to type, and wouldn’t “find a job.”  She demanded that I take a typing course offered in the evenings at our local public high school.  Bored with the exercises we were given to practice our typing, I decided (influenced, undoubtedly by the simultaneous events of my first love and Sister Cora’s affinity for the Romantic poets) that I would practice by typing love poems.  One of them contained the line, a version of which is often found on “relationship” greeting cards:” for  you have carved out/places in my heart I never knew existed.” Though it may sound trite from over use, it is Andrew that I think of when I remember myself typing that line, and pondering, at sixteen, whether anyone would ever make me feel that way.  Now this—this is the perfect child.

     In all honesty, one of my greatest fears in life had been that I would have a child with special needs.  I simply didn’t think I would have the patience. Yet strangely, from the time that in my usual pile of books under the Christmas tree, there lay one titled A Memoir of Mary Ann, and later, Death be Not Proud, then Karen, special needs memoirs became one of my favorite nonfiction sub-genres. Unfortunately, in those days, those memoirs largely fell into the category of “triumph-over-adversity,” a category eschewed by today’s disability rights activists.  Nevertheless, I learned from them.  I also became fascinated with the brain, and read widely on that topic. In my adult years, still tentatively exploring the nonfiction genre as a teaching and writing area, I read the Torey Hayden books.  Torey Hayden is a special education teacher who has written about several of her classes, and in some cases, about particular students. It was almost as though some power greater than myself was preparing me for an event that would change my entire world-view.

     What had once been my greatest fear became my greatest gift. Perfection.

     So Andrew’s perfection, if I look at it from the most selfish viewpoint, resides in the fact that he is exactly what I most needed in life. He has enriched my world immeasurably.  Because of him, I have met some of the most compassionate people I will ever know. Because of him, I have learned the vast difference between compassion and pity.  And because of him, I never run out of material to write about.  And that doesn’t mean I always write about Andrew.  The field of disability studies is a rich one with many facets; it is a field I might not have involved myself in if I were not intimately involved with disability.

     And what perfection does Andrew offer the rest of the world?  He is still nice to look at, and careful about his hygiene. Part of the brightness of his smile is his perfect, white teeth. He still has long eyelashes( his sister envies those, too). But there’s something  about his smile.  It radiates joy. It’s a smile that’s impossible not to return, no matter how poorly one’s day is going.  His autism makes him literal, and he has had to work very hard to learn idioms and when to use them. But use them he does.  The other day, he ran into the convenience store while I pumped gas.  When he came out and saw me looking at the total on the pump in abject horror, he promptly hooted, “It’s highway robbery! Outrageous!” What could I do but laugh and shake my head and remember when I wondered if my little boy would learn to speak?

     He is empathetic, a good friend to his friends. One is a woman whose disability is primarily emotional. Although he will tell me she is a “drama queen,” he patiently consoles her on the phone, and listens as she describes for the hundredth time the crimes and misdemeanors committed against her by her Aunt Jeannie, with whom she lives.

     He is an animal lover, who cares tenderly for his overweight beagle-basset hound mix, BoBo. We have three dogs, and he tends to all of them, but BoBo is his.  In the winter, he zips up her bright yellow fleece doggie coat .   If thunderstorms are threatened, he makes sure to bring her in before he goes out, even though she has a dog house with a comfy, lifetime-guaranteed bed.  If it starts to rain or snow unexpectedly, I can count on a phone call,” Mom, will you please bring BoBo in and keep her warm?”

       Andrew’s autism leaves him remarkably free of socially –constructed biases, be they racial, gender, or otherwise. When he was younger, in the throes of his vacuum  obsession, he wanted most of all a pink vacuum to add to his collection. Pink for girls? Never entered his mind. He would not consider identifying people by their skin color or ethnicity when referring to them.  No one is “black,” or “white,” or “brown” to him, or Italian, or Irish, or Hispanic. They are just people.  And society calls this mindset disabled?

     I beg to differ. I call it “perfect.”.