A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story

Eustacia Cutler

                      
A Thorn in
My Pocket

Temple Grandin’s Mother
Tells the Family Story

Future Horizons, Inc.

A Thorn in My Pocket

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© Copyright December 2004, Eustacia Cutler

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ISBN 13: 978-1-932565-16-4

Ebook ISBN: 978-1-935274-38-4

Any beetle can live a flawless, impeccable life, infallible in the business of procreating beetles. Not us: we are not necessarily good at anything in particular except language and using this we tend to get things wrong. It’s built into our genes to veer off from the point; somehow we have been selected in evolution for our gift of ambiguity…

…We do not understand why we make music, or dance, or write poems…We are bewildered, especially in this century, by the pervasive latency of love…

Lewis Thomas, M.D.
Chancellor, Memorial Sloan
Kettering Cancer Center, NYC

1980 Harvard Phi Beta Kappa Oration:
“On The Uncertainty of Science,”
Harvard Magazine
, 1980

For My Children

Table of Contents

Prologue

Chapter 1: And Baby Makes Three

Chapter 2: As the Twig Is Bent

Chapter 3: Childhood

Chapter 4: The Separate Worlds Begin

Chapter 5: Things Fall Apart

Chapter 6: And Start All Over Again

Chapter 7: The End of Childhood

Chapter 8: Then What Happened?

Chapter 9: Looking for the Source

Chapter 10: The Legacy of Genes

Chapter 11: What It Means to Be Human

Acknowledgements

Bibliography

Prologue

An image haunts me.

Temple, just turned three, is lying in a hospital bed. A nurse leans over her, gluing wires to her scalp.

Terrified, Temple struggles and screams. I try to soothe her—and myself—telling her it won’t hurt, that it’s only wires, telling myself to practice distancing as the medics do. Yes, just withdraw into that safe place where everything is reduced to an interesting research study, a laboratory haven unconnected to feeling.

But Temple’s haven is dangerous, her brain has trapped her in an icy limbo where she must live each day denied response. I hold onto her hand and vow I won’t let her freeze to death in that tempting snowdrift, so I, too, mustn’t go there or we’ll both freeze.

Temple stops her thrashing and grows sleepy. The nurse has given her a sedative, she assures me it won’t affect the reading. Watching Temple fade off, I whisper scraps of Keats.

My heart aches, and a drowsy numbness pains
My sense, as though of hemlock I had drunk.

Finally, the medication takes effect. Temple falls into a deep hospital swoon. The electroencephalogram is ready to register her living brain waves.

Fifty-five years from that moment when her prognosis lay in question, Temple will be known the world over for her miraculous triumph over autism. My story is of her first young journey, from 1947, when she was born, to 1962 when, at fourteen, she went away to a special boarding school. It’s also her father’s story. Both stories have great holes in them where I’ve lost hunks of the past through timidity and denial. Perhaps in the process of writing, I’ll be able to find them and perhaps I won’t and perhaps that’s just as well. There must be a reason for repression.

There are also hunks missing because my other three children have asked to be omitted from this tale, which says worlds about their childhood or lack of it. While trying to help Temple, I left them in the dark. Their innocence lost, they had to be braver and more generous than children should have to be. Temple and Daddy were the stars—the siblings and I, minor constellations circling uneasily around them. In spite of it, the siblings have grown up to be wise and unique, and I’ve endeavored to honor the spirit of their request.

I was young when Temple was born, both in years and experience. I soon found out that, if I was going to help her—or any of us—I’d have to put away my baby terror and grapple with whatever each day brought. So, in effect, the story is also that of my own young awakening and growth: a classic bildungsroman, if you will.

How did I come to write it?

A few years ago, Temple—now a full fledged college professor with a second career designing cattle handling equipment, and a third career as star lecturer on the autism circuit—asked me if I would join her in lecturing.

I’ve arrived late to this task. Putting the years into words for an audience hasn’t been easy, so I’ve taken my cue from Robert Frost who said, “I teach to find kindred spirits, to comfort them and myself.” In the process of that, I’ve learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know she’s a baby, but, equally true, a mother needs a baby to know she’s a mother. When those first infant/mother responses can’t grow, a whole family identity is thrown out of kilter. I understand that far better now, from the vantage point of years, than I could when I was young. I understand, too, how much parents long to be good parents. The purpose of my lectures is to find them and comfort them in their never ending battle with autism.

“Think of me as your future,” I tell them. “I am where you will be many years from now, when you know how it all played out, when ‘what will be’ has turned into ‘what was,’ and you will have come to terms with it.”

“Perhaps not in the way you thought you would, but you’ll no longer feel trapped in a morass of angst and guilt. You will have resolved your child’s future and your own. You’ll know you’ve given full measure, and the measure you’ve given has never been pointless.”

“I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, in the future, to your surprise, your dreams will have changed and changed you.”

“I know that’s not what you want.”

“What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That’s the point; that’s the talisman.”

Theodore Morrison, who knew Robert Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.

“I always carry something in my pocket I can touch when I’m talking,” he told Morrison, “so I’ll remember who I am. Lately it’s been a thorn.”

                      
A Thorn in
My Pocket

Chapter 1

And Baby Makes Three

August 29, 1947. Temple isn’t born; she’s induced. As is the present medical custom, I’m drugged almost out of consciousness, and my waters ruptured by a nurse. I thrash about for hours in an artificial labor and finally pass out cold. The doctor cuts me open from the vagina to the anus, takes the baby, and stitches me back together like a Christmas goose. Hours later, I regain enough consciousness to see my husband Dick hovering over the bed with a huge bunch of yellow chrysanthemums and magnolia leaves.

“What did I have?”

“You had a girl.”

“Can I see her?”

The nurse leaps in. “The baby can’t be exhibited until the next feeding.” The baby is her property, sealed off in a nursery behind a glass wall where I can’t hear her cry. “Because,” the nurse explains, “we have to establish a schedule. The baby must learn to cry alone until it’s feeding time.”

I fall back into a stupor. By the time I come to again, Dick has gone, and it’s long past the 9:30 feeding time. The nurse says it’s too late to make an exception, I’ll have to wait till morning to see my baby.

“After all, I can’t be running her up and down the corridor, exposing her to possible germs.”

That night I’m hit by an attack of grinding afterbirth pains. No one’s told me about afterbirth pains, and in the druggy dark, I keep having the same nightmare over and over: I’m giving birth to another baby, and there’s no one to help me.

A few days later, my milk comes in and I swell up to the size of two croquet balls. The nurse gives my nipples a painful pinch.

“You can’t nurse,” she announces. “You have inverted nipples.”

Inverted? I look down. My nipples have disappeared into the veined agony of two immense, cement udders.

“Why do you want to nurse your baby anyway? Nobody does that anymore. Besides, we wouldn’t bring the baby out to you for the 2:00 a.m. feeding. What’s the point? The nurse is up. The baby’s up. The mother’s up. You need your sleep.”

She thrusts the baby’s mouth up against my throbbing breast. The baby turns her cheek to my nipple, her tiny mouth makes sucking motions. My heart leaps. Milk dribbles out of me; the baby tastes it and turns her cheek to me again. I dribble some more. The baby’s brand new pink mouth, only days old, roots about in vain, then she lets out “lah! lah!” screams of frustration. Incessant, rhythmic. I didn’t know that’s how new babies cry. Her upper lip curls back to show the tiny pink kitten-membrane attached miraculously to her upper gum. Somewhere inside that gum are little seeds of teeth. Her tongue curls back, the shape of a heart, the shape of every cartoon heart tongue. Her eyes shut tight, nothing visible but a spiky fringe of tiny lashes against her cheek, now red as my breast. She screams, milk pours out of me. The milk I want so much to give her; it’s there and it’s not there. The frustration exhausts us both. Love doesn’t cut it, and the nurse takes the baby away.