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Product Details
| ISBN-13: | 9781574413366 |
|---|---|
| Publisher: | University of North Texas Press |
| Publication date: | 08/15/2009 |
| Series: | Mayborn Literary Nonfiction Series |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| File size: | 1 MB |
About the Author
DAN E. BURNS, Ph.D., graduated from Oklahoma State University in 1979 and taught English at Southern Methodist University, University of Texas at Arlington, and University of Phoenix, publishing in numerous scholarly journals. In 1990 his third child, Benjamin, was diagnosed with autism. Dan helped organize a Dallas chapter of Families for Early Autism Treatment, a support group for parents, and pioneered educational and medical interventions. He lives in Dallas, Texas.
Read an Excerpt
Saving Ben
A Father's Story of Autism
By Dan E. Burns
University of North Texas Press
Copyright © 2009 Dan E. BurnsAll rights reserved.
ISBN: 978-1-57441-269-7
CHAPTER 1
Wished Upon a Star
July 1990. Carrollton, Texas
The Carrollton Public Library didn't smell like an office; it smelled of cedar pencil shavings and Windex, an elementary school classroom. The tables were populated by schoolchildren writing their book reports. I was dressed for success: suit, tie, and briefcase. I didn't belong here. Likely a pedophile, the librarian no doubt thought, playing hooky from work.
I should be in an office building downtown, handing speech drafts to a secretary, or on an American Airlines flight to New York to interview the CEO of IBM, or giving a presentation in the Dell boardroom.
The librarian, black-frocked Miss Colfin, hair done up in a Pentecostal bun, pretended to ignore me but I felt she was watching out of the corner of her eye. Would she think I was going to stash books in my briefcase and sneak out? Would she think it was full of drugs?
Trying to look professional, I found the card catalogue and pulled out the musty "AU" drawer.
"No, Blunderbuss," a voice in my head said, addressing me.
One of my inner characters was afraid that Miss Colfin might put two and two together and deduce that I was searching for books on autism. "The pedophile must have an autistic son," she would surmise.
And that would make Ben autistic.
Turning my back on Miss Colfin to shield the file drawer from her view, I thumbed through the cards. There was only one book on autism, and the title was not reassuring: The Ultimate Stranger.
I pulled the book from the shelves, found a secluded table, and flipped through the pages.
"Endlessly biting his own hand, screaming like a wounded animal when you approach, endlessly slapping his own face, finger-painting his body with his own feces ... this is the autistic child," wrote Carl H. Delacato, the author.
If had been in the bathroom I'd have thrown up. I saw myself straddling the space between the washbasins, looking in the mirror. "This is not me," I would have thought, hands trembling. "Not me furtively scouring the back shelves of a public library at two-thirty in the afternoon, not me with baby puke on my suit, red- eyed, wrinkled, and unkempt. I've wandered off the set of the movie they are making about my life and stumbled into somebody else's film."
This is not me any more than the children described in this accursed book are like my three-year-old son.
Sometime in the dim and distant past, distracted by grief, I'd turned my old gray Buick left in front of speeding motorcycle. The bike hit the passenger door, flipping the rider over the top of the car. This is not happening, I thought. And for a moment I believed it.
Whew. That was a close one. For a minute there I almost thought — ha ha — Ben was autistic. Silly Dad. He's as normal as you or me, just slow, like Grandma and Grandpa said.
Boom. And the body hit the ground.
I stashed the book in my briefcase and fled.
* * *
Three years earlier ...
"Scissors." Snip.
"Big head," said the doctor. And out came Benjamin, my third child, beloved son. Sue went into false labor on the Fourth of July, 1987, and from the hospital window we could see bursts of fireworks branding the sky, followed by the tardy pa-pa-pa-pop that sounded like champagne corks toasting Ben's arrival. Though his birth was delayed until the middle of August, he was to be my fireworks baby, inheritor of everything his siblings had missed. At a party to celebrate Midsummer's Eve I explained to a former professor, a nun who specialized in Emily Dickinson, that Ben's brother and sister had grown up with hand-me-down clothes and Salvation Army bikes. But with my new job as the speechwriter for the CEO of a major oil company and an empty nest, "We can afford to give Benjamin whatever he wants."
The nun was unimpressed. She took a sip of her wine. "Don't," she said, "spoil him."
But I was looking forward to spoiling him. Ten years of penury in Stillwater, Oklahoma, living hand to mouth on graduate school stipends and my wife's salary, had given me an itch for a life without fear of overdrafts, a life lulled by the sturdy and certain flap-flap-flap of the cash machine. In the 1980s, oil-rich Dallas, J. R. Ewing's boomtown, was the ultimate cash machine. Sue and I were dressed for success, an image from Ozzie and Harriet."That necklace Harriet wore?" said Sue. "I want one like it. Those are Republican pearls."
Surely no child has ever been more eagerly anticipated than Benjamin. "Don't you want a sweet little baby?" said Sue, in bed, the night he was conceived, her hand seeking an answer. "A sweet, itty-bitty baby?" I said no, but looking out the window that clear cold January evening at a twinkling star, I wished upon it, and we rolled the dice. Yes, I wanted another baby. I wanted another chance to be a great dad.
* * *
1962. Stillwater, Oklahoma
The first time Susan moved from the fringes of my consciousness to somewhere near the center, she was in my way. She sat one desk ahead of me in high school geometry, junior year.
Two minutes until the 12:50 bell. I could feel the lunch line lengthening. Mr. Mihura, the teacher, was droning on and on about point Q at the intersection of a ray that bisects parallel blah, blah, one minute until the bell. Susan raised her hand and Mihura was driving into overtime for sure.
"Mr. Mihura?"
"Shut up," I hissed.
Susan turned around and stared at me. She was the only girl I knew who wore sunglasses indoors.
"Lunch," I stage-whispered, pointing to the clock.
"Tough titty."
The bell rang and Susan was up and out of her desk, blocking the aisle, jamming books and papers into satchels that hung off her body like overstuffed butt cheeks, half the students already out the door. "Class dismissed," said Mihura. Susan lurched into the aisle in front of me, swinging her ass, a moving obstacle blocking the fast lane. I was hungry for lunch, impatient, and to my seventeen-year-old eyes she looked like a granny driver in a '53 Ford pickup, going twenty miles an hour in a high-speed zone, me stuck in traffic behind her. I imagined her driving a beat-up truck farting black exhaust, blocking my way as I tried to pass to the right or the left, her book satchels bouncing off her hips like piles of sandbags rocking and rolling off the tailgate.
That was the year I told Dad that I was gay. "No, you're not," he argued. "You just need to meet the right girl." In search of Miss Right, I gave a party for my friends but only a few came. After the last goodnights were said, Susan stood beside me.
"Let's laugh," she urged. "Let's laugh for one minute."
I held my watch up and we aha-ha-ha'd as loud as we could, kept it going. But I couldn't tell from looking at Susan's face whether she was laughing or crying. There in the deserted living room, lights low, music playing, she looked up and put her mouth to mine. "Thy breath was shed / Upon my soul between the kisses and the wine," wrote Ernest Dowson. Now I understood. I was smitten.
Next day Susan and I skipped study hall and snuck to the brook. Waving her wand, she summoned up the creek snakes. Heads poked out of the water like little Loch Ness monsters. "I want to paint you naked," she told me. That night, after David and Lisa, a movie about star-crossed teenage lovers, I pulled up in her driveway. I was kissing her goodnight when her tongue took me by surprise. I accidentally stepped on the accelerator and smashed Mom's T-Bird through the garage door.
Reined in by the adults in her family, devalued — "You never were worth the trouble," said her mother — Susan saw herself as Cinderella sitting among the clinkers. Her self-portraits showed hard, bony figures with swollen, outsized hands and knuckles, drooping faces, waiting. Her favorite tune was Miles Davis's haunting trumpet solo, "Someday My Prince Will Come."
Enchanted, I fancied myself her prince. The Age of Aquarius was dawning, and Susan was an Aquarian, bound to the wellsprings of art, music, literature. In my adolescent mind, awash in hyperbole and hormones, all compasses pointed toward her. Tides moved with her moods. Subterranean rivers flowed through her veins. Blossoms opened and closed as she passed, and moon vines bred in her footsteps, flowers with fresh white faces lifted, like hers, toward the sky.
My boyfriend was Joel, a year older, my guide to all that was dark and dangerous, serpent in my Garden of Eden. Tennessee Williams once had picked sixteen-year-old Joel out of a line of boys and men hustling sex in Fayetteville, Arkansas. Williams said Joel looked literary, and Joel took the compliment to heart. His ambition was to become a bestselling author, like Jack Kerouac. There in the Moonlight Lounge by the drive-in theater, he assumed his Rebel Without a Cause pose, sleeves rolled up like an arm wrestler, and drummed his left-hand fingers on the table to a beat only he could hear: drummed and moved his head and shoulders side to side like a cobra. Joel believed that anyone of either gender who looked into his unblinking eyes would fall in love with him.
"Stillwater. Armpit of the world," he said. He licked his lips and blew onto his shoulder, a wet fart.
So it went: Joel by night, Susan by day.
Every weekday I would pick Susan up at 7:15 a.m., drive her to school, leave my Model A with the "Goldwater for President" sticker in the parking lot. After school we'd meet at the car and I would drive her to the Campus Drugstore and buy her an ice cream.
One Friday afternoon I found Susan wandering around the parking lot. The Model A wasn't where we'd left it that morning.
"Where did you go?" she asked.
"Joel and I went to DeLavon's for lunch."
Her green eyes flashed. Like a Rottweiler that turns on a kid, no warning, she fast-slapped me. "Princess was always such a good dog," says the bewildered owner, "a good dog."
In the end, I married the Rottweiler.
* * *
July 1967. Iowa City, Iowa
Clearly, I had found the right girl. Sue believed in fairy-tale endings, and when it came right down to it, so did I. But marriage didn't make me straight. Shortly after Susan and I settled into our new home in Iowa City, a former army barracks converted to married student housing, a maintenance worker arrived to paint the window trim green. Looking out the bedroom window, I watched him from the bed where Sue and I had recently finished celebrating our marital privileges. He was young, cute, and shirtless. My mind said no but my dick didn't get the message.
"Oh shit," I thought. "I'm still gay."
Here I was with a child on the way, married to a dependent wife whom I had promised to love, honor, and obey. Yet I couldn't keep my eyes off that shirtless painter.
I remembered Dad's advice when I confessed my inclinations to him: "Put a lid on it, put it in a safe, take it down to the basement, dig a deep hole, and pour concrete on it."
That's what I did. For the next twenty-five years, I became the person I thought Mom and Dad wanted me to be: the successful, upwardly mobile Dr. Jekyll. My heterosexual persona became a suit of armor, a shell that defended me from the outside world. But there was another person hiding deep inside. And if the lid came off every so often and Mr. Hyde came out for a romp, who was to know, and what harm was done?
CHAPTER 2Quirky Ben
August 1987. Carrollton, Texas
"Do you think the hospital would take him back?" I asked Sue in mock exasperation.
"We could leave him on the steps," she kidded. We both laughed and welcomed the comic relief. After two days of Ben at home we were exhausted. He screamed. Before feeding, after feeding, while his diaper was changed, bedtime to witching hour, Ben screeched like a madman howling through a megaphone. Twenty minutes of sleep, more screeching, another short nap if we were lucky, then back to the megaphone. Our other two kids hadn't been like this.
But Ben wasn't like our other kids; no, not from hour zero. First, his head was gigantic, above the 98th percentile, off the charts, sticking out of his mom's birth canal then out of the papoose wrapper like a preposterous Tootsie Roll Pop. I held my newborn son while the doctor sewed up Sue. Big head, I thought, good. With all that space for brains, he'll be a genius. But as the medics wheeled him down the hall, he screeched woefully, painfully.
"Stop," I yelled. They stopped the cart. "Something hurts," I insisted, rushing up to Ben. Could it be a wayward safety pin?
"No," the medics assured me, the first of many lies doctors would tell us about our son. "He's OK."
OK? Then why is he screaming?
"We don't know," they might as well have said, "it's not our job."
Then whose job is it? Surely not ... mine?
At home, Ben didn't take the teat. He lost weight, failed to thrive. He lay at the bottom of the baby bag, a kangaroo pouch, emaciated, a concentration camp victim.
At the pediatrician's urging we switched from breast milk to baby formula, Enfamil, loads of which he burped up or projectile-vomited. "I know how much you love our son," Sue explained. "I wanted to breast-feed him because I thought it would make you love me more." We walked around the kitchen and nursery with towels on our shoulders, ready for the next Enfamil moment. But the formula that stayed down seemed to nourish him. Ben gained weight, though his head was growing faster than his body. And he screamed and screamed. "It's colic," the doctor assured us. "He'll outgrow it."
Our older children were busy with their own lives. Hannah was a senior in high school, working at Target, miffed by this usurper who took her place as the youngest child in the family, worried that people would think Ben was her baby. Pete was living in his own apartment, coming home weekends to practice with his garage band, which drowned Ben's cries. We learned to cope.
Ben loved to be held and rocked, but for the worst of his gut storms the rocking chair wasn't enough. I bounced him up and down on the bed: the bigger the bounce, the better. I put him in the baby carriage and raced him over the roughest parts of the sidewalk. I drove him around in the back seat, seeking bumpier roads. I set him on top of the washing machine and juiced it up to the spin cycle. I took him horseback riding, swung him in his baby bag, tossed him high, high, higher. Ben would squeal his joy, then burp, leaking Enfamil. The burp signaled a few minutes of peace.
On the sunny side, Ben loved music and kinetic nursery rhymes. He'd squeal with delight at action-packed thrillers — Jack jump over the candlestick, Wee Willy Winkie runs through the town, Scotland's burning: Fire, fire, fire. He'd jam his palms together, clapping, and demand encore after encore. He craved to be knee-bounced on the rhyming words: "One, two, buckle my shoe. Three, four, close the door." His favorite games were hide and seek and "Here comes the big hairy monster: Arrrrgh." Tickle tickle tickle squeal. Followed by the blessed Enfamil burp.
Ben preferred looking at things and people upside down. He'd hang backwards over a cushion or pillow, his arched back a U-turn, his head an inverted smiley face, and he'd lock his radar-detector gaze onto my eyes. "Look," said my brother, Cris, sitting across the room with Mom and Dad. "They're bonding." And indeed we were. Gazing into Ben's eyes, I felt a connection so deep that I had to give voice to it. "I will always love you," I said. "I will never, never abandon you." It was a vow I would keep in times better and worse.
* * *
November 1987. Dallas, Texas
By the time Ben was three months old, Sue was receiving urgent phone calls from her boss urging her to cut her leave of absence short and return to work. Or else.
"Dan," Sue asked me, "Can you take care of Benjamin andthe business?"
I thought about it. Well, I was already working at home, marketing my speechwriting software, Thoughtline. My start-up business produced cash flow, but Sue's job with the Dallas Park and Recreation Department paid for the medical insurance that funded our high-maintenance baby. Raising a baby and a business together would be difficult, but I was a Burns, following in the footsteps of my entrepreneurial father, whose business card read "Difficult tasks performed immediately. The impossible may take a little longer." Hadn't I organized a commune of Canadian hippies into a documentary film production company? Hadn't I landed one great job after another, taught myself software engineering, created an innovative speechwriting product, and launched my own company?
(Continues...)
Excerpted from Saving Ben by Dan E. Burns. Copyright © 2009 Dan E. Burns. Excerpted by permission of University of North Texas Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Preface,Acknowledgments,
Part 1 The Storm,
Wished upon a Star,
Quirky Ben,
Diagnosis,
Part 2 The Journey,
Sunrise,
Sunset,
Part 3 Oz,
Sit, Quiet Hands, Look at Me,
The Benjamin Project,
Expect a Miracle,
Progress and Challenges,
Sue, Me, and Ben,
Doctors to the Rescue,
Ben at School,
Cold War,
Aftershocks,
Part 4 Never Give Up,
Over the Rainbow,
Going Home,