Untethered: Growing Up with My Autistic Son

Author

AUTHOR’S NOTE

This story, which covers a forty-eight-year span, is shaped by my perceptions and life experiences. I have been faithful to the facts as I remember them but acknowledge that memory is often imperfect.

For long-ago details, I have relied on journals, an inch-high stack of medical records, collaboration with friends and former neighbors, and a sister’s recollections. Most scenes are as I recall them; a few are composite constructions.

I have created dialogue to convey meaning and feeling. Except for verbal exchanges with my son Mark, whose speech is repetitive and limited, the dialogue is reconstructed.

In most instances I use real names; occasionally, I have assigned pseudonyms. I changed identifying details for one institution.

I have retained the use of the now–politically incorrect term mentally retarded to recreate the language of the era. I mean no disrespect.

Kierkegaard observed that life must be lived forward but can only be understood backward. I wrote this book looking backward, to help me make sense of my life and illuminate my path to the future. I hope my story encourages anyone in similar circumstances to feel less alone.

...it is silly

To refuse the tasks of time

And, overlooking our lives,

Cry—"Miserable wicked me,

How interesting I am."

We would rather be ruined than changed,

We would rather die in our dread

Than climb the cross of the moment

And let our illusions die.

W H AUDEN

Age of Anxiety

PROLOGUE

June, 1975

Mark hung on like a koala bear, arms squeezing my neck, legs pinching my waist. I placed one hand under his slim hips and rubbed his back with the other. He didn’t resist my tenderness. Not this time. Earlier my husband Brad and I had arranged his little-boy cotton shirts and shorts in a chest of drawers at the unfamiliar Pennsylvania facility for disabled children. Ten-year-old David, older by two years, had propped his brother’s tennis racket beside a twin bed with an institutional-looking cotton spread. Mark didn’t play tennis, the racket was the steering wheel of a make-believe 18-wheeler. He’d hold the head of the racket, hands at ten and two o’clock, and drive while humming like a diesel engine.

We should have brought Mark’s quilt, David said, the one with Charlie Brown and Lucy and the Red Baron.

David was right. Maybe we could pop over to the mall, pick up a bedspread with cars and trucks. And I still needed to tell the housemother, Miss Maggie, how my son loved peanut butter and jelly sandwiches on white bread, and toys that twirled and made music. And anything with wheels.

Miss Maggie had left us clustered in the foyer of Mark’s new group home for private good-byes. A few minutes later she returned and stood beside our family huddle.

I know leaving is hard, she said, hands open, palms up.

David shifted foot to foot. Brad slipped his arm around my waist, his warm breath brushing my face. Mark squeezed me until our chests were as close as those of conjoined twins. I couldn’t imagine loosening my hold or how I’d unlock his clutch. Miss Maggie lowered her arms and our group let out a breath.

I need to show Mark around, Miss Maggie said, introduce him to the staff and his new friends, help him settle in.

I honed in on the wholesome little-boy smell of my son. How could we drive back to North Carolina knowing that tonight when Mark’s breath slowed with sleep, there wouldn’t be one soul in the school—not in the entire town of Langhorne—who would stand over him and imagine his dreams?

Miss Maggie smiled at Mark and me and lifted her arms. Thank goodness she didn’t wag her fingers in a give-him-to-me-this-minute gesture. Her easy calm would be good for Mark, better than my yelling. Brad tightened his clasp around my waist. I leaned into him, found a sliver of courage, and loosened my hold on Mark.

We’ll be back, Mark, Brad said. We’ll see you soon.

Momma and Daddy and David have to go, I said, drawing my head back and looking my boy in the eye. You’re going to stay here with Miss Maggie.

We’d told Mark he was going away to school, would live in a different home, have new friends, visit us in North Carolina. We knew he hadn’t understood. Now he stared into my eyes like he was waiting to hear us announce we’d be back before bedtime. I flashed back to his first months when I’d have given anything for a simple look from him. Now, I forced myself to hold his steady gaze. What was he thinking? Did he feel we loved him?

Miss Maggie bobbed her head once and, as if we’d rehearsed it, I broke Mark’s leg-grip and she reached for his waist. Before I could say treachery, the hand-off was done. Mark surrendered to the betrayal with a twist toward his family, his chin quivering.

Mark, Miss Maggie said, you’re going to stay here with me.

Brad, David, and I called out our good-byes.

We’ll see you soon, Mark. I love you.

The words came out all aflutter, like a weak vibrato. Our family, now three, walked out the door into a June morning.

Brad and David sat in the front seat on the drive home, keeping their spirits up by talking sports—David’s batting average and his favorite college basketball team, the North Carolina Tar Heels. In the back, I lay on my side, gripping my knees, holding myself in a tight knot. Images of Mark’s trembling chin swept through me, leaving a wake of nausea.

I grew up in Yazoo City, Mississippi, tethered to the mores of the 1950s Bible Belt. Every turn in that cloistered world—backyard romps with neighborhood friends, poetry recitations in Mrs. Parker’s English class, anguish over teenage acne—was played out inside the culture of Southern Christian womanhood. My girlfriends and I learned to deny anger, avoid unpleasantness, strive to be attractive while eschewing vanity, and sidestep any hint that we might be as smart as the boys. These rules were as familiar to my sisters and me as fried chicken, biscuits, and gravy.

In our family one principle trumped all the rest: a woman’s highest calling lay in anticipating and meeting the needs of others. Self-sacrifice, when coupled with a cheerful attitude, secured a woman’s happiness. Spurred on by the promise of joy, I embodied these values, swooning when friends or family declared me unselfish or thoughtful or good. Now, after all that deference and martyrdom and congenial living, I was curled in a wad hurtling farther and farther away from my eight-year-old, unable to recognize my own life.

Stop the car, I said, I’m about to throw up.

My words came out puny, barely reaching Brad in time. I met his blue eyes, soft with hurting, in the rearview mirror. He pulled to the side of the highway and I opened the door, leaned out, and vomited onto the roadside gravel.

Are you okay? Brad asked.

Am I okay? I'd just given up on raising my own child, abandoning him at eight.

I’ll be fine once we get home.

Lying back on the seat, I tasted the bitterness coating my mouth. I reminded myself that everyone who knew Mark agreed our decision was a good one. But no reasoning erased the image of Mark’s wide-eyed stare when his most beloved people walked out on him. I tightened my body’s curl against a bone-deep ache and lay so still I barely breathed.

I never considered asking Brad to put his arms around me, remind me of our good fortune that Mark could live in a top-rated facility. He might have told me one more time that we were doing what we believed was best for our son. And I never thought to soothe Brad and David with similar words and tenderness.

Just beyond Washington, D.C., Brad stopped at a diner and we piled out for lunch. I couldn’t quit thinking about Mark. Was he driving his tennis racket or staring out the front windows, waiting for his family?

It’s weird without Mark, David said.

And damn quiet, too, I added.

I tried filling my emptiness with a hamburger and French fries and the richest, sweetest dessert on the menu. In front of the other diners, I kept my voice calm, like a regular mom having lunch with her husband and son. I glanced at David’s empty plate, grateful his preteen appetite held. He and his father had kept the talk going, carrying on about team rivalries and player mishaps. Maybe our family life would take on a new normal. But nothing about that lunch felt regular, not after leaving a chunk of my heart up the road.

Back in the car I was sick a second time. My lunch came up forcefully, sour and undigested, leaving me with the bittersweet satisfaction of puking a small part of that awful day into a fetid roadside puddle.

PART ONE

1966–1975

CHAPTER ONE

How was I so lucky? My newborn slept through his first night at home without a whimper. After the second silent night, I counted myself downright fortunate. At twenty-four, I was fit and strong and even though I’d given birth days earlier, I felt rested, energetic, and eager to care for our new son, Mark, and his two-year-old brother, David. I bragged to friends and family that our baby didn’t wake me at night. Or cry during the day. Most countered that surely our infant wailed when he was hungry.

No, he really doesn’t, I boasted. He’s a very good baby.

A few scrunched their brows like I was outright lying. I wasn’t. I didn’t lie.

My parents flew from Mississippi to our home in Durham, North Carolina, to meet their three-day-old grandson. They cooed and clucked, smiled for pictures, and posed the boys for a Christmas-card snapshot. Despite all the flurry and fuss, Mark didn’t fret. Not once. At the end of their two-day visit, a dawning recognition took hold. My baby didn’t make any noise. And there was something else—he never looked into my face, and that gnawed at me.

When David was a newborn and I snuggled him with his bottle, he fixed his blue eyes on my brown ones like he knew I was his lifeline. But Mark barely relaxed during his bottle feedings. And he stared just beyond my face. Sometimes it seemed he was purposefully averting his eyes. Was it possible for a baby less than a week old to avoid looking at his own mother?

I described my germinating worry to my husband, Brad. We’d met four years earlier, in 1962, at Baylor University. Brad had come to the Texas school from Alabama, I’d traveled from Mississippi. I fell hard for Brad’s quick humor, good looks, and unflappable demeanor. Now, when I told him I worried that Mark might be a little too quiet, I fell in love all over again with his cool and steady calmness.

Brad didn’t share my concern, but he offered to drive five-day-old Mark and me to the pediatrician’s office.

I’m afraid something’s wrong, I told the doctor once we were there.

Dr. Deal took his time, examining Mark with particular attention, and announced we had a perfectly normal infant.

I’d first met Dr. Deal earlier that week when he examined Mark after his birth. He had no way of knowing I was calm when it came to medical matters, not one to make up worries.

Mark doesn’t wake up in the night, I said, or cry, or thrash his legs and arms in hunger. Is that normal?

I paused, like I couldn’t believe my own words. I looked at Brad, who sat nearby with David in his lap, absent-mindedly turning the pages of Dr. Seuss’s Fox in Socks. He nodded affirmation—I wasn’t making anything up.

It’s eerie, I went on, the way he doesn’t make a sound.

The doctor made a few chart notes and reminded us that Mark had arrived two weeks early.

And he’s only five days old, Dr. Deal said. Your boy is fine, he just needs to catch up.

The doctor told me to feed Mark every four hours, day and night, even if he didn’t seem hungry. I made Mark’s one-month appointment and we left. Driving home, Brad took my hand.

Feel better? he asked.

Yeah, I do.

A few nights later I lay awake listening to Brad’s even breathing. Out of nowhere, my weary brain focused on a Kentucky spring evening. I was two months pregnant with Mark. We lived in a top-floor apartment of a worn-out house in Louisville near the Southern Baptist Seminary where Brad was a student. After dinner I took David into the front yard. My neighbor sat on her steps, watching her six-year-old, Donnie, kick a ball. David ran toward the game and I joined Donnie’s mother on the stoop. When the light faded, I gathered David in my arms to go inside. Protesting, he squirmed but I held on.

Wait, before you go in, Donnie’s mother said, let me tell you what my bastard husband did last night.

I cringed. I was a naïve twenty-three-year-old who hadn’t strayed far from my Southern Baptist roots. I’d never known anyone who used the word bastard. I wanted to cover David’s ears. And my own. Instead, I tightened my clutch on my eighteen-month-old and announced that David needed to get to bed.

Stop squirming, David, I said, readjusting my hold. We’re going inside to see Daddy.

My neighbor grabbed my shirttail.

Wait, she said, let Donnie give David a goodnight hug.

I wanted to get away from this woman and her foul language, but remembering my manners, I stooped down and Donnie wrapped his sweaty little arms around David and me. David blew kisses, and we went in for the night.

A few days later I came home from the grocery store and saw my neighbor pulling weeds. I helped David out of the car and held on to him with one hand, clutching a brown grocery bag with the other.

Guess what, I heard across the front lawn. Donnie’s come down with the measles.

Oh, really? I’m sorry.

David tried to wriggle free and I remembered the baby inside of me.

Does he have rubella?

Rue what? she said, wrinkling her nose.

The German measles. Does Donnie have the German measles?

Hell, I don’t know what kind of measles. He’s got a fever and red spots is all I know.

My chest tightened. What if Donnie had rubella?

Well, I need to find out. Don’t you remember I’m pregnant?

What’s that got to do with anything?

She squinted up at me. I tightened my grip on David’s hand and told her how the German measles could harm a fetus, particularly in early pregnancy. Would she find out what type of measles Donnie had and let me know?

Hours later she phoned to say Donnie had rubella. I quashed a rising panic and called my physician. The doctor’s words were steady, without a hint of alarm. He instructed me to come to his office for a gamma globulin injection, a blood product that would strengthen my immune system.

Don’t worry, the physician said. The shot will protect you and your baby.

I knew about rubella, and how it could leave a developing fetus blind or deaf. Or mentally retarded. But I fastened onto the doctor’s unruffled reassurance and set aside my fears. Until months later when my too-quiet baby showed up and memories of that Louisville evening came roaring back.

I scooted toward the middle of our bed and curled up closer to Brad. I tried mimicking his breath but mine came out fast and ragged. Placing a sweaty palm over my pounding heart, I rested the other hand on my still-spongy belly. Was it possible I’d exposed my little baby to a damaging virus when he was no bigger than a tad- pole? My heart raced. I mentally flipped through the two weeks since Mark’s birth. Dr. Deal had said our son was perfectly normal, but I couldn’t shake the feeling that something was wrong with my baby.

I tried counting sheep and silently reciting David’s favorite Mother Goose rhymes. But my mind skittered around, taking me to a long-ago, hotter-than-blazes Sunday afternoon in my Mississippi hometown, Yazoo City. I rode shotgun while Mother, who spent many Sunday afternoons delivering food to Yazoo County’s poor, drove down a dusty gravel road. Two grocery bags packed with canned fruit and vegetables rattled on the car’s backseat. We parked in front of a shack sitting in a yard without a stitch of grass or a petal of flower. Inside an old, gray-haired woman rocked, her gaping dress revealing dried-up breasts hanging against a hollow belly. I’d never seen a naked lady before.

Inside the stifling house I moved toward a window and nearly stumbled over a girl, about eight years old, lying on a pallet on the floor. Her black hair stuck out haphazardly from a too-small head. Open mouthed, her irregular teeth looked like scattered pebbles. The girl lay still, completely silent. Frowning, I chewed the inside of my cheek and stared. I stepped closer for a better look. After what seemed like a long while, I eyed the front door and glanced at my mother. Unfazed, she was taking her time, talking softly with the gaping-dress woman.

Once out of earshot, I’d asked what was wrong with the little girl. Mother said she’d been born without much brain.