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Of course, behind the numbers, the debate, and the speculation, individual families are struggling to live with autism every day. Some parents have described autism’s onset as being like a cloud slowly descending over their child, until the family is finally smothered by despair. Parents wake up each morning challenged yet again to reconcile the Spartan social world of their son or daughter with their own. After months and even years, most families are able to find a new kind of normal. Others never do.
In See Sam Run, award-winning writer and journalist Peggy Heinkel-Wolfe describes how her parenthood quickly descended into chaos as her son, Sam, became uncommunicative and unmanageable. “I’d grown to hate making entries in his baby book,” she writes. “The energy I had before he was born, when I wrote paragraphs anticipating his arrival, was gone now. Writing down Sam’s barest achievements felt fraudulent.” Little by little, she found a new truth: that by learning to understand the ugliness inside herself, she learned to love her new life and her son, and to harness, at last, the energy needed to realize Sam’s fullest potential.
See Sam Run reaches deep into the heart of anyone whose life has been touched by developmental disability—and it will resonate profoundly with those who have been transformed by a newfound ability to love.
Some girls dream of becoming a mom, but I wasn't one of them. I wanted to play the piano ever since I was six years old and heard my Aunt Helen play Beethoven's Moonlight Sonata.
I was nine when I started class piano lessons. In the beginning, I practiced at home on a cardboard keyboard my teacher gave me. I imagined a sound like Helen made. Dad eventually brought home a turn-of-the-century "upright grand" piano—a pizza-parlor cast-off covered in deep blue paint. When I first pressed down on the ebony and ivory keys, the sound I made resonated all the way through my bones.
That same year, one of my teachers at Byron Kilbourn Elementary School decided I was gifted. Had I attended fifth grade at Milwaukee's magnet school for gifted children, there would have been accelerated math, special study projects, even violin lessons, to go along with class piano I'd just started.
We visited the magnet school, but my parents wanted to think it over before enrolling me. Dad was attending Marquette University's School of Dentistry and we had only one car, a green Chevy Parkwood station wagon. I would have to ride a city bus every day to get to the new school.
Before Dad started dental school, he was a research biologist at the University of Wisconsin in Madison. I attended kindergarten at a well-appointed, private Catholic school near our home when I was four years old.
When we moved, I watched Dad make the first payment for our apartment in a public housing project on Milwaukee's west side with a one hundred dollar bill. I'd never seen one before. Mom and Dad had little to spend after that. Every time we drove by the Chocolate Shoppe, I hoped we'd stop to get ice cream cones. I liked Blue Moon flavor best. I dared to ask for an ice cream only once, but Mom and Dad said no.
The teachers at Byron Kilbourn Elementary struggled mightily to serve us kids from Westlawn, often breaking up fights during recess and waiting in empty classrooms on parent-teacher conference day. Mom told us we couldn't play on the neighborhood jungle gym because it was usually covered in broken glass. One night, we nearly had a riot in our neighborhood when a goodwill concert for interracial understanding disintegrated into a shouting match over the Vietnam War. As police descended on the angry gathering, Dad grabbed my hand. Carrying my little sisters, both he and Mom hustled us back to the apartment. Their silence was haunting.
On the way to the magnet school, that city bus would have taken me through even rougher neighborhoods. Fearing for my safety—and knowing we were moving soon after Dad graduated—my parents refused to enroll me.
The summer of 1971, before I turned eleven, we moved up north to a small town where Dad started his practice. New London was surrounded by hog and dairy farms. Some of my classmates helped with the milking each morning, stepping off the school bus with manure still stuck to their work boots. Others lived in town, like we did, and walked to school. New London was filled with families who'd known each other for generations. I didn't fit in. A classmate flirted with me on the way home from school once, but I didn't understand. Even though he was a head taller than me, I tackled him in a snowdrift and pummeled his face and belly with my fists. The other kids teased him. They laughed at me even more.
New Londoners sorted teenagers into good and bad. I was on my way to achieving the labels I didn't want—a bad girl, for being mouthy and streetwise, and a fat girl, simply because I was growing up. I withdrew to my piano, skimming through my lesson material so I could explore harmonies I found soothing or interesting, and improvising on them for hours.
Dad's dental practice grew fast. He moved out of his windowless downtown second- floor space next to the Wolf River and into a new building uptown. I liked the building's many picture windows overlooking the Embarrass River, its bed wild with maple trees and trillium. Dad paid me to clean the new office every Sunday to help save money for college.
He also junked the station wagon since the floorboards had rusted so much the taillights flickered. For fun, he test-drove a Mercedes-Benz, and then he bought that shiny, new maroon sedan on the spot.
Mom and Dad were strict with me and my sisters. I wasn't allowed to go to school dances or out-of-town games. I defied them once in the eighth grade and rode the school bus three miles to Hortonville to watch a junior varsity basketball game. The game had just started when Dad showed up in the doorway at the Hortonville High School gym. My friends noted his arrival with pointed fingers, saying, "Peggy, isn't that your dad?" Overwhelmed with embarrassment, I left the stands without making a scene.
In high school, I tried to be one of the good kids. I didn't get drunk, drugged out, or pregnant. I earned straight As, but my achievements didn't seem to matter. I always felt I wasn't good enough. In driver's education, I passed parallel parking on the first try, but Mom and Dad told me I wouldn't be allowed to get my license until I left for college.
My junior-high girlfriends shut me out of their circle in high school. I never found out why. Desperate for acceptance, I developed an eating disorder, well before magazines were describing the problem. I didn't have a word for mine. I drank broth for lunch during the school days and soaked up compliments from new friends about how slim I looked. But by night, my starving body rebelled. I ate and ate, and purged it all, starting the cycle over again. On a good day, I succumbed only once, but on a bad day, three or four times—rotting my teeth and popping blood vessels in my eyes.
By now, Dad worked long days. He golfed on Thursday afternoons and Saturdays. If he noticed the change in me, he didn't act on it. Mom oversaw endless renovations to the 125-year-old farmhouse we lived in and took to hippie things, like making pottery and back-to-the-earth cooking. If she noticed, she didn't act either.
My class of '78 graduation photo, taken on a sunny day beneath a beautiful birch tree, failed to hide my cloudy eyes and sallow skin tone. No one saw what I'd become, and I couldn't bear to look anymore.
My disease had become a gurge the summer before my senior year. One Saturday morning, when Dad was golfing and Mom was busy with my younger sisters, I woke up late, still reeling from a bad fight the night before with my boyfriend. I locked myself in the upstairs bathroom and surrendered, trying to swallow as many aspirin as I could. It was the most powerful drug my cautious parents kept in the house.
I didn't write a note, but wanted to say goodbye to someone, so I called my best friend and told her what I did. She called back and told Mom. As they wheeled me away, I saw through my own foggy vision Mom struggling to focus as she counted the remaining pills in that 500-count jar. I dutifully threw up the pills in the emergency room, just like I did my food at home.
I slept the first day or two. I didn't want to be awake, and thinking. On her shift, one of the night nurses stayed with me much longer than she had to during the wee hours. She rubbed my back and told me I was too young and pretty to be so sad.
After a few days, the hospital dispatched a psychiatrist to my room. He pulled a chair up next to my bed and slowly ran his index finger up and down the bed rail, asking me questions in a gentle voice. Our conversation drifted. I didn't have a vocabulary for my disease. After an hour, he said he wanted me to see him again after I got out of the hospital. I told Mom I didn't see the point. She didn't argue with me.
Later, Dr. Schmallenberg came. He wasn't my regular physician. He was golfing with Dad when I was rushed to the hospital. Dr. Schmallenberg sat on the edge of my bed while he studied my chart. He talked matter-of-factly about my body being slow in removing the toxins. My levels were troublesomely high, he said. I would have to stay several more days.
Mom and Dad agreed to keep my suicide attempt quiet. My boyfriend, bound for Air Force boot camp, never knew. But my attempt hurt Dad so much that he couldn't bear to visit me at New London Community Hospital for several days, until Mom gave him an ultimatum.
Help finally arrived via my high school guidance counselor. A bearded angel in plaid flannel shirts, he came every evening. He kept his chair against the wall at the foot of my bed, where rays of summer sunlight stretched just out of reach. I still didn't have the vocabulary, but he asked me better questions.
Every time I saw him step out of the counselor's office into the hallway between classes my senior year, our eyes met. I remembered that lingering summer sun outside my hospital window, coming to believe in the strong person he said I was. Another year went by, however, before I learned the name of what had nearly killed me.
Naming my monster helped me beat it in college, although it took my entire freshman year at the North Texas State University School of Music in Denton, Texas. I took one day at a time, first teaching myself to swim freestyle. I swam lap after lap until I was too tired to count them anymore. I went back home for summer break. Even though I swam in the city pool every day, I started to binge once a week or so. Terrified of a relapse, I would wait years to go home again.
Back in Denton the next fall, I swam in the morning and filled the rest of my day with my studies, rehearsals, and music practice. If I ate too much one day, I wouldn't torture myself to get rid of it. I told myself that my stomach, my throat, my teeth, my eyes, and my heart deserved a normal life, even if my head couldn't bear it.
Beating bulimia is a lot different than quitting drugs or alcohol. I still have to eat every day. It can't be all or nothing.
While in college, I eventually abandoned the piano for the euphonium, an instrument I'd started playing in high school so I could join the band. Even with its gorgeous sound, the euphonium had earned itself an odd place in the music world. Yet playing its characteristic parts—soaring countermelodies and sturdy inner harmonies—suited me. I practiced until my friend Dan, another euphonium student who worked as the building monitor, locked up at midnight. We walked home together, usually talking about music the whole way.
I followed my muse for nearly ten years, from Texas to New York and Japan, making several lifelong friends and performing wherever I could. During a fellowship in Tokyo, stories about me appeared in national music magazines. I didn't realize I had become a celebrity in Japan because I couldn't read the kanji. I was the first American to play in the rank and file of the Tokyo Kosei Wind Orchestra, the best group of its kind in the world, but I didn't know it until a longtime member of the group told me after the concert. As I turned in my music and packed up my instrument backstage, I basked in the glow as all the musicians exchanged a traditional, singsong farewell.
My friend Kaoru told me that this greeting rolled up "good job," "good night," and "congratulations" all in one. He also said it meant, more strictly translated, "I suppose you are Mr. Tired."
I wanted to stay in Japan with my creative friends, who staged concerts like an in-costume, all-euphonium rendition of West Side Story, and shamelessly sold tickets until the house was standing room only. But I had to go back. Within a year, I moved to California. An old college friend had become the new love in my life. The move also promised interesting career opportunities. Music was keeping me whole and happy.
Until one April afternoon.
"I'm calling about my pregnancy test," I told the nurse who answered the clinic phone.
"Could I have your record number, please?" she replied.
I read off the number.
"Your results were positive."
"Oh, okay." I realized how much I lacked rehearsal for this moment.
"You should call soon to schedule a prenatal appointment. You can discuss your options with the doctor at your first visit," she said.
I was afraid my fiancé, Mark, would be upset. Our wedding was still several weeks away. But he smiled this funny smile I'd never seen before, although by then, we'd dated on and off for five years, and been good friends even longer.
For several days we tried to talk about my pregnancy and couldn't. On one of the occasional Friday nights that Mark had off—the Sacramento Symphony concert had no tuba part that night—we stretched out over the bed, watching the late day sun through the shade screens and mulberry trees covered with bagworms, and we surrendered the idea that we were supposed to choose. We could make this work.
About ten weeks into my pregnancy, I made another phone call.
"Hi, Mom. It's me." I imagined my voice traveling east to Colorado, along telephone lines over two mountain ranges.
"I need your advice." I've become just as economical a speaker as Dad, I thought.
"First, I'm pregnant. But I'm also spotting."
"Oh my." I heard her take a breath. I wondered whether she was considering what she would say next. "Is it brown or bright red?"
"A little spotting isn't all that uncommon," she said. "You may be okay. But if you start bleeding, you'd better go in to see the doctor and get checked."
"Okay. I'm sorry to give you the news this way," I said.
"It's still happy news."
"It's just that when I miscarried, that's how it started."
She paused again. I had been sixteen and clearly remembered what happened to her.
"Or it may be nothing. Just stay off your feet for a while."
That evening, I lay curled up on top of towels that I'd set on the bathroom floor, cramping and bleeding. A doctor in the emergency room had sent me home a few hours earlier, telling me that there was nothing they could do. I had to wait it out. Each time I got up from the tile floor to sit on the toilet, a fresh rush of blood flowed and frightened me.
Although I was ambivalent about being pregnant, I still wanted to control my body. I tried to visualize making the cramping and bleeding stop, but I couldn't come up with anything. I tried talking to myself. I tried talking to the baby. I heard Mark talking to someone on the phone downstairs. It was probably Mom again. I couldn't hear his words, but I knew by Mark's tone that he'd surrendered.
Finally, I fell asleep on the bathroom floor. Mark carried me to bed. When I woke up the next morning, the symptoms subsided. By day's end, the cramping and bleeding stopped altogether.
A month later, we got married in the carefree ceremony we'd wanted, standing barefoot on a black sand beach as the sun went down over the big island of Hawaii. As spring rolled into summer, my calendar filled up with doctor appointments. I yielded some of my practice time to reading a few books about pregnancy and baby care. I most enjoyed Lennart Nilsson's books chronicling a baby's growth in golden photographs. In the early months, my baby fluttered like the prehistoric fish he resembled. I was six months along before my belly started to show. I found it easy to continue keeping fit by swimming in the small pool adjacent to our townhouse.
In the fall, I signed Mark and myself up for a birthing class. The moms-to-be turned in a daily record of meals and snacks each week, adding up the grams of protein to make sure we met our daily requirements.
I also applied for a new job as the part-time director of a small arts council, in neighboring El Dorado County. The council's board of directors held interviews the same night as our last birthing class. Just as well, I thought. Maybe the other moms-to-be would feel ready for their babies after our little graduation ceremony. But I was beginning to wonder whether I would ever feel ready.
As I set up the baby's things in the corner of our second bedroom, already filled with instruments, a filing cabinet stuffed with sheet music, and one wall lined with bookshelves, I tried to sort through my ambivalence. I wasn't worried about either of us being good and loving caregivers. But we worked an unconventional schedule. I couldn't see how to fit a baby into it. I had already canceled one overseas trip. I feared most that having a baby would make my world small again.
I got the arts council job, and drove the forty-minute commute to a Placerville office several times a week until the organization relocated to a tiny historic house inside Coloma's Gold Discovery Park, deep in the Sierra foothills. The art gallery took up most of the space inside the little house. A co-worker and I shared an ancient oak desk squeezed in the back and several metal storage shelves in the restroom.
Excerpted from See Sam Run by Peggy Heinkel-Wolfe. Copyright © 2008 Peggy Heinkel-Wolfe. Excerpted by permission of University of North Texas Press.
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Posted February 8, 2014
I went to school with Sam from 4th grade until graduation. I had never been around anyone quite like Sam growing up and not my place to judge a sweet soul like Sam. I am glad I got to look into Sam's life as a child and see what it was like for him growing up. I would definitely recommend this to someone struggling to see the bright side in this situation.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted September 8, 2008
A must read, not only for parents of autistic children, but for anyone involved with children who don't quite fit the mold. Throughout the book, Sam is Sam, facing the world with the cards he's been dealt with, while around him, his Mother 'The author', father,family,teachers,doctors,assorted specialists and experts engage in an elaborate dance of confusion,denial, despair,anger,avoidance,understanding and finally,acceptance. In telling Sam's story, the author takes us down the sometimes brutally honest path she and her husband trod in meeting the challenges facing parents of Autistic children, both personal and those posed by the educational and medical communities of the time 'the 80's and 90's'. We witness not only the encouraging changes in professional attitude, but also the diminishing regional differences uncovered by the family's East-West career movements, Sam in tow. The book has photos of Sam at various ages, and a 'Senior Scrapbook' article, written by Sam in 2005. This final chapter is by a confident,happy teenager who has a realistic grip on who he is, and of his own limitaions. A fitting testimony to his Mother's fight for her son. Also includes Autism resource pages.
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