Medium 9781574412444

See Sam Run

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Thousands of children are diagnosed with autism each year, with a rate of occurrence of 1 in 150 births, compared to 5 per 10,000 just two decades ago. Of course, behind the numbers, the debate, and the speculation, individual families are struggling to live with autism every day. This is the story of one such family raising a young boy with autism. In See Sam Run, 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. "See Sam Run is well written and poignant as well as emotionally satisfying for the reader. The author's narrative voice is strong, intelligent and authentic. Her story is one that is important to get out."--Dianne Aprile, Spalding University

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Chapter One: Year One

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YEAR

ONE

The Beginning

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

 

1. The Beginning

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YEAR

ONE

The Beginning

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

 

2. 6:12 a.m., 6 lbs. 15 oz.

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night into the rain and fog for ice cream and pickles. Besides, pickles are old food.

6:12 a.m., 6 lbs. 15 oz.

Mark covered his nose with his hand and described for me what he saw as Sam was coming out.

“You know, when his head was . . . well, the doctor told the nurse that he was coming out sunny-side up. So I looked down. Even though I couldn’t see Sam’s nose yet, his eyes were wide open, and they were going from side to side. Like this.”

With his hand, he flattened his own nose right below the bridge, at the same spot where he’d stabbed himself with a pencil as a second grader. The injury left a little blue pencil dot that never faded. He moved his dark blue eyes rapidly from one side to the other. I smiled.

“It was amazing. He was so curious already. You should’ve seen him,” he finished breathlessly.

I was too busy pushing to get in on any of that fun, I thought. Where did Mark get this new burst of energy? I was exhausted. Sam was fine, but the nurses had whisked him away soon after he was born. I was so tired that I didn’t care.

 

3. Grandparents

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The room was lined with small honey-colored tiles with a sitting place built into the wall. I turned on the faucet and watched the water bubble and swirl down the drain in the middle of the floor. The shower reminded me of a public bath in Japan that I’d had all to myself, since everyone else was soaking in the renowned, spring-fed baths outside. There, the amber tiles of the indoor bath gently descended under the water like a beach face. Steam rose and clung to the tiled walls and ceiling. Mozart piano sonatas unfolded over the sound system as a warm light glowed from a sculpture in the middle of the pool.

Pay attention, I told myself. Life is going to be different now. I took the massaging shower head from its holder, washing the sweat from my hair and the trauma from my skin. I dried off and pulled on a fresh gown. I went to get Sam from the nursery.

Sam and I would sleep together as often as I could claim him from the nursery. He seemed agitated, arching his back when I held him. Seeing that, one nurse suggested keeping him swaddled inside his receiving blanket as much as possible to help him feel safe. If I put him on my chest, the sound of my heartbeat calmed him, too.

 

4. First Doctor Visit

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First Doctor Visit

“Your son has gained a pound and a half since he was born,” the clinic pediatrician said. “That’s pretty good. We usually look for babies to recover their birth weight by their two-week checkup. Are you breastfeeding?”

“We are,” I replied.

The nurse asked me to remove Sam’s diaper for his weighin. As I answered the doctor’s questions, I was still blotting pee from the front of my favorite peach pearl-cotton sweater using one of the extra cloth diapers I had packed in Sam’s diaper bag. The doctor didn’t seem to notice. I suppose he’d seen plenty of peed-on clothes. I would rather Sam had wet my blue jeans.

“You seem to be doing all right. Do you have any questions?” he asked.

“We’re all right,” I lied. “I don’t have any questions. Wait.

Yes I do. What do I do when I’m ready to go back to work or need to go out for a few hours?”

I felt panic rise inside my chest. Sam had one bottle in the hospital. The nurses filled it with water so I could get some sleep, but Sam spit it up. So the nurses felt obliged to wake me up anyway. Once, Mark warmed up a formula bottle to take a turn feeding Sam, but he threw that milk up, too. Would I ever get any rest?

 

5. First Steps

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didn’t even realize that we’d both forgotten until after he went to bed. I felt guilty. But I didn’t want to wake him up. Midmorning the next day, I brought Sam to my bedroom to lie down next to me. He latched on, took a swallow, made a face.

He let go, rolled over and looked away.

I was bewildered. Was this how all babies stopped nursing?

Or did my milk go sour? I sensed that Sam would never ask for my breast again. I was right. At ten months old, he stopped nursing. I bound myself and took hot showers for the next few days as my right breast shrunk to meet my left.

Sam was now too old to be swaddled, too big for the windup swing. Mark and I had no more ideas to calm him when he was upset. Some nights, we gave up, buckled him in his car seat and drove for miles, hoping he would fall asleep to the gentle drone of our tires pacing the well-groomed California freeways.

First Steps

As Sam grew from a baby to a toddler, he met enough developmental milestones that he stayed off the pediatrician’s radar of concern. At six months, Sam sat up. At seven months, he crawled. At one year, he walked on his own. I marked these firsts by putting a sticker on his “Baby’s First Year” calendar or making short entries in his baby book. Sam preferred walking to crawling, so from about eight months on, Sam would whine and gesture to Mark or me to lend him our fingers to better balance himself. We bent over and walked with Sam until our backs ached.

 

6. First Friends

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First Friends

Sam slept until eight or nine in the morning, which gave me one or two precious hours to clean the house or get some arts council work done before caring for him consumed the rest of my day. I had to help him dress and make his breakfast. He could undress himself better than he could dress himself. He could feed himself, but he ignored his spoon and fork. Still, he ate a healthy breakfast—whole-grain pancakes or waffles, fresh berries, scrambled eggs, and smoothies.

For juice and smoothies, I bought a bottle-to-cup system I had seen in Japan. My mentor’s daughter, Akiko, was a toddler. I had enjoyed watching Akiko grow and change. Even though Akiko wasn’t quite two years old, Toru and Chieko had encouraged her to pick up grains of rice with chopsticks.

Akiko also liked to play with me. Occasionally, I understood her Japanese better than that of the adults, but she couldn’t pronounce my name. As I tried to learn Japanese myself, I figured out that my name didn’t fit in the natural building blocks of the Japanese alphabet. Akiko adapted by taking the sound of the first letter, P, and adding the honorary suffix, san, to be polite. My name was Pe-san when we played. Akiko’s favorite cup had been a short, sturdy one with white handles on both sides. Chieko showed me the different options for its top— with a quick twist, the cup changed from a bottle-style nipple to a sipper, to a straw, to a covered top with a small hole to slow down spills.

 

7. First Words

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“Okay, thanks,” I called back.

Sam didn’t notice the smoke or the bees. He just went on.

At the end of Y Street, we’d walk past a dusty Chevy

Chevette parked on the other side. The tires on the little blue car were flat and it never moved from its spot. One day, as we walked by the car, a twentysomething man came out of the house and down the porch carrying a baseball bat. With a big swing, he smashed the front windshield. He looked up and seemed surprised to see me and Sam.

“It’s okay,” he called. “It doesn’t run anymore.” My own startled look softened and I smiled. Sometimes, I’d like to put a baseball bat through a car window, I thought. My career’s going nowhere; I’m thirty and pregnant—accidentally, again; and I can’t keep up with the toddler I have.

Sam turned right for a short sprint on Miller Street and right again for the final stretch down Sherman Way. Cutting across our tiny front lawn of Bermuda grass lined with Shasta daisies that were always flopped over, Sam rounded the fragrant, white star jasmine vine I’d planted. He jumped up the stairs to the front door and let himself in. The welcome end of another chase-Sam-around-the-block episode for me. But for

 

Chapter Two: Year Two

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1. Favorite Toys

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line of yellow beads up and down the thick, cherry-red wire mounted on a sturdy pine base. She sat next to him and began to narrate his play in the same quiet, deliberate way she had first talked with me on the phone. I had seen that kind of toy only a few times before. Even as an adult, I found moving the beads felt soothing and purposeful.

“Look, Sam, you’re making those yellow beads go up and down. You’re making them go up. Now you’re letting them fall down. That’s fun, Sam,” Nancy said.

She turned to me.

“Just describe what he’s doing. He’ll make the connections between the words you’re using and what they’re for. This toy is good for eye-hand coordination and visual tracking—the kind of motor skills he will need to learn to read.”

I began to wonder whether I was Sam’s problem. Of course,

Sam wasn’t talking because I wasn’t a chatty mother. My quiet love wasn’t enough. I should be walking up and down the aisles of the grocery store going on about red apples, and green peas, and orange oranges, I thought. That must be why he doesn’t know his colors. I didn’t coo. I didn’t baby talk. I didn’t refer to myself in the third person.

 

2. Preschool Memories

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cooing or coaxing helped him to sleep. Finally, exhausted, I stood up. Sam was crying. So was I.

“Today is gone. Today was fun,” I said with tears rolling down my cheeks. His face relaxed. His eyes looked straight into mine. Although I was almost overwhelmed by the unfamiliar feeling of his full gaze, I continued, wiping my cheeks with my shirt. “Tomorrow is another one.”

He smiled as I straightened out his comforter around him and let my voice decrescendo. “Every day, from here to there, . . .”

“. . . funny things are everywhere,” he finished.

Preschool Memories

Sam’s third birthday loomed, which meant we had to say goodbye to Nancy and her home visits. The county ran the infant development programs, but once children turned three years old,

Sacramento City Unified School District assumed responsibility.

Their special education staff insisted that Sam be evaluated again, even though the county had evaluated him only six months earlier. They wouldn’t test Sam in the comfort of our living room, either. Instead, we were sequestered in a small room at an old elementary school near Goethe Park. I was grateful for winter sunshine coming through the short, wide window at the far end of the room. Was this once someone’s office, and had they enjoyed looking up from their desk at the leaves on the trees outside? In Sacramento, leaves clung to trees through fall and winter. In Wisconsin, maple, oak, and elm trees turned blazing red and orange before the leaves piled high on the ground and left tree skeletons behind.

 

3. Playmates

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Playmates

Sam’s preschool room was pleasant enough. One wall was lined with windows. The teacher, Mrs. Vargas, had a computer in the corner with a few games that taught the alphabet, math concepts, and counting. She seldom let Sam or the other eight children, all boys, use the computer. I could tell that Nick had

Down’s syndrome and Max had cerebral palsy. I couldn’t tell what the other children’s disabilities were. I didn’t ask because

I’d recently learned another one of the California Rules of Special Education Order: We Don’t Label A Child. They put the policy in place, ostensibly, because labels impose artificial limits upon children.

Mrs. Vargas was excited about the new, whole-language method of readying children for reading. She read books like

Brown Bear, Brown Bear, What Do You See? to the boys each day as they sat on carpet squares in a circle around her. She bought editions with pages as big as movie posters, and pointed to the giant-print words as she read them. Some of the books dwarfed Russell and John, the smallest boys in the class. Maybe they were preemies, I thought.

 

4. Height and Weight

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Sam blew bubbles, but had trouble with the cards. She showed him a card with a picture of a hamburger on it that day.

“What’s this, Sam?” she asked.

He walked around the speech therapist, looked at the card, and said nothing.

“What’s this, Sam?” she repeated.

He started wandering away.

“Can you tell me what this is, Sam?” she repeated.

“I’m sorry,” I whispered to her, pointing at the picture.

“But he’s never seen one of those before, let alone eaten one. I don’t think he even knows the word hamburger.”

“Oh, well,” she said, putting the card down. “We try to get him to learn new words, too, not just say the words he knows.”

Eventually, I learned all of the Rules by violating them one by one.

Height and Weight

“Hi, Mom. It’s me,” I telephoned.

“Hi, you,” she replied. Sometimes hearing her voice was like stepping into a steaming, hot bath. My tension and worries evaporated. I was so glad that Mom and Dad returned early from Saudi Arabia. After Iraq invaded Kuwait in late 1990,

Western newspapers claimed World War III was on the horizon. Chris and I, and our other sisters, Karen and Teresa, begged my parents to come home. Mom and Dad didn’t understand our concerns. I was surprised Karen couldn’t convince them that Saudi state-owned media was downplaying the invasion. But, within days of our panicked, trans-Atlantic phone calls, hundreds of F-16s flew in all night long over the compound where Mom and Dad lived. The next morning, Mom

 

5. Brothers, Sisters, Aunts, Uncles

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Brothers, Sisters, Aunts, Uncles

My arts council job was part-time, but the organization had grown and I knew the group needed someone to devote fulltime to its daily business. I’d encouraged patrons to call me at the gallery. But when I wasn’t there, our home phone rang with business on days when I tended to grants and other paperwork to avoid interruptions at the gallery. The phone rang with business even on my days off, but I took them anyway.

Long phone calls were the best time to make bubbles. I held the cordless phone to my ear with my right shoulder and mixed up a super-bubble solution of diluted liquid dish detergent and a touch of corn syrup. The recipe gave the bubbles holding power.

I poured the solution an inch deep into my widest fry pan.

Sam followed me outside into the backyard with his big, blue bubble-inside-a-bubble-making wand we got at Fowler’s Toys.

As I talked on the phone, I dipped and waved. Sam squealed with delight as he chased bubbles around the yard. He giggled when they popped in the almond tree. He stood, fascinated, when the bubbles came to rest on the bottlebrush bush and refused to pop. Making the huge bubbles didn’t solve the council’s omnipresent money troubles, but it kept me from becoming stressed over them.

 

Chapter Three: Year Three

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YEAR

THREE

Summer Vacations

MARK AND I VACILLATED OVER WHETHER we could afford to spend two long semesters in Rochester. Summer school seemed feasible. Either way, we’d need more money in the bank. I applied to the state arts agency and a nonprofit arts advocacy group. I made some calls and waited to see where my job hunt would take me.

Juggling a baby and a busy preschooler wasn’t as taxing as

I feared. Michael was a curious baby. He didn’t cry the way

Sam did as an infant. He slept easily, and for long stretches at a time. With his hearty appetite, he grew fast. He nursed on both sides, making breastfeeding easy and comfortable. Such a thing to find comfort in, I thought.

Michael took his morning nap while Sam was in school. I relished the few quiet hours to myself. I cleaned the house and finished some long-neglected sewing and gardening projects.

Our backyard almost looked good enough to be featured in a gardening magazine, which encouraged us to spend even more time outside with the boys.

 

1. Summer Vacations

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YEAR

THREE

Summer Vacations

MARK AND I VACILLATED OVER WHETHER we could afford to spend two long semesters in Rochester. Summer school seemed feasible. Either way, we’d need more money in the bank. I applied to the state arts agency and a nonprofit arts advocacy group. I made some calls and waited to see where my job hunt would take me.

Juggling a baby and a busy preschooler wasn’t as taxing as

I feared. Michael was a curious baby. He didn’t cry the way

Sam did as an infant. He slept easily, and for long stretches at a time. With his hearty appetite, he grew fast. He nursed on both sides, making breastfeeding easy and comfortable. Such a thing to find comfort in, I thought.

Michael took his morning nap while Sam was in school. I relished the few quiet hours to myself. I cleaned the house and finished some long-neglected sewing and gardening projects.

Our backyard almost looked good enough to be featured in a gardening magazine, which encouraged us to spend even more time outside with the boys.

 

2. Potty Training

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Potty Training

I liked Ken and Jennifer, co-workers at my new job at the California Confederation of the Arts. They were good-hearted people, dedicated to the group’s mission of promoting the arts.

Both Ken, my boss, and Susan, the executive director, prided themselves on their family-friendly office policies. They encouraged Mark to bring Michael to the office to nurse during my first few weeks on the job. My body needed to adjust to routine feedings, instead of breastfeeding on demand. Within a month,

Michael and I lined up with morning, noon and evenings feedings and Mark didn’t have to bring him anymore. Instead, I bicycled home at noon to share lunch with Mark and Sam, and nurse Michael.

Before moving to Texas, the Confederation’s outgoing office manager, Blair, trained me to do her job. Blair motored around the office in her wheelchair. I wondered if Ken built the ramp from the parking lot to the back door for her, since the front door emptied onto the sidewalk on P Street, near the capitol. Blair told me how, as a teenager, she was paralyzed from the waist down after an illness. She still had enough feeling in her legs that she had hope she could walk again. If she lived with her family, she would have more support to build her strength. Later, Jennifer told me that she doubted Blair’s ambition. Jennifer thought the push to walk again was coming from Blair’s family. I listened to Jennifer’s doubts and began to wonder, if it takes all the energy you have to walk and you have none left for your other daily tasks, then what have you accomplished?

 

3. A New Home!

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studied the old chrome fixtures with their calcified buildup around the joints. When we first moved in, I remembered how the buildup on the old glass shower doors was so bad that we junked the doors to hang cheery, pink shower curtains instead.

A brown plastic basket of bath toys sat in the back of the dry tub. One set of toys was the three fat men of the Mother Goose rhyme that floated merrily, but in boats that looked like a green turtle, red boat, and blue pitcher. There was a faded, red-andyellow plastic watering can and several nesting cups, too.

Sam knew how to push the cups, upside down, straight to the bottom of the tub to release big, noisy bubbles. That always made Michael giggle, though it was clear that making Michael giggle was not Sam’s prime motivation for making bubbles.

There were also windup toys that swam. Nancy encouraged us to buy the windup toys because they helped develop Sam’s dexterity and taught him about cause and effect.

I smiled, thinking about how much Sam enjoyed bath time.

 

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