Searching for Matt
By Dorothy Maillet
Beams of sunlight pour through the prism hanging in our living room window. My son watches with fascination as streams of light cast a rainbow across the polished oak floor. Matt smiles and follows the dancing rays and flickering flashes of color. His fingers stretch to touch each beam, soothing him within a circle of warmth. He is autistic. Through his eyes, the world is a web of details to detangle and manage.
Matt was missing. I could feel it in my gut. I rushed from the dining room through the front foyer to the living room desperate to spot him in his red Tasmanian devil T-shirt. The video was still on, but my 8-year-old son was not perched cross-legged in his usual style on the couch. Nor was he lying on the floor sideways, as often observed, with his head resting on his palm. I froze. The front door was ajar. I ran to the bay window, but Matt was nowhere in sight. I paused to take a deep breath, before checking every corner of the house.
Bounding up to the second floor, I felt a spurt of adrenaline as I searched all four rooms for my little boy. “The front door was open, I just know that he wandered out,” I screamed to my husband, Dan, whom I suspected had left the door unlocked. He had arrived home early from a client call that July afternoon in 2000. At that moment, I could’ve berated him for his carelessness. But, knowing how quickly Matt spurred trouble, I was hesitant to lose another second. Dan dropped the phone and spun into action.
The two of us headed in opposite directions scouring the neighborhood. I tried to envision the world through the eyes of an autistic child, the way Matt sees it. He often focuses on a desired object, like the mini-sports coupe or multi-colored soccer ball next door, heads straight for it, tripping over obstacles in his path.
I canvassed the backyards close to our home where Matt sometimes meandered. Even from a distance, it would be easy to recognize his sauntering gait. But there was no sign of him anywhere. If he wanted to go to the school playground, one block away, he’d have to cross the street. Although we live in a peaceful, park-like setting with towering oaks and sycamores our street becomes a busy raceway during rush hour. Would Matt amble across the street and get struck by a speeder?
********
Matt was born with hypotonia , or low-muscle tone, along with a left undescended testicle and a clubfoot that straightened out by his 1st birthday. The most junior member of our pediatric team, who is female, raised a concern that these characteristics could point to a syndrome. The two male senior pediatricians, however, just rolled their eyes, convinced that Matt was “normal” and would outgrow the hypotonia.
I remained skeptical of their opinion, as Matt failed to sit up by 4 months of age. Upon the advice of my sister-in-law, a nurse practitioner, I had Matt examined by a neurologist. He continued to miss milestones like “cruising” or moving from one piece of furniture to the next while learning to walk. Christie, his older sister, had reached that stage by 10 months. In August of 1993, when Matt was 13 months old, a blood test revealed that he had Prader-Willi syndrome. Only 1 out of 15,000 babies is born with this disorder, marked by floppiness at birth and an obsession with food usually appearing between ages 2 and 4.
The diagnosis was devastating. I didn’t scream and kick in walls, but the news seemed equivalent to gaining entry to a club to which I didn’t want to belong. This is all a big mistake, I thought. Certainly, they’d have to bend the rules for Matt to qualify for this club.
Still, I envisioned a productive life for Matt. Regardless of his handicaps, he didn’t seem any less of a child to me or to my husband. Though his inability to speak and walk hampered him early on, his smile and temperament won many friends. He mastered walking at 2 years, 8 months; but, by age 3, Matt could outdistance anyone running for a “Happy Meal” at McDonald’s. We were blessed again a few months later. At a family gathering, Matt sidled up to his sister, smiled and said softly, “Christie.” Christie, then 5 years old, grabbed his hand and circled the entire party room yelling, “Mom, Matt said my name!” The news, I remember, brought a hush to the exuberant crowd. Cousins and grandparents surrounded the boy with the blond curls anticipating, perhaps, his recitation of the Gettysburg Address. Matt, however, clammed up and didn’t utter another word until the next day. He soon added another 12 words to his repertoire, only to lose them within a month’s time. It was a double whammy. Not only did Matt have Prader-Willi, but also a classic case of autism.
Matt had been missing for more than fifteen minutes. I prayed to catch a glimpse of his red T-shirt in any direction. Could he have fallen down the steep embankment of the stream lining most yards on our block? I had watched the most sure-footed kids slip down the brush-entangled slope. At least it was well padded with leaves and moss, if Matt lost his balance.
I followed the road east towards the aqueduct tunnel near Broadway, pulling apart bushes looking for clues like a piece of clothing or familiar toy that Matt might’ve dropped. Something, anything that might steer me to his side.
********
The “A word,” as some parents call autism, hits hard at times. The summer that Matt turned 6 years old, our family toured some of the remote coastal towns of Prince Edward Island. One day at a playground, Dan and I were confronted by a young father whose eyebrows clashed in dark, scruffy tufts across his forehead.
“Your boy won’t even look at my son. Is he blind?”
The insensitivity of the remark made me cringe. I pulled Matt close to me.
“Your son shouldn’t take it personally,” I said, “Our boy is not blind, he’s autistic.”
The man looked bewildered. There was a lot I could tell him. I explained Matt’s difficulty to mix with other children and to make eye contact. Our son, I added, is wired differently but connects with those vibrating warmth and kindness. Now the man’s thick brow seemed to form a question mark. He nodded, glanced at Matt and myself, and walked away. I pitied the poor man and his ignorance. Still, the encounter left me with a sense of emptiness. I wondered if his words had hurt Matt.
********
The search drew me closer to the aqueduct tunnel, and only two doors away from a close neighborhood friend. Thirty minutes had passed, but I refused to lose hope. I walked up to my friend’s home, my hand gripping her door knocker as if it were a lifeline. After two raps, Gigi appeared.
“Gigi!” I cried, “Help me! Matt’s lost! He wandered out of the house half an hour ago.”
“We’re with you!” she said, grabbing her 8-year-old son. In pursuit of other young recruits, she rang doorbell after doorbell. Within minutes, she had rounded up a search squad on bikes.
Dan, meanwhile, had called the police. Soon the neighborhood was a flurry of cyclists, patrol cars and fire rescue workers clad in oversized rubber pants with thick suspenders.
I flashed a school photo of Matt at passers-by. It highlighted his cornsilk curls, pug nose and blue almond-shaped eyes. But there were key elements to Matt that no photo could capture. His fearlessness and vulnerability went deeper than the lens could ever penetrate. Though his self-preservation was strong, Matt was simply not programmed to detect danger or shield himself from harm.
As more time passed, I used my own protective devices to block out negative thoughts. I longed to see Matt safe and unscathed, and out of the public eye. I still worried that the town would cast me as a negligent, irresponsible mother. “But it’s my first offense,” I pleaded to myself.
He had been missing now for 45 minutes. News of his disappearance spread. Village people and neighbors I’d never met offered help and support. It was the first time I’d felt a true sense of community in Irvington. At least 30 neighbors and rescue workers were on the case that summer afternoon. Surely, Matt would be found with so many searchers on his trail. I looked at my watch, clutching his photo in my hand. I imagined his stocky frame pushing past bushes and shrubs, and his long eyelashes laced with tears.
I picked up Christie, then 10 years old, from a nearby camp in Dobbs Ferry. She shuddered at the news, but didn’t seem to feel the full impact until seeing squad cars parked outside our home.
“Are you sure he’s not in the house?” she asked, recalling that Matt was found in a closet last spring rummaging through a box of books. “I hope that he’s O.K.”
I assured Christie that we had covered Matt’s top hideaways, and squeezed her as she expressed concern. Then, the two of us combed the woods between homes and the school playground. I remembered joy in Matt’s eyes the first time he jumped on the bouncing rubber bridge.
********
During Matt’s grade school years, I often felt more like his guardian angel than his mother. He was my child with nine lives having many near brushes with death. The latest one occurred right before his 7th birthday. I had stepped away to retrieve some clean laundry from the basement. Reentering the kitchen, I glanced out at the adjoining deck raised 15 feet above our yard, and spotted Matt clinging to the outside railing’s edge. I panicked, but resisted the urge to cry out, afraid that he’d go to pieces and lose his grip. I dropped the laundry, and went into high gear.
“Matt, I’ll help you. Don’t be scared,” I said, as calmly as I could muster.
Somehow, as if with divine strength, I lifted his shoulders over the side of the deck back to safety. His hands were red and sweaty, but his expression unfazed. A moment later, tears streamed from Matt’s teal-blue eyes as we hugged.
The search wore on. Christie and I moved from yard to yard, poking in and around thickets on Woodbine Street. Knowing how Matt loved to go barefoot, I thought it more likely to find one or both of his Reebok sneakers than a piece of his red shirt. However, a full hour passed yielding no clues. This was not like Matt to completely vanish. My stomach twisted in knots.
“I never thought that we’d lose him so early on,” I lamented, as each minute lost diminished my hopes. I sensed that Christie still waited for Matt to pop out of hiding.
She walked with long, confident strides. Her seemingly unshaken spirit drove me on.
********
A squad car sat in our driveway. An officer broke a huddle with a team of fire rescuers, eyeing Christie and me as we approached.
“We’d like permission to search your home now,” said the tall, ruddy-faced officer. Members of the rescue crew nodded in support.
It suddenly hit me that we were suspect in Matt’s disappearance. The back of my neck bristled with rage. Could they possibly believe that we had hidden Matt, or worse, harmed our handicapped son? Fury in my veins made my fingers tremble.
Just then, the next-door –neighbor pulled into her driveway, and rushed our way amidst a growing crowd. Bands of policemen, EMS workers, cyclists and onlookers hovered around the mistaken “crime” scene.
“What’s all this? Are you all right? My God, you’re all shaky,” she said, gripping my shoulders, so I could stable myself.
“Matt’s been missing almost two hours! The whole town’s out looking for him!”
I could feel the eyes of the lanky officer studying me. He was trying, obviously, to glean clues from our conversation and body language that might reveal Matt’s whereabouts.
My neighbor glanced over at her front door. All at once, she gasped, noticing that the door was open.
“What is going on?”
She ran back to investigate. It was not like her to leave the house so accessible and unprotected.
“Dodie, come here!” There was a lilt in her voice.
I raced over. There was Matt lounging on her sofa, chomping on a fistful of crackers.
“He looks mad that the tv’s not on – guess he couldn’t find the remote!” she remarked, easing some of the tension.
I laughed, as tears streamed down my cheeks, reliving the pain of the past two hours. I grabbed Matt, hugging the breath out of him.
Dorothy Maillet lives in Irvington, NY with her son, Matt (now 14 years old), daughter, Christie (16 years old) and husband, Dan. Always planning her next adventure, Dorothy enjoys gathering travel essay material with her family in such destinations as England, Wales, Ireland, Finland, Italy and Hawaii. In addition to writing, she also has a penchant for tennis and mountain biking.
Dorothy's writing credits include a weekly column in a local newspaper, as well as features published in the LifeStyles and Education sections of the Gannett Newspapers. She was also an Editor at TV Guide Magazine and an editorial assistant at HarperCollins Children's Books. Dorothy holds a BA degree in English literature from Ohio Wesleyan University. She is currently a freelance writer and member of the Hudson Valley Writers' Center in Sleepy Hollow, NY.
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