Stacy Chase lives in St. Paul, Minnesota with her husband and two children. She volunteers as an advocate for families enrolled in early intervention services for Autism Spectrum Disorders.
I pull up to the park, and Ethan immediately bolts from the car to the playground. Dragon slides and castle bridges lure us in with a promise of make believe, but I am done pretending. Nearly a head taller than the others gathered here, my six-year old with autism looks out of place. Across the street is a football field filled with clusters of boys closer to Ethan’s age. They organize and carry out elaborate plays while their mothers cheer from the sidelines. The referee blows his whistle, and I turn my attention back to my son. Ethan taps on the metal posts of the play structure. Ping. Ping. Ping. I watch as he escapes into the sound, and the rest of the world with all it has to offer slips away. His large, dark eyes fix upon an elusive, powerful image only he can conjure.
“Ethan, climb the slide,” I cheerfully coach. He rises tentatively as if it had not occurred to him that the slide was intended for any purpose other than this soothing, repetitive tap, tap, tap. He takes in the whole structure, realizes its possibilities, and cooperates happily. I am practiced as other autism moms are, always beckoning, always coaching him to engage in activities that appear productive, seemingly “normal”. He swiftly ascends the ladder to the crowded platform, and I coax him to move through the maze of children to the entry of the slide and down. Should he linger, he may tap, tap, tap an idling child, setting off the alarm of another mother. He hurls himself down the slide and runs across the wood chips to the whirly-gigs. I chase behind. Here, Ethan does something quite progressive. He waits in the line of children. When it is his turn, he reaches up to the bar and the other dangling children are propelled around. Their little legs splay outwards like a pinwheel. They laugh heartily, and I join in, strangely proud of this precedent. Ethan and his counterweights repeat these revolutions a few times before he is drawn away from the game to the metal posts again. Ping. Ping. Ping. It isn’t until Ethan begins his melodic chants to accompany the tapping that the other boys suspect something is amiss with their new playmate. They wander away.
These other boys amaze me. They run in packs, speaking full, coherent sentences to each other. Their mothers gather on the far edges of the playground or in the parking lot, chatting to each other about things I can only imagine—Pilates class, crab cake recipes, soil acidity for successful hydrangeas. Their little boys seek me out, the sole adult on the playground, to relay the stranded trolley bar from the center of the frame to the platform or to give them a push on the swings. They reward me with stories of their playground adventures, direct eye contact and, “I got a big boy bike for my birthday!”
“Oh, wow!” I answer as I try to catch up to my son who is wandering away. “Ethan, let’s swing.”
“Swing, swing,” he echoes. The tiny talkers pursue me.
“We’re getting a new baby soon. She is going to be a girl,” one says. How did these other boys achieve such linguistic sophistication in their four short years on the planet? I glance over at their mothers for answers, but they are absorbed in their conversations, oblivious to the miracles swirling around me in their denim 4Ts.
* * * *
Years ago, I mingled among similar mothers at the preschool parent workshops. We all arrived in minivans, toddlers and preschoolers in tow, anxious for a little grown-up conversation and respite. The classes began with a few rounds of Mommy-and-Me games and songs. Next, the cheerful teachers herded our children away from the circle with the promise of snacks. The other children protested with cries when their mothers slipped away from them to the sanctuary of the conference room across the hall. Some mothers noticed the difference as Ethan turned away from me, without protest, bribed by the relative stranger with a jug of apple juice and plate of goldfish crackers. “I have to pee with the bathroom door open or Hunter throws a tantrum. You’re so lucky you can just walk away,” one mom said as she pried her wailing son off her leg.
Once in the conference room, we eased into our chairs and passed the coffee and muffins around the circle. Before the speaker began her presentation on the latest child development theory, we chatted about the challenges of raising our little ones. The disparities overwhelmed me. While the other moms complained of wiping the fingerprints from their new stainless steel refrigerator or their painter arriving with daisy yellow instead of sunshine yellow for the play room, I longed to ask why my son had stopped calling me “Mommy,” compulsively lined up his trucks on the carpet, and rarely slept a full night. The mothers tackled their questions with the seriousness of a world peace summit. After a few weeks, I could no longer mask my resentment with commiserating looks. Eventually, the group would grow quiet when I entered the room.
As Ethan’s delays grew more alarming, we increased therapies and interventions. In these sanitized, clinical arenas, I met other moms of children with disabilities. The waiting room discussions were dominated by intense yet optimistic chatter of groundbreaking research and conference information. Have you read Greenspan’s latest work? Fascinating. We compared our children’s grueling schedules of ABA, cranial sacral, play, and auditory integration therapies, vitamin supplementation, B12 injections and the gluten-free, casein-free diet. Surely these efforts would loosen the hold autism had on our children. However, I soon envied these mothers. Their children steadily climbed the developmental ladder while Ethan loitered in the deep trench of autism, comfortable in his solitude. I wondered how their speech sessions were working magic on their children’s communication skills while my son remained quiet. The teaching methods were the same, but the weeks and months passed with their children’s outcomes far different from ours. The speech therapists summed up their children’s sessions with, “Her conversational skills are nearly age-appropriate. She is ready to move on.” They mostly spoke to their clipboards when they informed me, “Ethan just doesn’t talk. I don’t think we can justify his sessions to the insurance company anymore.” I had nothing left to say to these mothers but “Congratulations”.
I shamefully admit, at my lowest point, I even envied the mothers of those dangerously sick babies in the ICU. These were the families who deserved a special announcement at the end of Sunday’s mass. “One of our own was just diagnosed with a rare, congenital heart defect.” People gasped, bowed their heads in prayer, and signed up to deliver meals. Some babysat older siblings so the frazzled, sleep-deprived parents could take a walk or go out to dinner. I envied these distraught parents because they were understood and had reason to be hopeful. A skilled surgeon would repair their child’s heart, and the grateful parents would thank all the supportive people.
My supporters, on the other hand, were abandoning me as quickly as autism was taking over my little boy. Unsure of how to react, they didn’t. I fought to keep some semblance of normalcy in our lives. We dressed and acted the part of proper dinner guests with a carefully chosen bottle of Merlot for the hostess. We welcomed the opportunity to mix Ethan with the other guests’ children, hoping to trigger a new motivation for him to connect. While our hosts chatted on about the contractor they hired for their remodel or their latest landscape project, I teetered in my chair, straining to hear any words coming from my son in the other room. Inevitably, I drifted away from the adults to observe Ethan among the other children. He was oblivious to their games and conversations, preferring to lie with his cheek on the carpet and open and close the door of the dollhouse over and over again. I pushed a doll through the door and forced him to work around the intruder. In the distance, I could hear the lively chatter and clink of glasses while I remained in the playroom, keeping Ethan engaged.
Weekly lunches of chicken salad and chardonnay at Mary Ann’s house were popular with the neighborhood moms. They all gathered after dropping their kids at the local church preschools while I drove to the special education center at the south end of the county. A teacher would take Ethan by the hand and lead him down a hall to his classroom so I could slip into the dark closet with a one-way mirror. In the darkness, next to the custodian’s mop and bucket, I observed Ethan. Teachers coaxed and prodded, offered rewards, and seemed resigned when he couldn’t understand. When the demands were too much for him, he simply gazed off in the distance to that elusive place I longed to visit. A safe haven I could not provide. By the time I pulled myself away from the glass, my mascara had muddied my face and I no longer cared to race to Mary Ann’s to hear the details of someone’s recent trip to Disney World.
I began to avoid all situations in which we could be compared, but the reminders still seeped into our home. Articles appeared in the paper taunting me with tales of kids with autism making miraculous recoveries. Was I was failing my son? Overwhelmed by fear and guilt for mourning such a lovely, innocent boy, I slept very little, worried excessively, and rapidly lost ten pounds. My weight loss wasn’t the kind postpartum moms might envy. Mine was sickly, like a scrawny heroine addict just out of recovery.
I made an appointment to talk with a counselor who connected to my logical side with reasonable statements. “You need to refill your cup or you will have nothing to give your family.” Or the familiar, “You need to secure your own oxygen mask before assisting others.” She was 25-ish, well rested, and had toned abs that revealed the obvious. She didn’t have children, let alone one with autism.
Ready to leave her office and never return, I explained, “Imagine you are madly in love for the first time. You bring this incredible being home to meet your family and friends. After dinner, they corner you in the kitchen and tell you they just don’t understand the attraction.”
“I could have a doctor write you a prescription. Just allow enough time for the Zoloft to reach therapeutic levels before you judge its effectiveness,” she said.
I felt guilty, even foolish, for focusing on myself when the requirements of my child were so great. Conventional means of communication were still developing for Ethan, so we had to rely on intuitive means. This required hours a day of simply following his lead, coaxing him to grow in directions that were uncomfortable or unnatural for him. It was effortless for Ethan to scale the kitchen appliances and pick the locked cabinet to get a snack, but painstaking to elicit a single, clear, “cookie” from his lips. Hell, I would have accepted a syllable or pointed gaze. I placed his favorite things out of reach, then shaped his fingers into a crude point and rewarded him with a toy and praise.
I needed to teach Ethan within repetitive, patterned routines. I started our days with walks around our property boundaries. Gripping his hand, we would run, run, run, stop!when we hit the property line, teaching Ethan his boundaries so he would not run into the street or wander away. To encourage speech, I loaded my pockets with pennies, and we walked to the city fountain. He loved the ripple effects of the pennies in the water and jumped up and down, “penny, penny!” I withheld these valuable pieces and asked, “Do you want a penny? Yes,” until he imitated the heavily emphasized “yes.” Eighty-five cents later, he could answer, “yes” on his own. But these hard-won skills often played peek-a-boo with us, present one day, hidden the next. When this occurred, we returned to the fountains. We walked the yard’s perimeter again, hand in hand.
Ethan and I dwelled in this undiluted essence of mother and child for years. I provided food, comfort, engagement, and play, coaxing sleep to come at the end of each exhausting day. I eventually found peace in these routines. Over time, I traded in the unrealistic fantasy of his autism disappearing to reveal a fully articulate, social boy. I instead adopted the fantasy of eagerly rolling up my sleeve and receiving a shot that could give me autism for a day. I wanted to understand why Ethan jumped joyfully and waved his arms like a conductor at the sight and sound of a rushing waterfall but covered his ears and cried at the sight and sound of a trickling kitchen tap. Why did he covet and stash empty shampoo bottles under his bed? How could he recite full passages from his favorite books but not articulate he was sick, cold, hungry, or in pain—primal needs a mother needs to know to remedy?
I did not exist alone in my efforts to teach Ethan. My husband, Pete, did all the heavy lifting that I lacked the energy or will to support. He worked the grinding business schedule to pay for Ethan’s therapies. When sleep and awake cycles needed to be regulated, Pete and Ethan hiked and swam, burning the extra energy so Ethan cracked and popped like a campfire instead of raged and burned out of control like a three alarm fire. We enlisted energetic therapists to take over for us, allowing us some time to recharge. Most of these young women were fresh out of college and eager to prove their mettle. For the first few months, I participated in every session, perched in the corner scribbling notes and apologizing for his protests and slaps. “Stop apologizing. We have seen it all before and this is nothing,” one reported. These words startled me. Were there really other children like Ethan? Children in the minority of the minority? Not just with autism, but with severe autism? Children who baffled the special educators, the speech therapists, the medical professionals, leaving us to forge our own plan to help him ourselves? Was I not as alone as I thought?
It seemed that as soon as I understood the possibility that I was not alone, mothers of children like Ethan began dropping into my life like paratroopers on a classified rescue mission. These secret agents recognized the telltale signs of autism in my son and used code words to engage me, sniff me out as one of them. “My son has a tough time transitioning, too,” one said when Ethan threw a tantrum on the grocery store floor. Another sidled up to me quite covertly at the swimming pool to comment on Ethan’s fascination with water as, “intense, like my son’s fascination with trains.” Yet another glanced over her shoulder to make sure we were out of earshot of the other mothers and remarked on Ethan’s jumping and crashing on the playground equipment, “He knows how to meet his sensory needs, that’s good.” These new, mysterious women became my instant comrades, filling the spaces once occupied by women so foreign to me now that I would perhaps not recognize their voices should they ever call again.
Life became grounded in the simple, joyful tasks of playing toy trains and hide-and-seek, causing the other world and all its demands to fall away. I recognized that these are things all children require of their parents: one-on-one attention, the give and take of simple play. We, as parents of children with special needs, simply linger in these phases longer. Sometimes, we stall or even break down and wait for help to arrive. I always knew Ethan was being the best he could be. It took me a long time in exile to understand that I, too, was doing the best I could.
* * * * *
As the tiny talkers on the playground circle me again and ask, “Why does such a big boy need help on the swings?” I answer gently, but loud enough for the peripheral mothers to hear me, “Ethan has autism, which makes lots of things very difficult for him.” One of the mothers shifts her attention away from her book and responds to my invitation. As she approaches us with a strained smile, I recognize a familiar look in her eyes, one that suggests a desire to take in the whole structure and understand the enormity of it all. I catch sight of the cover of her book. It is one of the same references on my bookshelf reserved for autism, the shelf that sags in the middle from the weight of all the volumes researched for answers. She looks back to the edge of the playground and her sleeping toddler in the stroller. He slumbers in the shade of an oak, not with a blanket or teddy bear, but with his hands tightly clutching a box of fabric softener. I understand the significance, and my heart aches for her.
I introduce myself and Ethan. He hums in her direction but quickly returns to pushing his feet against the ground, trying to swing without my immediate assistance. Her smile fades, and I am self-conscious about my son’s obvious disability causing her pain. I feel apologetic only for a moment, because I cannot change how she views Ethan. I remember the same desperate moments, searching for contrasts between my son and those who had already been diagnosed. I meet her gaze and smile warmly to demonstrate there is still peace and happiness in mothering my child. And there truly is. For some mothers, the elation occurs when their child achieves or closes the gap, overcomes. I am not privy to that. Our accomplishments are less measurable, but oh, so sweet. I never imagined reaching this milestone of my own. I have transformed into a more purposeful mother, preferring the playground to the parking lot, the city fountain to the kitchen sink, and the backyard over the church pew. What could be more fulfilling than earning the trust of a child who has every reason to recoil from a world that can be harsh, over-stimulating, and judgmental?
I want to tell this young mother standing before me, It’s okay you reject us, our fate. Linger in that place of optimism, but only for a moment. There is much to do. We autism moms are busy and our arms are full, so I may not be able to catch you as you fall. But I can be among the women who assemble to pick you up after you hit the ground. Of course, I don’t tell her all this. She is not ready to hear it, the possibility her child may be among the unrecovered. Instead, I offer, “There is a group of us who meet for coffee on Wednesdays. Do you want to join us?”