I wrote this essay some years ago for a writing class. It was published in 2007 in the anthology, “Cup of Comfort for Parents of Children with Autism.” I’ve long associated the phrase “Good Marching” with our family’s journey. Here’s why:
By Kristen M. Scott
“Way down yonder where the dolphins play,
where they dive and they splash all day…”
Raffi’s mellow voice floats from the den into the kitchen as I make my list of groceries. Pasta and eggs, bagels, another box of the cinnamon cereal Daniel will usually tolerate. Bread, ketchup, and apple juice, of course. Knowing I’ve forgotten something, I take another glance through my small pantry, then steal a glance out the window. The gray sky warns of snow, and I hope to complete my shopping before the roads get slick.
“…the waves come in and the waves go out,
see the water spurting out of your spout.”
I know these songs by heart, by this popular children’s singer I never knew existed before my daughter was born. I sing along with the refrain in my head in spite of myself: “Baby beluga, baby beluga…”
Natalie’s earnest six-year-old voice rises over the sound of the music as I review my spices.
“That’s a whale, Daniel. Belugas are whales. I like whales, Daniel. Whales are big.”
My children are watching the same video they’ve watched countless times before. My son has certain favorites of which he never grows weary. My daughter, older by two years and wiser by ages, doesn’t seem to mind. She accepts his idiosyncrasies, and watches with him.
“Whales live in the ocean, Daniel. Do you like the ocean?’
There is no reply to her question. There is never any reply.
My son was two years old when his team of therapists told me he had autism. I drove home that day blinded by confusion and fear, for I understood very little then of this disorder I would come to know so intimately. Back then I had only a vague awareness of this pervasive, developmental disorder, gleaned largely from the movie Rainman. My ignorance was that of a woman who had never seriously considered that such a tragedy could touch her life.
Glancing at Daniel’s reflection in my rearview mirror as I drove, I felt again the familiar ache as he gazed out the window, his impassive, beautiful face giving no hint at what was happening in his mind. Turning onto Sheridan Road I realized I was crying, quietly at first, then sobbing so violently I pulled the car to the side of the road. I didn’t know much then about autism, not much at all. But I knew enough to recognize that my life would never be the same.
In the weeks and months to come, I moved in a daze, a wall of insulating denial protectively surrounding my consciousness. Numbly following the advice of experts at Northwestern University, I enrolled Daniel in numerous therapies. We practiced painstaking exercises with him at home, read materials our neurologist provided, sought books and articles from the library. But in those early days I couldn’t comprehend the profound and far reaching nature of this disorder. In my naiveté I actually questioned aloud if Daniel’s condition would affect his sister, Natalie. Over time, of course, the question became, “How would this not affect Natalie?” Or, indeed, any of us. Even as I drove my son to therapies designed to engage him in our world, my world was shrinking to the inescapable truth that his life, our lives, were irreparably altered. As one therapist carelessly told me, “He’ll never be normal.” The bright, unencumbered future I had imagined for us had suddenly dissolved into threatening uncertainty.
Raffi is singing now of children around the world. “Achmed lives in Egypt, José lives in Peru, and Sue lives in America.” I picture Natalie on the sofa, her small legs straight in front of her, balancing a coloring book on her lap. Daniel will be standing in front of the television, his stocking feet pounding along the stretch of wooden floor where the carpet ends. He seems to enjoy this repetitive motion. We believe the noise, pressure and stimulation of marching this way somehow comforts him, allowing him to relate better to his physical world. The noise no longer bothers me; I barely even hear it.
“And each one is much like the other, the child of a father and a mother, a very special son or daughter, a lot like me and you…”
The first flakes of snow are falling now as I complete my grocery list, and I feel a stab of anxiety. I no longer enjoy the snow; no longer appreciate its serene beauty as it coats the branches of the apple tree outside my kitchen window. I fear its hidden dangers, the icy patch lurking on the road’s surface, waiting to catch me unaware, sending me careening out of control.
“You’re my brother, Daniel,” my daughter explains gently. “I’m glad you are my brother.”
She couldn’t wait for the arrival of her new sibling, whom she breathlessly referred to throughout my pregnancy as “the new baby.” But as he grew, Natalie’s eagerly anticipated new brother proved bafflingly unwilling to engage. The typical sibling game playing and reciprocity she had so looked forward to did not emerge as he matured into a toddler. Daniel showed no interest in patty cake, or playing catch, or even sharing reading time as we curled together in bed each evening. Most content when left alone, he existed, seemingly happy, sheltered in his own mysterious world. Occasionally he would show mild interest in our dog, a young Sheltie, intrigued, perhaps, by her constant motion or stimulated by the feel of her fur beneath his fingers. Natalie’s enthusiastic invitations to play, however, were almost wholly rebuffed, her effort to be the encouraging, hands-on big sister she longed to be thwarted on a daily basis.
In the darkest part of night, as sleep eluded me, I’d despair at this unwelcome path we now were bidden to follow, grieving all that should have been for my son and for my daughter. I questioned if I could do it, if I had the courage to meet the challenge of this unusual boy, if I would survive the heartbreak which seemed to pervade each day. “I’m lost here, God,” I’d whisper in the dark. “I don’t know how to do this.”
Tucking my grocery list in my purse, I hurry to the den and tell Natalie I’m going to change clothes. “We’ll get our shopping done extra quick today, okay?”
“Okay, Mommy,” she replies, glancing up from her coloring with her wistful smile as I head quickly upstairs.
The thump, thump, thump of Daniel’s stomping follows me, muted now as I change from old sweats to a pair of jeans. Vaguely I realize how often this sound fills our home, this strange marching which communicates nothing to us as we listen, watching, hoping for a sign. It occurs to me as I check my lipstick that at least when I hear him stomping I know what he is up to, saving me from investigating an even more troubling silence.
The video has come to an end and the applause of the audience drifts up the stairs. Good timing, I think.
Then Natalie’s voice reaches me again, tireless in her effort to engage this oddly behaving boy, so different from what she had expected; to draw him close, to share her love in a way he will understand.
“Good marching, Daniel!” she praises him proudly. “You’re good at marching!”
Again, he doesn’t respond, but I doubt I would hear him if he did. I stand absolutely still, as the blood rushes to my face and I feel my heartbeat pulsing at my temple. I stare, motionless, at my reflection in the mirror, the tube of lipgloss in my hand.
“Good marching, Daniel,” I murmur to myself. “Good marching…” Slowly I begin to smile. “Yes, my beautiful boy, you’re good at marching.”
We’ll start with that.
Thank you, Natalie.
She is standing at the window as I return to the den and turns to me with delight. “It’s snowing, Mommy!” she tells me, her eyes eager and glowing. “Can we play in the snow?”
I kneel and pull her close, breathe in her sweet child smell, my lips trembling against her hair. Reaching out to catch Daniel in our embrace, I hold them tightly for a moment, their sturdy bodies warm against my chest.
“Yes, sweetheart,” I say softly. “We can play in the snow. Let’s go marching in the snow.”