I still remember the day we found out our son had Asperger’s syndrome. How could I forget? It was a hot June morning and we were getting the kids ready for a walk to our neighborhood pool. The phone rang, and I took it out to the front porch, where I sat on the white rocking chair the kids had given me for Mother’s Day two years before. I slapped at a mosquito and listened to the school psychologist’s halting discussion of my son’s evaluation of several months before.
Doctors, I’ve since learned, have a way of giving you the details first, the numbers and scores and summaries, as if by the time they get to the bottom line you’ll be right there with them, no problem. I half-knew what our results would be, but when the psychologist said, the words rushing out in a tumble, “The diagnosis is Asperger’s syndrome,” I felt a hollow lurch inside. She sounded apologetic and concerned, and for some reason I felt the need to reassure her and mask the emptiness in my heart as I said goodbye.
Weeks passed, and second and third opinions too. The last doctor sent us off with a “Good luck with that” sort of vibe and a couple of website addresses. We felt alone and disoriented, as if we’d embarked on a lifelong journey without a map or compass.
I eventually found guidance and immeasurable solace in the voices of other parents who had negotiated that same journey. I joined a support group for parents of children on the autism spectrum and faithfully went to every coffeehouse meet-up. I scoured the Internet for blogs that gave me what I craved: first-hand accounts in all their raw, ongoing drama. I wanted the here-and-now, the stomach-churning messiness of daily life. I swapped book recommendations and read everything I could get my hands on. Too often, however, I found that the books on autism were distant and clinical. I sensed judgment in their textbook accounts and neatly packaged endings. Sometimes I sensed worse: a triumph I could not yet imagine.
So how refreshing it was to open Gravity Pulls You In, a new collection of essays and poems about parenting children on the autism spectrum. Gravity is the table at the coffeehouse where I sat with other mothers. Gravity is the support group meeting, and the friend on the other end of the telephone who knew just what I was going through.
The collection is divided into three parts and contains a total of thirty-three essays and poems. All of the contributors write from the heart, for all are parents of children with autism. Many are also accomplished authors. Beyond that common bond, however, there is a great breadth of experience. Gravity includes the voices of scientists, actors, therapists, teachers and advocates as well as a foreword by John Elder Robison, author of the acclaimed memoir, Look Me in the Eye: My Life With Asperger’s.
In Part One of the anthology, Notes from Autism’s Edges, we are taken on the roller coaster ride through testing, diagnosis, denial and acceptance. The poem “Label Everything,” by an anonymous writer, captures the tension all parents feel when they are handed a diagnosis. There is a sense of relief in finally having a name but also an apprehension about now having a label: “My boy, label my boy/ My beautiful long-lashed, reading/ writing, 3-year-old, sometimes/ Screamy angel:/ Autistic.”
Kimberly Farrar’s poem “How to Talk to an Autistic Child” deals more with acceptance. She commands us to be “physical and silent” and to “be gentle.” If you get far enough, she writes, “You have had a communication. When she runs away,/ let her.”
Part Two, String Theory, begins with Emily Willingham’s essay by the same name, an essay that also speaks to the title of the book. Gravity does pull you in. Autism pulls you in. The very thing that can make parents feel their world is spinning out of control can also anchor them firmly in who their child is and how his world works.
In this section, the writing stands as testimony to the importance of family support. Barbara Crooker’s poem “The Stone” is a beautiful look at how families share the pain and joys of parenting a child on the spectrum. They pass their treasure to each other like a stone, weightless but weighted, heavy like granite, but also “lighter than air.”
There is indeed lightness and poignancy in this collection, even when the stories are at their most heart-breaking. In “No Pity,” Maggie Kast tells the story of her autistic and developmentally disabled son, Stefan, whose battle with severe health problems claimed his life. Kast’s essay is difficult and painful to read, and the beautiful but brief glimpses we get into Stefan’s being are brilliantly juxtaposed against the ugliness of his illness. Even in the most difficult moments, we see light and love and we steel ourselves to go on:
So I stay put and intervene to save Stefan as much suffering as possible, refusing permission for all but the necessary needles, tubes, and tests, trading permission for information. Tears come at night, making me hate myself for this girly meltdown of anger, when a man would put anger to work.
Part Three, And the Shoes Will Take Us There, brings readers to the edge of what is bearable — to the very darkest places of autism — and out again, to the other side, to love.
Ralph Savarese writes from a father’s perspective, a view not often seen in accounts of this journey. In “To Persevere,” he examines his own struggle with words as a poet and father. He plays with the notion of perseverance, the “clenched attachment to the ordinary” — or to the extraordinary — that is the hallmark of autism. “When loss resumes or prejudice excludes, when boredom/overtakes, I vow to persevere/ with forks and crows and well-washed shirts. I want/ my arms to flap and mouth to moan. I want/ to feel your soul atop my stream-worn words./ You give the world your full and fierce regard.”
B. E. Pinkham’s “Is There Anything Else We Should Know?” goes back in time to a near-drowning incident that led Pinkham and her husband to arrange for their son Stuart, who’d had episodes of destructive and aggressive behavior, to live in a group home:
No matter how many dear friends and respected professionals enthusiastically assured me that I was doing the right thing at the right time, no matter what I knew intellectually about the benefit to Stuart of a more structured daily routine, placing my son in a group home felt like complete failure, like giving up.
The decision was not easy. Yet there is a firm conviction to her writing that guides us through from start to end: “We’re telling good stories again, like the one about our visit to an amusement park this past summer…We’re all calmer, safer, and healthier. No one has failed and no one has given up.”
So many of the poems and essays in this collection resonated with me, for there are bits of haunting sameness in the children the parents write about so lovingly and so carefully, and in the lives of the parents themselves. Ultimately, however, Gravity is a celebration of individuality and difference. It is unlike any book I’ve read on parenting children with autism, both for the quality of writing and for the diversity of perspectives revealed. There is more than one map for this journey, we learn, and more than one destination.
In her essay “Live Via Satellite: A Parenting Journey,” Mary McLaughlin describes herself as satellite to her son’s travels through life. She struggled to “launch” him on the same trajectory as other children before realizing that he needed to find his own orbit, as did she:
I found an orbit around Bud — close enough to have influence, far enough away to keep us from a collision course — as he followed his own trajectory, different from those of the bodies around him, moving at his own pace in his own direction….I tried to focus on that orbit that Bud was following, and let his path through space emerge in its own time and in its own way.
In this sense, Gravity Pulls You In is not only a book for parents of children on the autism spectrum, but a beautiful collection of stories for all parents who love their children and hold them up for all the world to see, no matter which path they walk, no matter where the journey takes them.