By Laurie Foos
My son was standing at the window looking out at the cars when I knew. He was four years old and talking to himself, repeating bits of dialogue from television and things he’d heard during the day, a practice I’d learned much later is called “scripting.” I sat next to him by the window as he leaned against the glass. Together we watched the cars whizzing by on the busy road in front of our house.
“See that blue one? Look at the red one,” I said, and he kept looking out at the cars, not at me, and said, “See that blue one? Look at the red one.”
I tried to get him to look at me, but he wouldn’t, even when I said his name. Zachariah.
“The world is a confusing place for you, buddy, isn’t it?” I said, and for a moment it was just the two of us looking out at the cars and saying nothing.
That morning the speech teacher at his developmental preschool had called, a call I realized much later she must have rehearsed many times before picking up the phone. I no longer remember her name, but I know she was young and pretty, as most of my son’s favorite therapists were, and as soon as I heard her voice on the other end, I knew why she was calling.
“I wanted to touch base with you about Zachariah,” she said. She paused, as if waiting for me to cut in, and when I didn’t, she said, “I’m seeing some of the things we talked about, some of those things I mentioned back in January.”
I won’t make you say it, I thought, even though, since everything had begun, the Early Intervention, the hours each week with my son strapped in a booster seat while therapists tried to coax him to say new words, to make eye contact, to feed bottles to baby dolls and send Diego riding an elephant, that all along, I’d been trying to make someone say it. Your son is on the Autism spectrum. I’d spent so many late nights doing Google searches, trying to figure out why all the therapists who traipsed into my home four times a week kept stressing his inability to point at objects in books or call me by name. What were they getting at? I’d wanted to know. What were they all looking for? Why did they keep saying I shouldn’t worry, that it was just a speech delay?
By then, though, I’d done enough Internet searches for “Signs of Autism” to know that my son had nearly all of them.
“I understand,” I said to the speech teacher that day on the phone, “because I’m seeing them, too.”
The actual diagnosis happened rather uneventfully in the basement of the office of a developmental pediatrician. The nurse practitioner tried to get him to do the things all the other therapists had been trying to do: to build a tower of blocks; to comb the dolly’s hair; to point at the duck and the sheep in the book; to answer the questions, “Can you show me the cat?” and “Zachariah, what’s this?”
My son spent much of the time at the window looking at the lawn mower outside. Periodically the nurse practitioner directed him back to the blocks and the doll, but inevitably he’d get up to check on the mower blaring outside.
“He’s worried,” I said. “He’s worried about the lawn mower. It’s very loud.”
I sat on an orange chair in the corner of the office and counted the minutes until the test was over. I wanted the noise outside to stop, for my son to do just one of the things he’d been asked to do, to get us out of that office where I could sit somewhere by myself for a very long time.
Finally the nurse practitioner wrote the letters, “PDD-NOS” — Pervasive Developmental Disorder Not Otherwise Specified, a disorder on the Autism spectrum — in block letters, touched my arm and said, “But mild, though. Mild.”
When I got home that day, I sat in the bathroom on the edge of the tub. My father had died a year and a half earlier after a seven-year battle with colon cancer, and I realized sitting on the edge of that tub how many times I’d sat there worrying about someone I loved: my father, my bereaved mother, my son. I remember I thought that day of writing e-mails to friends about that day at the office, about the testing, about what had been confirmed about my son — this was before the wildfire of texting — but I didn’t know what I’d say, or what they would say in return. What was there, after all, to say?
Eventually I told people that my son had been diagnosed, many of whom told me stories about other children who had needed extra help in school at one time or another or who had recovered from some type of developmental delay.
“Look at Einstein,” one friend said. “He didn’t talk at all until he was four or five.”
“Maybe he’s just tuning you out,” another friend said. “My kid does that all the time.”
Every mother I knew had a story of a child who had triumphed. Did I watch the kid on 48 Hours who had been on that special diet and who no longer had Autism, or had I seen the kid on Youtube who suddenly spoke full sentences at six-and-a-half after being utterly mute? And what about those non-verbal kids who couldn’t speak at all but could type those lines filled with striking images and turns of phrase?
“He’s only four,” they’d say, and I’d agree and try to feel reassured, as I knew they wanted me to, but what I really wanted to say, even to my own mother still in grief and feeling protective of her only grandson was, “I know you mean well, but you just don’t understand.”
Not long after the diagnosis, my husband and I attended a fundraiser at the developmental preschool where our son now received ABA therapy in addition to the speech and occupational therapy, and other therapies that are offered to children like my son. During the break from bidding on baskets of gift certificates to benefit the school, we drifted into the cafeteria where they were serving coffee and donuts and taking membership for the Special Ed PTA. At my typical daughter’s preschool — my kids are sixteen months apart — the moms often walked by each other in the hallways and gave each other those half-smiles at drop off but said little else, and to be fair, I hadn’t made much of an effort with those moms, either.
“Hi,” I said to the woman behind the table who stood over the paperwork. “I’m Laurie, and my son is four, and I just found out that he is on the spectrum…”
Before I could even finish the sentence, this woman I’d seen many mornings at drop off with two boys, one on each arm, a haphazard ponytail and bags under her eyes, reached across the table and took my hand.
“Don’t feel alone,” she said. “Listen to me. You don’t have to feel alone.”
I almost stopped her and said, “Oh, it’s okay. Really, I’m okay,” mentally going through the list of women I had in my life who had listened to me talk about my son. But instead I let her hold my hand. All this time of feeling so self-aware, I had never realized how deeply alone I had felt.
I don’t know what happened to that woman, as our sons ended up in different districts after aging out of the developmental preschool. I never did have the chance to thank her for her kindness that day. Now my son is nine years old and in a self-contained class, a small class made up of children like my son, children with cognitive and social delays that set them distinctly below grade level and unable to be fully integrated into typical classroom settings. He speaks constantly and has made great strides, reads and writes and is distinctly more interested in other children and in the world around him, though he struggles with change and with the kinds of social and cognitive issues that my friend with “typical” children don’t experience. With the advent of Facebook and other social media outlets, support groups, and the like, I have found a way to remind myself when I need to that there are other moms out there like me, other moms with nine-year-old boys who eat the sleeves of their sweatshirts, who can’t understand why babies don’t speak, who scream and cry when the bus has a substitute driver, or when it rains, or when something is moved in their bedrooms.
Sometimes at night when I lay my head on my pillow, there are worries that course through my head, worries about what life will be like for my son when he’s no longer nine, when it’s time for girlfriends and college and jobs. When those moments happen, I think about that woman at the preschool and wonder what her worries are, and I think about all the other mothers like me with children who struggle. I’ve had many other moments since then, with mothers on park benches, in dressing rooms, and in line for the ladies room. We recognize each other; it’s as if we know our own kind. My son may hold his hand over his ears at the sharp sound of the hand dryer, and another boy may flap his hands or walk on tiptoe. We may talk about a fear of haircuts or an endless need to open and close doors. On the days when there are meltdowns or when my son eats the wash cloth or lies down on the floor during homework time, I’ll go into the bathroom before I get into bed, sit on the tub, and think of these other women and the things we say to each other, those snippets of conversation, a phrase here or there, and know that somewhere, one of these women is saying, “My kid does that, too.”
Laurie Foos is the author of Ex Utero, Portrait of the Walrus By a Young Artist, Twinship, Bingo Under the Crucifix, Before Elvis There Was Nothing, The Giant Baby, and a new novel, The Blue Girl, published this July.
Photo: Getty Images