My Kids Does That, Too

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

By Keaghan Turner, Ph.D.

Maybe because I’m teaching a women’s studies course this semester and everything “personal [seems] political”; maybe because of the most recent recrudescence of the Mother v. feminist debate surrounding last spring’s publication of Elisabeth Badinter’s The Conflict: How Modern Motherhood Undermines the Status of Women (passages from which I will assign to my students), I’ve been thinking about waiting rooms as empowering female spaces lately. Then again, maybe it’s just because I spend time every week as a mother in a waiting room, waiting.

I think this is a safe generalization: When you have a kid with a special need, you spend a good amount of time in waiting rooms.

These waiting rooms are different from the typical pediatrician’s or dentist’s. The waiting rooms I’ve frequented over the past few years are the waiting rooms of specialists—play therapists, occupational therapists, pediatric psychiatrists. When we wait for the pediatrician or the dentist, the only sound—besides maybe some coughing, sneezing, and whining—might be mothers softly reading picture books aloud or kids playing on DSis. These are communal public spaces—we are all sitting there together—but we remain isolated, anonymous, private. As parents, we are not there to make friends or to socialize or to chitchat. We are there, waiting for our child’s name to be called. We are there to see the doctor or dentist. We are there to get results. We are there to have a professional make things better.

In the waiting room of my son’s occupational therapist, the waiting room where I spend the most time on a weekly basis, this is not the case. Here, the same group of mothers whose children have the same Wednesday morning appointment slot wait together. These women talk. A lot. To each other. About everything. What’s more, in this waiting room, none of us expects to get results any time soon and there’s no guarantee the professionals can make things better.

The diagnoses of their children vary; the struggles of their families vary. But two things do not vary in the OT waiting room: it is full of women and the children are all boys.

One of these facts should not be totally surprising if we keep in mind that the Centers for Disease Control report that ADHD alone, the most frequently diagnosed (and controversial) pediatric “invisible disability,” is diagnosed approximately three times as much in boys as in girls in our country. As of a 2011 National Health Interview Survey, 5.2 million American children ages 3-17 have been diagnosed with ADHD; that’s 8.2% of that population. Given the pervasiveness—some would say epidemic—of “invisible disabilities” (which is a catch-all for anything on the Autism spectrum, anything neurologically atypical, anything neurobehavioral, anything to do with mental health), it’s no wonder our behaviorist, when delivering our three-year-old son’s diagnosis (after his first couple years of successfully and dangerously baffling all attempts at discipline and smashing a couple flat-screen TVs), said it’s “only ADHD” with a comforting smile and a relieved shrug while we blinked at her, thunderstruck. (After a couple more years in several different waiting rooms, I get the “only” now).

I have attempted to bring reading and to prep for my women’s studies class in the OT waiting room, but it’s impossible to concentrate amid the lively discussions that inevitably ensue—about the desirability or otherwise of covering forehead lines with bangs, about relieving neck tension by sleeping one night on a hard floor, about the latest developments in an ongoing battle with school administrators over an IEP, about the appropriate time to become a mama grizzly. I mostly just smile and nod, but still I know an awful lot of very personal information about a small group of women whose names I’m not even sure of. I know about their family history with panic attacks, their oversized male first-grader’s problems with a petite girl bully last year, how sorry their sister with three kids is that they could only have one. Eventually, it hit me that while I was staring at the same sentence in my women’s studies anthology, I was failing to appreciate the genuinely feminist, personally political experience happening around me on Wednesday mornings.

The atmosphere in the OT waiting room, despite the circumstances—which are sometimes heartbreaking in the form of preschoolers with feeding tubes and second-graders who will never walk or talk no matter how many waiting rooms their mothers wait in—is surprisingly cheerful. In the face of what most of us would consider tragedy (even those of us whose sons “only” have mainstream neurobehavioral disorders), these mothers manage to smile, laugh, and remark on the progress they observe in each other’s sons, even if the progress is as slight as the straightening of an arm. Being in that waiting room is like being inside of a real-live blog—or an old-school support group. Here is a handful of strangers (essentially) brought together by some degree of common experience, sharing their ideas, telling their stories—talking frustrations, failures, strategies, triumphs—and receiving feedback, edification, suggestions, encouragement, sympathy. The communal waiting room remains somewhat anonymous and so is, like a blog, altogether publicly intimate. All of us in the room together are insiders, and there is palpable relief in not having to explain, justify, or define. There is relief in not being judged and in being simply, immediately understood. Because of this insider-ness, there is a level of honesty, candor, and trust in that waiting room that I have never witnessed in a group of female (or male) acquaintances before. The neighborhood you live in, what your husband does for a living, the car you drive, where your degree is from (or if you have one at all)—none of it matters like it might at the pool, at work, or on Facebook. Our larger cause is common enough among us to affect the dissolution of boundaries (socioeconomic, racial, generational) that usually divide us into a true community motivated by a sense of the common good.

Maybe we should announce our affiliation with our own magnetic car ribbons: OT Waiting Room Mothers Anonymous. Neuroatypical Boy-Moms Anonymous.

Sure, there’s a therapeutic element to these sessions in the waiting room that is valuable in itself, but in trading stories and tips from personal experience, I’ve come to recognize that this group—whether they know it or not—exercises a form of consciousness-raising and call to action that goes beyond traditional notions of therapy or support groups. This community of mothers translates their personal discussions into action that often becomes, at least locally, political as they advocate—tirelessly and perennially—for their underserved and/or vulnerable sons: to teachers, school administrators, school boards, lawyers, insurance companies, health care professionals, society at large. This advocacy on behalf of our special needs children, empowered by a community of women, including not only other mothers but also the doctors, teachers, and therapists we collaborate with, must certainly qualify as some of the most important and practical activism some of us will ever perform as women and in solidarity with other women.

My Wednesday mornings in the waiting room have done more than all of my academic reading and training to prove to me the link rather than the conflict between identifying as a mother and identifying as a feminist. Every week I see that being a feminist mother exists not only in teaching our daughters to reject hollow beauty standards but also in banding together to persevere—personally and politically—in raising typically atypical boys.

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