By Elizabeth Michaelson Monaghan
The waiting room is small, a carpeted, windowless space that opens directly onto a tree-lined street. The walls are lined with upholstered benches, and sometimes strollers.
We are mostly mothers, and our children are mostly boys. We are stay-at-home moms, work-from-home moms and work-full-time-in-an-office moms. We are white, and Latina, and Asian, and at least one of us is a Republican. We are in our thirties and forties. We have nannies, or not. We have spouses. Or not.
We refer to ourselves as middle class, which is not exactly true, since we can afford to be in this waiting room. (We are uncomfortable with that fact, sometimes.)
Every one of us has a smartphone, and sometimes we smile politely at one another before going back to our Facebook feeds, all the while alert for shrieks from behind the closed door of office #2. Is that him?
But often, we talk. Haltingly at first: “How old is he?” “Does he go to pre-school?” “When was he diagnosed?” And then in a rush: “I know!” “Me, too!” “His teachers said…” “But I knew…” “And then he…” all punctuated with laughter.
Our boys are overscheduled. We’re the mothers the mom bloggers warned you about, though when you see us at the bus stop, we’re not dragging our children to Mandarin lessons or soccer practice. We’re late for occupational therapy; our boys have fine motor delays, and problems with sensory integration.
Our boys also have physical therapy, speech therapy, and special education itinerant teachers (SEITs) at pre-school. We know, it seems excessive, but their SEITs help them with transitions, because our kids often cry or scream or collapse when they’re reminded to put away the blocks and come to circle time. Their SEITs help them play with their peers. Yes, they need help playing, because their idea of fun—lining up cars, organizing magnetic letters by color—doesn’t always appeal to other three-and-four-year-olds. Also, they don’t seem to care about making friends. But they will. The specialists have assured us of this.
Our boys have facilitated playdates to help them develop social skills: understanding facial expressions, having conversations, pretending to be sharks. These group playdates with the speech therapist, who doesn’t accept insurance, are vital. That’s why we’re all here, paying $100 an hour ($200 for a one-on-one session).
We’re lucky. We know this. And our boys, our lovely boys, with their fresh-peach cheeks and love of trains, they’re lucky, too. They’re so young, and they’re getting help now, when it will make all the difference. They’re doing so well!
We silently check off our good fortune:
He can express himself.
He’s not aggressive. Sometimes we amend that: Well, not usually.
He’s not an eloper.
There’s no cognitive delay.
Because it could be so much harder. We know the stories: the kids who don’t speak. The kids who are still in diapers at the age of eight. The kids who try to choke their siblings. The kids who can’t hug their parents. The kids who can’t let their parents hug them.
We’re relieved at our sons’ “high functioning” status, and ashamed of that relief: Why should we care that no one looks at our Jacks, our Sams, our Atticuses, and thinks, There’s something wrong with that kid? Why are we proud that no one—yet—guesses our boys have autism, and why are we afraid that someone will? (Of course, someone will.) Autism isn’t shameful, and our boys’ diagnoses aren’t a reflection on us (are they?), so why are we so pleased, and secretly self-congratulatory, that they fly under the radar? Why do we hope that no one will find out? Who cares what other people think?
We care, apparently.
We have lots to discuss while we sit here, sipping lukewarm coffee and waiting for our boys: How to pay for an appropriate—and mind-bogglingly expensive—private school if the public school system can’t meet his needs (we’ll have to sue the city). How to get our services coordinator at the Department of Education to respond to our emails about updating the Individualized Education Plan. How to get the insurance company to approve 18 hours a week of Applied Behavioral Analysis (ABA), which has been so helpful that we’ve been paying for it out-of-pocket, even though according to that Facebook group, ABA is child abuse. Why we’re not having any more kids, even though we always wanted more, and we’d love a girl. What our mothers don’t understand about autism.
And then there are the things we thought no one else understood: The pride we feel when our kids do developmentally typical stuff like wave at a classmate or eat ice cream. The recognition and relief we feel when we see an unfamiliar child at the playground and think, That kid is on the spectrum. And our shame at being consoled by the fact that, after all, our kids are not the only non-neurotypical ones on this particular patch of childhood.
We don’t want our boys to be “cured.” There is no cure; autism is a chronic state, like arthritis, or love. We don’t care about (or we no longer notice) the hand flapping, echolalia, and compulsive chewing on t-shirts that used to cause us such worry and embarrassment.
We love our boys as they are, but we also want them to be happy in—or at least tolerate—the world, with its unpredictable automatic hand dryers and ever-evolving social demands. That’s what all these expensive, time-consuming therapies are supposed to help with: our boys’ anxiety, their sensory and processing difficulties, their rigidity, and communication blind spots. Even with all these services, our boys will still struggle, but hopefully they’ll cope when we run out of fish sticks, or our plans change, or their sisters tease them. We long for their struggles to be ordinary.
We have mom friends, and we’ve told a few of them about the diagnosis. Not many. They’re all sympathetic. But it’s hard to be with them sometimes. If they know about the diagnosis, they feel sorry for our kids, and for us. This is somehow unbearable, even though we regularly feel sorry for our kids, and sometimes ourselves.
And if they don’t know about the diagnosis, we envy their blithe ignorance: They live in a world in which their kids will eat a piece of fruit without gagging. Their complaints about their children are, to us, a species of humble-brag, and they’re offensive in their innocent pride: “He’ll talk to anyone!” “He sleeps like a log!”
We don’t always like ourselves when we’re around these moms.
We think they have it easy, even though we know they don’t. No one does.
When they were diagnosed, we railed at the unfairness of our kids having a chronic condition, even though we have known for years that life is unfair. We were scared that we’d be unable to help our children, our darlings. We were scared that even if we were able to help them, it wouldn’t be enough. We thought we were on our own, isolated by the inescapable knowledge of our boys’ differences.
But with each other, in this waiting room, we’re not constantly reminded of the ways in which our children are delayed, or struggling, or just kind of odd. Here, we sit patiently, anticipating all the ways in which our boys will change, and we know that we’re not alone—that we never have been.
Elizabeth Michaelson Monaghan is a writer, editor, and native New Yorker, where she lives with her husband, son, and many toy cars. She is currently locked in an noble battle with her insurance company over attempts to obtain reimbursement for behavioral services.
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