Oscar should be in his element, piling pom-poms, pipe cleaners, and beads into our shopping cart like I’ve given him permission to do. Instead, my 5-year-old son moves around the creative reuse center seemingly disinterested. The saleslady senses his unease and gravitates toward my daughter. Two-year-old Molly gives the woman a warm smile, excitedly shows off the stickers she’s picked out, and just like that, the two are fast friends. Molly and the saleslady peruse the sequins while my son grows increasingly dysregulated.
Moments later, Oscar throws a bottle of acrylic paint (capped, thankfully) and makes a beeline for the door. I scoop him up and try to calm him down before he gets hurt or someone else intervenes. With Oscar, I’ve learned to expect the unexpected—and I love him for it!—but this is not one of my finer moments. He’d been looking forward to this shopping trip all morning, and I wish, for his sake, he felt at ease enough to enjoy himself. Other shoppers look annoyed, so in spite of myself, I feel embarrassed and frustrated.
What’s wrong with him? I think.
For the last year or so, my husband and I have tried, and failed, to answer that question. Months of stressful evaluations yielded an alphabet soup of diagnoses—oppositional defiance disorder (ODD), attention deficit hyperactivity disorder (ADHD), generalized anxiety disorder (GAD), sensory processing disorder (SPD), pragmatic speech disorder (PSD), pathological demand avoidance (PDA), to name just a few—but none of these labels adequately describe our Oscar. Whatever you call it, his behavior can be so difficult to deal with at times that he requires a one-on-one aide at a school especially geared toward kids with learning challenges, developmental delays, and social and sensory sensitivities. It is costly, exhausting, and emotional to care for him, and he is very different from our daughter, who makes my job easy, who charms strangers like the woman at the refuse center all the time.
And yet I find it heartbreaking to witness how differently he is treated by the world. Oscar has many wonderful qualities, too, and it is not impossible to connect with him. But too many people, I’ve observed, don’t even try.
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Every professional we’ve dealt with starts by soliciting a theory of where things went awry. Oscar spent his first two nights in the NICU due to meconium aspiration syndrome, but aside from that, my pregnancy was normal and my delivery was typical. He came home from the hospital when I did and hit all his developmental milestones. Then, around 2 years old, Oscar was recommended for early intervention due to a speech delay. We missed the opportunity because Molly was born that same month. Then the pandemic happened.
When the world reopened, we sent our high-spirited 3-year-old to our local public preschool, but Oscar never fell into line, and traditional methods to control his behavior exacerbated the issues. At our first meeting with the committee on special education, his dad and I got the message that we were overly permissive. Our child needed to hear firmer no. By then, his teachers had implemented multiple behavior charts, as if Oscar were simply unmotivated, but his maladaptive and regressive behaviors only increased. Even after his diagnoses, teachers and administrators seemed to imply that Oscar could control himself if only he tried harder.
But just because Oscar sometimes engages doesn’t mean he’s choosing not to when he doesn’t. His asynchronicity is confounding. Say hello or ask what he did at school and it’s as if he doesn’t hear you; bring up a topic that interests him and he comes alive. Oscar can animatedly recount the plot of the chapter book we’re reading at bedtime or offer a detailed explanation of how red lights work (and why ambulances are allowed to pass through them), but he can’t necessarily ask for a glass of water when he’s thirsty.
One-on-one and when he is relaxed, Oscar is clever, funny, creative, curious, and kind, but a typical classroom with 20-something kids overwhelms him. At his public school, he’d move around the room, nonverbal, ignoring adults’ redirection, pulling things down from the walls and pushing into other kids. By November, after other parents complained, Oscar’s hours had been reduced from full-time to just two per day.
Days after we got this news, we hosted Thanksgiving. Molly delighted our guests while Oscar circled the room, hid under the table, threw things at people, and chewed on his clothes. My husband and I ran interference when a family member tried to insist Oscar shut a kitchen cabinet door behind him. Another relative sternly lectured Oscar about keeping his hands to himself. My husband’s defense of his special-needs son led to an argument so heated that the relative packed his bags and flew home.
By January, Oscar had been removed from his school entirely because it couldn’t provide the right support services. Yet none of the public therapeutic programs that the district referred him to had space. For months, we hunkered down as a family, feeling misunderstood, isolated, and alone. I tried to homeschool my hyperactive then-4-year-old, but forcing his butt into a chair to learn was grueling, so eventually I stopped. That first snowfall, we tossed our workbooks aside and went out into the backyard. Oscar marveled at the sight of a snowflake up close under a magnifying glass, an activity that transitioned effortlessly into an enthralling conversation about climate science.
Today, Oscar is at a Waldorf school for children with special needs, a low-demand environment for children who need social-emotional learning. It’s a place that drops rewards and sanctions and prioritizes co-regulation. A place where my child can be himself and access appropriate accommodations for his nervous system. A place where I know my child is safe and where I needn’t be hypervigilant of other people’s judgments of my parenting.
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Even on a 200-acre paradise of biodynamic gardens, forests, and streams where he and just six classmates bake bread, gather eggs, climb trees, and sing songs, Oscar still struggles to manage his feelings, follow instructions, and stay with the group. One minute, he’s working cooperatively, benevolently involving the younger children and patiently waiting his turn. The next, he’s melting down because a fellow kindergartener can’t hold a conversation about evolution or refuses to agree with the statement that one day we’re all going to die. Whatever the behavior, his teachers are unruffled. I try to take their empathetic lead.
Of course, even if I am understanding and his school is understanding, we’re continually encountering people who seem to wish he would just be “normal.” Strangers are often intolerant. Family and friends act confused and feel hurt that he can’t obediently listen to their stories or respond graciously when given a gift. People who genuinely love him stumble awkwardly over their words when speaking of his “special school.” I’ve been asked when, if ever, he’ll be cured. Even professionals who ought to know better continue to suggest he just needs discipline. We hear “we’ve never met a kid like this” again and again—as if that were a bad thing.
I knew ableism was everywhere. Now I see it every day, often in the form of unhelpful and uncalled for microaggressions, like the admissions officer at the museum eying Oscar warily and suggesting we skip the indoor exhibits or the Facebook friend making a joke about tasering a sensory-seeking kid.
The hardest part, though, is not taking in what others say and do but knowing what they’re missing. Underneath his challenging behavior, my kid is awesome. The fact that he requires accommodations to get along is neither his fault nor mine. And actually, it’s not a fault at all. Just as snowflakes form in a wide variety of intricate shapes, no two kids are alike. I’ve got two very different snowflakes, and I love them both.