Ideas
January 11, 2022 7:00 AM EST
Tophs Harris's parents have been searching for a diagnosis for his symptoms since he was 22 months old.
Marcus Maddox for TIME

After just one IEP meeting at Tophs’ new school, I understood why many parents loathe them. Sometimes you walk into a cold, sterile room and sit across from people who must have once loved something about their job but have become dull to new stories and students. They’ve traded ideas and innovation for rote phrases.

An IEP, or Individualized Education Program, is both a written plan and a program that includes the special education services and accommodations kids need in order to thrive. While we had some idea of what Tophs needed, we didn’t have a diagnosis. For two years, I’d been searching for answers—ever since he awoke in his crib one morning, staring at nothing, not making a sound, before falling back asleep. How could a happy, chubby 22-month-old eat a full dinner one night and wake up with a blood sugar level of 27? How could a child with impeccable rhythm and comedic timing struggle to speak or respond to his name? Geneticists had studied 20,000 of his genes, hoping to crack the code to our boy’s body, to find the source of his frightening hypoglycemia, short stature, carnitine deficiency, and developmental delays. But they still hadn’t been able to give us a why.

Ideally, every educator would make room for the nuance of Tophs’ situation. They would leave space for the unknown physiological elements that likely affect his engagement, processing speed and overall mood. They would ask, “What more could we be doing for this child?” instead of “What’s the least we can do under the law?”

Read More: How Ice Cream Became My Own Personal Act of Resistance

During Tophs’s preschool years, a classroom teacher and case manager, speech and language pathologist, and occupational therapist worked together on his behalf. The IEP team also includes parents, a fact that Tophs’ former teacher never needed to be reminded of. But when we moved to another school district within the state, we discovered an entirely different set of unwritten codes.

Tophs, then 4, played with a toy on the carpet, as my husband, Paul, took a seat to my left, and I held our 6-month-old, Juliet, on my lap. A woman with short blonde hair and thick mascara, who had worked in central administration for umpteen years, began the meeting to transfer Tophs’s IEP.

“We are recommending three days a week for Christopher.”

She’d been called in to lay down the law.

“But he attends school five days a week in Charlottesville,” Paul said. “You haven’t even had a chance to work with him. What evidence are you basing your decision on?”

We naïvely thought they would accept the work of their colleagues two hours down the road and make adjustments later.

“Well, in this county . . .”

Never a good sign.

“. . . we reserve the five-day-a-week spots for students with the most severe disabilities.”

“Why is that? He’s made great progress with early intervention. Why change that before you even meet him?” Go, Paul, go, Paul! I watched him defend our son’s right to keep learning.

Her, looking at his transfer IEP, as our brown boy played with a model school bus and her colleagues talked sweetly to the baby: “They gave him way too many speech hours.”

“So you’re saying you don’t trust the judgment of your in-state colleagues, even though you haven’t worked with our son?” Paul wasn’t yelling. He had to be firm but cordial, a professor who never made others feel threatened. He had to be father to a son he didn’t always understand but whom he’d give up any job or degree for.

“I’m saying this is it.” She tossed the papers on the table. “This is what we’re offering.”

Read More: There’s No End in Sight for COVID-19. What Do We Tell Our Kids Now?

Oooh, child. I can be meek and lack confidence, I can be filled to the brim with social anxiety—until a room full of white people tell me I want too much. They suggested we take him to the library on the two days he wouldn’t be in school. They treated us as though we were looking for free childcare, not a continuation of services.

I let Paul lead the rebuttal. He provided the structure, I filled in with details of Tophs’ history. I don’t think they knew what to make of us. We are middle class. We are highly educated. We are Christians. Yet we weren’t overcome with gratitude when one teacher offered, “Some kids don’t even go to school until kindergarten!”

Really? How dare we demand our son receive what is secured by law. This is how Black students, in particular, are railroaded by the American education system every single day.

I’ve never fit the stereotype of the talkative emotional wife who wants to verbally process while her husband watches football. I’d rather read a good book in a cave. But I know anger, and a righteous rage burned in my gut. My son wouldn’t be another who slipped through the cracks of the system or was pushed off a cliff.

As I opened my mouth to share one last comment, my rage disintegrated. My voice cracked. I looked down, but I couldn’t make my tears retreat. I willed myself to keep it together as the people who’d worked so hard to push us away scrambled to hand me tissues.

“I just want to say that this didn’t have to be so hard.” Behind those words were tests they knew nothing of. Behind those words were thousands of genes and a handful of confusing mutations. Behind those words was an astute doctor who said, “He’s got something; we just aren’t smart enough to figure it out yet.” They had no idea. And they didn’t ask. They didn’t care.

We refused to sign. Which meant Tophs would sit out of school for at least two weeks until we reconvened. The kid who we knew was a poster child for early intervention would stay at home because someone in a position of power had reasoned, without knowing him, that he should have less.

Taylor Harris, days before the publication of her memoir "This Boy We Made," about her son Tophs.
Marcus Maddox for TIME
Tophs, now age 9, plays with his magnetic tiles.
Marcus Maddox for TIME

You can leave an IEP meeting feeling any range of emotions. My friend, also mom to a child with special needs, says she and her husband usually take the day off from work and grab burgers and shakes after their long, stressful meetings. Even meetings that aren’t particularly contentious can leave you drained, walking around in what I call the “IEP haze.”

Around that time, I developed the mental hashtag #NotMyBlackBoy. I would repeat it in my head as I prepared to engage educators who would try to convince me that in Tophs’ case, the bare bones would do. As Tophs’ mother, I’m never just advocating for an undiagnosed child whose challenges don’t follow any script; I’m also a Black mother advocating for my Black son in a room full of people who don’t look like us. With an education gap between races that lingers at the threshold of almost every school building you step foot in, I have to hold both these truths close.

I agonized over what the team said about us when we weren’t in the room. I’d prefer to compliment a teacher’s ballet flats and sign on the dotted line. But Paul and I know too much. As much as these frustrating meetings are about advocating for a child whose root condition is unknown, they also are about fighting for a child whose race is known, whose trajectory cannot be determined by people who don’t care to know him.

Read More: My Kids Can’t Get Vaccinated Yet, and I’m Barely Keeping It Together

Perhaps no one else in the room is consciously thinking about race. But Paul and I play a game called “Can you imagine?” A game in which we consider the situation and change the race of the person involved. It’s how we might think about a white terrorist being escorted to Burger King by cops. Can you imagine if that had been a brutha? Or an unarmed man being shot six times in his back for holding a cell phone. They would’ve taken a white man to Burger King. In less lethal scenarios, it might be picturing a white professor at a top-tier university being told, when he expressed concern about his son’s processing speed, that he should take his son on vacation, point out the birds and the sand. He should, like, talk to him. Or it’s wondering if a white mother with degrees from UVA and Johns Hopkins, when noting her son’s history of sensory-related challenges, would be told, “We all have sensory needs, you know. Like, sometimes I need to get up and walk around.”

And what happens when a single parent working two jobs walks into a meeting? Or a parent who is stressed about making rent or has another child with more urgent needs? What then?

But because my allegiance is to God and not to white people maintaining the status quo, I also wondered if this move had been some cosmic misunderstanding. I kept thinking about Abraham offering up Isaac, an angel intercepting the human sacrifice. We had moved to northern Virginia so Paul could train with pastors at a church there, the plan being that we would return to Charlottesville two years later to start a new church, but I didn’t want to offer up our boy to make this possible. I didn’t want that to be what God required, but what if it were? Did Paul’s apprenticeship necessitate loss for our family? On one hand, I said, “Whatever you want, Jesus,” and on the other hand, “Don’t you see us? Can’t you help Tophs? Don’t forget him, God.” A tired mother’s psalm. Maybe it’s because I’m the youngest child or have bought into prosperity-driven Western Christianity. Whatever the reason, I wanted it both ways. I would not lose my son to 18 months of poor education in his most critical years of development.

At the next meeting, the gatekeeper from central admin relented, agreeing to let Tophs attend preschool five days a week. But later that spring, the team reproposed three days a week of school, and, once again, we refused to sign. Thankfully, the law works in parents’ favor in such cases, and the team reverts to the last agreed-upon document.

When trying to bargain us down, a team member would remind us that the IEP was amendable. In other words, if Tophs started to fall far enough away from average, then they would consider adding services back. Try telling that to Paul, a former high school counselor, who served students who’d been overlooked or underserved for years until it was too late—until their options were far more limited than they needed to be. That would not be our son.

The loss, for everyone involved in such IEP meetings, can be measured in time, energy and imagination. When my concerns about Tophs are ignored or referred to in air quotes, as though only hard numbers matter, we all lose. What angers me most as a mother is that I have to be deficit-oriented in meetings to get my point across. If I commend Tophs’ progress and strengths, they will think I’m agreeing to cut his services. How is it that a system operates without space for a parent to recognize strengths and pinpoint needs? At what point did efficiency kill nuance?

Taylor and Tophs share an embrace in their home in Pennsylvania in January.
Marcus Maddox for TIME

I wondered if Tophs sensed the resistance within the county we’d felt as his parents. For the first time since he’d started school as a 2-year-old, he complained about going. He’d rather be home building elaborate two-story barns with magnetic tiles for his growing herd of My Little Ponies.

Tophs worked carefully and quietly, and he didn’t want help. He had the vision. My brown, curly-haired architect with hands that struggled to button but balanced triangles until they clicked together to form the square panel of a wall.

“Look, Mommy!” I didn’t dare touch. But I took it in. This was his area of mastery, a place he could retreat to and revel in strength and ability. Perhaps all he’d wanted from the start was a place he could feel capable and safe.

Was that all I’d wanted too?

“Wow, Tophs! I love how creative you are. You’ve worked so hard.” I tried to say all the right things. “Is this a stable?” He didn’t care about my farm vocabulary, the way I tried to slip it in like spinach into meatloaf.

“Look, they’re sleeping,” he said, pointing to Fluttershy or Pinkie Pie or Twilight Sparkle resting on their hooves. His voice always raspy, the way an old wooden fence feels against your palm. I can’t remember when the ponies, raised from the dead of my ‘80s childhood, found their way into Tophs’ life, but I’m convinced they will never leave. Their cosmic eyes don’t scare him, and he doesn’t seem to mind when a kid laughs at him for bringing one to church. They give him words and characters and templates for conversation.

Alone but befriended in this world of figurines, Tophs directs the magic and sets the scenes. He improvises; his ponies travel to Target to buy even more ponies, but even if the ponies disagree or one falls prey to feathered bangs cut with blunt-tip scissors, the theme remains the same: Friendship Is Magic.

Sometimes I worried whether Tophs connected with kids his age, especially as he left the self-contained special-education preschool classroom and entered kindergarten in a new school with typically developing peers. He still received academic, speech and occupational therapy services, but he mostly learned alongside kids who didn’t need that sort of targeted help. I tried not to obsess over the fact that he went to class with kids who attended after-school learning programs to “get ahead.” I’d go crazy gathering lack if I followed my racing type-A thoughts down that trail.

“I’m in love with Cori,” he announced one evening. “She’s sooo sweet. She said I’m cute. I telled a little bit of my friends I’m in love with Cori.” Maybe I had no reason to worry.

Cori, his classmate, had long, wavy hair like the ponies Tophs adored, and the two attended a speech group together. Tophs had probably been crushing on her for a while; earlier in the year, he mentioned Cori had told him to get away from her. I couldn’t tell whether this was regular playground stuff or if Tophs had been constantly touching or nagging her, the way he sometimes did with me or his sisters. It came from an innocent place, but that wouldn’t matter as he got older. Which is exactly the danger with Tophs: without a name for his condition or a great understanding of how he processes information, I’ve imagined future social situations that could be particularly perilous for him.

Imagine a young Black man, who isn’t an auditory processor, who doesn’t always know where his body is in space, who would stand in the middle of a road if he thought someone might need help, who isn’t diabetic but is hypoglycemic, who will become clammy and heavy as stone if he misses a meal, having a run-in with a police officer.

Is he distracted by the flashing lights? If he hasn’t been pulled over before, can he process what this means, get to the side of the road quickly enough without striking a match of resentment within the cop? Will he, like his father, know how to keep his hands on the steering wheel? There is no visual to tell him what to do. Who will remind him to say, “Good evening, Officer. My registration is in the glove compartment. May I reach over?”

So many ways it could go wrong in a flash. I don’t know how to tell you about the intersection of these burdens—Black and undiagnosed—in a world that is comfortable with neither.

Elijah McClain, 23, dancing along the street in Colorado one summer, playing his violin for cats in a shelter, then apologizing to officers as they clamped his artery and shut off the valve to his life. I couldn’t stop crying when I read of Elijah. Out of everyone on that List, he most closely resembles my son. Happy and empathic, eccentric and rhythmic. He deserved space here, was worthy to wear his face mask, whether to keep warm from anemia or safe from social anxiety or just because he liked it.

“He had a child-like spirit,” his friend April Young said. “He lived in his own little world. He was never into, like, fitting in. He just was who he was.”

My son in his world of ponies, dancing to Common and John Legend’s “Glory,” cradling my face in his tiny hands.

“I thank God that he was my son because just him being born brought life into my world, you know what I mean?” Elijah’s mother said. “I know he was giving life to other people too.”

He gave life, they took his. No mother deserves to stand in the place where these two truths meet.

Harris is the author of This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown, from which this essay is adapted

More Must-Read Stories From TIME

Contact us at letters@time.com.

Each product we feature has been independently selected and reviewed by our editorial team. If you make a purchase using the links included, we may earn commission.
Read More From TIME
EDIT POST