This is What Genes Can’t Tell Us, a monthly column by Taylor Harris on parenting, genetics, and the quest for answers to medical riddles.
The last time we saw Tophs’s geneticist, a tall woman with an athletic build who is also a mom, she sat on the edge of the examination bed in her white coat and apologized to us. “We brought you here,” she said, “and we don’t really have more answers for you.” That appointment, three months ago now, confirmed a shift for us—away from the search for medical answers. We can monitor Tophs’s blood sugar levels and keep an eye on his growth. We can check his enzyme levels with a blood draw or X-ray his bones to determine their age. But our focus now centers on his developmental and educational needs.
What does learning look like for Tophs, and how can we partner with his teachers and therapists to make sure he’s—what—at the top of his class? No, but it’s hard to know what my expectations should be. When he scores below average on any diagnostic or subject test, I still get that dropping-through-an-elevator-shaft feeling. I don’t know how to renegotiate expectations I’m not even aware I have for Tophs until he has trouble meeting them.
Currently, Tophs’s favorite saying is, “Just try your best.” He’s especially fond of exhorting his older sister with these words when he’s beaten a level she hasn’t on a game. But as his mother, as this advocate people say parents of kids with special needs need to be, I recognize that my son’s ability to learn—to “fully access the curriculum,” as educators say—cannot hinge on his effort alone. We rely on several people in his elementary school to help and support him. Over the last year, working with our local public schools to create an Individualized Educational Program (IEP) that reflects Tophs’s progress and needs has been difficult, to say the least.
My husband and I believe in public schools. We had planned to send our children to a diverse neighborhood school before we ever knew Tophs would qualify for special education services and need an IEP; before we knew that, thanks to the Individuals with Disabilities Education Act (IDEA), our local school would have to make room for him. Ideally, Tophs’s teachers would make room for the nuance of his situation—the fact that, outside of hypoglycemia, language disorder, and developmental delay, we lack a clear diagnosis, a word that binds all these things together. They would recognize the unknown physiological elements that likely affect his engagement, processing speed, and overall mood.
This isn’t pie-in-the-sky talk; I’ve seen the access afforded by the law, paired with the right educators, propel my son forward in every academic, social, and emotional area you could imagine. I’ve seen what’s possible when teachers and therapists ask, “What more could we be doing for this child?” instead of “What’s the least we can do under the law?”
We went to our first IEP meeting for Tophs when he was three years old. At the time, we lived in Charlottesville, Virginia, and talking to his teacher, Paige, was like having coffee with an old friend who knew my son almost as well I did. My husband, Paul, and I sat on plastic primary-colored seats at a lowered table in Tophs’s preschool classroom as she shared stories of his growth, benchmarks he’d met, and things that still puzzled her about our son. She constantly reminded us of his strengths in a way that didn’t make us feel we were wrong to have concerns. She wasn’t afraid to veer off the page, to set the document down, and listen. Or to mention creative ways she was trying to engage him—would spinning him in a swing help his processing speed? Would holding a fidget toy make him less anxious? Would he enjoy the input from a weighted blanket? Could he benefit from spending circle time with more typically developing peers?
What we knew, without a doubt, was that Paige always worked with Tophs in mind. Everything about her reflected a contagious and active hope. I left those meetings secure in the belief that Paige and the rest of her team weren’t afraid to see our son, even if they couldn’t always explain him.
Then our family moved across the state.
My first clue should have been that the new county wouldn’t even consider Tophs for a reverse-inclusion class, where he could have spent an entire day with both typically developing peers and other students with disabilities or delays. The county reserved spaces in those classrooms for children with multiple or severe disabilities. Tophs wouldn’t qualify, even if he would greatly benefit.
Okay, we reasoned, their game, their rules. But in our first IEP meeting in our new town, the team members made it clear they didn’t want to make room for Tophs. They offered three days of preschool instead of his usual five. What would we do with him the other two days? Why would we add another layer of change to his transition? They didn’t know—maybe we could take him to the library, they suggested, or a playgroup. By law, they couldn’t tell us to pay for private school, but they did tell us where other children were enrolled. The county, among the wealthiest in the nation, reserved its five-day special education programs for kids with the most severe disabilities. So their “best option” for a less restrictive environment was to educate our son fewer days per week.
That was the first time Paul and I refused to sign an IEP.
You can leave an IEP meeting feeling any range of emotions. My friend, also a mom to a child with special needs, says she and her husband usually take the whole day off from work and grab burgers and shakes after their long, stressful meetings. Even meetings that aren’t particularly contentious can leave you feeling drained or walking around in what I now call the “IEP haze.” I left that first meeting, having cried in front of a group of strangers who said we were asking for “too much” (and that Charlottesville City Schools had provided too much for our son) and feeling completely unheard. Tophs couldn’t attend his new school until we met again and agreed on an IEP. The kid who we knew was a poster child for early intervention would sit at home with me for almost two weeks, because someone in a position of power had reasoned, without knowing him, that he should have less.
Around that time, I developed the mental hashtag #NotMyBlackBoy. It’s something I would repeat in my head as I prepared to engage educators who would try to convince me time and time again that, in Tophs’s case, the bare bones would do. But as Tophs’s mother, I’m never just advocating for an undiagnosed child whom several teachers have found puzzling and 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 into, I have to hold both these truths close.
I’m a people-pleaser, so everything in me wants the team to like us. I agonize over what they say about us before Paul and I walk in, given our history of pushing back. I’d prefer to stay quiet or trade funny stories about Tophs or ask where the speech pathologist found such cute shoes. But my husband and I know too much about what can happen to boys like ours for me to compliment a teacher’s ballet flats and sign on the line. We know that little black and brown children often get left behind, so as much as these frustrating meetings are about advocating for a child whose root condition is unknown, whose challenges are hard to name, they are about advocating for a child whose race is known, and whose trajectory cannot be named by people who haven’t taken the time to get to know him.
Eventually, the county agreed to serve Tophs five days a week at a local preschool, but at the next meeting, they re-proposed three days a week of school, and, once again, we refused to sign. Thankfully, the law works in parents’ favor in those cases, and the team has to revert to the last agreed-upon document.
When trying to bargain us down, a team member will often remind us that the IEP is “amendable.” In other words, if Tophs starts to fall far enough away from “average,” then they would consider adding services back. Try telling that to my husband, a former high school counselor in the county, who served students who had been overlooked or underserved for years until it was too late—until their options were far more limited than they needed to be. That will not be our son.
Even if we acknowledge that race matters in conference rooms and classrooms in our county and across the nation, the how can be difficult to chart. It might be in the way my husband gets cut off mid-sentence, or how I share the same concern five times without being acknowledged. Maybe it’s in the way Paul and I are fed lines about “hard” data and statistics that we know are flimsy, but my husband has to push back with just the right tone so as not to be confused with the angry black man—or his cousin, the uppity negro.
It’s certainly in the way some of my son’s goals are listed under the category of “behavior” on his IEP because the county doesn’t have a drop-down tab for “processing” or another category that doesn’t reek of “This kid might be trouble.” I see this “behavior” catchall as a stone’s throw from words such as “aggressive” or “non-compliant,” and we know where words tossed around that like find black men in our country. For black boys in this county, it signals a system that is happy to maintain the status quo, waiting for kids to fail before stepping in. You know you’re in scary territory when an educator opens a conversation with “Some kids don’t even go to school before kindergarten.” Is this where Paul and I are supposed to fall down on our knees and thank them for this opportunity?
Perhaps no one else in the room is consciously thinking about race. But as black people, we often play a game called, “Can you imagine?” in which we consider a 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 have taken a white man to Burger King. In less lethal scenarios, it might be picturing a white professor of a top university being told, when he expresses concern about his son’s processing speed, that he should take his son on vacation and point out the birds and the sand. He should 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?
Tophs will be okay, because Paul and I will keep showing up to meetings and refusing to sign until we’re comfortable with the plan, no matter who’s in the room. But it’s worth considering how a school system that works to provide the minimum, to do the least for those who need more, can disproportionately and adversely affect students and families of color.
The loss, for everyone involved in our recent IEP meetings, can be measured in time, energy, and imagination. When my anecdotes and concerns about Tophs are ignored or referred to in air quotes—as though only hard numbers or test results matter—we all lose. What angers me most as a mother is that I have to be deficit-oriented in meetings in order to get my point across. If I commend Tophs’s progress and strengths for too long, 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?
Sometimes I still want to bury my head in the sand and succumb to the temptation that I’m making it all up; that disorders and areas of need and racial inequality aren’t real if they can’t be named or graphed. But I can’t do that to Tophs. So Paul and I first pray, and then we show up, knowing we must strike the right balance between feeling gratitude for individual teachers and demanding more from the system as a whole.
In our last meeting, that seemed to make a difference. When discussing Tophs’s ability to retrieve words we know he’s learned, I shared a story, quoting Tophs. I told the team how he described a recent injury at school: “I fell and there was that red stuff on my shirt. What’s that red thing called?” he’d asked.
A pause. His inability to find the word “blood” hung in the air between us. Their faces softened. I think, this time, they heard me.