The Work of Caring for My Daughter Will Never Be ‘Efficient’

After school, my daughter, Izzy, sits at the kitchen table, wolfing down a snack of cookies and cheese. Her long brown hair is coiled into a bun atop her head, and a thick wall of bangs grazes the edge of her straight eyebrows. She’s still wearing her school uniform—a red sweater-vest over a navy piqué polo. Since last fall, when Izzy started attending elementary school, I’ve grown to appreciate the power of requiring all students to dress the same, like a team. It’s a simple and visible way for Izzy, for all of her classmates, to feel like they belong.

Izzy is 7 years old, although stating her biological age can be a misleading way of describing her, a kid with the physical size and abilities of a typically developing toddler. I try not to characterize her only by her age, just as I try not to characterize her by her disabilities. Those facts alone, siphoned from the rest of her identity, can reduce Izzy to her deficits—the 32 genes and 10 million base pairs of DNA that she is lacking because of a rare chromosomal anomaly. Such facts also foreground obscure details over the full person she has become, both because of and despite the genetic deletion with which she was born.

After Izzy was diagnosed, in 2018, I wrote about my grief over not knowing if she would ever talk, walk, or recognize me as her mother. I still grieve those milestones. Yet I also marvel at Izzy’s many accomplishments: how she has mastered navigating the busy menus on her “talker,” an augmentative communication device provided by the New York City Department of Education; her stamina during physical-therapy sessions, wedged into breaks between classes; how during social studies, her least-favorite subject, she has figured out that pointing at her diaper and then the EXIT sign will promptly get her out of class.

As to whether Izzy recognizes me as her mother, I’ll say this: I am confident that she knows and loves me, even if she might not fully grasp that I’m the one who birthed her. At the same time—and here I think of her orbit of loving teachers, therapists, and other caregivers, particularly those at her school—I would not be surprised if Izzy believes, deep down, that she has many mothers, of which I am but one.

The special-education teachers, physical therapists, occupational therapists, speech and language therapists, feeding therapists, and behavioral specialists who work with Izzy have been essential to her growth. They have also been essential to me. Their outlook on child development favors ability over disability, a “strengths-based mindset” that I can hardly claim as innate. Over the past seven years, I have learned from them by doing. I have mimicked their attitudes and techniques and adopted their goals—such as the vow to “meet children where they are”—as my own.

The reality of Izzy, and of the world that has formed around her, around us, quieted many of my earlier fears about her future. Or it did, until Donald Trump returned to office and his administration began dismantling the infrastructure allowing my daughter to attend school, the backbone of my family’s disability resources and community. With the administration’s attempts to gut the Department of Education—and with Congress’s recent passage of a bill that includes more than $1 trillion in cuts to Medicaid, which states have long relied on to fill gaps in special-education funding—Izzy is one of millions of students at risk of losing access to the crucial support systems that enable them to participate in American classrooms and ordinary life.

In the United States, 15 percent of students, or about 7.3 million, have learning disorders or disabilities entitling them to receive individualized support in school. Such support is mandated by the Individuals With Disabilities Education Act, or IDEA, which ensures a student’s right to a “free appropriate public education.” Yet IDEA is chronically underfunded: For the 2024–25 school year, Congress appropriated less than 13 percent of the per-student cost of special education, about one-third of the 40 percent federal share authorized by IDEA. The shortfall makes it difficult for school districts to hire enough skilled special-ed staff to meet children’s needs. It also forces states to find money elsewhere—by tapping state Medicaid funds, for instance—or to pare down services and effectively shun their legal and moral duty.

In its declarations on education, as in so much else, the Trump administration has adopted rhetoric about maximizing efficiency—rhetoric belied by its actions. Earlier this year, the Education Department placed nearly 1,400 employees on administrative leave, which, in addition to other staff reductions in the weeks following Trump’s inauguration, cut the agency to about half its size. (Many of those laid-off workers are in limbo as challenges to the cuts move through the courts. A Supreme Court ruling yesterday cleared the way for mass firings of federal workers to proceed, but the Court has not yet ruled on another case specifically involving the Education Department.) The department also closed seven of 12 regional civil-rights offices tasked with investigating IDEA violations. Oversight of special education, the White House has said, will shift to the Department of Health and Human Services—the same agency that fired 10,000 employees, some of them unintentionally, just two weeks after the Education Department layoffs.

[Annie Lowrey: The Republicans’ budget makes no sense]

Linda McMahon, the education secretary, has characterized her department’s restructuring as a “commonsense reform” intended to make it easier for states to access IDEA funds. Other officials in favor of these changes have criticized the existing process that families must navigate to access special ed as convoluted and inequitable. On that point, I wholeheartedly agree. Securing legally mandated services for a child with disabilities involves a maze of evaluations, reevaluations, delays, and disputes—a process that is often slow, sometimes costly, and almost always emotionally exhausting. But the administration has proposed a solution that doesn’t address this problem. If the Education Department’s goal is to improve access to services, few actions could be more counterproductive than dismantling the civil-rights backstop for families whose children aren’t receiving the services to which they are legally entitled.

​​I once asked a special-education expert, a faculty member at the Bank Street Graduate School of Education, what I should look for in finding the right school for Izzy. She responded, “The absence of inclusion is exclusion.” I had never thought of it in such stark terms. The conversation that followed motivated me to think harder, and to look harder for the presence of actual resources—for people. For bodies and minds filling school hallways and classrooms; for trained administrators, teachers, aides, and therapists who do the slow, important work of meeting children where they are, while modeling for those students’ parents how to do the same. This is the hard work of building a more accommodating society. It will never be efficient.

Parents have no reliable manual, in this country, for raising and educating a child with disabilities. But I know this much: I do not want my own attitude and behaviors to be another social barrier standing in my daughter’s way. This is why, although Izzy is the one who benefits most from her teachers and therapists, they have also been crucial to my civic education and development as a parent. It is why I have a hard time imagining my life without them.

As a child, I had access to well-lit paths that are not available to Izzy. I grew up in the 1980s and ’90s, in a New Jersey suburb with great public schools, shepherded by the high expectations of my parents, both of whom had immigrated to the United States to finish their medical residencies and go into private practice. They set me up exceptionally well to acquire the requisite prizes—academic and athletic aptitude, university degrees, a lucrative career—to advance my car in the Game of Life. Yet in my role as Izzy’s mother, I often feel unequipped. Raising a child with disabilities can feel like wandering through an orthogonal arrangement of hallways, banging on walls to check for any hidden passageways to a more inclusive realm.

[Read: The biggest surprise about parenting with a disability]

So much about America, with its fixation on achievement, wealth, and physical strength, leaves little room for people who fall outside its rigid definition of a “contributing member of society.” The more prizes you get, the better (and better off) you are is a sensible and comforting ode for those with the prizes. And that model of individualism may have worked for my parents, and even for me—until I had Izzy, whose existence falls outside the widespread social tendency to reduce human worth to productivity and economic output.

One of the ugly truths of prize-collecting, especially under a regime of “efficiency,” is that it feeds off anxieties about scarcity: Even within close-knit communities, individuals are positioned to compete with one another for pieces of a pie that only shrinks. The narrowness of that value system doesn’t account for Izzy’s contribution to society as that rare someone who is easy to love and who also gives love easily to anyone willing to meet her where she is. And the loneliness of abiding by that value system, of being confined by it, no longer serves me as her mother.

The writer and activist Angela Garbes is one of many contemporary voices critiquing this atomized, capitalist view of human value. A shift away from that view, Garbes writes, might come through the act of mothering: to care, teach, support, and sustain. Mothering Izzy has shown me the value of interdependence. Sure, a small part of me clings to my irreplaceable role as Izzy’s one and only mother. But a much larger part finds joy—and relief—in expanding that definition beyond the limits of my own body. I can rattle off the many practical and emotional benefits of thinking of mothering not as a role to protect as mine and mine only, but as a duty, a privilege, and a form of acquired expertise that I get to share with others, and that others can share with me.

At home, in the kitchen, Izzy and I are now 15 minutes into snack time. After she has pounded a few handfuls of cheese, I think she wants water. She doesn’t grab for the drinking vessel on offer, a plain blue cup with a straw that a feeding therapist at school recently introduced into her mealtime repertoire. She wants “something different,” she tells me on her talker. “I need a calming tool.” She prefers the ease and familiarity of the pink, star-patterned sippy cup that she’s been using for five years. While stroking Izzy’s forearm, I draw the blue cup to her lips, coaxing her to take a sip. She lets out an exaggerated, aristocratic sigh.

I’ve been trying off and on, since Izzy was 5, to transition her to the blue big-kid cup, after one of her preschool special-ed teachers noted that the sippy cup was holding Izzy back socially. The teacher had observed that some of Izzy’s classmates were having trouble believing that Izzy was no longer “just a baby,” and she wisely reasoned that a big-kid cup would help other children recognize Izzy as their same-age peer, “with a different kind of body.”

The teacher’s recommendation had initially caught me off guard. For a brief period, it had even made me defensive: Why fix what’s not broken? I thought of the private Facebook group for families of children with Izzy’s syndrome, where I’d seen many photos of kids with feeding tubes inserted into their abdomens because they could not eat solid foods or drink water. When I’d first joined the group, in 2018, after Izzy’s diagnosis, I’d found the photos shocking and upsetting. But slowly, over the years, with the help of Izzy’s teachers, I’ve reprogrammed my brain to see beyond the children’s feeding tubes—which, by the way, were almost never the point of a parent’s post. Perhaps it was the child’s birthday, or simply a sweet picture of a child sitting in her signature legs-crossed position while watching TV after school.

Scrolling through these posts today, I’m still sometimes overwhelmed—not with pity, but with pride for the children and their parents. I see all of the children’s micro-accomplishments: trunk strength, pointing, eye contact, joy. I see the steady presence of educators and therapists, provided by school districts across the country, who have contributed to these kids’ development, and who have imbued their parents with confidence. And I am reminded: A teacher recommending to me that Izzy should learn to drink from a big-kid cup is, on its face, a small thing. But when considered as part of a teacher’s oath to see the full potential in their students, and to push them to meet that potential, it is in fact a very big deal.

Izzy is a proud person. You can see it in the side-eye she gives when she does drink from the big-kid cup, or in a video that recently caught her shooting the camera a blasé look, as if to say, So what, Mom? She was walking independently—a new development—in the hallway at her school. I was at home. She held the hand of her physical therapist while a special-education instructor took the video, capturing the moment. It would be catastrophic for Izzy, and for me, to lose those guides—to lose any of Izzy’s many mothers. Her teachers are also mine.

​​When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.