When he was 4, I took my middle son, Edmund, to a feeding clinic for an evaluation. Edmund, now 9, was born with a rare genetic disorder called cri du chat syndrome. He has multiple intensive disabilities including nonverbal autism, and he uses a wheelchair. He had been fed via gastrostomy tube since birth and retched at the slightest taste of food. I worried about this. A lot. To be sure, the feeding tube had enabled him to thrive in spite of his health challenges. He had been barely responsive in the neonatal intensive care unit; by 4, he was a friendly preschooler who mashed his fists on toy pianos, delighting in his terrible music. But sharing a meal I’d prepared with friends and family was one of the great joys of my life. How could my child never experience that pleasure?
The feeding clinic informed me that Edmund would require an inpatient stay of at least six weeks. Each day, they’d make hundreds of attempts to feed him until he could accept food without gagging. Six weeks? I worked and had two other kids—even a one-hour daily visit would be rough. He was so affectionate; he never met a lap he didn’t like. I pictured him alone with no one to snuggle under a buzzing fluorescent light, wondering why he’d been abandoned. I pictured myself in his place, spending weeks alone, forced to repeatedly gag. I thanked them, left, and never returned. I wanted him to learn to eat, but I could not let him go through that.
At the time, I felt such guilt for failing to help him. Now, however, I’m so relieved we made that choice. What I’ve learned in the five years since then is that parenting Edmund boils down to one major issue: Do I want to change my son so he can fit into the world, or do I want to change the world so it accepts my son as he is? I have learned I should strive for the latter.
When Edmund was born, I was thrust into the unknown. The main advice my husband and I received was to seek out other parents of children with similar medical issues. This is, indeed, useful advice. We did, and it was absolutely helpful. Our new community provided a crucial sense of belonging and offered tips on everything from navigating education systems to choosing the best wheelchair. One of my closest friends is mother to a kid with cri du chat syndrome. I don’t know what I’d do without her.
But caring for an infant with disabilities was entirely different from caring for Edmund’s brothers. With them, I benefited from parenting knowledge handed down through generations, and I could draw from my own childhood experiences. I regularly observed parent/child dynamics in other families, and I absorbed endless parenting advice in conversation, magazines, and newspapers, not to mention fictional books, movies, and TV shows.
I had no such knowledge of how to parent a disabled child. I knew no disabled peers growing up; they didn’t attend my elementary school. We were at sea, as we were told Edmund would always be “profoundly disabled.” I was already overwhelmed, imagining a future centered entirely on caregiving, when a doctor in the NICU took us aside and suggested we institutionalize him. Clueless as I was, I felt this advice was outdated. But experts seemed to validate the worst voices in my head, the ones I was ashamed of: Let me go back in time. I didn’t sign up for this. I slowly realized that being a parent is signing up for this. Eventually, my husband and I sought advice from therapists and teachers, but even they didn’t have access to long-term data, just a few decades of small scientific studies.
When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.
I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.
This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.
But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”
These insights were invaluable to me as I navigated these new waters. Disability rights advocate Kim Sauder makes this important point: Less than 50 years ago, we were regularly institutionalizing disabled children. The idea that disabled children should be welcomed into their families, embraced for who they are, and cared for at home is still so nascent.
While we have come a long way since the days of institutionalization, we nondisabled parents should not treat our children as if they are broken people that need fixing. From listening to disabled people, I no longer see Edmund as fundamentally imperfect. He is simply Edmund, a loving, giggly, inquisitive, stubborn, extroverted kid who needs lots of support to find ways to eat, play, move, and communicate. I am far from the perfect parent, but I now see it’s my job to ensure that he gets a good education, feels loved, and has as much agency as possible, and that the world treats disabled people with dignity and respect.
My children, nondisabled and disabled, are not mine to mold. I wouldn’t subject my bookish nondisabled son to unwanted daily sports training; nor should I force Edmund to stop repeatedly tapping his head for comfort. Accepting Edmund, and supporting him to be himself, means I stop acting so much like a coach, and more like his mom.
Five years later, Edmund still doesn’t eat orally. Sometimes he’ll grab a piece of food, take a bite, and make a horrible face. Sometimes he fakes eating to be sociable, picking up food and passing it near his mouth, then dropping it on the floor. (This is both adorable and messy.) And though I would love to make him big, delicious meals, he’s not into that, and that’s OK. He doesn’t have to love what I love. He’s thriving in his own way.