Family | Parenting

The World Doesn’t Bend for Disabled Kids (or Disabled Parents)

My kids have been kicked out of many, many places for being different—just like I was.

I was a difficult kid to raise—my mom tells me this a lot. I was confrontational, stubborn, and quick to anger, all starting at age one and a half. I have bipolar disorder, so you could say irritability is symptomatic. I now have a great doctor and outstanding medicine, and enough self-awareness to know I need both. When I was a kid, a difficult kid, my mom sought help from one of the best child psychiatrists in the country, who happened to live in our mid-sized Southern town. At age four, I’d been kicked out of our preschool carpool, and my mom was both ashamed and worried. She knew we needed help.

Years later, when I was in high school, she told me the kicked-out-of-carpool story. I thought it was a riot. I knew those moms, who’d fired me from carpool. They were unmitigated snobs. They’d kicked me out because I was too disruptive. I could just see them, with their pinched faces, afraid I’d taint their precious offspring with my weirdness. It was easy for me to laugh: I was off to a top college in the fall; my future was bright. I couldn’t understand why my mother still cared about what had happened in preschool.

She tried to make me understand. The carpool story wasn’t funny to her at all. It was gut-wrenching. It was the equivalent of a Mean Girls blackballing from the lunch table—except instead of her being ejected, it was her child.

Now that I’m a mom, I realize how much more hurtful it is to have someone attack your kid. The other moms had made mine feel as though I was entirely to blame. They’d had a litany of reasons: I talked too much in the car. I wouldn’t sit quietly. I wouldn’t stand still in the driveway, but bounced around too much.

I’m sure I did all of the things that the other moms complained about.

My own kids do those things today.

*

When my mom dumped her feelings on the child psychiatrist, she was worried about me. “What’s wrong with her? How can I fix her?”

The psychiatrist said, “Your daughter isn’t the problem. They made you feel like she is. Don’t let them.”

“How?”

My mom needed something to hold onto. Fortunately, the psychiatrist had an answer. There was a simple test. Did she put other kids in danger? Did she put herself in danger? Did she damage property?

According to the psychiatrist, if the answer to all three of those questions was no, then the punishment I received—banishment—was too severe. “Kids aren’t all the same,” she said. “And we can’t expect them to be. Especially when they’re four years old. We have to give them some leeway.”

“What do I do?” my mom asked.

“Find better people to carpool with,” the psychiatrist said.

*

It’s summertime. I’m a grown woman with two children, ages six and eight, a mother like my mother. In the last three years, my two kids have also been kicked out of many, many places for being different.

I’m watching my younger son, who is six years old, take a swim lesson. It’s early, and the pool is empty except for us. I set up these lessons on purpose. Six wants to be on the swim team with his brother, Eight. But first I need to preview what swim team will be like—hence the lesson. If you’re disabled (like me) and if you have disabled kids (like me), then you probably understand the concept of previewing. Previewing can be very important. People like me, like Six and Eight, don’t do well with surprises.

Learning how to swim is not the problem. Six can swim fine. He has to learn how to be in a group, how to listen to the coaches, how to follow directions, how to keep his goggles on, how to keep his head above water when the coaches are talking, how to stay in his lane, how to do all of the things that other kids seem to know how to do naturally. But my kid doesn’t know how to do any of these things naturally. He will forget what you told him to do the moment after you told him to do it. And he is aware that he forgets.

Six is young, but he knows that he is different.

According to my father, I was much like Six when I was starting swim team. My dad had to find coaches who wouldn’t get angry with me. It was hard, but he did find them. “Once,” my dad said, “there was this swim coach, and you stood there, and you were six, and you told him just how the world was. And the coach listened to you talk, and then he said, Katie, that’s amazing.” I recognized in my father’s story something else that I’ve felt, too—there’s a special joy when another adult sees my kid for who he is, and not for what he fails to do.

As I watch the swim lesson, I want to intervene. Six is talking. He’s stopping his strokes. He’s distractible. He’s explaining things about the world to the coach, a woman in her early twenties, things like electromagnetic pulses and gravity. But I don’t intervene. I think, If she’s a good swim coach, she will know what to do.

I’ve paid for a private lesson for a reason. We’re here at the pool all alone for a reason. We’re here so she can know my kid, understand him. So she can see where he is brilliant and where he is struggling, what makes him unique and what makes him ordinary. She needs to learn how to bend around him. After all, he bends all the time. I paid money so that he doesn’t have to bend, here, while he’s learning.

I can hear the tone in her voice. The impatience, edging toward something worse. And so I watch closely for the moment when the tone crosses that line. I will allow impatience. I will not allow meanness.

He has said sorry to her no fewer than ten times. His apologies come in response to her aggravated redirection of his behavior. When she gives a command, he says, “Sure!” He’s cheerful, compliant. He isn’t contrary. He wants to make her happy. But when she asks an open-ended question, he launches into an exposition about water pressure and depth, and I realize then that I’m not sure she knows he just turned six. He’s tall, like me. His vocabulary is exorbitant. He could easily pass for eight or even nine if you didn’t know.

Last week, Six couldn’t even swim across the pool. This week, he launches himself off of the diving board into the deep end of the pool like he’s been doing it forever. His father and I don’t know why he decided to start swimming, except that he simply decided. That’s how he’s always been. Once he decides he wants to do something, he will do it. The inverse is also true.

*

Conferences with Six’s teachers are nearly unbearable. His Kindergarten teacher called us in for a special conference halfway through the year. She said, “I’ve been teaching for thirty years, but I’ve never had such a difficult student. I’m at the end of my rope with him.”

I felt crushed. What did that mean? Did that mean she’d given up on him?

What does it mean when you say to a parent that in all of your years of teaching, no student has ever been so difficult?

She said, “I can’t make him do the things the students are supposed to do.”

As she spoke, I wrote notes. I couldn’t talk. I let my husband answer, with mild nonsense words that appeased her. All I could think was, That’s right, you can’t make him do things. All I could think was, Why would you want to make anyone do anything?

You don’t make people you love do things. And you don’t force children to do things. You work together, you explain, you teach. Maybe I thought those things as I took notes because I know how much my kid wanted to make this teacher happy. He told me that all the time. “I want to make her happy, Mommy.” He just didn’t know how.

*

During the swim lesson, the coach is trying to teach Six how to do side-breathing. He’s afraid to put his ear in the water sideways. “It’s easy,” she says, demonstrating. “Just do it like this.”

He shakes his head. Her words don’t make sense to him. “Easy means easy. Hard means hard. This is hard.”

The coach looks confounded. I smile. I deeply admire both of my children.

Six says again, “Like I said. Easy means easy.” Then, suddenly, he starts to cry. “Side-breathing puts sixty pounds of pressure on me.”

Well, I think to myself. That doesn’t sound easy at all.

“Just try again,” the coach insists.

He says, through tears, “Quit bossing me around.”

The coach laughs, finally. “That’s my job.”

I realize that Six’s tears have finally put her at ease. She can deal with fear and weakness. She can’t deal with my child’s strength.

*

On the first day of summer swim practice, Six has trouble remembering what to do, despite all of the private lessons. I’m not worried. Sometimes it takes him a couple of days to get the feel of new things. We’re members of this small pool club, and we paid to be on this swim team, and he’ll have a chance to get it right.

At home, I sometimes have to coach him through basic tasks, like getting dressed in the morning or brushing his teeth. Sometimes. Other times, he does tasks the first time I ask. When he forgets, he does what we call “doodling,” getting off track, distracted by the smallest things. But always, he means well. When I find him doodling, he jumps back to what he’s supposed to be doing, apologizing, trying to get it right, trying to please me and his father, aware that he’s made a mistake.

He’s aware.

On the first day of swim practice on our summer swim team—which is not, it is important to note, the Olympic qualifiers—Six has trouble remembering the coaches’ instructions. Which stroke? Swim both ways or get out and walk around? Use the block or not? Which lane? There is a lot of screaming going on, and a lot of kids in the pool, and it is his first day. Swim practice is, objectively, distracting.

I’m sitting on one of the lounge chairs, sunglasses on, acting disinterested, but not at all disinterested. I can’t take Six (or his brother, Eight) to any new place without paying close attention to the care adults take with them. I’ve been too well trained by the cruelty adults carelessly hand out to kids, and kids like mine in particular. I trust very few.

It turns out I’m not wrong to be mistrustful today.

Quick as a whip, Six is standing on the pool deck, and a coach, another young woman in her early twenties, is facing him. “You’re supposed to be in that lane!” she yells, pointing at the pool where other six-year-olds flop around like puppies.

“I’m sorry!” Six says, over the screaming of coaches and the splashing and hollering of children.

The coach is befuddled by his ready apology. Like so many others in Six’s life, she figured his misbehavior was intentional. She figured he was goofing off on purpose. She was wrong.

“What is wrong with you?” she demands.

My son is far too literal for such rhetorical questions. He bursts into tears. He says, “I forget things.”

At that point, for me, it is either murder or cry.

The coach is taken aback by his words. She leads him back to his lane, and he hops in. I stand, walk to the black metal fence hemming in the pool, grip two of the square metal posts, and weep behind my sunglasses.

In retrospect, I should have pulled Six from the pool that day. I should have. I should have followed the doctor’s advice to my mother thirty-five years ago and found someone different or better, but I didn’t. I wanted my kid to have the joy of being on the swim team. He was so happy to be there. He wanted to make the coach happy. So I let him stay and finish practice.

*

I’ve never liked the “disability parent” genre. It seems like a cottage industry, these parents writing about their disabled kids. So many essays, books, and blog posts eager to overshare and, often, make money off their kids’ disabilities. So many self-help gurus, eager to exploit the desperation of other parents of disabled kids. At best, the genre can feed a circle of self-congratulatory bullshit, where parents talk about how great they are for parenting their children. At worst, it creates monsters: parents who feel justified emotionally or physically abusing their disabled children because their disabled children make them miserable. They describe how awful their lives are, often on social media, and a chorus of other parents support their ableism—sometimes to the point of enabling more abuse.

If you take a look at the titles of the popular disability parent memoirs (this is an easy internet search) the titles suggest similar themes. Themes of damage: “chaos,” “madness,” “broken,” “price,” “silence.” Themes of voyage: “search,” “journey,” “descent,” “struggle.” And themes of overcoming: “through,” “behind,” “save,” “hope.” You can play a word game with these words: “Journey through chaos.” Mix them up, add some familial relations, and you have a title.

For years, I’ve wanted nothing to do with the genre. How would I feel, I always thought, if my own parents had written about me? I believed myself lucky they were scientists and luddites, with no desire to blab about their crazy daughter on the internet. And that I was lucky enough to grow up before Facebook.

Does my own disability shift the genre, though? Bend it, just enough, to make it palatable? I don’t know, not yet. I don’t think most of these other parents really set out to exploit their children. I think most genuinely struggled, and writing eased their pain. But I do think it’s harder to relate to your kid’s disabled experience when you aren’t disabled yourself.

*

Two days later, on the third day of swim practice, Six seems to have the routine down. He jumps directly into the proper lane. He does everything the coaches ask, it seems. He guppies around with the other six-year-olds, swimming as terribly and adorably as they do, back and forth, back and forth. He jumps out, joyfully, eager to do it again, and I am so happy for him. He’s done it.

As I stand back in the shade of a pool umbrella, admiring how well Six has adjusted to the chaos of swim practice after only three days, one of the coaches comes over to me. Let’s call this coach Regina George. Regina is the same coach I hired to give Six private swim lessons before swim team started so that Six would be comfortable with the routine of swim practice. I paid Regina the cost of a small car to give private swim lessons to Six and Eight and preview the swim team every single morning for two weeks. I took time out of my work day so that I could drive them over, observe the lessons, entertain the one kid while the other was swimming—all to ensure swim team success.

I also hired Regina so that she could get to know Six and Eight. I figured if she spent time with them one-on-one, she would become accustomed to their quirks. I figured if she got to know Six, for example, she would see his gorgeous spirit in addition to his challenges. I was wrong about that.

Never underestimate a human’s desire to make her own life easier at the expense of a disabled person.

Regina approaches me fifteen minutes before the end of swim practice and tells me that Six is no longer welcome on the swim team. I’m stunned, distraught, but I hide my reaction. “Why?” I ask calmly.

“We all met and decided together,” Regina says, referring to the entire coaching staff. There are at least ten coaches.

I let her talk while imagining all of the coaches who are standing around the pool having a secret meeting to discuss the unworthiness of my child.

“He requires too much individual attention,” she says. “It isn’t fair to the other kids.”

Then she says that in order to be on the team, Six needs to prove that he can perform a list of tasks that I have never heard of before. I tell myself that I will not cry in front of a twenty-something swim coach. I get my lawyer out.

“On the website, the prerequisites are listed. It says that, to be on the team, a child needs to be able to swim one lap of the pool unassisted.”

Regina shrugs.

And that is that.

I put a huge smile on my face and extract Six and Eight from swim practice. I don’t tell them why we’re leaving early. They don’t care. They chatter with each other on the drive home. As I drive, thoughts churn through my head, a litany.

What do they see when they see my child? They couldn’t give him a third day to try to get it right? Have they never before encountered a child who isn’t the same as everybody else? I paid this coach thousands of dollars to teach my children how to be on the swim team, and now she is surprised by who he is?

Now, today, at eight o’clock in the morning, when the water is freezing, and he climbs up on the starting block like a superhero with skinny arms, so brave, and jumps into the water and does the very best that he can—which is, if one is paying attention, not that different than the very best that most six-year-olds can do, because most six-year-olds aren’t at a pool at eight o’clock in the morning—now is when he is kicked off of the team? Now, when he is here and he is trying?

He can never know about this small cruelty, I decide.

Is it small, though?

When I was a child, how many things, how many other groups, how many teams was I thrown out of that my parents never told me about? How well did my parents kept those secrets from me? My first-grade teacher once told my parents that she wanted me out of her class because I was too much for her to handle. Her description of me is nearly identical to how teachers now describe Six to me. Stubborn. Noncompliant. Talks out of turn.

Curiously, in second grade, I was my teacher’s favorite student. Until the day she died, she would send me cards on my birthday and hug me if we ran into one another in the grocery store. Her name was Mrs. Roberts. Mrs. Roberts made me feel like I wasn’t made wrong. On the contrary—she made me feel like I was perfect. I still remember how she made me feel, even now, a lifetime later. I want to surround my children with Mrs. Robertses.

*

In the eighth grade, I was severely depressed and acted out by doing things like correcting my teachers in class—I spent half of the year sitting on my ass in the hallway. My perfect GPA notwithstanding, no one knew how to make me comply with classroom rules. Did I damage property? No. Did I hurt myself? No. Did I hurt others? Well, except for the one time I stood up to a bully and got punched in the face, no. But I was mouthy (like, really mouthy), and noncompliant, and I cut class. I hung out with troublemakers, because the Regina Georges at my school didn’t want to be my friend. Being severely depressed in eighth grade is even worse than it sounds. When a kid on my school bus committed suicide, my parents took my bedroom door off of its hinges, they were so worried about me.

Then one day, the vice principal, this cartoonish redneck with a thin black mustache, tried to have me expelled after a locker search. During the locker search (a Regina George reported me for having contraband in my locker), he’d found a pump bottle of hairspray and insisted it contained drinkable ethanol. He called me to the office. He called my mom in. He gestured at the purple bottle. “This is an illicit beverage.”

My mother stood, leaning over his desk. “Drink it, then.”

By the time I was thirteen, my mom had obviously figured out how to deal with adults who didn’t get her kid.

*

When my kids were first diagnosed with their disabilities, an endless list of long words and initialisms, I immediately called my mom. She told me to find a counselor for my kids. She told me about the wonderful child psychiatrist who’d helped her. She described first meeting the doctor, how my mom had one request: “I just want her to be like the other kids on the playground.”

“She’s never going to be like the other kids on the playground,” the doctor said, shaking her head with a smile.

“But all of the other moms are going to think that my kid is a bad kid and that I’m a bad mom,” my mom said.

“That’s right,” said the doctor. “They are. That’s exactly what they’re going to think. And there’s nothing you can do about it.”

My mom told me that story the day I realized my own kids were never going to be like the other kids on the playground. I realized I’d been spending so many years avoiding the busy playground hours because the stress was too high. I couldn’t bear to see the pinched faces of the other parents as they looked at my kids and thought terrible thoughts.

After telling me the story about her first meeting with the doctor, my mom said to me, “The doctor’s words were immensely freeing, because I no longer cared what anyone thought.”

I haven’t gotten there yet. I still care what others think about my kids—not as much as I did, though. I’m working on it. What I care about most is that my kids are treated well, and that they are happy.

In that, I’m just like every other mom.

*

My kids have been kicked out of summer camp. Fired by piano teachers. Disallowed from group sports and relegated to private lessons instead. Threatened with expulsion from chess club. I live in constant fear that I’ll receive a phone call telling me yet another teacher or coach or instructor has decided to abandon them because they are too wiggly, chatty, rude, or stubborn.

That’s not to say that we haven’t had incredible teachers, coaches, and instructors. We have.

My sons’ first piano teacher moved away. The second one died tragically young. My sons love playing piano. So I hired a third piano teacher. The other day, she quit after only three lessons, saying that my sons “aren’t interested in piano.” After I got over my devastation—the initial feelings of shame, embarrassment, and pain—I recognized her words for what they were.

Bullshit.

I called her boss at the piano school, who told me that I should send my kids to choir instead of piano, implying my kids aren’t disciplined enough for piano. I asked for referrals to other piano teachers. She said she didn’t have any. My kids were students at this studio for years, and the director told us they would no longer have us.

Sometimes I wonder at how the world wears us down; how, if I had fewer resources, I might have already given up. It’s so easy, when so many are telling you things are your fault, to believe them all. What if I weren’t a disability rights scholar? What if I hadn’t been battling ableism my whole entire life as a disabled person myself?

I started piano lessons very young. I was wiggly, defiant, distractible, and chatty. My piano teacher, who founded a preeminent music school and later became far too famous to have ever taught a mediocre musician me, let me stand up during lessons. She let me talk while I played. She let me switch between songs. She didn’t care about any of those things, because she knew how to cultivate talent and joy. That was her job. She was very, very good at it. And because I wanted to make her happy, because she made me feel that joy, I practiced and practiced and practiced, and I became far better at piano than I ever would have with a teacher who wasn’t her.

She wasn’t a “special needs” piano teacher. She was just a good one.

*

When I receive emails and phone calls telling me that my kids are being thrown out of yet another activity, my first feeling is always grief for my kids. After all, I want them to have the chance to learn about the world and to try amazing things. And as each door shuts, those chances seem to slip away.

My second feeling is anger.

I reach for the three questions the child psychiatrist gave my mother.

Is it fair to throw a six-year-old off the swim team because he swam in the wrong lane? Because he swam freestyle instead of backstroke? After all, he didn’t put himself in danger, or other kids, or property. I know those things are true because I asked. Regina and her fellow coaches simply thought Six was annoying. They needed their little Madelines all lined up in a row, and there wasn’t room for Six to stick out, different.

They needed him off the team so badly that Regina lied about the prerequisites for the swim team to get me to leave. She didn’t realize she needn’t have bothered. I would never knowingly leave my kid in a place where he’s not wanted.

The question is simple: Is there room for disabled kids at a piano school? On a swim team? In most classrooms?

The answer, right now, seems to be no.

The day Six was kicked off of the swim team, we got home from the pool, and I sent the kids upstairs to get dressed. Then I called my mom. I asked her to tell me the old story about preschool carpool. She told me that she was at a cocktail party when the Mean Girls of Carpool informed her that I was no longer welcome in their station wagons.

“One of the fancy moms told me how much you’d misbehaved in her car,” my mom said. (She actually used the phrase “fancy moms.”) “So the next day, I went to preschool early to pick you up before the regular carpool mom could arrive, because I couldn’t bear to see her.”

My mom sat in the room at preschool where parents could watch the kids through the one-way mirror. The room was kept dark to make it easier to see the kids. And she sat there crying, watching me, knowing the bad things that the fancy moms had said about me in secret, carrying that knowledge while I played in the room, innocent, unknowing.

When she told me this story, I knew exactly what she’d felt. It’s how I felt when Regina told me about the secret swim coaches meeting.

While Regina spoke to me that morning, I was watching Six jump off the diving block, freezing at 8:00 a.m. practice, doing the very best he could. I was watching him work hard, already knowing he couldn’t come back the next day. While she was listing his faults, he was doing everything he could to make the coaches happy, not knowing that it would never be enough.

My mom asked me, “What are you going to tell him?”

“What did you tell me?”

“I didn’t tell you until you were in high school. By then, you thought it was funny.”

So I won’t tell Six now. I will carry the pain of rejection for my kids, like my own mom did for me. And I will teach them strength, and love, and one day when we’re all older, maybe we will laugh, too.