This is what strangers see when my adult daughter Rachel and I stand in line to order bagels one October afternoon: an unsmiling, gray-haired woman and a younger, larger woman (child?) wearing an orange Special Olympics T-shirt, pumpkin earrings, strands of beads, bracelets halfway up her arm, and a ring that fits only up to the first knuckle. The younger woman’s loud voice and gait, her T-shirt and her bling, broadcast that she is different.
If they come close, this is what a stranger might hear the older woman say: “One question, Rachel. The server is busy. . . . These people are strangers, not friends.”
Rachel and I are a spectacle when we’re in public, all color and noise and disruption. My daughter’s loud voice and insistence on chatting up anyone who looks her way embarrass me. She opens with a friendly greeting—“Hello!” or “Cute baby!”—and then asks her chosen mark questions about takeout menus, or requests their email address, or invites them to an upcoming basketball tournament in April (though it’s already fall). Once she begins, I can’t stop her, because she’s been taught that she has rights and no one can tell her what to do, not even her mother. If I try to redirect her, she’ll elbow me and say, “I’m talking.”
I wish so many things for my daughter: That she would FaceTime me once and not eight times a night. That she would stop fighting with her roommate. That she would floss her teeth, wear sunblock, and treat the people who help her with respect. I wish she would understand the repercussions of overeating and stop saying “ain’t.” This last wish, like many others, says more about me than about her.
In a novel I read a month ago, a woman approaches two strangers in the woods beside her house and sees a “damaged child” and an aging man. Coming closer, she sees that the “child” is not a child but a grown man with Down syndrome. She wonders what it must be like to “be a family with such a child” and tries to imagine their pain or love or resilience. “Did they ever grow numb to the disappointment?” she asks herself. “Did they ever grow immune to the daily tug of regret, the wish, hour by hour, that the poor kid had been formed otherwise?”
Because I admire the author of this novel, I tried to believe these thoughts came from the character and not from the writer. I closed the book and waited for the hurt to subside.
That was when I thought: This is how people see me. Not just strangers but my friends. It’s how they see Rachel, who does not have Down syndrome but, like the son in the novel, has been “formed” differently than most.
But I have not grown numb. I do not feel disappointed. I do not wish she had been “formed otherwise,” in a manner more acceptable to those who gape and then look away, who perhaps see her as a noisy, oversized child, a burden, a source of unending sorrow.
It took me a long time to get to this place—more than twenty years.
When Rachel was born, I was living in New Jersey with my husband and four-year-old daughter. Rachel’s birth was uneventful, but from her earliest days, I sensed something odd about her. She slept for long stretches and rarely cried. Her eyes jittered, and she could not seem to track moving objects. When she was six weeks old, we took her to a pediatric neuro-ophthalmologist who told us she had optic nerve hypoplasia and was blind—at most she might eventually see light and shadow. He did not mention the constellation of other disorders that often showed up with this so-called “accident in development,” such as cognitive impairments and seizures. So we waited. It was all we could do.
Contrary to the doctor’s predictions, Rachel’s vision improved, but just before her first birthday she had infantile spasms, a sign of brain malformation. The treatment for this disorder made her swollen and sick. Seizures followed, and the delays in her development grew more significant. I wept for all the things she would never experience and what I feared was in store for her. I cheered when she reached a milestone, like beginning to walk at the age of two, and when the lags grew more significant, I wept some more.
I did not like being told she was lucky to have me as a mother—something I heard a lot—or that I should stop fretting because a cure would eventually be found, or that she was one of God’s special children and had been sent to teach me something. (What? That no one ever died from crying?) No one took me aside and said: Work hard on her behalf, and one day her life might be better than you can imagine. It was just as well, since those words would have felt as false as the others.
At the end of Loving Rachel, the first book I wrote about our family, Rachel is four: an utterly adorable little girl with curly hair and lavender wire-rimmed glasses. The first indication of her “severe linguistic dysfunction” was apparent at this time because, although she was intent on talking to strangers, her attempts at conversation consisted of a little loop that always began with “My father said . . .” Strangers would crouch and listen, charmed because she was so forthright and unstoppable—and hardly more than a baby, or so they believed. I didn’t see all that was foreshadowed by those interactions, or the ways her adorable appearance sheltered her and allowed her to reel in people with this “abundant and disordered” language (words from a speech therapist’s report). Though I tried to discourage these interactions, the kindness of the people she waylaid lulled me into believing she would always have a place in the world. Now I see it was her prettiness that elicited such a response: From my father. From the pediatric neurologist who said, “She certainly is a pretty child; that isn’t one of her problems.” At five, Rachel was still a beautiful child, but now that perceived value came with a sigh and an unspoken if only, as if such loveliness were wasted on her.
I never thought, If only. Rachel was someone, a person. How could I begin to understand her if I was yearning for her to be someone else?
Our family moved to Pittsburgh, Pennsylvania, when Rachel was eight. As years passed, when I got together with old friends who’d known Rachel as a toddler, they were interested in updates on her older sister—a filmmaker, teacher, activist, and wife—whose professional and personal life was always changing. Few asked about Rachel, whose life was also changing, dramatically at times, though in very different ways.
When Rachel was fourteen, her sister left for college. My marriage had ended five years earlier—not because of Rachel—so it was mostly just me and her. Though medication controlled her seizures and her vision was far better than anyone expected, she was stormy and miserable, with unquenchable needs and no ability to manage her emotions. Always outgoing, she continued to try to reel people in, but strangers were no longer so amenable. She could not relate to anyone and had no friends. It was nearly impossible to find activities or toys that might engage a child with limited vision, poor fine-motor skills, and cognitive impairments. At home, with almost no way to amuse herself, she engaged in constant, attention-seeking talk.
I’d taken to heart the advice I’d gotten at her school to make Rachel as independent as possible, so I insisted she dress herself and brush her teeth. Asking her to put on a shirt was enough to set her off, and she would scream and hit me until I made her wait outside for the school bus—pushing her out the door to keep from slapping her.
Sometimes, when she was briefly engaged stringing beads (the only activity that soothed her), I tiptoed to the far side of my bed, lowered myself to the floor, and sat. Eyes closed, I felt my heart beat steadily and breathed in and out. If I dared to rise, she’d hear, so I stayed still as long as possible.
There’s a presumption that to raise a child with disabilities makes you brave. I wasn’t brave. I wasn’t always a stellar mother, either. But I studied my daughter as if she were an ancient text to see what was beneath the chatter and the rage. She enjoyed Special Olympics sports, especially swimming, and she liked school. When I visited her classroom and stood where she could not see me, I could tell she was happy. I began to see the way a quiet classroom quieted her. When she sat stringing beads, she focused intently on the task, finding the patience to work the plastic cord through the tiny hole.
Sometimes, amid the endless, maddening, disordered talk, she made her feelings for me known. “I hope you die,” she said one time, smiling. A child in her class had died. Maybe she didn’t fully understand death—I know I don’t—but the meaning was clear: Get me out of this house and away from this lady who’s always telling me what to do.
At the end of that school year, the teacher asked each child to name their biggest wish. “My own apartment,” Rachel said.
The waiting list for residential placements was brutally long, but I never gave up—for her sake, and for mine—until, at last, when she was twenty-two, Rachel was able to move into a “community living arrangement” with twenty-four-hour staffing. That same month she began doing packaging and assembly work at a nearby site where job coaches were employed. The residential staff told me mornings were often as difficult as they’d been when she’d lived with me: She cursed at them, and if her roommate closed her door, Rachel threw herself against it naked, enraged at being shut out. But over time she matured and learned new skills. With the structure of a job and activities outside the house, she began to have the kind of life she wanted.
Now that I didn’t share my household with someone who both needed and hated me, my life changed just as profoundly. I could read the newspaper over coffee in the morning, build and nurture relationships. Mostly, though, I felt the sheer pleasure of just being.
Rachel was always happy to see me when I picked her up for an outing, but for the first year or so, whenever I returned her to her apartment, she seemed afraid I was going to bring her back to my house. Each time I walked her to the door of her building, she said, “You don’t need to come inside.”
I’d never succeeded in teaching Rachel to use the phone at home, no matter how many adaptive models I’d asked her to try. Now comfortable with all phones, she called me several times each night. She began absorbing the desires and syntax of those around her: She wanted a Fitbit, a baby, army pants, surgery, gel nails, Mountain Dew. For a while she ended all her sentences with “God willing.” Then came: “My question to you, personally,” and “Don’t quote me.” “I was pissed” had a long run, followed by “I was like, ‘Oh shit.’ ” Before long, though, when I asked what she’d done at work that day, she could answer in a very precise way, telling me, for instance, that she was working on flood guards and describing step-by-step exactly what she’d needed to do. She had a social life at her worksite and liked to tell me about her boyfriends: the one she planned to marry, and the one she kept “on the side.”
When the iPad came on the market, Rachel’s sister suggested we buy one for her. Right away she began to play games on it. She liked solitaire and taught me how to play Candy Crush. As soon as we got into the car, she’d ask for my phone and swipe to the folder with games. One night we were in the car together, Rachel playing Bingo Blitz on my phone, and Marketplace came on the radio. When she heard the drumbeats of the show’s theme song, she perked up and said, “This is Marketplace.” Then she went back to her game.
She’d been living in her apartment for ten years at that point. Her life is great, I thought that night in the car. It’s so great.
While driving, I tried to remember all the people who’d worked with Rachel over the years: the occupational therapists, speech pathologists, neurologists, psychiatrists, and psychologists; the endocrinologists, pediatricians, orthopedists, and teachers. I thought of the years when she saw behavior-management specialists and went to a dual-diagnosis after-school program; when she had the adaptive-physical-education classes with coaches who taught her how to swim. An optometrist put prisms in her glasses to help her get the most out of her vision. A supports coordinator found her funding for a summer camp with an educational component, and later another worked relentlessly to help find Rachel a place to live. I thought of the curly-haired caregiver who was so devoted to her, and the audiology graduate student who took her on outings in their Jeep. There were job coaches and transition specialists and others I could picture but no longer name: the woman who in Rachel’s early months taught me how to stimulate my then-blind daughter and brought her toys, beeper balls, and scooters she could ride on belly-down; the grandma in Maine who taught her to sing “One Lonely Oyster.” I wanted to find each of these people so I could say, Hey, look at how she’s turned out.
Her life was really great.
I never saw Rachel as a “damaged child” or felt a “tug of regret,” but that night in the car was the first time I fully appreciated her successes.
On Thanksgiving Rachel comes to my house and sits at the table with the rest of the guests. Of course she does; she’s my daughter. She loves getting dressed for the holiday and sleeping over. It isn’t easy: She gets amped up in a house full of people, and while I’m too busy in the kitchen to intervene, she gloms onto one guest or another. Later, at the table, while conversation fills the room, she presses to make her opinion heard and then takes over, going on and on like a blowhard uncle.
“Please don’t sit me next to Rachel,” a regular Thanksgiving guest asked me when I was setting out place cards.
Another thanked me after the holiday and then widened her eyes and said, of Rachel, “She is . . . challenging.”
I feel sad that this holiday is the only experience many of my friends have of Rachel. The staff at her house, trained in the principles of self-determination, say it is Rachel’s right to seek attention. They give her the leeway to do as she pleases. I, too, believe there ought to be space for her in public places, with her booming voice and jingly bracelets and mysterious snippets of conversation. Still, I try to manage her behavior because I believe that, without any restraints, she’ll be even more excluded. It’s also my sensitivity to the effect my daughter has on others. I continue to wrestle with this question of how much to manage Rachel’s behavior. I think I always will.
Meanwhile I’d also like to manage the behavior of the guests at my table and the diners at the restaurants, so they would listen politely to Rachel and, when they’ve had enough, learn to say: Nice to meet you, and now I’m going to eat.
I can’t be upset with my friends. They were not born into a world in which people with disabilities were seen. Growing up, I never went to a school or public space where someone like Rachel was allowed. Had I not been changed by my daughter’s birth, what might I have thought while waiting in line for my bagel behind that serious older woman and her loud, curly-haired daughter?
Oy.
Like the character in the novel, I could not have imagined that there are many versions of what we call a “good life,” or what it takes to support a person who lacks the means to create such a life for herself.
These days my time together with Rachel is on Sundays. We’re regulars at the bagel shop, where we go after her Special Olympics basketball practice. We take our sandwiches to our usual seat by the window with a view of the passersby, and Rachel talks about what’s on her mind. Marriage is once again a big topic. When she asks if I will come to her wedding, I say, “What do I always tell you?”
“You need to meet him first,” she says.
At present her intended is Montell, whom she met at basketball practice. She asks me if she can have sex (“If it’s something you want,” I reply), if she can have a baby (“They’re a lot of work,” I tell her), and if she can bike to my house (“Never,” I say).
After lunch we drive back to her apartment. As soon as our seat belts are fastened, she turns on the radio to catch her favorite show, Wait, Wait, Don’t Tell Me. A different voice than usual comes on the air, and she asks, “Where’s Peter Sagal?” My answer—“He’s on vacation”—satisfies her. She opens the glove compartment, where I keep chewing gum, hands me a piece, and takes three for herself before opening a game app on my phone.
My daughter is nothing like the sweet boy-man depicted in the novel. She is not a simpler version of someone like you or me. To define her by saying she does not read or write or reliably know the difference between the US and the state of Pennsylvania, where she lives, doesn’t get close to describing her as a person.
She cannot tell left from right, but her spatial sense is fantastic, while mine is nonexistent. One night, when the road to her house was blocked and I was in a tizzy, unsure what route to attempt, she hitched her thumb to show me which turns to make and got us back to her apartment.
If I ask her what she ate for dinner last night, she often cannot tell me. Trying to learn about an outing she took with her sister the day before can be difficult, at times impossible, even with ample cueing. If she complains that her ankle hurts, it might be that her ankle actually pains her, or it might be that her roommate twisted her ankle and is wearing a boot, which Rachel envies.
And yet she once asked, apropos of nothing, “Did Daddy do plumbing?”
Her father, who died in 2004, tore apart the bathroom of the house where she lived until she was eight.
On another day, in the car: “Did Daddy drive a motorcycle?” There was a motorcycle in the garage of the house we left in 1991, not that he ever drove it.
No one in her house knew these details, and neither her sister nor I ever mentioned them. I’d forgotten both until she’d asked.
When we arrive back at Rachel’s apartment, we stop to chat with the direct-support professional in the house that afternoon and then go to the finished basement, where an arts and crafts area has been set up, mostly for Rachel. She likes pencils, pens, glitter glue, fancy paper, and other art supplies—the same kinds her sister likes. We sit together for a while, doing color-by-numbers, and completing a puzzle on her iPad.
I’m not sure any of my friends can imagine the pleasure I take in playing games with my daughter. I suspect some think of Rachel as a bad break, a tragedy I’ve endured. I love these Sunday visits. It’s not just that her behavior is more “appropriate,” though it is. It’s that being with her this way lets me see into her life and feel its satisfactions.
When it’s time for me to leave, I walk upstairs. Rachel follows. At the door I open my arms wide and hold her close. After our hug, she backs away, places her hands on my shoulders, and arranges me until I’m standing directly in front of her. Then she kisses me on the lips.
