"Mama hmmmm," Leah chants, the ending sound drawn out into a long hum. She is almost two and a half years old, yet she doesn't talk. True, she has a few significant sounds: Na-na for her pacifier; No-no for her baby brother, Noah; Da is her dad; Mama is, of course, me. But when Leah wants something, "Mama hmmmm" is her universal phrase. She uses it when I am away, so at first we thought it might mean that she misses me and wants "Mama home." But then my husband and I realized that she uses it when I am home, too. She chants this phrase when she is sleepy, when Sesame Street ends, when she wants to go outside to play. She pleads it when she wanders about the house aimlessly, just before she explodes into a temper tantrum. "Mama hmmmm!" she moans, banging her head against the family room carpet, the sofa, my thigh, or, if she is sitting in my lap, backward against my throat or my sternum. "Mama hmmmm!" She can’t use words to tell me what it is she wants, because she has so few.
At our weekly playgroup, I watch the other toddlers with niggling envy. "Up!" one says, raising his arms for a cuddle. "Cookie!" demands another, taking her mother’s hand and leading her to the cookie jar. Leah seldom wants a cuddle. If she's hungry, she points in the general direction of the kitchen, and if I don’t understand what she wants, she bites her fingers. She doesn’t react to the pain she inflicts on herself, but I feel those bites in the hollow of my stomach.
The other toddlers play side by side, stacking plastic cups, undressing baby dolls, pausing sometimes to observe each other. Leah stands alone, outside this hum of purposeful activity. Then she steps directly in front of another child and pokes him. Tilting her head to one side, impassively, she watches him cry. I rush to remove her, and the other mothers glance at each other furtively, waving away my embarrassed apologies with forced smiles. They are afraid of us. They think she needs firmer discipline. But in dealing with Leah, any emotion but modulated happiness acts like oxygen to her fire. They don’t understand us, the other mothers, yet their judgment swells into the spaces between us, threatening to shove us out.
"Normal is only a setting on the washing machine," says my kind pediatrician when I confide my worry that Leah is unlike other children. He pats her curly hair. "All babies develop at their own pace." But my unease deepens week by week as I watch my daughter struggle to communicate like the toddlers in our group. I know something is wrong, and I am afraid.
I consult a developmental pediatrician, who refers Leah for testing. The specialists we see play pat-a-cake with Leah and observe as she attempts to assemble stacks of blocks. They ask her to point to her nose and eyes, and encourage her to use words to identify simple objects. She is too young, the specialists conclude, for a definite diagnosis, but they all agree that she has Communication Delay, a label qualifying her for services. Until she is old enough to attend school, early childhood professionals will come to our home regularly and help me learn how to reach her. Maybe, I think, they can help me develop coping skills myself. At least someone will be in the house with me once in a while. My husband, a physician, works long hours and is exhausted at the end of his day. Our younger child, Noah, is left to fend for himself, staying out of the way in a far corner of the living room during his sister's tantrums. I don’t have the strength to tend lovingly to both children, and sometimes I want to scream in frustration. A good mother, I think, would be able to cope. I am not a good mother.
Sitting cross-legged on the purple carpet of her bedroom, Leah deals child-friendly playing cards into ragged rows of three or four, caricatured fish or dinosaurs grinning up at her. Onto each card she places a small toy—the miniature school buses and vans her brother Noah does not want, DUPLO bricks, small resin animals. Each must be centered. Three years old now, Leah doesn't play with other children. This is how she plays, arranging and rearranging these cards until she is satisfied.
She still puts everything into her mouth—especially something new. I've learned to wait while she sniffs each object carefully, then licks it, running her hands over it, and eyeing it suspiciously. If the item passes her sensory test, she will use it—eat the food, look at the pictures in a book. Touch seems to offend her; she screams and writhes when I brush her thick, curly hair, crying in what sounds like pain and forcing me to wrestle with her on the floor. Clothing, too, can provoke distress; I’m careful to select soft fabrics, and to painstakingly cut away all labels, using sharp scissors and a seam ripper. Leah inspects her clothes carefully before putting them on each morning. If her sharp eyes spot the fraying remnant of a label hiding at a back neckline, she refuses to wear that item. Her occupational therapist explains these behaviors with three words: Sensory Integration Disorder. We are given a clear plastic surgical scrub brush, and I learn how to brush her skin and manipulate her joints to mitigate her sensitivity, but she still reacts to stimuli she considers unpleasant. Which is to say, almost everything. Even so, I like finally having a name to explain her behavior. "Oh, she has Sensory Integration Disorder," I tell guests over coffee, while Leah claws at her neck to protest a new shirt, or shrieks in panic at the sight of a hair brush, or strips naked in the kitchen the minute we come through the back door. But I don’t have the opportunity to tell many people. We are no longer invited to playgroups and don’t mingle much with other kids. I’ve quit comparing Leah to peers; loud, peculiar, and unpredictable, she is in a category by herself among the children we know. With only a few steadfast friends, I’m lonely, but the tumble of my days offers no time for the luxury of introspection or self-pity.
By the time Leah is four years old, her vocabulary has increased, largely through mimicry. She is a happy child—playful and enthusiastic, cooperative and chatty—as long as her needs are being met. But when fatigue and frustration take hold, language gives way to tumult. Desperate for advice now, my husband, Keith, and I decide to take her for a psychological workup at a large, well-regarded institution several hours from our home. Leah enters the building with trepidation, licking the wall halfway down the hall. The testing site does not meet her standards, though, and she wants to go home immediately.
The appointment involves waiting, and the unfamiliar setting, with its pinging bells, antiseptic odors and countless strangers, magnifies her unease. She is easily frustrated by the problem-solving exercises, covers her ears when asked to identify objects in pictures, and curls into a ball on the floor after each test. Her distress is so palpable that my stomach aches. I watch her familiar behavior, wondering if it is as perplexing to these experts as it is to us. Part of me hopes it isn’t, that they'll recognize it as innocuous, nothing more than a particularly difficult developmental phase that will soon end. I desperately do not want these people to confirm my fears. I want an end date, a solution.
After two days of questioning, probing, and observation, Leah is declared mentally retarded, a term I didn’t think anyone used any more. "There is no cure," the psychologist says, avoiding eye contact by making notes in Leah’s chart. "Get to know the services available in your community and make use of them."
On the drive home the children sleep, exhausted, in their car seats, while we whiz through the frozen Minnesota landscape, the tires droning on icy asphalt. Another drone thrums in my own brain, deep and unsettling: I knew it I knew it I knew it.
Before becoming a mother, I worked and volunteered as a mentor, teacher, and house parent to adults with special needs. Back then, when strangers and friends expressed pity for the folks in my care, I was dismissive. "Their lives are every bit as complex and rich as ours," I liked to clarify. "They just live on a different plane." I didn’t admit to anyone that sometimes I felt despondent when I imagined 30 years of dependence upon others. Forty years with a succession of caregivers. Fifty years on a plane tangentially connected to the rest of the world. For a long time now, I had recognized in Leah many of the traits I’d seen among my clients. And now I know, with a certainty that numbs me: My daughter lives on that plane.
In the car, my husband and I don’t discuss the test results. I call the doctor insensitive, and Keith calls him a jerk. Why didn’t he comment on Leah’s strengths, we ask each other—her incredible memory, her clever use of the words she knows? We agree that the dismal setting muted her abilities. But this anger is temporary, a buffer from the shattering grief that is our new truth: There is no cure. Leah will never recover, and we don't talk about it. Together, Keith and I will do our best for Leah, but our individual feelings about her are shameful, private secrets. Mine are full of guilt. I turn my head to look at Noah, snoring softly in his car seat behind Keith. This is his life. I watch Keith’s profile against the winter backdrop of his side window and realize with sickening clarity that I made this his life, too. Thirteen years older than I am, with two grown children from his first marriage, he would have been content without additional babies. I wangled and cajoled until he relented. Thanks to me, he will grow old with unabated responsibility for Leah.
I did this to my family.
The following autumn I introduce Leah to Anne of Green Gables, and now she repeatedly watches two PBS videos based on the spirited orphan. She watches almost nothing else, and soon knows them both by heart. Her attention to detail seems to have encouraged her to talk more; her vocabulary is increasing. One afternoon I find her lying on her back at the top of the stairs, eyes closed, clutching a nosegay of socks. As I creep nearer, I can hear her recite, with a pathos Anne would have appreciated, "The Yaydie . . . of . . . Shayot!" She is acting out a scene in the movie—and quite well, too, complete with props. Awed and proud, I find it is my turn to be speechless.
For her fifth birthday, I make her an Anne of Green Gables costume, including little lace-up boots, straw hat, and a faux carpet bag, just like Anne’s. Although gifts are supposed to be a surprise, Leah doesn’t like unexpected events that disrupt the predictable pattern she has come to expect. Instead, I hang the costume on a hook in her room one week beforehand. She does not look at that wall for two days. On the third day, she glances at it from the safety of her bed; the following day she ventures over to touch it.
The day before her birthday she announces, "Dis is coot! It yooks yike Anne’s."
I know the costume is a success when she asks to wear it to school. We bring cookies for the class, even though she wanted to bake plum puffs, as Anne and Marilla did in the movie. My face aches from smiling. For the briefest moment I feel unbridled happiness.
That night, we invite our best friends to Leah’s birthday party. I have made a banana bread cake, her favorite. She does not want to help me decorate the cake, does not look at it on the special birthday plate. When our guests arrive, and their three little girls enter our kitchen, shyly bearing wrapped gifts for her, Leah collapses onto the floor and screams. We step over her, hoping she will relax if no one pays attention, but her anxiety only increases. She will not have a hot dog; she will not sit with us at the table. The girls open their gifts for her to see, but, eyes running over with tears, she hides her head on my slippers. We light the candles and sing Happy Birthday as she huddles at my feet. Our friends talk over the noise, willing to do anything to help us act like this is normal. I want to lie on the floor with Leah, laden with the burden of this moment, and with gratitude for these rare friends who stick by us, smiling, encouraging us to keep trying.
Leah, Noah, and I spend our summers at a small lake cabin near my hometown northwest of Duluth, Minnesota. Keith comes up for long weekends once a month, but his medical practice keeps him busy in the heat and humidity of Iowa. My sister, Barb, her husband, Terry, and their family have the place just down the road on our old family property. The kids ride their beat-up bicycles back and forth between our two cabins all day long, enjoying the morning sun at our place, then catching the last rays of the afternoon sun on my sister’s beach. We swim and play and eat together. Sometimes Barb and her daughters invite Leah to their cabin so Noah and I can be free for adventures on the lake in our paddleboat or on foot in the woods around our property.
"Did you wash your hands?" I ask Leah when she emerges from the bathroom, shorts still in a bunch around her knees. It is early evening, and we have just finished dinner and are relaxing at my sister’s kitchen table. Leah tugs to pull them up, shaking her head. "Please wash your hands," I say in a chirpy, positive tone of voice. "We’re playing cards, and you don’t want to get your bathroom germs all over them."
Her lip quivers. She shakes her head again. I get up to walk her back to the bathroom sink, but before I reach her, she has dropped to the floor in a flurry of flailing arms, legs and howling.
"Time to go home," I say, hoping this tantrum will be defused by my matter-of-fact attitude. I pick her up by the waist, wedge her in the crook of my right arm, and do my best to avoid her kicks and swats. Noah places his hand of cards face down on the table and follows. He slips into his red rubber boots, and I scuff into sandals, tucking Leah’s boots under my other arm. By the time we reach the gravel road home, Leah has grown louder and increased the vigor of her kicking. Her boots fall from my grasp, but Noah stoops to pick them up. He retrieves the barrette she pulls from her hair.
While I struggle to calm her in the safety of our own cabin, Noah curls up on the sofa with our aged dog. An hour later, when my strength wanes, I call to him. "Will you run down to B’s and ask Uncle Terry to come help me? I’m getting tired." I sound desperate and don’t want to frighten him, but he is already climbing into his boots again.
"Sure, Mom," he says, hurrying out the door to his bike and the gathering dusk.
Terry arrives within minutes, and he holds Leah while my sister plays cards with Noah and I rest. The tantrum continues for another hour, Leah’s piercing screams rending the evening calm. A woman telephones from a cabin across the lake.
"Um, is everything all right over there?" She is hesitant.
"We’re doing okay," I lie.
"You should know that I've been getting a lot of calls from the neighbors. They think we should call the sheriff because, well, it sounds like someone is being murdered." She pauses, a very long pause, as if she is hoping I will contradict her. I am unable to speak. "I said I thought it might just be your daughter. Am I right? Are you okay?"
Words come slowly, but I apologize for our disturbance and thank her for her concern. Leah is infamous. I imagine the whole lake listening to us. I wonder if murder could possibly be this loud or last this long.
Leah eventually falls into an exhausted sleep, so my sister and her husband go home. Although bedtime has long since passed, I am actually happy when Noah selects several dinosaur books for us to read together.
"This was a pretty scary night, wasn’t it?" I ask when we finish.
"Uh-huh," he says, looking up at me with his solemn brown eyes.
"Leah has a lot of trouble controlling herself. Her brain doesn’t work like other brains—the way yours does."
He nods up at me from his pillow. "I know," he says.
"She is going to need a lot of help and patience from us. Her life isn’t going to be like yours or the cousins'. But we love her, so we’ll always do whatever we can to help her." I stroke his bristly hair and smooth the comforter. This feels a bit like laying down a life sentence. He is so young, yet so experienced.
He pulls Wow-wow, his disintegrating and much-loved companion, closer to his face, and asks, "Mom, does this mean I’m the big brother now?"
Unable to sleep, I watch the moon rise over the lake as the loons call.
Leah is seven years old, and my body is black and blue from her temper tantrums. A day with fewer than ten outbursts is an easy one. I wear long-sleeved shirts, even in warm weather, so strangers won’t think my husband abuses me. Who would believe a child could produce such bruises?
Afterwards, Leah is always ashamed of her behavior. "Mom," she says, "why I do that?" Her vocabulary now includes a half dozen ways to apologize for her tantrums. But there is no answer to her question, so I stroke her face and tell her I love her.
She has no reason to doubt me, but sometimes, after another stressful day at home, or another public tantrum, I doubt myself. Sometimes I wish I could walk away and leave her for someone else to look after. I feel overwhelmed by her needs, ill-prepared for the challenges she often presents and, more frequently than I like to admit, angry.
Leah and I need to buy a few groceries while Noah plays with a friend from school. She is eight years old now, and doesn’t want to go, but we are out of milk and have nothing for supper.
"Make Daddy go!" she shouts at me, burying her head in the sofa cushions.
But Keith doesn't come home from the hospital until after eight. We have had pizza delivered twice this week, and the man selling processed foods door-to-door won’t be back for another month. I have no childcare options, so I will have to take her with me. Very few people are capable of —or willing to—stay alone with Leah.
I park as close to the door as possible. Leah kicks the back of my seat, bumping it until I open the door to step out, promising to be quick, promising we’ll just get milk, hamburger, and lettuce.
"That will take!" she moans, meaning that this will not be very quick at all, that it will take a while, which is true. Dairy, meat, and produce are in three different sections of the store. She knows this. Her phenomenal memory makes it possible for her to locate anything at any store she has ever been to.
In the entryway, grocery carts are tucked in rows to the right beside the automatic sliding doors. To the left is a Lions Club gum dispenser. This is where Leah stops. She tucks herself into a tight ball of turquoise jacket and pink slacks, face down, knees pulled in to her belly. Her arms lock above her unruly black curls, blocking her ears. When I touch her shoulder, she shrieks.
"Go away! Go away! I don’t wanna shop!"
"Please," I beg. "Please just walk in with me." I stroke her back. She screams, and with all the force of her coiled little body, kicks at me, making contact just below my left knee. The blow rings all the way to my ears, but I can’t wince. If she knows she has hurt me, she’ll hurt me again and again until she is worn out. Then she’ll collapse, weeping, overcome with remorse.
Shoppers entering the store use the door farthest from us, eyeing our crouched forms suspiciously. I have resigned myself to accepting that strangers see me as a weak, ineffectual mother with no control over her child. It’s partly true. I have no control sometimes. What bothers me most is that these strangers assume she is just spoiled, a willful child demanding her way.
A young store manager moves swiftly toward us from his office by customer service. His blue tie bobs on the placket of his white shirt. Before he reaches us, I activate the sliding door with my foot and beckon him. I am crouched beside Leah, who is squealing and flailing her legs. He stops short of the door, back by the oranges and onions, almost too far away to hear. He fingers his name tag nervously.
"Will you please call my husband for me?" I shout.
He cups his ear toward us. "Beg pardon? Do you need something?" he says, remaining at a distance. The door closes and opens again.
"I need you to call my husband," I say, louder this time. I pantomime writing, and he grabs a note pad from his breast pocket. I shout the number to him; he disappears. I blink back tears.
Leah shifts position, making it easier to jab my shin again. This time I succumb, folding in pain just as a middle-aged woman exits toward us through the sliding doors. She pauses a moment before placing a hand on my shoulder. This happens from time to time in stores, at the park, on planes—a well-meaning person reaches out in the midst of our struggle to convey recognition for Leah’s special needs, to encourage me in my demanding life’s work.
"Bless you," the woman says. "Bless you both."
But my shame only deepens. This is my life, I think, remembering the wintry ride home after Leah's diagnosis and the guilt I felt then, an emotion that has never diminished. The kindness of strangers can't cut through the renewed guilt I feel at moments like this, when I am overwhelmed by my inadequacies as a parent to my complicated child. That woman’s blessing isn’t enough to make me feel admirable or righteous. And it doesn't heal the new bruises, already blossoming on my skin.