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In truth, Jeremy's diagnosis carried the weight of the inevitable. For those keyed into the cues, Jeremy had always shown signs of being different. Music, paintings, the moon impressed him; rattles, bottles, the typical baby gear did not. He felt safe with his father, myself, and his grandparents, but he allowed few others into his world. He was not a child who went readily from knee to knee, and by the time other children his age were waving hello, he was hiding beneath his hat or inside my skirts or far away, inside his room.
Jeremy's stance on life became even more exaggerated during his second year. If a person could survive on juice or milk alone, he would have; most solid foods were so displeasing to him that he refused to learn the basic science of a spoon. His strong personal code of likes and dislikes devolved into what, looking back, could only be fairly classified as obsessions—a violently strong passion first for trains and cars, then for hats, then knights, then planes, then trucks, the obsession with cars persisting throughout and above all the others. Though Jeremy danced with the grace of a dove and demonstrated an acute sense of balance, he was never adept at balls or tricycles, at the act of jumping or skipping, at the simplest execution of arts and crafts. And while Jeremyacquired language at a youngish age, he did not use his words as others do, did not string them together to inquire or declare. Instead Jeremy's words were deployed as epithets, affixed to those things deigned worthy of his notice.
Reflecting back, it is all too easy to identify the early warning signs, to organize them on this page. At the time, however, my vision failed me. I focused far more strenuously on my own weaknesses as a parent than on the cranks and creaks in Jeremy's development. I was a stay-at-home mother who earned my income in solitude at night by writing articles for corporations and magazines, and I was a person with a quiet life—a member of no play groups, aunt to no nieces or nephews, a personal calendar absurdly stark and bare. I had, in other words, little to compare my son against, and so I assumed that his struggles were caused by the environment I created, my lack of expertise in the rules of mothering, and my inability to locate the proper key to his world. For a long, long time, I drew no conclusions about my son.
It took an insult from a neighborhood baby-sitter to get the message through. It took my husband, my mother, a conversation with old college friends in a motel miles from home to shatter my delusions and force me into action, into meeting with a doctor and submitting to the exams. And though it should have been helpful to have a name for the thing that was so deeply troubling Jeremy, a diagnosis is far from a cure. The fix for children like Jeremy is, I have discovered, an elusive admixture of trial and error. There is, you are told, no time to lose—neural pathways are settling in, lifelong habits are forming, behavioral tics are taking over—and so you push and push for the right concoction of language therapy, occupational therapy, play therapy, social therapy without ever having a firm sense of ultimate boundaries or goals. What, in the end, are you fighting for: Normal? Is normal possible? Can it be defined? Is it best achieved by holing up in the offices of therapists, in special classrooms, in isolated exercises, in simulating living, while everyday "normal" happens casually on the other side of the wall? And is normal superior to what the child inherently is, to what he aspires to, fights to become, every second of his day?
My husband is an artist and I am a writer, and Jeremy is the child we created. In him we saw so many aspects of ourselves—compulsivity, aloofness, strong-mindedness, anxieties—and yet the challenge we faced was to free him of our genetic code, our habits. We made up our own rules as we went along—consulting with the therapists who "felt" right, implementing our own idea of appropriateness at home, divining highly personalized theories about progress. It was a lonely business. It pushed us to our extremes. It required more of me than I actually had to give, and at the end of it all, it was Jeremy himself who provided the light and the wisdom that moved us forward.
This is a book about a little boy and his mother. It is about a child who against all odds is learning to live in this world, to even, incredibly, make it better. It is about shame, prejudice, fear, solitude, and their natural counterparts. About reaching out and holding on.
Today Jeremy, our only child, is a successful second grader at a country Quaker school. He is reading difficult books with dramatic emphasis, designing mazes for his father, whizzing around in adult computer programs, asking grown-up questions on class field trips, writing fiction in a daring hand on an oversized notepad, Rollerblading with a vengeance, shooting fourteen baskets into the hoop during gym. He goes to the parties of his Quaker classmates, and he tells me the stories of their lives: James is a musician, Eliza has a new baby sister, Meghan knows how to spell all the words in the world, Will will be an inventor, when he grows up. Lately Jeremy has even been learning how to do recess, discovering games like hide and seek, let's-play-house, and store. And though social cues still sometimes elude him, though speech catches in his throat, though there are habits that still need overcoming, Jeremy, in my book, has won the battle against his genes. In the process, he has made me who I am today—gentler, more patient, more honest, more faithful, so deeply in awe of the courage of young hearts.
|reaching for my son||27|
|where silence starts||51|
|looking for help||78|
|one sudden, quiet knowing||99|
|working it out||107|
|waiting for the red baron||127|
|afternoon concert, minor keys||136|
|the farmer in the dell||174|
They bring him to me just after dawn. I turn, and he is there. They show me how to bend my arms so that I can take him down toward my heart, and there is nothing else to say. The nurse leaves. I fall profoundly, madly into love, peel the aftermath of birth from my son's black-haired crown, try to slow down the shifting of his well-lashed eyes. Hey, little guy. Over here. It's me. I'm your mom. He is as light as that part of the dream that, come morning, slips away and slips away again. I bundle him tightly in the blankets provided and stare without comprehension at the nurses, who have now returned with instructions on the care and feeding of newborns. I don't believe that I will ever learn what they are trying to teach me, and I ask them quiet, obedient questions until my husband comes to rescue me and I can lobby for a quick release from the hospital.
Soon I'm being conveyed home in a rusting white Ford Mustang whose only defense against the persistent July heat involves my fiddling with the windows, cracking them just wide enough apart so as to whip up strong blasts of air. It is the hottest day of a long, dry summer, and Jeremy, one day into life, is blanketed and behatted in the car. His head keeps rolling around above his shoulders, though my husband is driving old-man slow, and I feel criminal exposing him to the heat and potholes like this, make him a promise I will never keep: "Hey, after this, no more cars. We'll walk the world."
We sleep in the same room. We lie, most of those first nights, in the same bed, my husband and I curled like parentheses around our son, barricades against the dark. There is nothing to do but to feed him when he cries and study him when he sleeps, take turns tracing the architecture of his bones. He is, for sure, a half-Latin child, so much black hair on his head that I have to snip away the sideburns, a delicate operation that seems to take me hours. It's a misconception, I'm certain, but time itself has come unscrewed. Everything is a still-life drawing; we are complete, we are immune. We sleep whenever Jeremy sleeps, and in the intervals we make formal introductions: this is yellow, this is the moon. My husband constructs a black-and-white mobile and we dazzle Jeremy's vision with bull's-eyes and swirls. When he cries, we walk up and down the hallway reciting T. S. Eliot; he concedes to the hushing persuasion of poetic anesthesia. It is all a held breath until my parents, our friends, our in-laws, distant aunts, and neighborhood children eagerly arrive and toast this child of ours to the highest of heavens. I retreat when I can to the back of the house and feed Jeremy until he seems satisfied.
After the first three weeks of Jeremy's living are concluded, after it is just me and my baby in the house and there's no one watching eleven hours every day, I begin to teach my son the only thing I know that counts: how to stand in the pulse of a song and feel it tremble. I choose my music carefully. I pillow Jeremy up on the antique rocking chair, stand but a few feet from his two new eyes, and surrender to the avalanche of sound. I call it dancing. I call it color, texture, energy, light. It is everything he'll need to know if he's to plunge into the possibility of his life. "This is music," I tell him at the start of every song. "And this is how it looks to crawl inside it." I tell him that it's reasonable to catch music with your fist. I tell him that you can wear it like a shirt. I tell him that it wasn't until I learned the trick of song that I myself could feel halfway safe upon our planet.
We find our patterns. We construct scaffolding for the days. We spend more and more time on the antique rocker, whose story I tell Jeremy between songs. I tell him how I found the chair in a thrift store on Main Street and carried it all the way home. "I was nine months pregnant and out to here," I confide. "And every few feet I plunked the damn thing down in the middle of the walk and rocked until I felt ready for more hoisting. You would have thought that someone would have stopped to help, now wouldn't you? Jeremy, wouldn't you? Or maybe passersby thought me insane." Jeremy looks at me with his more in-focus eyes, and I wonder what he's thinking, if he forgives my impulsive side, if, when he grows older, he will take me in his stride. In the midst of staring at him intently, holding him, loving him, I schedule time with a formal portraitist, but the photography session does not go well; Jeremy will have nothing to do with the bald man and his clucking tongue, his lightning-like lens. He yawns a monstrous yawn and falls implacably asleep. I pay the photographer for his time and we agree that he will not return, and then I take Jeremy out of his fancy suit and photograph him for hours in casual tees.
Jeremy reaches the ten-week mark, and his head is now independent on his neck. He can look from left to right whenever he pleases, and he can try to look down and touch his toes. I check with the doctor, then I hang him from the ceiling in a Jolly Jumper that was sent down from a friend. He takes right to it. Propels himself up into the air with his toes, his fist in his mouth like a microphone, his whole body cued into the beat. I stand before him, and we're partners in dance, his head not even skimming my knee. In between songs he hangs perfectly still, waiting for his next instruction on life. "Isn't this great?" I ask him. "Don't you love rhythm?" And he throbs and he bobs and he picks up the cadence while he gnaws on his fist with his great toothless mouth.
He starts to sing, increasingly makes sense of this thing called voice--producing small, hesitating channels of sound, creaking and capsizing melodies. As the house begins to swell with his currents, we retire the elderly alarm clock in favor of his song, silence the car radio in deference to his solos, allow him greater latitude over the patterns of our days. A tornado storms into town: merciless. Yanking the paint off houses, hanging trees by their very necks, uprooting backyard tents and gardens, foiling wires and plans. Neighbors who did not know one another before are thrust into perfect friendships--thrown into the streets with candlesticks, anecdotes, laughed-off fears. From the shoulders of my husband, Jeremy watches the wet asphalt, the giddy collision of personalities, the terror of the skies giving way to an exhibition of strange and wonderful cloud forms. To the mayhem Jeremy begins to sing, knotting the fragments of the hour so tight together that when the tornado is later called back to memory, it's the songs that remain in my mind's eye, a mental picture of Jeremy sitting high in the sky calming the winds with his sweet, high humming.
And then there is the day that we board the train for the city, our first such adventure, a bit of spice. It is midday, an unpopular hour for train travel, and the only other travelers journeying with us are seven distinguished black women, all of them smartly attired, each of them bearing the unmistakable aspect of dignity on her face. Outside the train, the scene goes from pleasant to morose: neat plots of yard and well-dressed buildings shifting into sunken stoops and scrambled rooflines. The thin skin of heat in the roof of the passenger car begins to descend. The proud backs of the seven women sink low beneath its weight. But from the back of the train comes the voice of my son, plaintive and full-hearted with song. One head, crowned with a proper pillbox, turns to see. Another follows. Another, until the faces of the heat-broken, city-suited women rim about him like a rough-hewn horseshoe. Hands on the sticky orange seat back before him, legs planted firm on my lap, Jeremy sings a melody of his own making, deposits from his riverbed of verse. The women straighten, lean toward us. Their noble faces betray nostalgia. Fingers tap and encourage. The heat lifts up like a sheet in the wind. "Jeremy," I say, "look what you're doing with your song," and of course he doesn't know a thing. He's just singing to these strangers on the train.
Weeks go by. Months. We celebrate Thanksgiving and Christmas. We kiss him on the forehead at twelve precisely, New Year's Eve. It is February now, and now it is March, and five days out of every seven, Jeremy and I are alone until dinner. Just Jeremy and me, his skin against my skin, his curiosity and intellect bursting. I breathe him in until my green eyes tear with the burn of too much loving. We rock in the chair. We walk through the house. We read. We fall within the thrall of music. We go outside, if the weather's fine. We make daily trips to the train station, begin to pursue long lists of distractions. If there is anything larger than the two of us, then this eludes me. Jeremy is sacred and so is this time, and I cling to it, selfish and greedy.
And yet there is, I admit, that point in the day when I lay Jeremy down for two hours. This is when he dreams--his eyes only partway shut; his fist stabbing the air; his body, a tender motor, purring. My cat slept this way, stretched out on the sill. I remember putting my hand where I thought her heart might be and understanding that it was smaller than my palm. Jeremy's sleep breaks the trance I've been in; all of a sudden I remember my deadlines. I'm a ghostwriter of sorts for corporations and magazines--an honest enough profession, strictly anonymous. No one ever sees me, I emphatically see no one, and yet now every day I'm on the phone, listening to strangers tell stories. They talk about fraud and insurance, property casualties, risk management, fire and shipwrecks. They talk about equitable solutions, ratios and calculations, sleights of hand. Words go back and forth; I write them down. Later, in the middle of the night when my half of the hemisphere is sleeping, I walk through the charcoal-colored hallways of my house, flick on my amber work lamp, and polish first drafts until they're reasonable. No one ever suspects just where the words come from, and that's fine by me; it's a living.
But things keep changing. Lately Jeremy has been completing his two-hour nap in a forty-minute interval. Or he's been falling asleep directly at noon, when all the executives I'm to interview are at lunch. Or we've returned from a driving junket and he's snoring in his car seat, and of course I can't just leave him there: a month ago, a few neighborhoods over, a baby left in the car by her mother was mauled to death by a famished raccoon. Oh God.
So the interview hour has been coming around, and I've been making a lot of excuses. Calling executives with my son in my arms, joking my way through half-cooed interviews. Sometimes I put Jeremy in his windup swing and tell the interviewee that I have just twenty minutes. I pretend that I have another standing appointment, but twenty minutes, in fact, is the time it takes for the swing gadget to unwind to perfect stillness. Other times I go to great lengths to preempt whatever plans Jeremy had in mind, exhausting him all morning so that later he'll be grateful for an afternoon siesta. This rarely works, and why should it? Eight-month-old babies can't possibly fathom the exigencies of global corporate life.
And so I find that I am coming up short on my options. Already I've taken on all the overseas work I can find--sealing the door to my office at four in the morning, then dialing London, Germany, Brussels, London again. Only occasionally does one of the interviewees stop and, with an accent, wonder: Hey, anyhow, what time is it where you come from? Shouldn't you be in your bed? I always pretend that I've made this one exception and that my life, on most weekdays, is normal.
I have begun thinking that maybe an extra pair of hands a single day a week would help lubricate the gears. Jeremy could work off any schedule he pleased, and I wouldn't have to walk around gray-faced. One day only, and I wouldn't leave the house. I could hold my son when he cried for me, and touch the silk of his head when he was sleeping. I could do both at once--be a mother and work--if only I could find the right person. So far the few friends who've occasionally offered their help have distressed Jeremy somehow, thrown him headlong toward terror until he was back in my arms.
My husband and I don't like the one with the short hair and shorter skirt. She's fifty-five years old and should know better. We like the Korean girl, but she's in high school and plays piano; the earliest she could get to us is five-thirty, and that would be irrelevant unless I started working another time zone. There are other options, but we dismiss them summarily, and then we remember a woman we've seen; she spends three clays a week with a child a few houses down. She's solid and pleasant and she takes good care of things. I have always, albeit secretly, admired her.
She knocks on our door and settles into our sparse front room, and the good impressions hold. We ask her the questions that come to mind, though in truth there aren't that many. "Will you be good to my child?" "Will you be gentle with him?" "Will you never usurp me, take my place?" Nods. Nods. All around nods. "One more thing," I remember to tell the applicant, lowering my voice out of shame. "We're not really people people, if you can understand what I mean. We hardly go out. We haven't done much socializing, in the proper sense of that word, since our son was born, and so it's possible that adjustment will take time. Will you mind if Jeremy's not immediately friendly? Not hold it against him? He's an angel at heart." Nothing's a problem. Anything will do. We agree on a price and plan for Monday.
And Monday comes. Before the appointed hour, I find myself all distraught with housework, all disrespectful and hysterical with lists: clean the bathroom, clean the kitchen, prepare company food, what would that be? Jeremy's crying and I know that he needs me, but I keep winding up his swinging chair. Twenty minutes, forty minutes, sixty. He must be seasick by now; I release him. Now Jeremy's in one hand and a dish towel's in the other, and I am trying to sing nice quiet songs, except Jeremy is smarter than that. He knows I'm nervous. He knows my body. The melody is a ruse. "Okay, little guy," I say. "I admit it. I've got the shakes. But how long has it been since we've had company over, and I do want everything to go just right." Jeremy looks at me through the haunted blacks of his eyes. I realize the commotion I've caused. "This is wacky," I tell him. "Mommy really is the worst." I throw the rag in the sink and take the two of us down the hallway to our rocker. We go back and forth and back and forth until we find our rhythm again. Jeremy's tensions dissipate after a while. He fits the feather of his skull under my chin. My head's lolled back by the time the sitter arrives. I can hardly remember why she's here.
Then it begins. With the armory of confidence that the sitter carries with her, she reaches both arms for Jeremy and waits for him to lean in her direction. He does not. He leans most assuredly closer in toward me, pulls my hair with his fist, and screams loudly. "Hey," I say. "Hey. Mommy's right here. Not going anywhere." I turn my back to the sitter to give Jeremy the view, but he recoils in an instant, hides in my shirt.
It's awkward. I'm mortified. I'm so glad Jeremy prefers me. Still, I've got a sitter in my house and she's standing in my front room and it's too early to offer lunch, so I say, "Coffee?" She looks at me, decides I'm worth a second chance. She follows me and my trembling little boy down the hallway of overhead lights and fuzzy carpet.
Now I make coffee. I make it even though I'm a klutz in the kitchen, though it embarrasses me to be studied, if only slightly, by a woman who has probably mastered such trivia, could keep house, stock a refrigerator, brew a pot of coffee in her sleep. I try to make some small talk, but I'm the poorest of talents--launching into the plot of a recently read book until I realize that the sitter's fixed her stare at middle distance. "Oh well." I finally decide to hit the issue square on. "We'll all just sit together for a while and give Jeremy a chance to get his bearings."
That a while is an hour. It is two hours. It is us sitting around a paltry kitchen table until any hostess would agree: it's time for lunch. I go and get some, Jeremy strung around my neck with a vengeance while the sitter patiently waits. Several times I've tried to turn Jeremy to face our company, but he has proven himself stronger than me. He pulls at my shirt, mourns from the bottom of his soul, refuses to dig his head out of my chest, and clings.
I'm getting spooked. There are three hours left on the sitter's clock, and Jeremy's not budging. He won't eat his carrots, but he slowly agrees to juice--agrees, that is, if I hold the bottle at an angle that quashes any view of our lunchtime visitor. The sitter is now telling me stories about her children, about her grandchildren, about kids in general: none, in her experience, quite like my son. I am thinking about the work I have to do, about the trouble I've stirred up, about how rude I'm being, about the backward part of me that had this notion in the first place, We were doing fine, I hear the words in my head. We were managing. We were happy. What's a lack of sleep compared to this? Then I look at the sitter and feel a flash of empathy for her condition. "I'm sorry," I tell her. "I really am."
"You could help yourself, honey," she tells me, not unkindly. "Remember who's in charge here. You're the mother. He's the child. Go take a walk. I'll set things right. Give him to me."
It sets me reeling, puts me right on the edge of a knife. Clinging so hard to my son isn't healthy, but leaving him? I can hardly fathom it. "Go up and down the street," she suggests. "And put him in my arms. He won't get adjusted with you hovering."
I know that's true. I know she's conveying all the common sense in the world, and if I don't go, it shouts loudly: I don't trust you. And that's not it. I trust her, I do. She is an incredible woman. But how can I subject my son to what I know will shake him deeply? I made him a promise a while ago: I'm not going anywhere. And yet I do.
Down the street. Up and down, a sprinter's pacing, running outright when I hit the midsection near my house, because I can hear Jeremy howling. Half crazed with worry, I finally fly up the steps, open the door. "Listen," I report to the sitter, out of breath, "I'll pay you now. Consider it a bonus for a hard first Monday, and I'm sorry, I really am. We will get better at this. You know he's my only one." I'm pulling Jeremy out of her arms as I speak, giving her an envelope of cash, yanking the doorknob, nodding her out. "I'll call you," I say. "You know I'm sorry about this." Maybe she understands, but it doesn't matter. She is walking away and she knows she did not err; all of the trouble stemmed from us.
I'm in the rocker. I have music on. I'm easing Jeremy back and forth, back and forth, slowing the tempo, stroking his crown; he is exhausted. He is, despite everything, nestling in toward me, shivering the anxiety out of his heart, letting his muscles go loose. His whimpers turn to sighs, and then he doesn't have a choice: he sleeps.
Posted March 17, 2000
Just finished this book. I must say it was very well written and inspiring. But if your child has been recently diagnosed with PDDNOS and you are searching for help, advice, tools for raising a child with PDDNOS this may not be the book for you. . My son was diagnosed many years ago, but as with any parent in search of books or material specifically directed towards PDDNOS, you grab for anything you can find.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted March 13, 2010
No text was provided for this review.