For Beth Kephart’s son, the diagnosis was "pervasive developmental disorder not otherwise specified"a broad spectrum of difficulties, including autistic features. As the author and her husband discover, all that label really means is that their son Jeremy is "different in a million wonderful ways, and also different in ways that need our help."
In intimate, incandescent prose, Kephart shares the painful and inspiring experience of loving a child whose "special needs" bring tremendous frustration and incalculable rewards. "What, in the end, are you fighting for: Normal?" Kephart asks. "Is normal possible? Can it be defined? . . . And is normal superior to what the child inherently is, to what he aspires to, fights to become, every second of his day?"
With the help of passionate parental involvement and the kindness of a few open hearts, Jeremy slowly emerges from a world of obsessive play rituals, atypical language constructions, endless pacing, and lonely frustrations. Triumphantly, he begins to engage others, describe his thoughts and passions, build essential friendships. Ultimately this is a story of the shallowness of medical labels compared to a child's courage and a mother's love, of which Kephart writes, "Nothing erodes it. It is not sand on a beach. It is the nuclear heart of thingshard as the rock of this earth."
|Publisher:||Norton, W. W. & Company, Inc.|
|Product dimensions:||5.00(w) x 8.00(h) x (d)|
About the Author
Read an Excerpt
In the fall of 1991, Jeremy, our two-and-a-half year old son, was diagnosed with pervasive developmental disorder not otherwise specified, a complex condition that manifested itself in Jeremy with atypical speech, impaired social interactions, a range of perseverative and compulsive behaviors, and, at times, the sorts of exceptional talents not exhibited by the ordinary child.
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 obsessionsa 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 lifea 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 loseneural pathways are settling in, lifelong habits are forming, behavioral tics are taking overand 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 ourselvescompulsivity, aloofness, strong-mindedness, anxietiesand yet the challenge we faced was to free him of our genetic code, our habits. We made up our own rules as we went alongconsulting 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 todaygentler, more patient, more honest, more faithful, so deeply in awe of the courage of young hearts.
Table of Contents
|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|
What People are Saying About This
I've always thought 'different' was a sad euphemism when it was applied to children with problems, but Beth Kephart has undone my every preconception. Her desperate, loving journey through uncharted territory is ultimately so moving and hope-affirming (without a moment of sappy 'uplift') that I was overwhelmed by it. By helping her son out of his silence, putting words on these pages, Kephart redeems all of us from reading any diagnosis as certain doom." -- Author of Before and After
We may teach our children to read, but they teach us the language of the spirit. In these sterling essays, Beth Kephart listens with her soul. In clear, incandescent prose, she invites us to defy probability along with her, to learn the meaning of faith and the navigation of the everday, to understand the labels and break through them. A Slant of Sun is a luminous gift in the lives of all who love the 'special' child, or any child at all." -- Author of Shelter
Beautifully written, absorbing and moving. A highly talented writer affords us precious insight into her son's extraordinary progress (Bernard Rimlin is Director, Autism Research Institute).
Beth Kephart beautifully communicates many important aspects of the process that helped her son grow. What she's done intuitively we've been working on systematizing for many parents with chidren with special needs so that more children might benefit.
It's so hard, this parenting project. Every kid is different, every parent is different, and the boxes we're permitted so confining. Every difference diagnosed; every variation a treatment problem. And in spite of it all, parents do muddle through, and children do grow, unfold, become their own true selves, as we reach towards and finally to them -- as Beth Kephart reaches toward Jeremy and Jeremy toward the world. -- Author of Recreating Motherhood
A triumph of writing and of the human spirit. This moving, suspenseful, brave and daring book belongs with the classics. To read it is to experience firsthand the redemptive power of love. -- Author of My Life as a Boy
Most Helpful Customer Reviews
A Slant of Sun - One Child's Courage by Beth Kephart was a wholesome book. I wasn't aware that the story was about a child's struggle with autism. The mother shared her deepest fears and thoughts. She opened up her heart for the reader to feel. The words were raw and real. The reader can't help but get involved in the story. You don't have to have children to enjoy the story.
The journey into parenthood is always accompanied by surprises. Children never read the handbooks that purport to explain them or offer advice about raising them. And that's just for kids who fit firmly into the herd of "normal." How much harder is it to parent a child who doesn't fit this definition? Beth Kephart's son Jeremy was very young when he was diagnosed with pervasive developmental disorder (not otherwise specified). As her oldest (only) child, Kephart and her husband had no other frame of reference with which to compare Jeremy's behaviour (screaming and terror around strangers, echolalia, obsessive fixations, and an almost autistic retreat into his own world) but it eventually became clear that Jeremy's behaviour was different and warranted examination. The diagnosis of PDD (NOS) was not a blessing since there was no reliable and proven method for helping these kids or their parents cope with the behaviours and eventually ease the kids into a childhood not marked by difference and struggle but one of normalcy and celebration. This book is Kephart's memoir of trying to do just that for her special boy. She chronicles the uncertainty before the diagnosis, her feelings of failure as a parent, the sense of inadequacy in understanding Jeremy, guilt over possible sources for his disorder, and her fledgling attempts at both recommended therapy and the self-designed therapy that she knows in her heart to be the correct way to reach her little guy. This book chronicles quite a journey, made in fits and starts, with progress and regressions, but all focused on helping Jeremy fit into the world as it is. It is clear in the writing in this book that Kephart is a poet. The stunning turns of phrase and the juxtaposition of images all point to poetry. She has captured and shared raw emotion, love, frustration, anger, joy, desperation, grief, and confusion in these pages. She lovingly details Jeremy and who he is without sugar-coating the difficulty of having such an undefinable child. This book will not provide a road map for other parents of children with PDD(NOS) because there is no such road map out there. Each child is unique, hence the catch-all diagnosis. But what it does provide is hope and a pervading sense of the power of love. There is a grace here in these words and a deep love for her son. Over all, the narrative is chronological but there's a dreamy feel to it thanks to the descriptive and emotional language. This may stymie some readers and those who are searching for a straightforward account could stumble over the style. But there is much to be gained by reading this account of the grace found in parenting a different, sometimes difficult child, even for those of us who have never faced obstacles like this.
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.