The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son


Ian Brown - 2009
    At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life. Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is. Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.

Hidden Valley Road: Inside the Mind of an American Family


Robert Kolker - 2020
    After World War II, Don's work with the Air Force brought them to Colorado, where their twelve children perfectly spanned the baby boom: the oldest born in 1945, the youngest in 1965. In those years, there was an established script for a family like the Galvins—aspiration, hard work, upward mobility, domestic harmony—and they worked hard to play their parts. But behind the scenes was a different story: psychological breakdown, sudden shocking violence, hidden abuse. By the mid-1970s, six of the ten Galvin boys, one after another, were diagnosed as schizophrenic. How could all this happen to one family?What took place inside the house on Hidden Valley Road was so extraordinary that the Galvins became one of the first families to be studied by the National Institute of Mental Health. Their story offers a shadow history of the science of schizophrenia, from the era of institutionalization, lobotomy, and the schizophrenogenic mother to the search for genetic markers for the disease, always amid profound disagreements about the nature of the illness itself. And unbeknownst to the Galvins, samples of their DNA informed decades of genetic research that continues today, offering paths to treatment, prediction, and even eradication of the disease for future generations.With clarity and compassion, bestselling and award-winning author Robert Kolker uncovers one family's unforgettable legacy of suffering, love, and hope.

January First: A Child's Descent into Madness and Her Father's Struggle to Save Her


Michael Schofield - 2012
    In January's case, she is hallucinating 95 percent of the time that she is awake. Potent psychiatric drugs that would level most adults barely faze her. January, "Jani" to her family, has literally hundreds of imaginary friends. They go by names like 400-the-Cat, 100 Degrees, and 24 Hours and live on an island called "Calalini," which she describes as existing "on the border of my world and your world." Some of these friends are good, and some of them, such as 400, are very bad. They tell her to jump off buildings, attack her brother, and scream at strangers.In the middle of these never-ending delusions, hallucinations, and paroxysms of rage are Jani's parents, who have gone to the ends of the earth to keep both of their children alive and unharmed. They live in separate one-bedroom apartments in order to keep her little brother, Bohdi, safe from his big sister—and wage a daily war against a social system that has all but completely failed them. January First is the story of the daily struggles and challenges they face as they do everything they can to help their daughter while trying to keep their family together. It is the inspiring tale of their resolute determination and faith.

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

The Spark: A Mother's Story of Nurturing Genius


Kristine Barnett - 2013
    At nine he started working on an original theory in astrophysics that experts believe may someday put him in line for a Nobel Prize, and at age twelve he became a paid researcher in quantum physics. But the story of Kristine’s journey with Jake is all the more remarkable because his extraordinary mind was almost lost to autism. At age two, when Jake was diagnosed, Kristine was told he might never be able to tie his own shoes. The Spark is a remarkable memoir of mother and son. Surrounded by “experts” at home and in special ed who tried to focus on Jake’s most basic skills and curtail his distracting interests—moving shadows on the wall, stars, plaid patterns on sofa fabric—Jake made no progress, withdrew more and more into his own world, and eventually stopped talking completely. Kristine knew in her heart that she had to make a change. Against the advice of her husband, Michael, and the developmental specialists, Kristine followed her instincts, pulled Jake out of special ed, and began preparing him for mainstream kindergarten on her own. Relying on the insights she developed at the daycare center she runs out of the garage in her home, Kristine resolved to follow Jacob’s “spark”—his passionate interests. Why concentrate on what he couldn’t do? Why not focus on what he could? This basic philosophy, along with her belief in the power of ordinary childhood experiences (softball, picnics, s’mores around the campfire) and the importance of play, helped Kristine overcome huge odds. The Barnetts were not wealthy people, and in addition to financial hardship, Kristine herself faced serious health issues. But through hard work and determination on behalf of Jake and his two younger brothers, as well as an undying faith in their community, friends, and family, Kristine and Michael prevailed. The results were beyond anything anyone could have imagined. Dramatic, inspiring, and transformative, The Spark is about the power of love and courage in the face of overwhelming obstacles, and the dazzling possibilities that can occur when we learn how to tap the true potential that lies within every child, and in all of us.

Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body


Martin Pistorius - 2011
    But he was alive and trapped inside his own body for ten years.In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents’ marriage and their family to the core. Their boy was gone. Or so they thought.Ghost Boy is the heart-wrenching story of one boy’s return to life through the power of love and faith. In these pages, readers see a parent’s resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin’s mental alertness betrayed by his lifeless body.We also see a life reclaimed—a business created, a new love kindled—all from a wheelchair. Martin's emergence from his own darkness invites us to celebrate our own lives and fight for a better life for others.

NeuroTribes: The Legacy of Autism and the Future of Neurodiversity


Steve Silberman - 2015
      Along the way, he reveals the untold story of Hans Asperger, the father of Asperger’s syndrome, whose “little professors” were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of "neurodiversity" activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.

High Price: A Neuroscientist's Journey of Self-Discovery That Challenges Everything You Know About Drugs and Society


Carl L. Hart - 2013
    At the same time, he was immersed in street life. Today he is a cutting-edge neuroscientist—Columbia University's first tenured African American professor in the sciences—whose landmark, controversial research is redefining our understanding of addiction.In this provocative and eye-opening memoir, he recalls his journey of self-discovery and weaves his past and present. Hart goes beyond the hype of the antidrug movement as he examines the relationship among drugs, pleasure, choice, and motivation, both in the brain and in society. His findings shed new light on common ideas about race, poverty, and drugs, and explain why current policies are failing.Though Hart escaped neighborhoods that were dominated by entrenched poverty and the knot of problems associated with it, he has not turned his back on his roots. Determined to make a difference, he tirelessly applies his scientific research to help save real lives. But balancing his former street life with his achievements today has not been easy—a struggle he reflects on publicly for the first time.A powerful story of hope and change, of a scientist who has dedicated his life to helping others, High Price will alter the way we think about poverty, race, and addiction—and how we can effect change.

Life As We Know It: A Father, a Family, and an Exceptional Child


Michael Bérubé - 1996
    When Jamie Bérubé was born with Down syndrome in 1991, he was immediately subject to the medical procedures, insurance guidelines, policies, and representations that surround every child our society designates as disabled. In this wrenching yet ultimately inspiring book, Jamie's father, literary scholar Michael Bérubé, describes not only the challenges of raising his son but the challenge of seeing him as a person rather than as a medical, genetic, or social problem.

Weekends at Bellevue: Nine Years on the Night Shift at the Psych E.R.


Julie Holland - 2009
    Recounts stories from her vast case files that are alternately terrifying, tragically comic, and profoundly moving, all while she deals with her best friend and fellow doctor's fight with cancer.

Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic


Martha N. Beck - 1999
    This "rueful, riveting, piercingly funny" (Julia Cameron) book is written by a Harvard graduate--but it tells a story in which hearts trump brains every time. It's a tale about mothering a Down syndrome child that opts for sass over sap, and it's a book of heavenly visions and inexplicable phenomena that's as down-to-earth as anyone could ask for. This small masterpiece is Martha Beck's own story--of leaving behind the life of a stressed-out superachiever, opening herself to things she'd never dared consider, meeting her son for (maybe) the first time...and "unlearn[ing] virtually everything Harvard taught [her] about what is precious and what is garbage.""Beck [is] very funny, particularly about the most serious possible subjects--childbirth, angels and surviving at Harvard." --New York Times Book Review"Immensely appealing...hooked me on the first page and propelled me right through visions and out-of-body experiences I would normally scoff at." --Detroit Free Press"I challenge any reader not to be moved by it." --Newsday"Brilliant." --Minneapolis Star-Tribune

Raising My Rainbow: Adventures in Raising a Fabulous, Gender Creative Son


Lori Duron - 2013
    Whereas her older son, Chase, is a Lego-loving, sports-playing boy's boy, her younger son, C.J., would much rather twirl around in a pink sparkly tutu, with a Disney Princess in each hand while singing Lady Gaga's "Paparazzi."   C.J. is gender variant or gender nonconforming, whichever you prefer. Whatever the term, Lori has a boy who likes girl stuff—really likes girl stuff. He floats on the gender-variation spectrum from super-macho-masculine on the left all the way to super-girly-feminine on the right. He's not all pink and not all blue. He's a muddled mess or a rainbow creation. Lori and her family choose to see the rainbow.   Written in Lori's uniquely witty and warm voice and launched by her incredibly popular blog of the same name, Raising My Rainbow is the unforgettable story of her wonderful family as they navigate the often challenging but never dull privilege of raising a slightly effeminate, possibly gay, totally fabulous son.Now with Extra Libris material, including a reader’s guide and bonus content

The Boy Who Loved Too Much: A True Story of Pathological Friendliness


Jennifer Latson - 2017
    It also makes him enormously vulnerable. Eli lacks the innate skepticism that will help his peers navigate adolescence more safely—and vastly more successfully. Journalist Jennifer Latson follows Eli over three critical years of his life as his mother, Gayle, must decide whether to shield Eli entirely from the world and its dangers or give him the freedom to find his own way and become his own person. By intertwining Eli and Gayle’s story with the science and history of Williams syndrome, the book explores the genetic basis of behavior and the quirks of human nature. More than a case study of a rare disorder, however, The Boy Who Loved Too Much is a universal tale about the joys and struggles of raising a child, of growing up, and of being different.

You Don't Look Like Anyone I Know: A True Story of Family, Face Blindness, and Forgiveness


Heather Sellers - 2010
     Heather Sellers is face-blind-that is, she has prosopagnosia, a rare neurological condition that prevents her from reliably recognizing people's faces. Growing up, unaware of the reason for her perpetual confusion and anxiety, she took what cues she could from speech, hairstyle, and gait. But she sometimes kissed a stranger, thinking he was her boyfriend, or failed to recognize even her own father and mother. She feared she must be crazy. Yet it was her mother who nailed windows shut and covered them with blankets, made her daughter walk on her knees to spare the carpeting, had her practice secret words to use in the likely event of abduction. Her father went on weeklong "fishing trips" (aka benders), took in drifters, wore panty hose and bras under his regular clothes. Heather clung to a barely coherent story of a "normal" childhood in order to survive the one she had. That fairy tale unraveled two decades later when Heather took the man she would marry home to meet her parents and began to discover the truth about her family and about herself. As she came at last to trust her own perceptions, she learned the gift of perspective: that embracing the past as it is allows us to let it go. And she illuminated a deeper truth-that even in the most flawed circumstances, love may be seen and felt. Watch a Video

Ready for Air: A Journey through Premature Motherhood


Kate Hopper - 2013
    She is tired and heavy and worried, and she wants her wine and caffeine back. But then, at a routine checkup, her doctor frowns at her chart and says, “I’m worried about a couple of things”—and unpleasant suddenly seems like paradise. What follows is a harrowing, poignant, and occasionally hysterical journey through premature motherhood, from the starting point of “leaking a little protein” to the early delivery of her tiny daughter because of severe preeclampsia and the beginning of a new chapter of frightful, lifelong love.Half a million babies are born prematurely in the United States every year—almost one every minute—each with a unique story, and Hopper eloquently gives a voice to what their parents share: the shock, the scares, the lonely nights in the neonatal intensive care unit, the fierce attention to detail that makes for sanity and craziness, the light of faith, the warmth of family, and the terrifying attachment. Through it all runs the power of words to connect us to one another, as Hopper draws on her gifts as a writer first to help her navigate this uncertain territory and then to tell her story. With candor, grace, and a healthy dose of humor, she takes us into the final weeks of her pregnancy, the this-was-not-part-of-the-plan first weeks of little Stella’s life, and the isolated world she and her husband inhabited when they took their daughter home at the onset of a cold Minnesota winter. Finally, frankly, Hopper ventures into the complicated question of whether to have another child. Down-to-earth and honest about the hard realities of having a baby, as well as the true joys, Ready for Air is a testament to the strength of motherhood—and stories—to transform lives.