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The Power of the Powerless; A Brother's LegacyThis book is extraordinary. Mr. de Vinck writes a compelling story about how his helpless brother affected his life in a positive way. His brother was dearly loved and accepted by the whole family. If anyone ever had a doubt about the importance of a profoundly retarded person, this book should change that. I've read it many times.
amazon.com wrote: "When de Vinck's appreciation of his handicapped brother Oliver appeared in the Wall Street Journal, it resonated across America. His book describes the widespread response to the article from the White House to families of handicapped persons. Although Oliver might have been considered a "vegetable" by some, de Vinck vividly conveys the enormous impact his brain-damaged brother had on him and his family during his 32 years of life. Included also are stories of three other families also enriched by similarly handicapped children. Particularly affecting is the eulogy for Oliver given by a Catholic priest, a friend of the family. DeVinck, who teaches at a New Jersey high school, offers inspiration and support in facing the mystery of human suffering."
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Melissa: The Story Of A Very Special BabyThis book is so full of warmth and joy! It is the story of a baby girl, Melissa, who was born without a brain. She was adopted by such a loving and accepting family! I read this book around the time I adopted Misty. It was enormously moving to me, because little Melissa was born without a brain, and because there are so many cute pictures of her. She was like my little Misty, in many ways. This book was a great encouragement to me at a time when I was terribly discouraged. It made me see that my daughter could be treasured and enjoyed simply for being who she was. I've read this book many times, and bought it for a number of friends. God bless Diane.
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Before and After Zachariah: A Family Story About a Different Kind of CourageThis is a fascinating and well written book. It spares no details about the desperate discouragement and frustration this mother experienced, with a profoundly retarded baby who screamed all the time, and did not progress. My heart goes out to Fern. It is very realistic, and should be read by anyone considering adopting such a child. Though uncommon, there are sometimes screaming problems, and sometimes medicine is the only thing that can fix it. Sometimes medicine can't even fix it. Some brain damage causes screaming. Sometimes there is no solution for a family except for placement. Broken hearts hurt. I've read this book many times.
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Closed World Of LoveA tender, moving little book about a family who keeps their profoundly retarded son home all his life. The father marries the mother who already has the child, Barry. First he has problems adjusting to all the time the little boy takes up. Before long, though, he learns to love him. A very deep love fills that house. And Archie is a rare man indeed. I own this book, and read it every five years or so.
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Angel UnawareIn 6th grade I read this tender story about a little girl who was born very severely affected by retardation and a heart condition, and was dearly loved. It describes what this little girl might have told God, when she arrived in Heaven. This book planted a seed in my heart that grew into the full bloom that is my family. I've read this book many times.
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The Spirit Catches You and You Fall Down While this book's main focus is a study of the differences between the Hmong culture, and American society, there is much about little Lia as well, including photographs. She was a beautiful child. She wasn't profoundly retarded at first, but becomes so, due to a severe seizure disorder. Her family had a terrifying, heartbreaking time, transplanting to the United States, and being expected to conform to an incomprehensible new society, while trying to help their precious baby girl. My heart goes out to the Lee family. I found this deep and complex book fascinating. I've read it five times.
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One Tattered AngelThis is a delightful book! This family adopted a baby girl born without a brain, whom they named Charity. They delight in her, love her, and appreciate who she is without reservation. It is a book full of faith and love.
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LisaI just found this book for the first time. It tears my heart out, to think what a regular, teenaged couple can go through, when their first baby is born with profound mental retardation and cerebral palsy.
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An Exposure of the HeartThis book is a new first time thrill for me. The story of a woman who, intending to make a photographic essay of profoundly retarded children in an institution, falls in love with a little girl there, and begins to bring her home for visits. A sensitive portrait too, of her own children's initiation into the world of disability, and how they adjust because of their mother's love. A wonderful book!
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Child Of GraceThis is a Christian book about a family who had a baby girl with profound mental retardation. It has a different shift - this baby was born into an extremely wealthy family, and her life enriched the life of her mother, and gave her a different and better focus. This mother had married into this family, and felt that she was without identity. She found her own meaning in life through her special daughter. She developed a foundation and a community for people with profound mental retardation.
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Aidan's Way: The Story of a Boy's Life, and a Father's JourneyHere is another new one. This book is very, very good. Inside the cover it reads: "Sam Crane was unprepared to be the father of Aidan, a boy who would never walk, talk or see. Aidan's Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human."
What I love best about this book, is the unconditional acceptance his father feels for Aidan. The picture in the back reflects just how devastatingly disabled Aidan is, yet his father loves and values him just for who he is. That is so rare, and I love it! I've read it twice already, and it's a new book!
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And Say What He Is: The Life Of A Special ChildThis is one of my favorite books from the '70s. A tender, wonderfully written story about a little boy who was profoundly retarded. A beautiful, loving, tender diary of a little boy, John, who was cherished dearly. I've read it many times.
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My Son's StoryThis was an important book for its time. In 1952, people were pushed into institutionalizing. These very educated people, to their great sorrow, had a baby boy who was profoundly retarded. It was a brave story back then. It is certainly worth keeping.
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A House Called HelenThis is a very moving book about a toddler named Helen, and her parents, who founded the first hospice for children. Helen was a normal child until two-and-a-half, in early 1976, when she suddenly nearly died from a huge brain tumour. From her emergency surgery on, she was profoundly retarded, and utterly helpless, but well and deeply loved. Her mother became a strong advocate for the parents of children who need total care. Ever since she founded this first hospice, more children's hospices have continued to be built in many countries, to give severely ill, or disabled children's families a temporary place to bring their child. This is needed, when they are not sick enough to need to continue to stay in the hospital, but still too sick to come home; then, when living at home, during family emergencies or vacations; and also for some children during their active process of dying. At the publishing of this book, Helen, who is completely helpless, and in her teens, was still living at home with her two sisters, and her parents.
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Adam - God's BelovedIn this deeply spiritual book, Henri Nouwen, a Dutch priest, then Canadian pastor, tells the life story of Adam, a profoundly retarded man. Adam was very helpless, and Pastor Nouwen lived at his community, "Daybreak" and spent two hours every morning, caring for him. Nouwen, who was a very busy, active man, found it hard to slow down to Adam's pace. But while caring for him, Nouwen became more aware of the language of the heart. Nouwen found a new way to tell God's story, in the story of this very handicapped child's life, from being born to very loving parents, to his death, surrounded by his parents, and many loving people who truly cared for him.
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Riding the Train With Elizabeth - Enjoying life with my handicapped daughter.This warm, lively and often funny book is filled with love. The story of a profoundly retarded little girl, Elizabeth, this book follows her from birth, to her present age of fourteen. Born with extreme microcephaly, she is utterly helpless, but she certainly knows love! There are many darling mother/daughter pictures, of a happy little girl, smiling at each other. It is obvious that Elizabeth is deeply and dearly loved, by both parents, and her older sister. Especially moving to me, is her father's deep devotion to his little girl. Despite many medical problems, she is taken everywhere, even to movies! Though Elizabeth is legally blind, her mother takes her, and she enjoys the huge screen with lots of action. She begins to laugh when the theater lights come back on! She is very fully, an important member of her very special family.
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All God's ChildrenThis is a marvelous book! It is fascinating, and very moving. This family took in very severely disabled babies and little ones for foster care, back in the days (beginning in 1947) when disabled children were almost always put in institutions. And sadly, even the ones who were blessed to get a foster home instead, especially like this one, were forced to be put in an institution at the age of six. This family grew larger and larger. Many of the little ones were profoundly retarded. Many died of their disabilities, but the family's faith was so strong, that all the children knew these children were going to be with God, and would not be handicapped any more. So death was not something to be feared, for it was joy for the one gone ahead. By the end of the book, these amazing people had just completed building a house that had room for thirty-five children. I wish Mrs. Gauchat had written a sequel. What a wealth of love they poured out on these little ones!
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Stasia's GiftI bought this book years ago, lent it out, and it was gone. Just now, I found it again! The tender, intricate story of a little girl who was born profoundly retarded and medically fragile - and was dearly loved. Anyone who wants to know what it is really like, should read this book! Very informative, gentle and loving.
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Growing Up With JessicaThis is a wonderful book! The best I've seen in recent years, as far as being well-written, and interesting. Unusual because it is written by the little girl's daddy.
This beautiful little girl was apparently born normal, and became profoundly mentally retarded from defective vaccinations. She is still alive, and a treasured member of her family. Special and tender are the writings at the end of the book, by her siblings, once they had grown up.
This is a loving, compassionate story of a lovely, helpless child, was a treat for me to read, from one end to the other. I wish "The Vest" had been invented when my little son Travis was alive!
I especially loved the MANY black and white photographs of little (and older) Jessica. Highly recommended by me!
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Adopting DarrellThis book records the life of a little boy, from birth, through getting adopted, and through adulthood. Darrell was adopted by a remarkable woman, and ended up with 11 siblings. He was fortunate to have such a large family, and such an accepting mother, because he was an exceedingly difficult child, with profound mental retardation, along with a severe behavioral disorder.
The book does not tell about the rest of the family, but is a clear portrait of an unfortunate little boy, who was taken into his new mother's heart, and loved well. May God bless her, and her family.
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"Stephanie's Story" Love Knows No HandicapsThis story is of a beautiful little girl who was born with a rare birth defect, which caused her to be profoundly mentally retarded. A loving book. I'll write more later.
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Marie's VoiceI found this book in England, and am very happy to find that it is available here in the US, even though you have to find it second hand. This is a most unusual book, about a teenager who volunteers in a hospital for orphaned infants, and falls in love with a five year old girl who has spent her whole life there, because she is disabled. This young woman ends up getting guardianship of the little one she loves, and who loves her. It is a warm and very human story that anyone who cares about profoundly retarded children should not miss! Michelle shares her daughter's personality, perky cheerfulness, and just plain cuteness! I almost feel that I know Marie, after reading it, and wish I could meet her in person. I love the way Michelle's children grew up loving Marie. This book follows the little family until Marie's adulthood. This is a winner!
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Our Four Boys - Foster Parenting Retarded TeenagersA most unique book about mature, seasoned parents who, when their children were grown, took four severely and profoundly teengers out of institutions, and brought them home. It describes in great detail, all kinds of problems and behaviours the boys had to change, as well as their need to learn much regular knowledge about how to live in a family. This book is a fountain of good ideas on how to get rid of old habits, and create new and normal behaviors.
It is especially helpful for a family to whom rituals and good habits are important. Also, it gives in detail, the way this couple dealt with masturbation, sex education, and such. They were very calm, and realistic. I am amazed at their openness in sharing intimate details. It is clear that this book could help many people, in situations regarding other severe/profound teenage boys or young men.
I certainly admire the way the boys were treated - with fairness, firmness, dignity, and endless, careful explanations to the boys about what was going on, and why. They had enormous and important consideration about the ability of each boy to comprehend language.
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Unforgotten - Twenty-five years after WillowbrookOfficial Selection - Chicago International Film Festival. Geraldo Riveras's Original Television Expose!
1996, 2002 Originally filmed in 1972, making enormous waves in the news. Available at: http://www.disabilitytraining.com/unfd.html which has an enormous collection of amazing films in its catalog. A treasure of a find.
I searched for years for this. (First I found the book, called "Christmas in Purgatory", which moved my heart to the core.) Years later, I found this astounding DVD. Not only a film of the warehoused children found at Willowbrook institution, nude, miserable, and uncared for; this is the story of several profoundly retarded children who were brought back home in adulthood, after the forced closing of Willowbrook. Even one story of a man who is very bright, and because of his C.P., put there by mistake as a child, only escaping when it was closed down. A heartbreaking revelation of what it was like in those days, to be forced by society, to give a baby born with a handicap, to an institution. The stories of intense love, grief and guilt of the families who received their profoundly retarded child back home as an adult, upon Willowbrook's closing. Oh, our society has so grievously injured such countless families and children. A very similar, excellent documentary is "Front Wards, Back Wards", by Fanlight Productions. See below.
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The Heart Has Its ReasonsAn extraordinary film about the story of Jean Vanier and the L'Arche community for men and women with mental handicaps.
available through journeyfilms.com
I was astounded and thrilled to find this film, in DVD form, about a unique lifestyle created for those men and women who are profoundly retarded. This film is extremely moving. Incorporating loving care, gentle regard, unlimited time, understanding, and the love of God for these people, it describes L'Arche communities across the world. The unflinching gaze of the camera, capturing both joy and anguish in the faces of the people who are profoundly retarded, has never been found before, as far as I know. So much love is shown. Oh, so much love.
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The Teachings Of JonDocumentary Film by Jennifer Owensby - a waking heart films production - 2006
This soul-touching and funny documentary about Jon, a 40 year old man who is severely affected by Down Syndrome ponders the serious questions of how we value each other, and what is truly important in life. This film is a down-to-earth, humorous and completely true story. This family with extremely high intelligence, is persuaded to give their newborn with DS to an institution. The woman caring for the baby dies suddenly when he is six, and his entire family travels to go and get him. They had never even seen him, and were going to place him in another home. However, a snowstorm closed the airport, forcing them all to spend a weekend in a hotel with him. Where it goes from there, I will not tell. It is for your pleasure! I have watched this several times. It's a keeper for sure.
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Front Wards, Back WardsThis deeply moving DVD is by William Rogers, whose brother spent much of his life institutionalized at Fernald School. This institution began in 1848, and a lot of horrible living happened there, as in all old institutions. Several poignant adults are shown - who really need institutionalization, either because of round-the-clock medical needs, or round-the-clock emotional needs. The care has changed so much over the years. Some very tender caring goes on there today. An illuminating film.
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"24/7"This film highlights two families with compassion and down-to-earth reality. These are two of the many families who take care of their profoundly retarded children into adulthood. It pictures day to day care, and gives a clear picture of both the deep love, and exhaustion, 24 hours a day, 7 days a week. It points out how difficult it is to get the state to give some help. Only 33 minutes, but very much worth every penny.
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Precious Lives, Meaningful ChoicesFanlight has an amazing collection of documentaries, which they might sell for $39. each for a person who is just going to watch it, not show it. Just ask.
This is an exquisitely created film. Watching it is almost breathless experience, bringing tears, joy, and deep admiration for the families. In this film, four families share their experiences. Each family has a baby or young child whose multiple needs include medical conditions which severely limit the length of their lives. Each child is precious, and deeply loved. The families are shown with their children, and talk about "the challenges they've experienced in finding and training care assistants; coping with medical staff unfamiliar with their children's rare conditions; meeting the needs of the other children in the family; and most of all, embracing their children's lives with courage, love, and hope in the midst of terrifying uncertainty about when the end will come." I have watched it again and again. It brings back such precious memories for me. I have been there.
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A Little Lower Than the AngelsShady Lane Productions, distributed by Program Development Associates, at www.disabilitytraining.com
An extremely moving documentary about a profoundly retarded lady named Marilyn who was left at a dreadful institution in the '40s, when she was five years old. The film takes place when she is in her sixties, after the institution was closed, and she has been put in a wonderful group home. Part of the appeal is another woman, who was a neighbor when she was young. She discovers where Marilyn is, when they're both in their sixties. She goes and spends time with Marilyn, which is wonderful to see. Marilyn is an attractive woman. You can see that she had been a very pretty little girl. She often smiles, points out the window, and sometimes screams and sobs. Perhaps remembering things that happened to her in the institution? It's new, and already I've watched it many times.
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01 The Power of the Powerless; A Brother's Legacy