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Summary: Excerpt from "Special Siblings" and Table of Contents
Review: "Hands reach out to touch me, pull me, grab me as I walk into the home for retarded adults where my brother has lived for the last twenty years. "What's your name?" they ask. "Where's your mother?" Like children. But they are adults. Retarded adults, from their twenties to their seventies I just want to do what I came to do and get away as fast as I can. I hate coming here. It reminds me of shopping trips with my mother and brother when I was a little girl. I felt embarrassed by my brother who walked with short, shufflinig steps, clung to Mother's hand, smiled and looked at Mom when someone spoke to him. I felt as if everyone was staring at us. I was ashamed of him and ashamed of myself. I knew I should love him, should help my mother, should be a good girl. I tried, but I never learned to love him. I reminded myself that my brother was brain damaged by a careless doctor. I tortured myself wondering what he could have been if the accident hadn't happened. An engineer like my father, a lawyer like my husband? Just a few minutes more oxygen and the spark of intelligence would be there in his eyes. Instead there's a worried, frightened struggle to understand. He knows enough to realize that he's missing the point - an embarrassment that he's not as smart as other people. Now it is my job to tell him that our mother is dead. And somehow I must learn to take her place. "Jackie's waiting for you," the supervisor says. My brother comes toward me, then backs away as I try to kiss hiim. "How's mother?" he asks. "Let's go in your room, Jack," I say. He is taller than I. His face would be handsome if the light of intelligence were reflected there. His hair, like mine, is still a dark blond with only a few gray hairs at the age of 57. I am two years older. He turns toward me, smiling, not wanting to hear what I have to tell him. "Jack," I say, taking his hand, "Mom died last week of a heart attack." He brushes away his tears with the back of his hand. Who taught him it was wrong to cry? I put my arms around him, but he stiffens. "What will happen to her car?" he asks. He fastens on details when he can't fully grasp the meaning of something. "I'll take care of it for her, Jackie," I say hugging him. He's like a little boy, I think. My little boy now. "I'll make sure you're okay, honey," I say. "I'll come and see you. I'll write to you." He is quiet for a minute. I can't tell what he is thinking. I don't know him at all. I had gone to college, married, had children and had seen him only occasionally after my parents put him in the home in Florida when Jack was 37. Busy raising my children, I often forgot to send him birthday cards and Christmas presents. I didn't visit or call him. I would say, "I don't feel anything for my brother," but of course I felt a lot - a lot of resentment and anger. I take him out to lunch and try to think of things to talk about. He looks down at his ice cream and says softly, "It's a shame about Mother dying." My God, I think, he's the retarded one, but I'm the one pretending she hasn't died, not talking about her. Table of Contents Part I: Childhood 1. Your Needs 2. Your Parents' Marriage 3. Your Feelings and How to Cope With Them 4. How Did You Get That Way? Part II: Adolescence 5. Adolescent Angst 6. Who Are You? Adulthood 7. Someone to Talk To Your Relationships Your Career 10. Do you Want Children? 11. Who Will Take Care of Your Sibling? 12. It Feels Like Love.
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Summary: Comments by other authors and experts
Review: "This beautiful, balanced, informative book will touch a chord in anyone whose brother or sister has a disability. With unflinching honesty, McHugh describes her own painful feelings of resentment, shame, and sadness for her brother. But she also describes the strength and good cheer of many others whose family stories will serve as standards of acceptance and love." Margaret Moorman, author of "My Sister's Keeper: Learning to Cope with a Sibling's Mental Illness. "In her remarkably wise book, Mary McHugh masterfully blends her experiences and the experiences of others with insights from clinical research. Although McHugh doesn't shy away from the troublesome aspects of sibling relationships, "Special Siblings" also describes the remarkable attributes seen in many brothers and sisters of people with special needs." Don Meyer, director of the Sibling Support Project, Children's Hospital, Seattle. "Special Siblings is a wonderful book, full of memorable stories that are vivid and affecting, and that will prove enormously useful to all those who care for human beings with disabilities. In addition, it is a book that will deepen understanding about the many ways in which our differences, rather than being cause for shame and stigmatization, enrich all our lives." Jay Neugeboren, author of "Imagining Robert: My Brother, Madness, and Survival."
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Summary: a small masterpiece
Review: =Special Siblings= is a small masterpiece focusing on both the world of the developmentally disabled and the often-forgotten world of their ``normal'' siblings. McHugh's unflinchingly honest, warm, empathetic look at the mixed emotions and unique responsibilities ``normal'' siblings face should be a standard reference book not only for those working with the developmentally disabled, but everyone out there who knows someone with a special sibling...and everyone out there who doesn't.
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Summary: A must read for anyone with a disabled sibling.
Review: First of all, I really wish that people who have not grown up with a disabled sibling would not write negative reviews of this book because they just don't know what it is like. My sister had polio and her illness and subsequent operations took all of my families' resources both financial and emotional. I grew up thinking that I was unimportant and that maybe if I was sick too, I would get attention. My earliest thoughts were those of wishing that I would just die so I didn't have to feel so bad/guilty all the time. Kids that grow up with disabled siblings often feel that they did something wrong to cause the disability. My middle sister and I both felt that way, yet we weren't even born when it happened. Ms. McHugh has written an incredibly honest book that will be greatly appreciated by anyone else in this situation. We live in a world of silence and isolation, how can you ever complain when you can walk, talk, hear, etc. You would be considered extremely selfish. The life of a sibling of a disabled person is very distorted. Thank you, Ms. McHugh for your courage.
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Summary: Mary McHugh knows how to personally touch people
Review: I bought this book because I have a child with a disability, and I wanted to do what I can to be helpful to my three other children. It was a wonderful read! It reassured me, which is something all mothers need a lot of. It also reminded me that vigilance about sibling excesses is in order. After reading it, I reminded my children that they don't have to grow up to be superstars in some kind of effort to compensate for what my one child lacks.
I enjoyed the author's willingness to be so honest about her feelings, yet even when revealing negative feelings, she asserted a positive spin by contrasting her feelings with more positive feelings of others. It's clear that much of her difficulty had to do with being raised in a different time -- when there was little help, and when disability was considered shameful and secret. My favorite section of this book is the discussion of the common phenomenon of siblings entering the helping professions as adults. She has a fresh and interesting take on this topic.
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Summary: I'm so glad I was given this book!
Review: I never knew that other siblings felt this way! After years of dealing with guilt, jealously, and overprotectiveness, I finally realized that I was not alone. Best of all, knowing that other sibs experience the same things, I don't feel the need to justify these feelings anymore. This book is a great starting point for sibs who want to/need to understand how having a "special sibling" has affected their life. FYI: Your special sibling doesn't necessarily have to have a obvious physical special need. I belive that sibs of those who suffer from mental illnesses will also find this book comforting and familiar.
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Summary: It came too late!
Review: I wish my ex-husband would read this book! I would like to think that siblings of families today have a better time of it--but everything Mary said fit in exactly with my ex-husband's family. And the issues begun in childhood carried into adulthood and affected all his relationships! Mary writes very honestly about the ambivalence (which may be too mild a word) of living with a sibling with a disability. The guilt, the anger, the loss of attention....it was all there for him, just as it happened to Mary.
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Summary: I want to tell readers why they will find this book useful.
Review: I wrote this book for people who grew up with a brother or sister with a disability because I have a brother with mental retardation. I spoke to other siblings of people with all kinds of disabilities and experts in this field, and I include helpful resources: support groups, both on-line and in person, books, videotapes and newsletters. I have also told my own story about my often ambivalent feelings about growing up with someone with mental retardation. It's the story of my gradual realization that my brother shaped my life in many ways. It is also for parents who want to help their other children cope with their brothers and sisters with disabilities.
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Summary: A Special View of Life's Longest Relationship
Review: It's been called life's longest relationship, and our bond with our siblings usually is just that. Who else could witness our joys and sorrows and put their arms around us through all of life's seasons? With whom else will we share such conflicted feelings of love, hate, rivalry, and reconciliation for so long? To a large extent the biblical tragedy of Cain and Abel haunts every family and every generation. Therefore learning to navigate and face these intense and uncomfortable feelings is a passageway to a healthy adulthood. As if hurt, resentment, anger, and rage aren't enough, the family crucible is even more complex when a sibling is born with or develops a disability. Parents struggle to be fair to the special and unique needs of each child. Typically developing children watch their parents struggle and feel their own grief as well for what might have been-along with embarrassment and guilt. In the new revised edition of Special Siblings: Growing Up with Someone with a Disability, Mary McHugh helps readers to understand that life's inequities are unavoidable. "Children who grow up with a brother or sister with a disability learn early that life is unfair," says Mary McHugh, an accomplished writer and the sibling of Jack, a man with cerebral palsy and mental retardation. "They have to learn that often the child with the disability must come first; they must face the fact that not everyone will want to be their friend because of the sibling with the disability; they must learn to accept that people will often stare at their brothers and sisters.... My advice for them is all these things are hard lessons to learn but they make you strong enough to deal with anything life presents you with when you are an adult." McHugh's research for this book included interviews with more than 100 siblings - in their teens, 20's 30's and 40's - of people with special needs in an effort to understand her own feelings. Her inquiries show that they share more than a brother or sister with a disability. "Growing up with a special sibling makes you compassionate and kind to every human being you meet; it makes you a good problem solver; it makes you tolerant of religious differences, racial differences, other disabilities, old people, etc. It often makes you an achiever who works to make the world a better place. In short, you will probably be the kind of person other people want as a friend." As Don Meyer, director of the Sibling Support Project, at Children's Hospital of Seattle writes, "In her remarkably wise book, Mary McHugh masterfully blends her experiences and the experiences of others with insights from clinical research. Although McHugh doesn't shy away from the troublesome aspects of sibling relationships, Special Siblings also describes the remarkable attributes seen in many brothers and sisters of people with special needs." Throughout the book, as Brookes Publishing outlines, McHugh explores the spectrum of feelings- from anger and guilt to love and pride - and helps readers understand the issues siblings may encounter in · childhood - such as dealing with their own needs for attention and information, identifying with their parents' grief, understanding their sibling's disability, and coping with their own feelings · adolescence - such as participating in family discussions, fitting in with peers, searching for their own identity, and talking to a counselor or therapist · adulthood - such as building a support system, navigating adult relationships, deciding whether to have children, and planning for their sibling's future care McHugh wants siblings to understand that they are not alone. She has included an extensive list of resources in the back of her book. She urges people to go to sibling support groups and talk to other siblings about our often-unacceptable feelings where they will find unconditional acceptance. The one thing Mary McHugh would like to assure every special sibling: "That you will probably grow up to be a very fine person: strong, compassionate able to cope with just about anything that comes along, loving, tolerant, an achiever who will make a difference in the world. The world will be a better place because you're in it." Readers may wonder if things would be different for McHugh if she and her brother were growing up today. While attitudes toward people with disabilities have improved and access to services has generally increased, family dynamics have remained largely unchanged. The family is our most intimate social setting, and it is there that we are the most vulnerable. Communicating about our pain and resentment diffuses our anger and allows for healing and lifelong cooperation. These are lessons we all must learn, and in this regard children with special needs can be a catalyst. Emotional, wise and intelligent, this book is a must-read for teen and adult siblings. This is also an indispensable resource for parents who are agonizing over how to do their jobs fairly-one of the most common questions I am asked in my role as a psychologist who specializes in the family life issues. Professionals who support people with disabilities and their families will be likewise enlightened in their roles. Complex matters are so often made clear by the simple yet profound reflections of children. Special Siblings by Mary McHugh is a special contribution that succeeds because it captures the essence of that voice from siblings of all ages including herself.
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Summary: A different point of view.....
Review: There is a great need for enlightened books on the topic of growing up with a sibling with a disability. Unfortunately, this book does not answer that need. Ms. McHugh feels the common denominator between her and the other siblings who lament their sibling is the issue of disability. In fact, the common demoninator is self-pity. Most of us in this world have issues with their childhood, whether they be a sibling with a handicap, an abusive parent, a dead beat dad, or an overachieving brother. We all carry many scars. It is not the challenges that we face, but what we make of those challenges. Having a loved one with a disability does not change our essential truth. Yes, it may be difficult at times, but life is, difficult that is. The challenge of facing a disability on a daily basis only makes you more of what you already are. Sometimes that's good, in this case it's very sad. Ms. McHugh may be the sibling of a man with a disability. But she is the one truly handicapped. Handicapped by her inability to stop using the disability as a crutch. The disability nor your brother are the source of your pain, anger and suffering. It is the inability to deal with it in a productive manner. The next book I'd like to read from Ms. McHugh would be about people with disabilities and how they tolerate the whiny, self-important, shallow ramblings of their very confused siblings.
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