Special Siblings: Growing up with Someone with a Disability

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9780786862856: Special Siblings: Growing up with Someone with a Disability
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Mary McHugh was a grown woman when her mother died, leaving behind the responsibility of caring for her mentally disabled brother, Jack. Suddenly she was faced with the ambivalent feelings she had toward Jack -- anger, resentment, guilt, and disappointment -- feelings she had suppressed for years. But by getting to know Jack, McHugh soon realized the important role her brother had played in shaping her character, her life, and her other relationships. She realized as well that Jack had helped make her a more understanding, patient, and tolerant person. McHugh shares these insights, along with the insights of experts and other siblings of people with disabilities, in this informative and enormously reassuring book that offers practical advice for each stage of development -- childhood, adolescence, and adulthood -- as well as a resource guide to organizations, books, videotapes, and workshops available for siblings and parents. Affirming, empowering, empathetic, and sympathetic, Special Siblings helps readers understand and cope with the complex web of emotions experienced by anyone sharing a childhood with a sibling with a disability and for parents juggling the needs of both an able-bodied child with those of one with a disability.

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Review:

"A poignant mosaic of experiences that are unique to siblings of persons with chronic illness or disability."

"This beautiful balanced, informative book will touch a chord in anyone whose brother or sister has a disability."

"This beautiful, balanced, informative book will touch a chord in anyone whose brother or sister has a disability."

"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, Sibling Support Project, Children's Hospital, Seattle" (01/01/2004)

"In her book of compelling insights into the sibling experience, Mary McHugh writes about the life-altering legacy of he relationship with her brother, Jack, who suffers from mental retardation. Augmented by the voices of other adult siblings and the expertise of professionals, McHugh combines her insights into a poignant mosaic of experiences that are unique to siblings of persons with chronic illness or disability."--Milton Seligman, Ph.D."University of Pittsburgh" (01/01/2004)

"An informative, even passionate book, one that will clearly help many siblings of individuals with disabilities." --Robert M. Hodapp, Ph.D.

From the Author:

Excerpt from "Special Siblings" and Table of Contents
"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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