Special Siblings: Grownig Up with Someone with A Disability / Edition 1

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Overview

In this absorbing and candid book, Mary McHugh reveals what she experienced as the sister of a man with cerebral palsy and mental retardation - and shares what others have learned about being and having a "special sibling." Weaving a lifetime of memories and reflections with relevant research and interviews with more than 100 other siblings and experts, McHugh explores a 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 Emotional and enlightening, this book is a must-read for teen and adult siblings - and all professionals who support people with disabilities and their families.

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Editorial Reviews

Robert M. Hodapp

"An informative, even passionate book, one that will clearly help many siblings of individuals with disabilities."
Director, Sibling Support Project, Children's Hospital, Seattle - Don Meyer
"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."
University of Pittsburgh - Milton Seligman
"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."
The Baltimore Sun
Referenced in The Baltimore Sun (9 Nov. 2003) in an article called "My Brother's Keeper." The article hightlights the transition that sibliling of a disabled person faces when her elderly parents leave behind the responsibility of a son or daughter with a developmental disability. McHugh's research is referenced to show that sibling of a disabled person possessed all kinds of mixed feelings such as anger, guilt and resentment toward her brother or sister with a developmental disability.
Family Circle
In Family Circle (October 2003), Mary McHugh shares hers and five other people's views to show how growing up with a sibling with a disability can shape every aspect of one's life.
From the Publisher
ERIC Clearinghouse on Disabilities and Gifted Education published an abstract in the Spring 2003, Volume 35 issue of Exceptional Child Education Resources. (Quarterly journal of CEC).
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Product Details

  • ISBN-13: 9781557666079
  • Publisher: Brookes
  • Publication date: 12/1/2002
  • Edition description: REV
  • Edition number: 1
  • Pages: 238
  • Product dimensions: 5.50 (w) x 8.25 (h) x 0.60 (d)

Meet the Author

Mary McHugh has had books published on subjects ranging from law to death. Her first book, The Woman Thing (Praeger), was reviewed in the New York Times Book Review and remained in print for 5 years. Her other books, published by Franklin Watts, are Law and the New Woman, Psychology and the New Woman, Veterinary Medicine and Animal Care, Engineering and Engineering Technology, and Young People Talk About Death. Ms. McHugh has worked at The New York Times for its magazine's special sections, including Sophisticated Traveler and Fashions of the Times. She has also written for the Arts and Leisure section, the Magazine, and the Travel section. Telling Jack, the article that she wrote for the Hers column of The New York Times Magazine, was nominated for best personal essay by the American Society of Journalists and Authors. Loving Jack, her Good Housekeeping article, was nominated for an award by the American Society of Magazine Editors. The first edition of Special Siblings: Growing Up with Someone with a Disability was awarded a prize for Special Recognition of a National Project by The Arc of New Jersey. Ms. McHugh was a contributing editor to Cosmopolitan magazine for 10 years, writing articles about successful women and relationships. She has also worked as an articles editor at three other national magazines. Ms. McHugh can be reached at mmchugh655@aol.com.

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Read an Excerpt

Excerpted from Special Siblings, Revised Edition
By Mary McHugh
Copyright © 2002 by Paul H. Brookes Publishing Co. All rights reserved.

YOUR NEEDS

The Need to Identify with a Parent's Grief

Psychologists tell us that a child can identify too strongly with a parent's anguish. She may develop an obsessive concern about her sibling with a disability and not want to leave the sibling's side to go to school or play with other children. Jennifer is like that. At 11 years old, she was a little mother to her brother, who has hearing and visual impairments and mental retardation:

I feed him and sit there and watch him so if he needs something, I can get it. Sometimes he cries because he's lonely, and I feel bad because we can't give him all the attention he wants. I try to make him happy. Last week I felt so bad that I didn't want to go to school because he was having seizures on and off, every 5 minutes, and I just wanted to be there with him because if anything happens, I know what to do.

Debra J. Lobato, a developmental psychologist at Rhode Island Hospital, has a special interest in the siblings of children with disabilities. She urges parents to do something right away if they see their healthy siblings developing unhealthy concerns. She advises getting the child out of the house for a while, away from the sibling who has a disability. In her book Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children with Chronic Illnesses and Developmental Disabilities, Dr. Lobato said that no matter what, a mother or father should set a regular time to take the child out and not talk about the sibling with a disability. The idea is to break the pattern of obsession.

The Need for Attention

A child's time alone with parents goes a long way toward easing the resentment that he feels because his parents are no longer concentrating on him. This happens whenever a new baby is born, of course, but the mother in particular must spend an even greater amount of time with a baby who has a disability.

One of the best things that my mother did was to take Jack and me to Children's Hospital Boston to see Bronson Crothers, a pediatrician light-years ahead of his time in his understanding of children with disabilities. He worked with a psychologist, Elisabeth Lord, who understood my needs as well as Jack's. I wish that these two doctors were still alive so I could talk to them and tell them how much they helped all of us.

Once a year, my mother would make that long drive to Boston over bumpy roads, before there were superhighways. I remember the 10-hour trip through small towns and cities, stopping by the side of the road to eat the sandwiches that my mother had brought. When I was sleepy, I would lay my head on her lap and take a nap. Every once in a while, she would take her hand off the wheel and gently touch my hair. Jack was asleep in the back.

We stayed with my father's mother while we were in Boston. She was about 40 when my father was born, so she seemed ancient to me. I can still see that white-haired lady with a huge hearing aid that hung on the front of her dress. To entertain me, she would show me a little box of her treasures: a lock of my father's baby hair, a tiny wooden heart that she said was given to her by a man whom she loved (evidently not my grandfather), and the white ribbon from her wedding bouquet.

I used to sleep in a room with a white marble bust of Queen Victoria looking down at me disapprovingly. She's in my office now as I write this, reminding me of my grandmother, of my mother and father, of my little brother who couldn't help the way he was.

My favorite part of the trip was the visit to the hospital, where Jack and I could play with the toys in a brightly lit r

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Table of Contents


About the Author
Foreword
Stanley D. Klein, Ph.D.
Introduction
Acknowledgments

I. Childhood
1. Your Needs

  • The Need to Identify with a Parent's Grief
  • The Need for Attention
  • The Need to Achieve
  • The Need for Information
  • Why Parents Have Difficulty Talking about Disabilities
2. Your Parents' Marriage
  • Your Family's Problem-Solving Style
  • Marriages in Trouble
  • Fathers
3. Your Feelings and How to Cope with Them
  • Anger
  • Guilt
  • Embarrassment
  • Help for Siblings
4. How Did You Get That Way?
  • Type and Severity of the Disability
    • Cystic Fibrosis
    • Cerebral Palsy
    • "Invisible" Disabilities
    • Hearing Impairment
    • Mental Retardation Requiring Limited Support
    • Autism Spectrum Disorder
    • Mental Illness
  • When the Disability Occurs
  • Birth Order and Gender
  • When the Younger Sibling Surpasses the Older
  • Size of the Family
  • Conclusion
II. Adolescence
5. Adolescent Angst
  • Embarrassment with New Friends
    • Mental Illness
  • Fitting In
  • Life Is Unfair
  • Anger and Frustration
  • Guilt
  • Getting Help
  • Love and Pride
6. Who Are You?
  • Asking to Be Included in Family Discussions
  • The Search for Identity
  • Fear of Abandonment
  • Peer Pressure
Part III. Adulthood
7. Someone to Talk To
  • Dealing with Anger
  • Talk to Someone
    • SibNet
    • Friends
8. Your Relationships
  • Caretakers
  • Escape Artists
  • Influence of a Sibling's Disability on Potential Relationships
    • When Do You Bring up the Disability?
  • Choosing Friends
  • Relatives
9. Your Career
  • Choosing Human Services Work
  • When the Human Services Field is Not the Right Choice
10. Do You Want to Have Children?
  • Prenatal Tests to Detect Disabilities
  • Deciding Whether to Have Children?
11. Who Will Take Care of Your Sibling?
  • Talk to Your Parents About the Future
  • Find the Right Lawyer
  • Determine Living Arrangements
  • Decide Who Will Care for Your Sibling
  • Persuade Parents to Let Go
12. It Feels Like Love
  • Love and Pride

Bibliography
Resources
Permissions
Index

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