Cover image for Special siblings : growing up with someone with a disability
Title:
Special siblings : growing up with someone with a disability
Author:
McHugh, Mary.
Personal Author:
Edition:
First edition.
Publication Information:
New York : Hyperion, [1999]

©1999
Physical Description:
xvi, 238 pages ; 25 cm
Language:
English
ISBN:
9780786862856
Format :
Book

Available:*

Library
Call Number
Material Type
Home Location
Status
Central Library HV1553 .M38 1999 Adult Non-Fiction Non-Fiction Area
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Summary

Summary

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.


Author Notes

Mary McHugh is a freelance writer who has contributed extensively to The New York Times, and served as a contributing editor for Cosmopolitan and as an editor at Woman's World and other national publications.


Reviews 2

Booklist Review

McHugh's brother Jackie suffered from cerebral palsy, apparently caused by a badly managed birth. When he was 37, the parents put him into a residential home, but family damage had already been done. In her book offering help to parents, relatives, teachers, and neighbors of disabled children who have siblings as well as to those siblings, McHugh is often highly personal when discussing feelings, seemingly minor events, and the failure or inability of persons supposed to be "in charge" to come completely to grips with the situation. Describing growing up with Jackie, she mentions how his disability affected her relations with him and her parents, pointing out, for example, that her parents accepted her high grades without comment or praise, whereas they gave Jackie loud praise for handling a bowling ball. She forcefully lays to rest the supposition that a child with a disability can live in a family without affecting the siblings. For although she describes a few cases with positive results, she doesn't gloss over any problems, short or long term. --William Beatty


School Library Journal Review

YA-A look at what it is like to be a sibling of someone with a physical, mental, or emotional disability. McHugh's brother has both cerebral palsy and mental retardation, a fact that has shaped every aspect of her life. In the course of writing this book, she spoke to siblings ranging in age from 6 to 76 years of age who expressed feelings that ran the gamut from compassion to resentment. She writes with painful honesty and includes information about research studies, interviews with experts, and the experiences and stories of many siblings. The book covers important topics such as coping with anger, embarrassment with new friends, and dealing with the long-term care of the disabled sibling. McHugh concludes with a resource section that includes videotapes, newsletters, support groups, and organizations. This title could be of great interest, help, and comfort to readers who are looking for both information and encouragement from people who understand how they might be feeling.-Peggy Bercher, Fairfax County Public Library, VA (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Excerpts

Excerpts

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 Excerpted from Special Siblings: Growing up with Someone with a Disability by Mary McHugh All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

Table of Contents

Stanley D. Klein
About the Authorp. viii
Forewordp. ix
Introductionp. xv
Acknowledgmentsp. xvii
1 Childhood
1 Your Needsp. 3
The Need to Identify with a Parent's Griefp. 6
The Need for Attentionp. 7
The Need to Achievep. 13
The Need for Informationp. 15
Why Parents Have Difficulty Talking About Disabilitiesp. 19
2 Your Parents' Marriagep. 23
Your Family's Problem-Solving Stylep. 23
Marriages in Troublep. 28
Fathersp. 31
3 Your Feelings and How to Cope with Themp. 37
Angerp. 38
Guiltp. 44
Embarrassmentp. 47
Help for Siblingsp. 51
4 How Did You Get That Way?p. 59
Type and Severity of the Disabilityp. 62
Cystic Fibrosisp. 63
Cerebral Palsyp. 64
"Invisible" Disabilitiesp. 64
Hearing Impairmentp. 66
Mental Retardation Requiring Limited Supportp. 67
Autism Spectrum Disorderp. 69
Mental Illnessp. 70
When the Disability Occursp. 71
Birth Order and Genderp. 73
When the Younger Sibling Surpasses the Olderp. 78
Size of the Familyp. 79
Conclusionp. 81
2 Adolescence
5 Adolescent Angstp. 85
Embarrassment with New Friendsp. 86
Mental Illnessp. 88
Fitting Inp. 89
Life Is Unfairp. 90
Anger and Frustrationp. 95
Guiltp. 97
Getting Helpp. 102
Love and Pridep. 106
6 Who Are You?p. 113
Asking to Be Included in Family Discussionsp. 113
The Search for Identityp. 119
Fear of Abandonmentp. 121
Peer Pressurep. 122
3 Adulthood
7 Someone to Talk Top. 129
Deal with Angerp. 130
Talk to Someonep. 132
SibNetp. 138
Friendsp. 140
8 Your Relationshipsp. 145
Caretakersp. 146
Escape Artistsp. 150
Influence of a Sibling's Disability on Potential Relationshipsp. 152
When Do You Bring up the Disability?p. 154
Choosing Friendsp. 155
Relativesp. 157
9 Your Careerp. 161
Choosing Human Services Workp. 162
When the Human Services Field Is Not the Right Choicep. 169
10 Do You Want to Have Children?p. 175
Prenatal Tests to Detect Disabilitiesp. 177
Deciding Whether to Have Childrenp. 178
11 Who Will Take Care of Your Sibling?p. 183
Talk to Your Parents About the Futurep. 185
Find the Right Lawyerp. 187
Determine Living Arrangementsp. 189
Decide Who Will Care for Your Siblingp. 192
Persuade Parents to Let Gop. 193
Mental Illnessp. 195
12 It Feels Like Lovep. 205
Love and Pridep. 210
Bibliographyp. 223
Resourcesp. 227
Permissionsp. 231
Indexp. 233

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