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Robert M. Hodapp
"An informative, even passionate book, one that will clearly help many siblings of individuals with disabilities."
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.
Excerpted from Special Siblings, Revised Edition
By Mary McHugh
Copyright © 2002 by Paul H. Brookes Publishing Co. All rights reserved.
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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