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Special Siblings


Special Siblings

Growing Up with Someone with a Disability, Revised Edition
Author: Mary McHugh   Foreword Author: Stanley D. Klein Ph.D.

ISBN: 978-1-55766-607-9
Pages: 272
Copyright: 2003
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Size:  5.5 x 8.3
Stock Number:  66079
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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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Reviews

Review by: Robert Hodapp, Peabody College and Vanderbilt University, Kennedy Center on Human Development
"An informative, even passionate book, one that will clearly help many siblings of individuals with disabilities."
Review by: Don Meyer, Director, Sibling Support Project, Children's Hospital, Seattle
"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."
Review by: Milton Seligman, University of Pittsburgh
"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."
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

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 room next to the doctor's office. We didn't know it, but there was a camera behind the glass window of the playroom that filmed the interaction between my brother and me. As usual, I headed right for the books or the dolls, while Jack played with the cars. There were small chairs, child-size tables, and cookies and milk. The colors were vivid, cheerful: blue and red blocks, yellow walls, orange chairs. Every once in a while, the psychologist would come in and try to get me to play a game with Jack, to do a puzzle with him, to read to him. I liked reading to him for a while, but I would soon get impatient with my brother and go back to my table of books.

Dr. Lord was watching all of this behind the one-way window, and she would counsel my mother when she saw signs of trouble. I never hit my brother, but when he didn't understand what I wanted, I would slam a toy on the floor or punch the doll I was playing with. Dr. Lord helped my mother understand my frustration and suggested ways that she could cope with my anger. My mother remembered her words many years later and told me what Dr. Lord had said:

Mary doesn't understand why you have to spend so much time with Jackie. It makes her angry, but she doesn't know why. Try to take time just for her. When you have a half hour free from Jack, take her on your lap and read her a story. Let her help you make cookies. Do anything just to give her your attention. She needs to know you still love her. I know you're worried about Jackie and want to do all you can for him, but Mary needs you, too.

In those early years, I remember feeling that I had lost the mother I knew. She would look at me without seeing me. She didn't smile anymore. She always looked worried. I wanted my other mother back again.

How I wish my parents had picked me up, hugged me, and said, "We're worried about Jackie right now, but we love you very much; if you will just be patient, your turn will come." Because they didn't know how to do this, I crave love now. I need people to like me. I keep looking for that love and approval, the attention and understanding that I wanted from my parents.

Many of the other siblings to whom I talked who are older than the child with the disability felt exactly the same way. "I felt so left out," they told me. They said they needed someone to explain what was going on. Their whole world had changed. Everyone was sad and angry, but they didn't know why. They just wanted someone to tell them it wasn't anything they had done and that everything was going to be all right. Even with current knowledge that helps parents give their other children the extra attention they need, siblings of all ages still mention that they miss the time and love their busy parents cannot give them because of the needs of a sibling with a disability.

Ahadi was 5 years old when her sister with epilepsy was born. She remembers standing in the doorway with a blanket wrapped around her when they took her 8-month-old sister away in an ambulance after her first seizure. Now in her twenties, Ahadi still mourns her lost childhood:

It's not just that I lost my mother's attention — you always lose that when a new sibling is born. But a great deal of my life was consumed by my sister's illness. I often woke up in the middle of the night to be sure she was all right. I went to the hospital with my mother, and later when my mother was with her in the hospital, I tried to take care of the house and myself as well.

You're not only losing a parent, you're also losing some of your own time and your own experience as a child. I did lose an aspect of my childhood — some of the carefreeness. Most of my friends have never even been in a hospital. You realize that your life is so different.

All parents are busy and unable to give children their full attention sometimes. Yet, the difference in a family with a child with a disability is that parents, especially mothers, focus almost their entire attention on the child with a disability. Sometimes parents must concentrate that intensely on a child who is ill or needs special support, of course, but it is very hard for the other child to accept. There's a vast difference between the way parents act before the child was born with a disability, got sick, or was injured and the way that they act afterward. Concentrating on the child with the disability often takes away the family's previous laughter and spontaneity.

Janet, a woman in her forties whose sister has mental retardation, said,

I feel like we were sacrificed for my sister because we could take care of ourselves. I was only 18 months old when my sister was born. When my niece was that age, it was really difficult for me to see her because I would say to myself, "That's how old I was when my sister was born. I was just a baby who needed her mother just as much as she ever did. I shouldn't have been on my own."

We all wish our parents had said they loved us more, but it's especially important to the siblings of a child with a disability. They sometimes feel that they're just in the way, that their parents are so busy with the child with a disability that they wish the siblings weren't there. A child is so attuned to parental approval or disapproval that every time a parent brushes by her to take care of her sibling with a disability, it feels like the parent doesn't love her.

In particular, a mother often is totally unaware that she is paying more attention to the child with the disability. She wants so desperately to be fair to each child in the family that she turns off some of the signals that alert her to the fact that the child without a disability is being shortchanged. In an interesting study conducted in 1994 by psychologist Alexandra Quittner and graduate student Lisa Opipari, mothers of children with cystic fibrosis reported that there was absolutely no difference in the amount of time that they devoted to their children. Yet, the diaries they were asked to keep, listing their daily activities, contradicted their oral interviews. It was clear that they spent more time with the child with cystic fibrosis — not just in medical treatments but also during playtime and at mealtimes. The control group of mothers who did not have a child with cystic fibrosis said matter-of-factly that of course they had to spend more time with a younger child: meals took longer, toilet training took time, and dressing the younger child was time consuming. They had no illusions that you could spend equal time with each child.

In a follow-up study of older children, Dr. Quittner found that they were affected by the fact that their mothers had to spend more time with their siblings with cystic fibrosis. These children fought with their brothers and sisters more, were more likely to be anxious and depressed, and were disruptive in school. Dr. Quittner told me, "It's important for health care professionals to emphasize the fact that in all families, mothers and fathers sometimes treat children differently for a variety of reasons — age differences, developmental differences, personality differences. There's nothing wrong with spending more time with a sick child when you have to. But it's also important to try to find ways of spending extra time with the siblings who are healthy to make up for it. Let them know they are important. Ask for help from grandparents and friends. Look for ways to give them special attention."

When siblings can't find the love and attention they need at home, they often look for it elsewhere — from a teacher, a minister, a best friend. Allie, who has a sister with Down syndrome, remembered that she and her other two sisters found love in other people's families. "We all spent a lot of time with a friend's family. I was looking for an Ozzie and Harriet kind of home. My two sisters did the same thing. We practically lived in someone else's house."

Most parents do, of course, love all of their children, but sometimes they don't take the time to show their love. Often, just a few minutes spent alone with a child makes her feel loved. When I asked siblings to tell me the moments they remembered most vividly as children, they always told me about the times that a parent spent just with them, without the sibling with the disability. Maureen remembered a special, brief time spent with her mother when she was a child:

There were five children in our family, including my sister with cerebral palsy. My mother was always busy, but I remember just as if it were yesterday the only walk my mother ever took with me. I was 5 years old. My mother was busy making dinner — I remember she had her apron on — but she took me down to the creek to go alligator hunting. We lived in [the Northeast], so this was a totally fanciful thing, but it meant so much to me. It probably took 10 minutes while Mom had the meatloaf in the oven. Just a short time, but I remember it to this day.

There was one place in the world where I could find the attention and approval that I craved — school. I loved school. It was a place away from our house and Jack and the worry and tension. I could read and write stories about "bad" children who learned to be good. I could be the narrator in the Christmas pageant. I could be Queen Isabella in a play I wrote about Christopher Columbus and wear a deep purple velvet dress made out of my mother's old evening gown. I could shine in the classroom and bask in the warmth of my teachers' approval. Even in first grade, though, I felt that I always had to be good, and I worried that I might not live up to everyone's expectations for me. No 6-year-old child should have to worry about that.

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