AS A CHILD I HAD A RECURRENT DREAM IN which I was sitting on a concrete slab in the middle of a rough ocean. The slab reached down to the ocean floor, like a huge pylon, but was very small in area. I didn’t have much room to move.
Many years later the dream revisited me, and this time its message was clearer. I had been closely exploring my experience of being a sibling of someone with a disability and was starting to unravel a whole range of mixed feelings. Although it had been more than thirty years since the dream was a regular feature of my nighttime imaginings, it felt instantly familiar. It seemed to say that although I had a true sense of belonging as a child, with deep connections to a loving family, I also felt alone and afraid.
Feelings of isolation and fear had been a part of my life for as long as I could remember, even though they were not apparent to people around me. Outwardly, I appeared confident and successful. In fact, in my thirties I was becoming a household name on South Australian radio station SA.FM and its network around Australia. At the same time, another side of me struggled with fear and panic, and a large part of my life was spent escaping what were for me difficult situations, socially and at work.
Another ten years passed before I started to understand this other side of me. Through talking with other siblings of a brother or sister with special needs, reading and seeking help through therapy, I started to uncover the secrets I had been hiding, especially from myself. I discovered a vast amount of literature on the concerns of children who grow up with a brother or sister with special needs. I talked to a host of siblings and found out I was not alone. Others were experiencing similar feelings and confusion. These discussions were the impetus for writing this book.
During a trip to the United States in 1998, I had contact with a number of siblings and people involved with sibling programs. I decided to set up a program in Australia. The Sibling Project, based in the Department of Psychological Medicine at the Women’s and Children’s Hospital in Adelaide, Australia, has become a thriving national program. It provides direct services to families, both parents and siblings, and also works closely with service providers to improve the support given to families.
WHO SHOULD READ THIS BOOK?
The purpose of this book is to raise awareness of sibling issues, give siblings a voice, and outline a range of strategies to help siblings become stronger. The information contained here is based essentially on the personal reflections of families and, in particular, siblings, together with extensive research of international material on sibling issues.
As a sibling you will read this book and discover that you are not alone in your experiences and feelings; that growing up with a brother or sister with special needs has shaped who you are and how you operate in the world.
Through their relationships with their brothers and sisters, children learn to express emotions and feelings such as love, loyalty, anger, and rivalry. They gain companionship and support and learn to give and take. Siblings help teach each other social skills and play a part in each other’s identity development. When one sibling has special needs, some aspects of the relationship can change enormously.
Until now most of the stories we have heard from siblings reflect a positive experience, because those are the easy stories to tell. It seems they are the only stories that society wants to hear. But as you will read here, that is not the reality for many. Not everyone gains inspiration or feels especially blessed by having a brother or sister with special needs. It is often difficult to be honest when our culture tells us constantly that we must be “brave” or “cheerful.” The most helpful thing in my own journey of acceptance was hearing others express mixed feelings that were similar to my own.
As a parent reading this book, you will understand more fully the concerns of your able children and how you can support them. Through that awareness you will feel more competent as a parent and will be able to help your whole family to be stronger and more supportive of one another.
Many of the examples I cite focus on the difficulties siblings face. Many of the experiences reflect some criticism of the way parents handle certain situations. I don’t include these to add to any self-doubt or guilt you might feel as a parent. Most siblings recognize the burden their parents carry. Parents rarely receive the support they need in the early stages of adjustment. To explore and learn from these situations, however, it is necessary to look at these stories.
At times you may feel overwhelmed, trying to meet the needs of all the members of your family while still struggling with your own mixed feelings of grief and acceptance. I do not wish to alarm you. Children can be resilient and often need very little in order to adjust positively. If you understand that siblings within your family are facing particular difficulties, both you and all your children can benefit. With support, parents are usually able to regain a sense of control over their lives, hope for the future, and renewed self-confidence. At the same time, you can help your children adjust and grow from their experience.
As a practitioner working with families that include a child with special needs, this book will help you more fully understand the concerns of siblings and how they can best be supported.
It took me more than thirty years to find a professional who could help me make some sense of my own confused feelings. Things have come a long way in terms of disability acceptance and understanding the effects on families, but there is still a way to go. Through my work with the Sibling Project, I see young children who struggle with their family situation and who have had no support to deal with their difficulties. I have contact with practitioners who have little understanding of sibling issues.
The problem is not the person with special needs; it is the level of support given to families of such children. A growing advocacy movement and a trend toward early intervention for children who have special needs are both welcome signs of improved community awareness. At the same time, there needs to be help and support for both siblings and parents. In order to build strong, united families, we must enable parents themselves to develop strength. With support, siblings will emerge from the shadows of self-doubt, fear, embarrassment, anger and guilt. They can then assume their own important place in their family and in society.
WHAT IS MEANT BY “SPECIAL NEEDS”
Throughout the book I focus on intellectual and physical disabilities. Through talking with families and health practitioners and reading widely, it has become clear that the needs of siblings can be looked at in a much broader context. Mental illness, chronic illness, genetic disorders, cardiac problems, cancer and HIV-related illness, premature babies, and a range of other situations that create special needs all leave siblings dealing with a number of stresses. This stress is often quite difficult to deal with at a young age, when understanding and emotional maturity are still developing.
I write essentially about special needs that are present from birth, even though diagnosis may take some time. Of course, many special needs arise later. A child may have an acquired brain injury due to an accident or cerebral hemorrhage or may develop a chronic illness at an older age. Mental illness can manifest at various stages in a person’s life and interfere with family relationships.
In all of these situations the family system undergoes a shift; each family member is affected, and siblings need similar types of support.
THE USE OF LANGUAGE
Throughout the book I alternate between using the words disability and special needs. Special needs is a broader term that covers a wider range of situations. However, at times I use the word disability if it seems appropriate.
Throughout the book, when referring to siblings, I mean brothers and sisters of people with special needs. I sometimes use the term single sibling when referring to children who have no other brothers or sisters apart from the child with special needs. I sometimes use the term able sibling when referring to a child without special needs. I also alternate between the use of he and she when referring to individual siblings.
A number of terms are used to refer to the people who work with families. The term service provider refers to a range of organizations and individuals with which a family comes into contact if they have a child with special needs. Organizations might include hospitals, disability services, and schools. Individuals include doctors, nurses, physiotherapists, speech pathologists, psychologists, and social workers. Other terms that might be used include health professional and practitioner.
In recent times there has been a growing trend to use people-first language. Instead of labeling someone as “retarded” or “crippled,” the preference is to refer to a “person with an intellectual disability” or “a physical disability.” This allows a person to be seen more easily in ways other than in terms of his or her disability only. However, when quoting others, I use their words, which do not necessarily reflect my own preferences.
Throughout the book, the majority of quotes are from women: mothers or sisters of people with disabilities. I do not wish to imply that fathers and brothers are immune from the concerns expressed here; rather, it so happened that most of the parents who came to various focus groups were mothers; most of the siblings I managed to interview were sisters; and the majority of contributors to the Internet sibling discussion group I participate in are women.
When referring to families, I sometimes use the word marriage, but I acknowledge that there are other living arrangements that are equally as committed. I also understand that many parents don’t have a partner and are sole parents.
When referring to the effects of a child’s disability on a family, I concentrate on parents and siblings. Grandparents, other extended-family members, and close friends can also be affected by the disability. In turn, their reactions can affect the beliefs and attitudes of the family, and they can be an important source of support.
LEARNING FROM ONE ANOTHER
Finally, having acknowledged that much of this book focuses on the difficulties of having a child with special needs in the family, it is true that many families are able to manage the challenges and become enriched by their experiences. I am moved by the courage and inspiration some families display. Siblings, in particular, can develop a range of positive qualities, and many feel they have benefited enormously from their particular family circumstances. If children experience major stresses in childhood and learn ways of coping positively, they can in fact be strengthened by those difficulties. With support, siblings are able not only to reach their own potential but also to contribute to the quality of life of their brother or sister with special needs. We need to learn from all families, from both their positive and negative experiences. I do not pretend to have all the answers, but I hope the ideas in this book will help build links between siblings, between parents and siblings, and finally, between practitioners and families.
KATE STROHM, Adelaide, Australia, 2002