Support for Sibblings

Professional Perspective

Sibling relationships are lifelong, spanning all the phases of our development as individuals and as families. When a family includes a child with a disability, other children in that family are affected. The effects of growing up with a brother or a sister with a disability are both positive and negative. Many siblings report that they are more compassionate, knowledgeable about disability issues, and willing to help others than they might have been without the experiences associated with being a sibling of a person with a disability. Siblings also report stresses such as feeling embarrassed by their brother or sister, not having enough time with their parents, and worrying about what the future holds for themselves and their brother or sister. In general, most children in families that include a child with a disability are likely to adapt and even blossom when their developmental needs are met in the family.

Siblings of children with disabilities need information about their brother or sister’s disability in language they can understand and use to explain to others. They may need reassurance about their sibling’s ability to have a happy and productive life, as well as information about treatments, interventions or other special activities in which their brother or sister participates. As children grow older, they need to be part of family discussions about future living situations. Children need to be able to express their own needs and concerns. Time to be a child rather than a caregiver, individual time with their parents, shared activities with their brother or sister who has a disability, and information are important for siblings are important. Participation in informal support activities, such as Sibshop or a sibling group affiliated with a disability organization can help children gain information and find other children with similar experiences.

Resources for Adults

Books
Brothers and Sisters – A Special Part of Exceptional Families
By Thomas H. Powell, Peggy Ahrenhold
Baltimore, MD: P.H. Brookes, 1985.
Pages: 291
Library of Congress Number: HV903.P69 1985
Category: Coping

The two main sections of this book focus on the importance of siblings in a family, the unique circumstances encountered by having a sibling with a disability and strategies to help siblings cope with a chronic illness or disability.

Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children With Chronic Illnesses and Development Disabilities
By Debra J. Lobato
Baltimore, MD: P.H. Brookes, 1990.
Pages: 213
Library of Congress Number: RJ380.L63 1990
Category: Coping

This book offers chapters on understanding sibling relationships, advice for some specific conditions, individual differences in adjusting to family stresses, and advice on where to go for help in coping with sibling situations. The second half of the book includes a workshop series curriculum to help siblings understand their particular situation.

Everything Parent’s Guide to Raising Siblings, The
By Linda Sonna
Avon, MA: Adams Media, 2006.
Library of Congress Number: HQ769.S5775 2006
Category: Parenting/Child and Adolescent Development

In this unique handbook, you will learn how sibling relationships develop over time, the factors that affect these relationships for better or for worse, and how to resolve the issues that provoke conflict.

In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child
By Myra Bluebond-Langber
Princeton, NJ: Princeton University Press, 1996.
Pages: 302
Library of Congress Number: BF789.D4 B635 1996; C:2
Category: Coping

What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease’s intrusion. She looks at how parents adjust their priorities and their idea of what makes for a normal life while caring for the ill child and at how they see the future.

It isn’t Fair! Siblings of Children With Disabilities
By Stanley D. Klein, Maxwell J. Schleifer
Westport, CT: Bergin & Garvey, 1993.
Pages: 176
Library of Congress Number: HV888.5.I7 1993
Category: Coping

This book presents a wide range of perspectives on the relationship of siblings to children with disabilities. These perspectives are written by parents, young adult siblings, younger siblings and professionals. The chapters illustrate changing views about children with disabilities and their families. There is a unique collection of chapters by parents and siblings, including firsthand accounts. The authors show the importance of parents, as teachers of their children, and illustrate the concerns of a family when one child has a disability. Information in families must be shared, the book asserts, and the topics of fairness, expectations, rewards, punishments, caretaking responsibilities and negative feelings are all thoroughly discussed.

Loving Each One Best: A Caring and Practical Approach to Raising Siblings
By Nancy Samalin, Catherine Whitney
New York, NY: Bantam Books, 1996.
Pages: 203
Library of Congress Number: HQ755.8.S27 1996
Category: Parenting/Child and Adolescent Development

For parents concerned about providing for the particular needs of multiple-child families, this guide offers advice on how to deal with competing demands, sibling rivalry, stress, and feelings of guilt and inadequacy.

Nobody’s Perfect: Living and Growing With Children Who Have Special Needs
By Nancy B. Miller
Baltimore, MD: P.H. Brookes, 1994.
Category: Recreation, Travel, Play

This innovative book has a straightforward, easy-to-read format and offers parents who have children with special needs a fresh, affirming perspective on the challenges of family life. Practical and nonjudgmental, this book guides parents through the process of adaptation. It describes specific strategies for success in balancing one’s own life, developing a parenting partnership, and interacting with children, friends, relatives, professionals and others. The book includes candid, inspiring and often humorous reflections of four mothers who are raising children with disabilities.

Normal One: Life with a Difficult or Damaged Sibling, The
By Jeanne Safer
New York, NY: Bantam Dell, 2003.
Pages: 195
Library of Congress Number: RJ47.5.S242 2002
Category: Coping

By drawing on her own experiences as a ‘normal sibling’ as well as interviewing more than sixty others, Safer explores the complex feelings and challenges experienced by individuals whose siblings are ‘difficult or damaged.’ In addition to insight and empathy into this unique situation, she offers helpful tools to help resolve the often conflicting feelings one has towards one’s less able sibling. An essential read for anyone who defines themselves as the ‘normal one.’

Sibling: A Handbook for Understanding the Sibling of a Child with a Handicap, The
By Barbara Azrialy
Encino, CA: Azrialy Publishing, 1988.
Pages: 136
Library of Congress Number: HQ773.7.A97 1988
Category: Coping

This straightforward and insightful handbook addresses many key issues resulting from the author’s own personal experience with two disabled siblings. The chapters address information for the parents and the healthy sibling, as well as information on embarrassment, guilt, resentment, self-image, blame, responsibility, genetics, honesty, love, maturity, patience, sensitivity, neglect, aspirations and denial.

Sibshops: Workshops for Siblings of Children with Special Needs
By Donald J. Meyer, Patricia F. Vadasy
Baltimore, MD: Paul H. Brookes Publishing Company, 1994.
Pages: 237
Library of Congress Number: HV888.M495 1994
Category: Coping

Often times, siblings of children with special needs are overlooked and need a forum to express their feelings, find support, and learn to cope. Sibshops provide this needed support where children aged 8-12 can have fun while they learn. This book is a user-friendly guide to organizing a Sibshop from scratch. Numerous resources, details, and activities are included in this book, and the format of the workshops are adaptable to address specific conditions (e.g. cancer, HIV, epilepsy, emotional disabilities, etc.).

Sisters, Brothers, and Disability
By Lydia Gans
Minneapolis, MN: Fairview Press, 1997.
Pages: 153
Library of Congress Number: HV888.5.G35 1997
Category: Coping

This book shares the lives of 26 families that have at least one special needs sibling. Each sibling shares special moments in their lives that they have experienced due to their special needs sibling.

Special Siblings: Growing Up With Someone With A Disability
By Mary McHugh
New York, NY: Hyperion, 1999.
Pages: 238
Library of Congress Number: HV1553.M38 1999
Category: Coping

This book is for siblings of those with physical, mental or emotional disabilities. It provides helpful advice, comfort and the stories of others who have experienced similar situations. McHugh not only shares her own story, but also offers information, understanding and resources for others. She covers such issues as childhood fears about the parents’ marriage, troubles in one’s own marriage caused by caring for a disabled sibling and the urge to somehow make it all better.

Supporting Siblings Their Families During Intensive Baby Care
By Linda Rector, M.S., CCLS
Baltimore, MD: Paul H. Brookes Publishing, 2007.
Library of Congress Number: RJ253.5.F2R3115 2007
Category: Parenting/Child and Adolescent Development

This book will assist child life specialists, nurses, other health care providers and even parents to help comfort and answer the questions of siblings who have a new baby sister or brother in intensive care.

What About Me? Growing up with a Developmentally Disabled Sibling
By Bryna Siegel, PhD, Stuart Silverstein, MD
New York, NY: Plenum Press, 1994.
Pages: 296
Library of Congress Number: HV888.S54 1994
Category: Coping

This book begins with a personal account of Silverstein’s experiences as the sibling of a person with autism. The book presents a discussion of family approaches in dealing with disabilities. The book also addresses a review of research on family factors and adjustments of the non-impaired siblings along with an analysis of family coping.

Websites

Bandaids and Blackboards: When Chronic Illness – or Some Medical Problem – Goes to School
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Author: Joan Fleitas, Ed.D., R.N. Associate Professor of Nursing, Lehman College,CUNY

This is a website for adults, kids and teens with first-hand information on a variety of chronic medical conditions or disabilities. Kids and teens are encouraged to tell their stories and share their experiences with their chronic illness or condition. The site has sections about going to school, siblings, teasing, trivia, poetry, and online support. The site includes a section for parents, teachers, and health professionals with articles on illnesses and hospitals, school, siblings and other issues.

Sibling Support Project -Adults
www.thearc.org/siblingsupport
Author: A national program dedicated to the interests of brothers and sisters with special health and developmental needs.

This site contains information about Sibshops – peer support programs for school-age brothers and sisters of children with chronic conditions or disabilities. In addition, it hosts SIBKIDS, a list serve for siblings of children with special needs.

Resources for Children & Teens

Books

All Ages

Sisters, Brothers, and Disability
By Lydia Gans
Minneapolis, MN: Fairview Press, 1997.
Pages: 153
Library of Congress Number: HV888.5.G35 1997
Category: Coping

This book shares the lives of 26 families that have at least one special needs sibling. Each sibling shares special moments in their lives that they have experienced due to their special needs sibling.

2-8 years

Our New Baby Needs Special Help
By Gail J. Klayman
Omaha, NE: Centering Corp., 1996.
Pages: 15
Library of Congress Number: RJ250.K63 1996; C:2
Category: Coping

This is both a book and coloring book in one. Each page has the story line that can be read by an adult, which will aid in the discussion of the families situation. At the top of each page there are the large illustrations to color by the sibling on page shows the sister visiting her baby sister in the hospital in the “special bed”. The end of the book has a couple of pages for educating the parents what to expect out of older siblings, how to talk to them about the situation, and to make sure that the parents take care of themselves.

3-5 years

No Bigger Than My Teddy Bear
By Valerie Pankow
Petaluma, CA: Family Books, 1987.
Library of Congress Number: RJ250.P36 1987; C:4
Category: Coping

The author’s illustrated account of her son’s reactions to his premature brother offers a child’s eye view of the intensive care nursery-one which will help inform and support other children with a teddy-bear-sized new baby.
3-6 years

Hi My Name Is Jack
By Christina Beall-Sullivan
Park City, UT: Christina Beall-Sullivan, 2000.
Library of Congress Number: RJ47.5.B43; C: 2
Category: Coping

This book is about Jack, the healthy sibling of Molly who has a chronic illness and needs to go to the hospital often. Jack sometimes feels scared and jealous then angry and guilty about Molly. He wishes his parents had more time for him. When he feels this way, he finds that if he talks to Molly or his parents he feels better. His parents reassure him that Molly’s illness is not his fault.

3-8 years

Special Gift for Mike: For Brothers and Sisters of Premature or Ill Babies, A
By Marlene Walden
Houston, TX: Office of Educational Resources, Texas Children’s Hospital, 1992.
Library of Congress Number: RJ250.W35 1998
Category: Coping

This is a wonderful story for children with a premature sibling. Jennifer is very excited about her new brother, but gets upset when he can’t come home and her parents spend all their time with him. Jennifer learns that her parents love her just as much as always and that she loves her little brother too.
4-8 years

He’s My Brother
By Joe Lasker
Chicago, IL: Albert Whitman, 1974.
Library of Congress Number: HQ773.7.L35 1974
Category: Coping

In this touching story about Jamie and his challenging journey through life, the author points out the learning differences and difficulties of a child with what he and his wife call “The Invisible Handicap.” Using the voice of Jamie’s brother, the author sensitively shares with his readers a glimpse at what it is like to live with someone like Jamie.
4-8 years

Ian’s Walk: A Story about Autism
By Laurie Lears, Karen Ritz
Morton Grove, IL: Albert Whitman & Company, 1998.
Library of Congress Number: RJ506.A9 L43 1998; C:2
Category: Coping

This book is described as an excellent way for parents and teachers to explain an autistic child to others in a compassionate and informative story. While the book is geared towards young children it is good for all ages. The story is told from the perspective of the older sister and conveys the many emotions sibling of an autistic child might face.

4-8 years

My Brother Needs An Operation
By Anna Marie Jaworski
Panama City Beach, FL: Baby Hearts Press, 1998.
Library of Congress Number: RJ242.J39 1998; C:2
Category: Coping

This book tells the story of a big brother coping with his younger sibling who needs an operation. He faces many emotions, stresses and worries. The book offers tips for parents to help the children cope with their concerns, and includes games and activities that could keep an unhospitalized child amused and involved in family life.
4-8 years

Princess Pooh
By Kathleen M. Muldoon
Niles, Illinois: Albert Whitman & Company, 1989.
Library of Congress Number: HV888.M85 1989
Category: Coping

This is a story about a girl named Patty Jean Piper who resents her sister with a disability. Patty feels neglected because of the treatment and attention her sister is getting from her parents. Patty then decides to ride around in her sister’s wheelchair and realizes that Princess Pooh’s life is not so easy.

4-8 years

What About Me? When Brothers and Sisters Get Sick
By Allan Peterkin
Washington, DC: Magination, 1992.
Library of Congress Number: RJ47.5.P386 1992; C:2; C:3, C:4; C:5
Category: Coping

This is a brief narrative about two siblings, Laura and Tom. Laura was older than her brother Tom who became sick and was in the hospital for a long time. At first she thought it was her fault that her brother was sick. Laura was lonely because her family didn’t have the time away from the hospital to spend with her, but she realizes they always loved her, even when they couldn’t be with her all the time.
4-10 years

Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism
By Fiona Bleach
London,UK: National Autistic Society, 2001.
Library of Congress Number: RJ506.A9 B54 2001
Category: Coping

This detailed, but simple book is an excellent resource for children who have a sibling with autism. The book describes autism, and explains how brothers and sisters with autism may behave, and how the child can love and help their sibling with autism.
4-10 years

My Brother, Matthew
By Mary Thompson
Bethesda, MD: Woodbine House, 1993.
Library of Congress Number: HV888.T56 1992 ; C:2
Category: Coping

Through the experiences of a young boy whose younger brother is born with disabilities, the author examines ways to relate to disabled family members and teaches families, especially children, how to relate and build relationships with disabled family members. This book also explores the feelings and thought processes a sibling might go through while discovering that their brother or sister has disabilities.

4-10 years

When Molly Was in the Hospital
By Debbie Duncan, Rayve Ollikainen, Ill.
Windsor, CA: Rayve Productions, 1994.
Library of Congress Number: RJ242.D86 1994; C:5
Category: Coping

This story is told from the siblings perspective. Anna tells about the time her sister was in the hospital. This story provides the opportunity for parents to address the emotions that their other children may be experiencing.
5-6 years

I Love My Brother! A Preschooler’s View of Living with a Brother Who Has Autism
By Connor Sullivan
Statham, NH: Phat Art Four, 2001.
Library of Congress Number: RJ506.A9 S85 2001
Category: Coping

This book offers an insightful and informative first person view of the experience of life with an autistic sibling in a format that is easy to present to young children.
6-up

Special Brothers and Sisters
By Annette Hames, Monica McCaffrey
Philadelphia, PA: Jessica Kingsley Publishers, 2006.
Library of Congress Number: HQ773.6.S64 2005; C:2
Category: Coping

In this publication children & young people explain in their own words what it is like to live with their brothers and sisters, and talk about their feelings of love and frustration, joy and sadness.
6-12 years

Am I the Only One?
By Terry R. Walkowski
Buffalo, NY: United Cerebral Palsy Association of Western New York, Children Center
Library of Congress Number: HV888.A4
Category: Coping

Brothers and sisters of children with multiple disabilities share their experiences and feelings. During a series of workshops they also learn about the therapists and equipment needed by their brother or sister for their disability.

8-12 years

Oh Brother! Growing Up with a Special Needs Sibling
By Natalie Hale
Washington, DC: Magination Press, 2004.
Pages: 46
Library of Congress Number: HQ773.6.H25 2004
Category: Coping

Being the sibling of a special needs child has it’s own challenges. In Oh Brother! Becca tells how she learns to cope with her brother Jonathan’s special needs and at the same time make sure that her own needs are also being met.
9-12 years

I’m the Big Sister Now
By Michelle Emmert
Morton Grove, IL: Albert Whitman, 1989.
Library of Congress Number: RJ496.C4 E46 1989
Category: Coping

This book is based upon Michelle and Amy Emmert’s lives. Amy the older sister has cerebral palsy. Michelle shares her feelings about Amy’s disability and describes how both sisters love each other and cope with the disability.
9-12 years

My Brother’s A World-Class Pain: A Sibling’s Guide to ADHD
By Michael Gordon, Janet H. Junco
DeWitt, NY: GSI Publications, 1992.
Library of Congress Number: RJ506.H9 G6 1992
Category: Coping

The sister of Tim, a young boy with ADHD, expresses her frustration living with her brother. Children who read this story will be introduced to many basic concepts to help them understand ADHD, and they will learn some hints from the sister on how she copes.
9-12 years

Views From Our Shoes: Growing Up With a Brother or Sister With Special Needs
By Donald Meyer
Bethesda, MD: Woodbine House, 1997.
Library of Congress Number: HV894.V54 1997; C:2
Category: Coping

This book contains 45 essays written by children who have special needs siblings. These are heartfelt personal stories from people age 5 to age 18, sharing how their siblings’ disabilities have affected their lives and the lives of those around them. The book has a list of web-sites and a glossary for anyone unfamiliar with the conditions in the stories.
9-14 years

I’m Somebody Too
By Jeanne Gehret
Fairport, NY: Verbal Image Press, 1992.
Pages: 159
Library of Congress Number: RJ496.A86 G44 1992
Category: Coping

“I’m Somebody Too” is a story about siblings whose brother or sister has a chronic illness, and how they cope with jealously and feeling left out. In the story a girl named Emily feels that her parents are ignoring her. She feels that they expect her to maintain perfect behavior so that the parents can focus on her brother Ben’s problems. The book deals with psychotherapy and family issues in a clear but relatively sophisticated manner.
9-18 years

Straight From the Siblings: Another Look at the Rainbow
By Gloria Murray, Gerald G. Jamplosky
Berkeley, CA: Celestial Arts, 1982.
Library of Congress Number: BF723.G75 A56 1982
Category: Coping

With drawings and quotes from bereaved brothers and sisters, the editor creates a touching memorial to the love between siblings. The book brings out not only the sadness, but also the difficult feelings, such as jealousy and guilt that trouble the survivors. Any bereaved sibling reading this book will come away feeling included in its pages. It is full of hope and appropriate for readers of all ages.
Teens

Living with A Brother or Sister With Special Needs
By Donald Meyer, Patricia F. Vadasy, Rebecca R. Fewell
Seattle, WA: University of Washington Press, 1985.
Pages: 139
Library of Congress Number: HV888.M49 1996 and HV888.M49 1985
Category: Coping

This book is written for siblings of children with the most common disabilities. It explains the conditions and answers questions that these siblings most often ask. The book also allows the children to explore their feelings of guilt or embarrassment of having a brother or sister with a disaility.

Videos

All Ages

What About Me?
By Judith Levy, Audrey Leviton
Baltimore, Maryland: The Kennedy Institute, 1988.
Length: 30 minutes
Library of Congress Number: HV888.W53 1989
Category: Coping

This video looks at how siblings of disabled children feel and behave because of their situation. The video addresses common issues and thoughts, including frustration and anger. The video notes how children dealing with disabled siblings seem to have to grow up more quickly, and how important it is to incorporate the disabled child into the life of the normal child. The video offers helpful tips on ways to deal with feeling angry and upset and the many personal accounts bring a unique feel to the video. The video also examines the value of group discussion and learning to share one’s feelings.

6-9 years

My Brother is Sick
By Donna W. Guthrie, Valerie E. Morris
Bismark, ND: Kids Corner Ltd, 1982.
Length: 12 minutes
Library of Congress Number: RJ242.M9 1982
Category: Coping

This video offers a puppet presentation on being a sibling of a sick child. It addresses sadness, emphasizes the fact that it is okay to cry, and that the sick child has much to deal with and they thus need attention and comfort. The sibling is encouraged to not blame himself/herself for the illness of their sibling. The video reassures them that it is not their fault and shows ways they can support their sibling.

Websites
All Ages

Sibling Support Project
http://www.thearc.org/siblingsupport
Author: The ARC of the United States

The ARC’s Sibling project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. This site has information about Sibshops and peer support for school age brothers and sisters. There is a “resource” section with a list of recommended books for siblings, including a listserve for siblings of people with special needs. Back issues of the newsletter “Sib to Sib” are available.
www.siblingsupport.org
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
We believe that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues.