Siblings of Children with Chronic Illness and Disability
Parent's Perspective
Parents who have a child with a disability or a chronic health condition go through very intense emotions. Not only do you have to worry about the needs of the child who has a disability or chronic health condition, you have to worry about the other children in the family as well. I often worried that my son’s needs weren’t getting met because I had to spend so much time with my daughter. The stress of worrying about both of them was quite overwhelming.
Andrew was still very young when one day he announced that he would always take care of his sister. I wouldn’t have to worry about her if something happened to me. I never knew that he was even thinking about the future. Children can become “little adults” when faced with life’s challenges. It is important to reassure them that they are “children first” and that you have made arrangements for who would take care of “both of them” in the event that something were to happen to you. Andrew was allowed to have his own life apart from his sister, and she had her life apart from him. They always knew that they had each other to lean on.
If there was one thing that I wish Andrew would have had access to, it is Sibshops. Sibshops give children an outlet for their feelings. Imagine a huge room filled with games and laughter and other kids just like you. They have a brother or sister who has a disability or chronic health condition. Sibshops give the children a chance to express their fears and feelings in a room full of caring people. They help each other by expressing “a time when they were afraid” or a “time when they were angry” as well as “a time when they were happy.” They also learn that their feelings are normal.
My son will turn 18 in a couple of weeks. Whenever he starts to date someone new, he always has to take his sister to meet them. It is her approval he needs (not mine). They are very close, and he has taught many of his friends to communicate with sign language. It is at those times when I know I have raised a caring, compassionate son who loves his little sister. She loves her brother as well. Whenever people see them together, the love shines through.
Teresa Turnbo, BS
Coordinator, Vanderbilt Kennedy Family Outreach Center
Proud mother of Andrew and Laura
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.
Ann P. Kaiser, PhD
Professor of Special Education
Director of the Sibling Research Consortium
Team Reviewers and Monitors
Ann P. Kaiser, PhD
Harvie Branscomb Distinguished Professor,
Professor of Special Education
Vanderbilt Kennedy Center
Director of the Sibling Research Consortium
Teresa Turnbo, BS
Coordinator, Vanderbilt Kennedy Family Outreach Center
Vanderbilt Kennedy Center Institute
Resources for: Siblings of Children with Chronic Illness and Disability
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.
Mothering Multiples By Karen Kerkhoff Gromada Schaumburg, IL: La Leche League International, 1981. Library of Congress Number: RJ216.G79 1999 Category: Parenting/Child and Adolescent Development
This Revised Edition focusing on multiple births includes the following chapters; Pregnancy, Birth and Early Breastfeeding, Teamwork, Babies' Care, Family and Older Babies and Toddler Multiplies. The book is based on her own experiences as a mother of twins and as a lactation consultant.
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.
Two at a Time By Jane Seymour, Pamela Patrick Novotny New York, NY: Fireside, 2002. Library of Congress Number: RG696.S49 2001 Category: Parenting/Child and Adolescent Development
The author and contributor (both mothers of twins) bring their firsthand knowledge to guide you along the road of twin pregnancy and newborn care. In this warm and insightful resource, they lead you through each trimester, offering a wealth of practical information and personal reflection on the amazing experience of carrying, delivering and nurturing twins.
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.
What to Expect When the New Baby Comes Home By Heidi Murkoff New York, NY: Harper Festival, 2001. Pages: 24 Library of Congress Number: HQ774.M885 2001 Category: Parenting/Child and Adolescent Development
This book is good for a parent to read to their pre-school child when the family is expecting a new baby. With colorful illustrations, a dog named Angus tells kids about what to expect when a new baby becomes part of the family -- why he looks wrinkled, why she cries, why he has to take a lot of naps, why she cannot do anything herself, or why he receives presents. Created by one of the co-authors of the highly popular book, "What to Expect When You are Expecting," this book can help your child in the transition from being the only child to being a big sibling.
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.
The Family Village Library is a website that provides information about many different resources for siblings of children with chronic illnesses. It has a wide range of books, articles, and websites that concentrate on the issue of children who are siblings of a chronically ill child.
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 listserve for siblings of children with special needs.
Siblings of People With Disabilities: A Selected Bibliography www.iidc.indiana.edu/cedir/sibbib.html Author: The Center for Disability Information and Referral, Indiana Institute of Disability and Community.
This website provides a comprehensive list of books and other resources related to sibling issues.
Gilda's Club provides a meeting place where men, women, and children touched by cancer and their families and friends can find emotional and social support completely free of charge. Gilda's Club also offers support groups for adults and children who have a family member or friend with cancer, or who have lost a loved one. Services include advocacy, health education, support groups, nutrition information and youth services.
The Sibling Discussion Group was formed to provide information and support to people anticipating a role in the future care of their disabled brother or sister. This group also provides support to brothers and sisters who are the primary caregivers of adult dependent brothers and sisters. The group conducts meetings which provide information, emotional support, and social activities. About 4 to 5 people usually attend and new members can attend any meeting:
WHEN: The group meets the 3rd Thursday of each month from 6:00 to 8:00 p.m.
WHERE: Business Park I , Suite 214, 475 Metroplex Drive, Nashville, TN
WHO: Brothers and Sisters of adults with mental retardation. Child care is provided if notice is given.
Resources for: Children and Teens (according to age range)
Brothers & Sisters: It's all Relative By Charles M. Schulz New York, NY: Topper Books, 1989. Library of Congress Number: PN6728.P4 S236 1989 Category: Coping
This is a book of cartoons by the much loved creator of the Peanuts cartoons, Charles Schulz. This book gives the reader a funny look at how siblings interact.
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.
2-4 years
Trouble with Twins - A Book about Jealousy, The By Bonnie Worth Danbury, CT: Grolier Publishing, 1993. Library of Congress Number: BF723.J4B66 1993 Category: Coping
If you've ever felt jealous of someone else, you know that it isn't a good feeling, although it happens to everyone.
In this story, when Scooter and Skeeter reminded each other what made each of them special, they didn't feel jealous anymore.
2-5 years
Berenstain Bears' New Baby, The By Stan Berenstain, Jan Berenstain New York, NY: Random House, 1974. Library of Congress Number: RJ251.B477 Category: Parenting/Child and Adolescent Development
The Berenstain Bears' (Papa Bear, Mama Bear and Small Bear) make many plans preparing their home for the arrival of a new baby.
2-6 years
Twins By Monica Colli New York Swindon bologna: Child's Play International Ltd, 1992. Category: Coping
An amusing story written by a twin about herself and her identical twin sister.
2-7 years
Getting to Know the New Baby Martinez, CA.: Discovery Toys, Inc. Category: Coping
2-7 years
Visiting the New Baby By Bob Graham Martinez, CA.: Discovery Toys, Inc, 1989. Category: Coping
Wendy and Edward go with their dad to the hospital to meet their newborn baby brother. They are fascinated and a bit in awe of this tiny little person. It is a special family time.
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
Hello Baby By Charlotte Doyle, Kees de Kiefte, Ill New York: Random House, 1989. Library of Congress Number: RJ251.D69 1989 Category: Coping
This book is for the young sibling of any newborn baby. It shows how a young child tries to play and communicate with his newborn sibling.
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 Copy 2. 2005 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.
3-6 years
New Baby, The By Fred Rogers New York, NY: G.P. Putnam's Sons, 1985. Library of Congress Number: HQ774.R64 1985 Category: Parenting/Child and Adolescent Development
For a firstborn child, the arrival of a baby brother or sister is almost sure to arouse mixed feelings. This book helps to assure our firsborns to accept a new baby by assuring them of their own special place in the family-a place that no one else can ever take.
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
Katie's Premature Brother By Elezabeth Hawkins-Walsh Omaha, NE: Centering Corp.,, 1985. Pages: 24 Library of Congress Number: RJ259.K38 1985 C:2 Category: Coping
Katie describes how she feels when her brother is born prematurely. From being left with a neighbor when her mother is urgently taken to hospital to preparing for her brother to come home.
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
My Dog, My Sister, and I By Susanne Strub New York, NY: Tambourine Books, 1993. Library of Congress Number: QP84.S77 1993 Category: Coping
This is the story of a little boy who gets a little sister and a puppy. He watches both grow up and realizes that they both need a lot of care and attention, especially when they are both so little!
4-8 years
Peter's Chair By Ezra J. Keats New York, NY: Harper Collins Publishers, 1967. Library of Congress Number: RJ251.K43 1967 Category: Coping
This book shares Peter's feelings of jealously when his new baby sister comes home from the hospital. In the story Peter's family is painting all of the his baby stuff pink for his little sister. He does not like the idea of letting them paint his favorite chair from his childhood. After talking to his parents he realizes that it would be good to give up his chair and love his little sister, and when he feels less jealous, they paint it pink together.
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
See The Ocean By Estelle Condra, Linda Crockett-Blassingame, Ill. Nashville, TN: Ideals Children's Books, 1994. Library of Congress Number: RE91.C66 1994 Category: Coping
Nellie is blind and has two older brothers. Every year the family takes vacation at the ocean, and her two brothers play a game of who can see the ocean first. This year there is fog and only Nelly can see the ocean. The brothers develop an appreciation for their sister's way of "looking" at the world.
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
Someone Likes You Beary Much By Children's World Learning Centers Leukemia Society of America Golden, CO: Children's World Learning Centers, 1995. Pages: 20 Library of Congress Number: RJ416.L4S66 Category: Coping
This activitiy book helps young children, whose sibling has cancer, deal with their feelings and concerns. The cheerful tone and illustrations help children talk about some of the issues that they face.
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.
7-10 years
Becky's Story By Donna Baznik Washington, DC: Association For The Care Of Children's Health, 1981. Library of Congress Number: RJ242.B39 1981; C:3 Category: Coping
Becky is a 6-year-old girl whose brother Dan is seriously injured in an accident. Becky expresses all her turbulent feelings during her brother's hospital stay and talks about how her parents help her through it.
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
Brothers and Sisters: Growing up with blind siblings By Nancy Chernus-Mansfield, M.A,, Marilyn Horn, L.C.S.W Santa Monica, CA: Red Dog Films, 1992. Length: 12 minutes Category: Coping
Kids and parents talk about experiences, personal accounts of dealing with blind family members. This video emphasizes the fact that it’s not the sibling’s fault that the child is blind and that blindness is not contagious. The video encourages an understanding of blindness as being just “the way it is.” The video also addresses the issue of parents being overprotective of the blind child and the importance of being open with one’s emotions and feelings.
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.
2-8 years
I'm a Little Jealous of That Baby By Donna W. Guthrie, Valerie E. Morris Bismark, ND: Kids Corner, Ltd., 1981. Length: 13 minutes Library of Congress Number: BF723.J4 I5 1981 Category: Parenting/Child and Adolescent Development
This video shows how an older sibling might be jealous towards a new baby. It also shows how the older sibling can deal with his or her feelings. The importance of being a big sister or brother is emphasized.
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.
Cancer Source Kids provides information about cancer to kids, teens and parents. The website is divided into sections for different age groups and includes activities, games and art to help children learn about cancer and cancer treatment.
This site provides information about a variety of health conditions in both child-friendly and teen friendly language. The condition itself, cause, treatment, what doctors do, and living with the condition are typically addressed.
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.
7-18 years
Siblings Site, A http://www.asiblingssite.com Author: 19-year-old Rebecca's younger brother suffers from arthritis.
The purpose of this site is to give the brothers and sisters of chronically ill children a place to go where their feelings and experiences can be shared. It is a place where they will find other kids their age who understand what they are going through. It is an area online dedicated to the brothers and sisters, while they themselves may not be afflicted with these illnesses, must deal with them every day. It also provieds interesting and hopefully helpful facts on how to make life more fun, comfortable and easier for the ill sibling and the entire family. There is also "Mom's Page", where a real parent gives advice to the sibling of an ill child.
Teens
Teens Living With Cancer http://www.teenslivingwithcancer.org/home.asp Author: At this website, teens can get extensive information about their sibling's disgnosis. in addition, they can join the discussion board for siblings and connect with other siblings of cancer patients. Articles written by other sibs or by teens with cancer who want to share their thoughts about brothers and sisters are posted.
Noogieland is a special program for children with cancer and for children whose family member has cancer. Noogieland members come together for support, learning, sharing and fun activities. Weekly opportunities are available for children from ages 3 to 17. In "Sibling Spot", children who have a sibling with cancer meet to talk about their feelings and special needs. Teens meet separately to share experiences, support one another and have a great time. Call for specific days and times and to make a reservation. There is no charge for participating in any activities at Gildas Club.
7-12 years
Sibshops Kennedy Center, Vanderbilt University, Box 40 Peabody College Nashville, TN 37232 Phone: (615) 322-8244
Sibshops is a peer support program for school-age brothers and sisters of children with special needs, providing social and emotional support in a recreational atmosphere. Kids have an opportunity to share their feelings with other kids who understand. Planning for a local chapter is underway. Currently there are chapters in Franklin and Knoxville.
The Sibling Discussion Group was formed to provide information and support to people anticipating a role in the future care of their disabled brother or sister. This group also provides support to brothers and sisters who are the primary caregivers of adult dependent brothers and sisters. The group conducts meetings which provide information, emotional support, and social activities. About 4 to 5 people usually attend and new members can attend any meeting:
WHEN: The group meets the 3rd Thursday of each month from 6:00 to 8:00 p.m.
WHERE: Business Park I , Suite 214, 475 Metroplex Drive, Nashville, TN
WHO: Brothers and Sisters of adults with mental retardation. Child care is provided if notice is given.
Please notify us if you have corrections to any information presented on this health topic.
All information on this website is for educational purposes only. Specific medical advice, diagnoses, and treatments can only be given by your personal health care professionals
