The following books were chosen for their content in regards to Epidermolysis Bullosa or in helping parents and siblings cope with the disability.

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Books about Epidermolysis Bullosa

The Official Patient's Sourcebook on Epidermolysis Bullosa: A Revised and Updated Directory for the Internet Age This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to Epidermolysis Bullosa, from the essentials to the most advanced areas of research. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. This is a "must have" reference book for patients, parents, caregivers, and libraries with medical collections.

Epidermolysis Bullosa - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet by Icon Health Publications  This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Epidermolysis Bullosa. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Epidermolysis Bullosa.  If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.

Tough Cookie by Lillian Sparks This biographical book tells the story of Byron Todd Sparks, a.k.a. “Tough Cookie,” and his family’s journey of faith amidst Recessive Dystrophic Epidermolysis Bullosa, a painful, incurable skin disorder. Paperback. Purchase this Book New at Gospel Publishing ($9.99) Purchase this Book Used at Amazon (around $3.00 on average) Purchase this Book at Half. Follow this link and in the search engine type Lillian Sparks (usually around $2.00-2.50 on average) Please note: the cover art may be different on earlier editions of this book.

Parents Cry Too by Lillian Sparks A follow-up to Tough Cookie, this biographical book details how the “Tough Cookie” miracle touched the hearts of thousands of people, encouraging their faith in God. Paperback. Purchase this Book New at Gospel Publishing ($9.99) Purchase this Book Used at Amazon (around $7.00 on average) Purchase this Book at Half. Follow this link and in the search engine type Lillian Sparks (usually around $2.00-2.50 on average) Please note: the cover art may be different on earlier editions of this book.

Living with Epidermolysis Bullosa (Paperback) Compiled by Silvia Corradin Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.

Thick Skinned by Dan Cogliano About the Author Dan Cogliano was born with a condition (yes, Epidermolysis Bullosa) that in some people makes even the touch of another human or drink from a glass of water a potential cause for medical treatment. But Dan's perseverance in the face of this malady paid off big time. First, as an actor, he appeared on the daytime soap opera "Another World" and in over two dozen off-Broadway classical repertory productions. Then he went on to the job of vice president in the international marketing division of "Merrill Lynch." And along the way he became a husband, father, and athlete. Book Description Here is a personal story of how we are shaped by the life we are dealt and how by rising to those challenges we forge our own lives. This is a story of getting through the pain, the tough times, and the seemingly impossible. Above all, it is story of what it means to be human.

Special Mommy Chronicles (Paperback) by Silvia Corradin The Special Mommy Chronicles is a series of columns written by Silvia C., the mom of a Special Need child (son suffers from the Recessive Dystrophic form of Epidermolysis Bullosa) which offers insights, stories and struggles that go along in raising special kids. Book may be purchased directly from the publisher by following THIS LINK. It's also available at Amazon.com and Barnes & Noble Booksellers.

Epidermolysis Bullosa : Basic and Clinical Aspects by Andrew N. Lin, D. Martin Carter (Editor) The clinical management of the rare skin disease known as Epidermolysis Bullosa (EB) poses a problem for those dermatologists who have never seen the disease before. All the information needed to treat patients with EB is now accessible in this practical guide written by recognized experts for the practicing physician. In a systematic and thorough fashion, the editors present the basic science necessary to understand the pathogenesis of the disease, as well as system by system coverage of the extracutaneous manifestations. This is the first volume ever to present clearly all aspects of Epidermolysis Bullosa in a form appropriate for use in daily clinical management.

Epidermolysis Bullosa : Clinical, Epidemiologic, and Laboratory Advances, and the Findings of the National Epidermolysis Bullosa Registry by Jo-David Fine (Editor), Eugene A., MD Bauer (Editor), Joseph, MD McGuire, Eugene E. Bauer (Editor), Alan Moshell (Editor) The first full report of the Registry, which was established in September 1986 to track the protean family of mostly inherited skin diseases. Scientists involved with the project provide a definition and historical overview and explore such aspects as the epidemiology in the US, Canadian, and European study populations; cutaneous and skin-associated musculoskeletal manifestations; the risk of selected major extracutaneous outcomes; premature death; altered nutrition; oral manifestations; the molecular biology; non-molecular approaches to treatment; and the rare acquired form. -- Copyright © 1999 Book News, Inc., Portland, OR All rights reserved Book News, Inc.®, Portland, OR

Jonny Kennedy (Paperback) The Story of the Boy Whose Skin Fell Off by Roger Stutter (Author), Nell McAndrew (Foreword) Jonny Kennedy was the star of the unforgettable Emmy award-winning documentary The Boy Whose Skin Fell Off. He was an extraordinary character determined to live an ordinary life despite being born with the agonising condition Recessive Dystrophic Epidermolysis Bullosa (EB), which meant that his skin could literally fall off at the slightest touch. It was a daily struggle he faced with courage, determination and wit, offering inspiration to millions around the world. Tragically, Jonny was just 36 when he lost a final battle to skin cancer. This is his moving, honest and uplifting story. 'I feel very fortunate to have met such a special person and I will never forget him.' - Nell McAndrew About the Author Roger Stutter was one of Jonny Kennedy's closest friends, and spent many months recording Jonny's innermost thoughts and recollections for this extraordinary memoir. Additional memories are provided by Edna Kennedy, Jonny's mum, and Nell McAndrew, who befriended Jonny in the final months before his death. It is hoped the book will raise awareness for Jonny's condition and for the charities that continue his work.

Books to help Children and Patients with EB cope

Arthur's Boo Boo Book With Peel-Off Stickers for First Aid Fun! (Medium Sized Flap Book W/Stickers/Marc Brown's Arthur) by Marc Tolon Brown In this generous-sized board book starring Arthur and "Dr". D.W., preschoolers can help out by bandaging Arthur and his friends and family with peel-off stickers that look like adhesive strips. Full color.

The Crippled Lamb by Max Lucado, Jenna Lucado (Contributor), Sara Lucado (Contributor) Joshua, the black and white spotted lamb, longed to be like the other lambs. He wondered why he had to limp along with a crippled leg, instead of running and playing in the meadow. Because Joshua the lamb was different, he often felt left out. Yet God had a very special plan for his life, as He does for all who feel alone. Joshua not only witnessed the greatest event in history, he was able to give the newborn King the one thing he needed most.

You Are Special by Max Lucado & Sergio Martinez  Max was interested in helping children understand their value—not from the world’s perspective, but from God’s. Wemmicksville is a land created by Eli, the “God” figure of the story. He creates each Wemmick in Wemmicksville uniquely, each with its own look and personality. Each story and video is a new adventure with the citizens of Wemmicksville. Punchinello is the central character, along with his friends Lucia, Splint, and Chip. When Punchinello strays from Eli, he begins to have problems. Only when Punchinello stays close to Eli does he clearly see how to walk through his life in Wemmicksville. In this heartwarming tale, Eli helps Punchinello understand how special he is—no matter what other Wemmicks may think. Children will learn a vital lesson—regardless of how the world sees them, God loves each of them just as they are.

When Will I Feel Better? : Understanding Chronic Illness by Robin Prince Monroe, Trudy Calvert (Illustrator) (Comforting Little Hearts Series) Even ordinary illness can be frightening for children, but chronic illness can be frightening for the whole family. Parents and children can overcome fears using the interactive exercises in this book to share the promises of God's eternal love and awareness.

Special People, Special Ways by Arlene Maguire, Sheila Bailey "Special People, Special Ways" presents a positive image of persons with disabilities. It shares the message that even though each of us may have something different about us, we share many commonalities. Coupled with the colorful illustrations, the book conveys the message that although painful at times, being different can also be glorious. (Gerald J. Hime, Past President, Council for Exceptional Children)

What's Wrong with Timmy? by Maria Shriver, Sandra Speidel (Illustrator) When 8-year-old Kate meets a boy who seems somehow different, she feels funny inside. After talking with her mom, though, Kate begins to understand that Timmy is just like her in many ways. Timmy has special needs; he takes longer to learn than Kate, and can't walk or run as well. But he also "loves his family, he wants friends, he goes to school, and he dreams about what he wants to be when he grows up." Kate and Timmy meet, and the seeds of a friendship are planted. For all those children who ask their parents why someone looks or acts "different," author and journalist Maria Shriver's What's Wrong with Timmy? provides a base for discussion. Kate's mother models appropriate behavior, speaking to her daughter calmly and directly, and providing examples from her own life to help Kate understand about Timmy. Illustrator Sandra Speidel's soft, intentionally hazy pastels are lovely; bold, enlarged phrases on the opposite pages of text act as captions. Shriver and Speidel collaborated previously on the tremendously popular What's Heaven?, also starring Kate and her mother. (Ages 4 to 8) --Emilie Coulter

Earl the EMU *God has a purpose for those who are different by Pat Winston, Cathy Allen (Illustrator) Children will love the story of Jason, a special little boy that can not run and play as well as other children. He and his friends Roscoe the Rooster, Hattie the Hen, Max the Baby Chick and Duke the Dog learn an important message from their new friend Earl the EMU. It is a lesson of love, acceptance and fairness. Children will discover that God has a purpose for all of us and being different has a place in God's plan. Children will further discover that making fun others because they are different does not show God's love. Children will be excited to join Jason and his friends as they discover that God has a special light in all of us, and for those who are different that light shines especially bright.

A Visit to the Sesame Street Hospital : Featuring Jim Henson's Sesame Street Muppets (Please Read to Me) by Deborah Hautzig, Dan Elliott, Joseph Mathieu (Illustrator), Joe Mathieu (Illustrator) Illustrated in full color. "Grover, his mother, Ernie and Bert visit the Sesame Street Hospital in preparation for Grover's upcoming tonsillectomy. The familiar characters change an unfamiliar hospital into a place to be trusted, and many typical questions are discussed. Valuable."--School Library Journal. s.

It's Okay to Be Different by Todd Parr From Publishers Weekly Parr (The Okay Book) combines rainbow colors, simple drawings and reassuring statements in this optimistic book. His repetitive captions offer variations on the title and appear in a typeface that looks handcrafted and personalized. A fuchsia elephant stands against a zingy blue background ("It's okay to have a different nose") and a lone green turtle crosses a finish line ("It's okay to come in last"). A girl blushes at the toilet paper stuck to her shoe ("It's okay to be embarrassed") and a lion says "Grr," "ROAR" and "purrr" ("It's okay to talk about your feelings"). Parr cautiously calls attention to superficial distinctions. By picturing a smiling girl with a guide dog ("It's okay to need some help"), he comments on disability and he accounts for race by posing a multicolored zebra with a black-and-white one. An illustration of two women ("It's okay to have different Moms") and two men ("It's okay to have different Dads") handles diverse families sensitively this could cover either same-sex families or stepfamilies and also on the opposite page, a kangaroo with a dog in its pouch ("It's okay to be adopted"). He wisely doesn't zero in on specifics, which would force him to establish what's "normal." Instead, he focuses on acceptance and individuality and encourages readers to do the same. All ages. Copyright 2001 Cahners Business Information, Inc.

Kiss It Better by Hiawyn Oram, Frederic Joos (Illustrator) Little Bear suffers a bad day filled with bumps, bruises, and hurt feelings. But Big Bear (who is portrayed as gender neutral) always has a kiss, a hug, and a bandage at the ready to soothe all pains. When Little Bear returns home one day to find that Big Bear has received very sad news, Little Bear acts from Big Bear's example: he kisses Big Bear until some of his parent's hurt is soothed away. Joos uses watercolor and ink to depict appealing animal characters in human settings and situations and portray a mutually supportive, loving relationship between a parent and child. -- Ellen Mandel Copyright © American Library Association. All rights reserved

Rolling Along with Goldilocks and the Three Bears by Cindy Meyers, Carol Morgan (Illustrator) This picture book is an adaptation of Goldilocks and the Three Bears, the classic folktale retold with a special-needs twist. Children will find all of the familiar characters and scenes from the original story, as well as a few surprises-Baby Bear uses a wheelchair, goes to physical therapy while his porridge cools, and ultimately makes friends with Goldilocks. This new version is especially appealing to children with physical disabilities. It's also an entertaining tale for all children, with or without special needs. About the Author The author, Cindy Meyers, is a Physical Therapist Assistant (PTA), who specializes in pediatrics and works with children with physical disabilities, including kids who use wheelchairs. She wrote this story as a way to explain to her own young children what it's like to have a disability, as well as to provide a supportive story for children she works with.

Susan Laughs by Jeanne Willis, Tony Ross (illustrator) Without being condescending or preachy, the words, pictures, and design of this very simple picture book show that a physically disabled child is "just like me, just like you." Only on the very last page do we discover that Susan uses a wheelchair. Before that, the simple, rhyming words and active crayon-and-pencil pictures show her in a succession of ordinary scenarios that every preschooler will recognize. Susan laughs. Susan sings. Susan's good. Susan's bad. She's mad. She's shy. She swims. She swings. She sulks. She's scared. The show and tell works. Children will enjoy seeing their common feelings and experiences. They'll be surprised by that wheelchair at the end; and then they'll accept their connection with the child who they've come to know is "just like me." Hazel Rochman Copyright © American Library Association. All rights reserved

What to Expect When You Go to the Doctor (What to Expect Kids) by Heidi E. Murkoff Everyone knows that going to the doctor can be a little scary. For a small child who may not understand why being poked, prodded, and jabbed with a needle is necessary, the prospect is especially daunting. Enter Angus the Answer Dog, a Yorkie pup who loves to answer all kinds of questions about growing up (as seen in other titles in the wonderfully appealing What to Expect series for young children, including What to Expect When the Baby Sitter Comes and What to Expect When You Use the Potty). Angus takes young readers by the hand and guides them through a visit to the doctor's office. Each two-page spread asks a question: "Why do I have to go to the doctor?" "Why does the doctor push down on my tummy?" "What's a shot?" "Do I need one?" and more, each question anticipating the next. Then, in an extremely calm and reassuring manner, Angus answers each question. Parents and children alike will welcome the honest, clear explanations about staying healthy and will enjoy the games and ideas in each section. Heidi Murkoff, coauthor of the bestselling pregnancy book, What to Expect When You're Expecting, creates a perfect read-aloud book to ease the concerns of kids and their parents. Laura Rader's cartoonish illustrations are fun and reassuring, contributing to the lighthearted tone of the book. (Ages 2 to 5) --Emilie Coulter

Don't Call Me Special: A First Look at Disability by Pat Thomas, Lesley Harker (Illustrator) This delightful picture book explores questions and concerns about physical disabilities in a simple and reassuring way. Younger children can find out about individual disabilities, special equipment that is available to help the disabled, and how people of all ages can deal with disabilities and live happy and full lives. Titles in this series for younger children explore emotional issues that boys and girls encounter as part of the growing-up process. Books are focused to appeal to kids of preschool through early school age. Written by psychotherapist and counselor Pat Thomas, A First Look At books promote positive interaction among children, parents, and teachers, and encourage kids to ask questions and confront social and emotional questions that sometimes present problems. Books feature appealing full-color illustrations on every page plus a page of advice to parents and teachers.

Arnie and the New Kid by Nancy L. Carlson From School Library Journal PreSchool-Grade 2-- The new boy Philip, "different from most kids" because he uses a wheelchair, is generally ignored by his classmates because they don't know how to include him in their games. But when Arnie, his main tormentor, falls down the stairs while teasing Philip, the usually able-bodied boy discovers firsthand how hard and slow it is to navigate on crutches. The two develop a friendship as they realize all the things they both enjoy and can share together--bird watching, reading, watching movies, and playing computer games. When Arnie triumphantly appears at school one day without his cast, he will only return to the baseball diamond if Philip can come along as coach. This is a triumphant ending to a purposeful story that will be welcomed for its lighthearted treatment of a common situation. Carlson's vividly colored cartoon illustrations feature a variety of animals humorously dressed in children's clothes. Children won't miss--but won't mind--the obvious moral. --Ellen Fader, Westport Public Library, CT Copyright 1990 Reed Business Information, Inc.

My Friend the Doctor (Hardcover) by Joanna Cole, Maxie Chambliss (Illustrator) PreS-K. Cole and Chambliss hit just the right note in this picture-book version of a visit to the pediatrician's office. As in their previous collaborations, such as I'm a Big Brother (1997) and My Big Girl Potty (2000), the focus is on the child, the presentation is honest, and the tone is reassuring. When Hannah goes to the doctor's office for a checkup, she plays in the waiting room, the nurse measures her, the doctor examines her, and Hannah waves good-bye to them. Cole doesn't fudge: Hannah does get a shot "to help her stay healthy," as preschoolers often do. It hurts momentarily, but it's just one aspect of an medical encounter that's generally positive and sometimes even fun. Directed at parents, the final page offers useful tips for preparing a child in order to make the experience a good one. Clean line drawings tinted with colorful washes and speech balloons that occasionally carry bits of text help create the upbeat tone that makes this little book such a pleasure to read. Carolyn Phelan Copyright © American Library Association. All rights reserved.

Young People and Chronic Illness: True Stories, Help, and Hope by Kelly Huegel, Elizabeth Verdick  From School Library Journal Grade 5 Up-In the first section of this book, Huegel introduces 10 young people, each of whom has a chronic illness. They explain how they were diagnosed; medical management; and how they deal with family, friends, and school. They share how they have fashioned a satisfying life for themselves despite the limitations their conditions might impose. The diseases discussed are hemophilia, diabetes, epilepsy, asthma, cancer, inflammatory bowel disease, juvenile rheumatoid arthritis, congenital heart defect, and lupus. Each chapter is accompanied by a small black-and-white photograph of its subject, followed by questions and answers about the disease and a list of resources including organizations, books, and Web sites. Part two discusses strategies for managing an illness; maintaining a relationship with a doctor; dealing with friends, family, and school; battling fear of hospitals; finding a support group; and planning for the future. The text, written in a conversational, sympathetic tone, is sprinkled with upbeat quotes. Advice is terse, well organized, and to the point, making it easy to remember, if difficult to carry out. There are many books that relate stories about the disease of the month, but Huegel's focus is on how these kids manage their own lives and how their experiences can help others cope with chronic illness. A good choice for any collection. Martha Gordon, formerly at South Salem Library, NY Copyright 1998 Reed Business Information, Inc.

Easy for You to Say: Q & As for Teens Living With Chronic Illness or Disability (Paperback) by Miriam Kaufman  Gr. 9^-12. Nobody's venting anger or hurt feelings here. Instead, this very unusual book, aimed exclusively at teens who are disabled or who have a chronic illness, focuses on individual needs. Written by a Canadian physician who works with adolescents, it is filled with very personal, even courageous questions from teens with varied medical conditions--from spina bifida to cystic fibrosis, to kidney disease. There are a few fairly general chapters--on family dynamics, friendship, and recreation. But the best sections concern medical issues and sexuality. Here, teens ask about drug interactions and side effects (Kaufman has included several useful appendixes) and broach some very specific sex-related concerns. At times, Kaufman sounds a little too much like an all-wise counselor, but she's always frank and careful to remind teens to act safely and responsibly, especially in terms of sex. Kaufman might have given teens stronger encouragement to communicate with their doctors or parents, but as it is, this is loaded with the kind of information disabled teens often need but may be too embarrassed to ask for. Stephanie Zvirin Book Description Practical information for teens and their families.  The teen years are some of the most demanding. Even the most well-adjusted youth struggles with the intense daily challenges of friends, family, school, and wider society.  These problems pale in comparison to those faced by teenagers with a handicap or chronic illness such as spina bifida or cystic fibrosis. 'Get over it,' or 'It's just a phase,' just don't work and can be offensive. Easy for you to say, is the teenager's often-heard-and accurate-response.  Easy for You to Say profiles the lives of uniquely challenged teens as they work hard to make sense of the world and their place in it. The book includes street language that teens can identify with and readily understand.  The questions posed are frank, courageous and cover such issues as: - Sex - Drugs - Family - Death.  With answers that often are not easy or pretty Easy for You to Say offers practical advice, straight talk and honest answers to questions that many would be too embarrassed to ask.

Coping with Physical Loss and Disability: A Workbook (New Horizons in Therapy) (Paperback) by Rick Ritter  Rick Ritter, MSW, has created an easy-to-use resource to help people confront a life-changing illness or disability. He could simply give good advice, relying upon his experiences as a disabled veteran, a social worker, and a competitor in events for disabled athletes. Instead, he engages the reader in answering questions, gathering support, finding resources, and taking a completely positive approach to difficult situations. The workbook format forces the reader to begin thinking about and acting upon ways to continue with a life that has become altered. Of course, altered doesn't mean over. It just means different. Ritter avoids sugar-coating those differences or the emotional, social, and physical problems that accompany them. However, he ultimately provokes the reader into finding ways to deal with those obstacles. Rick developed the exercises in the book over a long time. When he uses them himself, his own example as a survivor of physical loss is no doubt enough to lead and inspire his client. To achieve the same end, he has enlivened the book with many individual examples and case stories. This lifts the book from the useful to the indispensable. Ritter ends with a brief but inspiring look at his life, followed by a variety of resources.

Books to help Siblings

Special Siblings: Growing Up With Someone With a Disability by Mary McHugh For siblings of those with physical, mental, or emotional disabilities, here is helpful advice, comfort, and the company of others who've been there. McHugh (formerly an editor at Woman's World and Cosmopolitan, and a frequent New York Times contributor) grew up with a mentally disabled brother for whom she became responsible as an adult after their mother died. McHugh doesn't shrink from the tough issues, even when looking at her own actions. Mostly, she reports, she blocked her brother and his problems out of her life as much as possible. So on one level, this is about McHugh's own journey one viewed wrenchingly from another angle when one of her own children becomes blind and has a leg amputated as a result of complications from diabetes. But moving on from her own experience, McHugh offers information, understanding, and resources for others, on a wide range of issues: from childhood fears about the parents marriage, to troubles in ones own marriage caused by caring for a disabled sibling, to the urge to somehow make it all better (``For a sibling, there is nothing more painful than watching your mother's heart break because one of her children is wounded''). McHugh considers needs and problems for each age and developmental group, from childhood on. Real help, real comfort for those personally affected. -- Copyright ©1999, Kirkus Associates, LP. All rights reserved.

My Brother, Matthew by Mary Thompson From Horn Book: David understands his disabled little brother better than his parents do, although he feels frustrated and resentful at times as he would with any sibling. Told from David's perspective, the story is realistic and accompanied by pleasant watercolors that focus on the two boys. -- Copyright © 1993 The Horn Book, Inc. All rights reserved. Card catalog description: Though David knows frustration and resentment at times, he feels he understands his disabled little brother even better than his parents; and together the two boys experience a great deal of joy.

And Don't Bring Jeremy by Marilyn Levinson, Diane De Groat (Illustrator) What would you do if you had to choose between your friend and your brother? Moving to a new neighborhood is difficult, but Adam Krasner has the additional burden of dealing with Jeremy, his neurologically impaired brother, who can't seem to do anything right. And Don't Bring Jeremy, nominated for six state children's book awards, is the heartwarming story of two brothers, friendship, and acceptance.

My Sister is Special by Larry Jansen, Lise Caldwell (Editor), Robert Pepper (Illustrator) From the Author: When my daughter, Rachel, was born in 1978 with Down syndrome, I looked for a book that would help open a dialogue with children about disabilities. I didn't find exactly what I wanted, so I was motivated to write "My Sister is Special." It explains disabilities in general, Down syndrome more specifically, and is an excellent way to start a discussion with preschool through elementary children. It was updated in the fall of 1997, and I am very pleased with the outcome.

Views from Our Shoes : Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer (Editor), Cary Pillo (Illustrator) From Booklist , January 1, 1998 Gr. 4^-6. Although the number of books about disabled children has grown steadily, not many nonfiction books explore the feelings of a disabled child's brother or sister. These unpretentious, honest snippets, contributed by 45 children ranging in age from 4 ("My Mommy and Daddy told me that Nicole was born very early and her brain got hurt") to 18, seek to fill that gap. In talking about their sibs and their feelings, the writers admit to embarrassment ("I'm sure glad he doesn't go to my school . . . if they find out that he's my brother, they'd laugh"), anger, and jealousy. But at the same time, they show how protective and loving and surprisingly wise they are when it comes to getting along in a family that is different. Black-and-white sketches are scattered through the text, and a glossary of medical conditions and a helpful list of support sources are appended. Stephanie Zvirin Copyright© 1998, American Library Association. All rights reserved

Riding the Bus with My Sister: A True Life Journey by Rachel Simon "An amazing book...it touched my soul." --Rosie O'Donnell Rachel Simon’s sister Beth is a spirited woman who lives intensely and often joyfully. Beth, who has mental retardation, spends her days riding the buses in her Pennsylvania city. The drivers, a lively group, are her mentors; her fellow passengers are her community. One day, Beth asked Rachel to accompany her on the buses for an entire year. This wise, funny, deeply affecting book is the chronicle of that remarkable time. Rachel, a writer and college teacher whose hyper busy life camouflaged her emotional isolation, had much to learn in her sister’s extraordinary world. These are life lessons from which every reader can profit: how to live in the moment, how to pay attention to what really matters, how to change, how to love—and how to slow down and enjoy the ride. Elegantly woven throughout the odyssey are riveting memories of terrifying maternal abandonment, fierce sisterly loyalty, and astonishing forgiveness. Rachel Simon brings to light the almost invisible world of mental retardation, finds unlikely heroes in everyday life, and, without sentimentality, portrays Beth as the endearing, feisty, independent person she is. This heartwarming book about the unbreakable bond between two very different sisters takes the reader on an inspirational journey at once unique and universal.

The Normal One: Life With a Difficult or Damaged Sibling by Jeanne Safer Adults who grew up with a disabled brother or sister may have been labeled the "normal" one.  Psychotherapist Jeanne Safer addresses the premature maturity, emotional and intellectual perfectionism and deep guilt about their own health that she says many "normal" siblings experience in The Normal One: Life with a Difficult or Damaged Sibling.  Using interviews with 60 subjects who have disabled siblings and her own experience with an emotionally ill brother, Safer sensitively documents the various challenges that siblings face and offers wise, gentle counsel for dealing with these challenges. Copyright 2002 Cahners Business Information, Inc.

It Isn't Fair! : Siblings of Children with Disabilities by Stanley Klein, Maxwell J. Schleifer  This book presents a wide range of perspectives on the relationship of siblings to children with disabilities. These perspectives are written in the first person by parents, young adult siblings, younger siblings, and professionals. A series of chapters illustrates changing views about children with disabilities and their families. There is a unique collection of chapters by parents and siblings, including moving firsthand accounts. The authors show the importance of parents as teachers of their children and illustrates the growing awareness of and concerns about the family when one child is disabled. Information in families must be shared, the book asserts, and the issues of fairness, expectations, rewards, punishments, caretaking responsibilities, and negative feelings are all thoroughly discussed.

Oh Brother! Growing up with a Special Needs Sibling by Natalie Hale  Being the brother or sister of a child with special needs has special challenges. And Becca has some great ideas for dealing with them--after she accepts that she can't send her brother Jonathan to another planet! In this helpful book based on the experiences of a real-life family, Becca discusses finding the right kind of friends, getting quality time with parents, caring about a special needs sibling without becoming another parent, and much more. Told with humor and honesty, Becca's story is an inspiration to special families everywhere. Ages 8-13

Special Brothers And Sisters: Stories And Tips for Siblings of Children With Special Needs, Disability or Serious Illness (Paperback) by Annette Hames (Editor), Monica Mccaffrey (Editor), Brendan Mccaffrey (Editor) Special Brothers and Sisters is a collection of real-life accounts from the brothers and sisters of children with special needs, disability or serious illness, ranging in age from 3 to 18 years. They explain, in their own words, what it's like to live with their siblings. There is a lot of advice available for parents of a child with a disability or illness, but very little about the important issue of educating their siblings about how they feel, and why they may behave differently from other children. These stories – from 40 different families – come with related tips to help siblings deal with some of the things that happen in their family lives. The book also provides a helpful glossary to explain, in child-friendly language, the disabilities and medical conditions mentioned, including: ADHD, autism, cerebral palsy, cystic fibrosis, Down syndrome. Special Brothers and Sisters is an engaging and educational collection that will enable young people and adults to share in the extraordinary experience of being a sibling of a child with special needs, a disability or serious illness.