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.

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs (Paperback) by Don Meyer (Editor), David Gallagher (Foreword) Give teenagers a chance to say what’s on their minds, and you might be surprised by what you hear. That’s exactly what Don Meyer, creator of Sibshops and author of VIEWS FROM OUR SHOES did when he invited together a group of 80 teenagers, from all over the United States and abroad, to talk about what it’s like to have a brother or sister with special needs. Their unedited words are found in THE SIBLING SLAM BOOK, a brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities.  Formatted like the slam books passed around in many junior high and high schools, this one poses a series of 50 personal questions along the lines of:  "What should we know about you?"  "What do you tell your friends about your sib’s disability?"  "What’s the weirdest question you have ever been asked about your sib?"  "If you could change one thing about your sib (or your sib’s disability) what would it be?"  "What annoys you most about how people treat your sib?"  THE SIBLING SLAM BOOK doesn’t "slam" in the traditional sense of the word. The tone and point-of-view of the answers are all over the map. Some answers are assuredly positive, a few are strikingly negative, but most reflect the complex and conflicted mix of emotions that come with the territory. Whether they read it cover to cover or sample it at random, teenagers will surely find common ground among these pages and reassurance that they are not alone. It is a book that parents, friends, and counselors can feel confident recommending to any teenager with a brother or sister with a disability.  About the Author Don Meyer is the Director of the Sibling Support Project of The Arc of the United States and the creator of the Sibshop model. His books include VIEWS FROM OUR SHOES, UNCOMMON FATHERS, and LIVING WITH A BROTHER OR SISTER WITH SPECIAL NEEDS. He has conducted more than 200 workshops for siblings, parents, and service providers in the United States and all over the world. He lives in Seattle with his wife, Terese, and their four children.

Books to help Parents

Coping With Your Child's Chronic Illness by Alesia T. Singer, Alesia T. Barrett Singer From Library Journal Psychologist Singer has written an accessible introductory general guide for caregivers of chronically ill children. Specific diseases are not addressed. The book centers on coping with the shock of diagnosis; educational resources, including the child's physician, library, support groups, and Internet sites (URLs for authoritative web sites are included); advocacy for the child, parents, and other family members with healthcare and school professionals; how to explain illness and treatment to children in age-specific terms; and handling stress, burn-out, and depression in the child, parents, or siblings. Reassuring and helpful, this small volume is a first step for parents of newly diagnosed children, one of few such titles (see also Suzanne Levert's When Your Child Has a Chronic Illness, Dell, 1995). As a companion book, Robin P. Monroe's When Will I Feel Better? Understanding Chronic Illness (Concordia Pub., 1998) offers similar information in terms preschoolers can understand. Recommended.? Anne C. Tomlin, Auburn Memorial Hosp. Lib., NY Copyright 1999 Reed Business Information, Inc.

In Time and With Love: Caring for the Special Needs Infant and Toddler by Marilyn Segal, Roni Leiderman, Wendy Masi (Contributor) From the author of the acclaimed Your Child At Play series, illustrated with over 100 photos, and based on the latest research, this entirely newly designed edition, gives parents of preterm and handicapped children from birth to preteen sensitive, practical advice on care and activities to enhance development. Written in a jargon-free, parent-friendly style, this generously illustrated book is filled with advice on nursing, feeding, dressing, interacting with siblings, discipline, and social skills development. Segal's warm, positive approach towards childrearing helps parents deal effectively with the particular issues of raising handicapped children, such as anger and favoritism, coping with advice from doctors, tough decision-making, and much more. A mother of a child with disabilities herself, the author offers an entire section on games and activities that can promote emotional development, encourage motor and language skills, and are just plain fun for parents and children alike. This new edition has been expanded to include advice on play and care for toddlers and older children.

A Special Gift: a Devotional For Mothers Of Children With Unique Challenges by Carrie T. Gruman-Trinkner When a child who has special problems is born, Carrie Gruman-Trinkner insists that this little one is a wonderful gift from God—not in spite of those problems and differences, but because of them. She understands the struggles that parents of children with differences go through, but also says, "Rejoice. God has given you a precious and wondrous gift—one that will touch your heart forever." This book is written to express the needs of parents of older children as well as those who are just beginning their journey as the parent of a child that faces physical and development challenges.

When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care, Revised Edition by Mark L. Your Child Has a Disability Batshaw (Editor) The revised and expanded edition of this must-have guide is a proven resource for caregivers meeting the demands of raising a child with a disability. Readers will get updated, expert advice on a wide range of medical and educational issues, and detailed coverage of the daily and long term care requirements of specific disabilities. Answers to frequently asked questions follow the chapters to clearly address common parent concerns like behavior, medication, and potential complications. New and expanded chapters have been added to explore the latest care issues including prematurity, early intervention, legal rights, attention-deficit/hyperactivity disorder, learning disabilities, genetic syndromes, and changes in health. Not exclusively for caregivers, this guide is for anyone who seeks clear, user-friendly information for working with children with disabilities.

You Will Dream New Dreams : Inspiring Personal Stories by Parents of Children With Disabilities by Stanley D. Klein, Kim Schive Each year, 40,000 babies with disabilities are born, and another 80,000 children will develop a major developmental disability by the age of 10. Knowing that "parents' strongest allies will always be other parents," Klein and Schive have collected from all over the country stories by parents of children with special needs. You Will Dream New Dreams is a remarkable parent's support group in print. The shared narratives come from those with newly diagnosed children, adult disabled children, and everything in between; their stories are short and unfold in plain language just what the parent suffering from informational and emotional overload needs. These experiences offer hope and encouragement and serve as a reminder that there are others out there who can help. The appendix includes resources to help parents track down local information and support. Klein is a cofounder of Exceptional Parent magazine and Schive is an associate editor there, so one can assume that this book will get ample publicity from that publication, the one most read by the target audience. This one will be requested. Essential for all consumer health collections. KellyJo Houtz Griffin, Eatonville, WA

Special Kids Need Special Parents : A Resource for Parents of Children With Special Needs by Judith Loseff Lavin The label special needs applies to a tremendous range of children, from those with physical issues like spina bifida or deafness to mental or emotional differences like ADD or Down syndrome. While each of these difficulties comes with its own specific set of frustrations and delights, families with special needs children face many similar challenges: finding qualified child-care and therapy; dealing with the daily realities of teasing, pain, and hospitalizations; and the impact that these special needs can have on relationships between parents, siblings, and extended family. Various chapters attempt to cover the perspective of parent, child, and other siblings, and each chapter ends with a short list of important points. Behavioral and emotional topics are discussed first, including depression, grief, teasing, guilt, and techniques for encouraging appropriate behavior from your child, regardless of his special needs. Physical issues like chronic pain, hospitalization, and prosthetics are covered in later chapters, and with the understanding of emotional issues gained from the earlier parts of the book, readers will feel totally prepared to act as their child's advocate with teachers and doctors alike. The age of your children is irrelevant to the usefulness of this book--even if your child is already a teen, you'll find plenty of great advice in navigating the continual issues of those with special needs. --Jill Lightner

Nobody's Perfect : Living and Growing With Children Who Have Special Needs by Nancy B. Miller, J.C. Dieterle (Illustrator) This innovative book's straightforward, easy-to-read chapters offer 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. Candid, inspiring, and often humorous reflections of four mothers who are raising children with disabilities are included throughout. This book also provides an exceptionally sensitive portrayal of parenting and reaches across a wide range of special needs.

A Difference in the Family : Living With a Disabled Child by Helen Featherstone In this wise, compassionate account, Helen Featherstone, educator and mother of a severely disabled child, traces the long, often heartbreaking road toward acceptance of disability. Drawing on interviews with parents and professionals, published accounts, and her own personal experience, Featherstone discusses how parents and siblings cope with their feelings of fear, anger, guilt, and loneliness and explains what kind of support and understanding can be provided by doctors, therapists, and teachers. Anyone whose life is touched by a physical or mentally handicapped child will find in these pages reassurance and invaluable guidance.

Raising a Child Who Has a Physical Disability by Donna G. Albrecht, Robert Miller Parenting a child who has a physical disability can be complicated. This book will make your job easier. Compassionate, helpful, and based on real-life experience, it will help you handle every facet of raising and loving your special child, including: Finding the right physical and mental health professionals Solving stressful situations within the family Boosting your child's confidence and self-esteem Developing a proper support team you can trust Dealing with hospitalizations and emergencies Handling medical equipment at home Managing medications, special diets, and hygiene needs Getting a reluctant school district to meet your child's educational needs Selecting a guardian or arranging for long-term custodial care You'll also find information about school placement options, the Individualized Education Program (IEP) and lists of medical specialists, organizations, and government programs that offer help for children with physical needs.

Sometimes Miracles Hide : Stirring Letters from Those Who Discovered God's Blessings in a Special Child by Bruce Carroll (Editor ) This tremendously touching book is inspired by the stirring letters Bruce Carroll received from those who were impacted by his song "Sometimes Miracles Hide." In these deeply moving letters of poured-out hearts and portraits of faith, you will see how God took what was first perceived as bleak news and circumstances and turned it into a miracle of discovery and devotion. Along with letters from people who discovered the "hidden miracles" of the Great Miracle Maker, you will be touched and encouraged by "victory stories" of special children and their families, beautiful Scripture prayers, and inspirational messages. With the enclosed CD of the song, this book makes a great gift for yourself or those who need to find the hidden miracles in their lives.

From the Heart : On Being the Mother of a Child With Special Needs by Martha Grady, Jayne D. B. Marsh (Editor) Nine mothers explore the intense, sometimes painful, emotional terrain of raising children with special needs in eye-opening narratives developed from their parent support group meetings. The children who shape these women's lives have disabilities that include autism, Down syndrome, Tourette syndrome, ADD, and multiple disabilities. From the Heart is organized around several themes: relationships with professionals; family life and school issues; and issues about the "self" and closest friends and family. Their experiences resonate with the common struggles of healing; being heard and understood; coping with life; and dealing with greater emotional intensity than most parents do. In revealing what is most important and most difficult for them, these mothers affirm the experience of other parents like themselves. From the Heart speaks to anyone who may know little about raising a child with special needs -- until they have one and must then forge a strong family unit nonetheless.

Uncommon Fathers : Reflections on Raising a Child With a Disability by Donald J. Meyer (Editor) So many times in a family with special needs, the mom gets involved with taking care of the child and the other kids, and the dad gets left out. Dads have feelings too, and these fathers tell how they coped with having a special child. The author of each essay has a child with special needs. Each has taken the time to express how the birth and life of his child has changed his life. These fathers are truly special. We all think that we could rise to the occasion and parent a child with special needs but these men are doing it and doing it better than I could ever hope to do myself. It's not too often that you read a book written by someone living through the experience who makes no attempt to get credit for what he's done.

When Bad Things Happen to Good People by Harold S. Kushner Rarely does a book come along that tackles a perennially difficult human issue with such clarity and intelligence. Harold Kushner, a Jewish rabbi facing his own child's fatal illness, deftly guides us through the inadequacies of the traditional answers to the problem of evil, then provides a uniquely practical and compassionate answer that has appealed to millions of readers across all religious creeds. Remarkable for its intensely relevant real-life examples and its fluid prose, this book cannot go unread by anyone who has ever been troubled by the question, "Why me?"

After the Tears : Parents Talk About Raising a Child With a Disability by Robin Simons In this deeply sensitive book, parents of disabled children describe with affecting candor how they first confronted their shattering experience--and then recovered to emerge stronger, healthier, and abler to cope and help their children. Black-and-white photographs.

Changed by a Child : Companion Notes for Parents of a Child With a Disability by Barbara Gill Parenting is always tough, but parenting a child with disabilities, serious injuries, or chronic illness can be a life-changing, profoundly disrupting experience. In Changed by a Child, Barbara Gill provides brief meditations and passages about the challenges, grief, faith, hope, and other feelings and experiences of parents who have a disabled child. Gill's son has Down syndrome, and she writes with the authority and credibility of a parent who has been through it herself. The brief pieces in this small, handsome book are divided into three sections: "In the Beginning," "Rounding the Curves," and "Transformed." It's a credit to Gill's experienced wisdom and her skills as a writer that this material never becomes sentimental or sugary. Temple Grandin, a woman with autism and the author of Thinking in Pictures, writes, "I wish my own mother had had this book when I was a child. If she had read this book she would have realized that she was not alone." For those parents who do feel alone, this book may serve as a kind and compassionate companion. --Ericka Lutz --

Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability by Robert A., Ph.D. Naseef This important book is a must-have guide for any parent of a child with a disability as well as anyone who works with or cares for those families. Special Children, Challenged Parents shares the unique perspective of a father of a son with autism, with additional reflection from his perspective as a clinical psychologist who specializes in working with families of children with disabilities. This moving book illustrates the impact that a child's disability has on the entire family. It is a valuable aid to parents dealing with fear, guilt, shame, sibling rivalry, marital strain, and other challenges. Though the author's personal experience is with autism, this book will be a valuable resource for families of children with a wide range of disabilities. Readers learn about resources, such as support groups, for working through complex emotions and about techniques for communicating effectively with professionals. Special Children, Challenged Parents addresses issues of bonding between parent and child and presents strategies for dealing with challenging behavior. Additional chapters are devoted to special issues for the family of a child with a disability, including the relationship between the parents, the effect on siblings, and the needs of fathers, who the author feels often require special support to express and deal with their emotions in the challenging role of parent to a child with special needs. This book provides a unique and touching look at parenting and disability.

At the Feet of Ordinary Women: Finding Yourself in Titus 2:4-5 by Angie Conrad (Editor), Janet Cox, Tammy Eagan, Sandy Kershaw, Pam Miller Angie Conrad has two teen-age boys with Recessive Dystrophic EB and co-authored this book which is now available thru her or bookstores (click on the image or the title to purchase thru Amazon). It is a Christian book based on Titus 2:4-5 (mentoring) with a bible study. In it, she discusses some of her struggles raising two children with EB. She hopes it can be a help and inspiration to mom's raising EB children. She will donate part of the proceeds from the book to research for EB. For autographed copies send $14.00 plus $2.00 shipping: Angie Conrad 630 W. Ravinwoods Rd. Peoria, IL 61615 She can be reached via email at yaz001@aol.com Book Description from Amazon Do you want to be a godly woman, but also find yourself wanting to be seen by the world as successful? Have you ever read Proverbs 31 and decided that becoming a godly woman is impossible? The five authors of At the Feet of Ordinary Women came together with a common desire to minister to other women according to Titus 2:4-5. In that brief passage, the apostle Paul presents a profound, God-breathed instruction on just how to be a godly woman. Understanding the incredibly valuable role of mentoring is the basis for this helpful work. Built on that basis, the authors share wisdom on loving your husband and your children; responding to authority; and being self-controlled, pure, and kind. Each chapter includes a Bible study that will help you examine the topic and related Scriptures. At the Feet of Ordinary Women is a great Bible study to help you learn the keys to being a godly woman. And once you've learned and applied these concepts, you'll see that the rewards of the Proverbs 31 woman are far more attainable than you once imagined.

In This Together by Dawn Atkinson Being the parent of a child with special needs is a powerful experience and an awesome responsibility. It can bend you or break you, but either way, it will change you. It becomes a journey that you embark upon with your child. In the beginning, you will learn the true depths of your emotions; in the middle, when you think that your reserve of strength has been depleted, you will learn that you can draw strength from your child; as the journey continues, no matter the amount of your child’s limitations, you will learn that your child is the teacher and that you are the student. The lessons are sometimes subtle but are always profound.

Natural Harmony : Jade's Story by Gail Albrechtson Frank, courageous, and deeply moving, Natural Harmony is the memoir of an endearing little girl named Jade, who was born with Down syndrome and a congenital heart defect. Placed in foster care at birth, she was eventually reunited with her mother, who struggled against all odds to get the best for her child. While the story recounts many setbacks and disappointments, its heart is Jade herself, with all of her comical antics. Despite the formidable obstacles she faced at times, this child was able to elicit genuine, deep emotion from everyone who came into contact with her. Readers will be enlightened by Natural Harmony's universal life themes of frustration and coping, sadness and joy, loss and lasting love--and they will be touched irrevocably by this heartfelt re-creation of Jade's unique spirit.

A Special Kind of Love: For Those Who Love Children With Special Needs by Susan Titus Osborn, Janet Lynn Mitchell  All children are special, but some children have special needs. Where do the parents of a "special-needs child" go for comfort? What other individuals do they know who share their daily struggles, while watching their child try to "fit" into a normal world? A Special Kind of Love: For Those Who Love Children with Special Needs is written for these moms, dads, grandparents, foster parents, and extended families who live with these children on a day-by-day basis. This book is also designed for teachers, doctors, social workers, friends of the family, and pastors who work with these children.

Special Parent, Special Child by Tom Sullivan  Parents of children with disabilities share their trials and discoveries with others, revealing their special struggles, their methods for overcoming problems, and their advice to others. Six families were chosen for presentation in order that their experiences could be presented in-depth: children's disabilities include blindness, cerebral palsy and Down syndrome, and the parents' point of view is probed in depth. This is a remarkably moving book with heartfelt revelations from families who have truly "been there". Anyone who has struggled with the issues of disability in their life will feel seen by this reading. Anyone who is friends of families with these challenges would be well advised to read this book and gain a deeper understanding of "how they do it" and the trials and triumphs within.

The Resilient Family: Living with Your Child's Illness or Disability by Paul W. Power, Arthur E. Dell, Ph.D Orto, Arthur E. Dell Orto  The Resilient Family: Living With Your Child's Illness Or Disability by rehabilitation counseling experts Paul W. Power & Arthur Dell Orto, is a practical, "reader friendly" instructional guide for families in crisis, addressing immediate and long-term problems, including the means to work with and overcome them. The Resilient Family expertly and accessibly addresses such issues as how to handle stress, the process of working with professionals, successful means of coping with crises, and more. The Resilient Family is a general yet highly useful resource for balancing both emotional and physical difficulties and especially recommended reading for families having children with long-term special needs.

Chronic Kids, Constant Hope: Help and Encouragement for Parents of Children With Chronic Conditions (Paperback) by Elizabeth Hoekstra, Mary Bradford No one is prepared when the doctor looks at you after examining your child and his/her demeanor gives away the news: your child is seriously ill. Everything changes. What was a normal day becomes a vacuum that keeps you and your family prisoner while the rest of the world continues to move, breathe and enjoy life. You feel you're suffocating as well meaning people throw words like "I know how you feel" at you when they can't possibly know how you feel. You vacillate between wanting to scream or disappear, finding that it's a dream and your family is intact. But it isn't a dream, and it won't go away. And though you shout "THIS ISN'T FAIR," and it isn't, nothing changes. As two mothers who are also nurses, the authors readily admit their medical backgrounds are not necessarily an asset when your child is the subject of chronic illness. They take you through the experiences shared by any parent who finds that in a few seconds, their future and that of their child has been forever altered by the ravages of the disease. There are implications for the family, and especially those for the caregivers and the siblings. Hoekstra and Bradford draw upon their strong Christian faith to answer in part the questions "Why?" and "Why me?" Their practical advice coupled with their spiritual insights make this a MUST READ for the parents of chronically ill children. As a grandparent of a child born with severe heart problems, the book was a wonderful find. It's been given away nearly a dozen times -- to parents of a child with a fast growing tumor; to parents sitting in the neonatal unit of a children's hospital; to a pastor who often finds himself counseling heartbroken parents who need answers. The final result will depend on the outcome of each story, but for this reader, the encouragement given by these mothers provided a way to endure the days of shock, frustration and discouragement. The sun is bring again, not because the circumstances have changed, but because the perspective has sharpened, thanks to Bradford and Hoekstra.

Ordinary Families, Special Children: Systems Approach to Childhood Disability, A: Second Edition (Paperback) by Milton Seligman, Rosalyn Benjamin Darling  "Milton Seligman and Rosalyn Darling have done a wonderful job describing the impact a child's disability can have on a family. They deserve special praise for their attention to the frequently overlooked concerns of fathers, siblings, and grandparents. The user-friendly discussion of family systems and the many insightful quotes from family members will make this book valuable to family members and service providers alike." --Donald J. Meyer, MEd, Director, Sibling Support Project, Children's Hospital and Medical Center, Seattle, Washington; editor of Uncommon Fathers: Reflections on Raising a Child with Special Needs.  "The second edition of Ordinary Families, Special Children continues in the fine tradition of the first. The book, firmly anchored in empirical research, brings the laboratory data alive with commentary by mothers, fathers, and others who love a child with a disability. Seligman and Darling offer a critical look at the literature, blended with human wisdom about coping effectively in the face of a family crisis." --Sandra L. Harris, PhD, Professor and Dean, Graduate School of Applied and Professional Psychology, Rutgers, The State University of New Jersey "The revised edition of this superb text provides a comprehensive review of the topic which is relevant to an international readership. It contains an extremely readable account of the essential information needed by professionals in order to develop effective working relationships with parents of children with disabilities. It should be on the required reading list for all teachers, social workers, therapists, psychologists and medical staff concerned with childhood disability." --Garry Hornby, PhD, Senior Lecturer in Education, University of Hull, England "...An important work...Its summaries of research and theory provide an excellent overview and introduction to work with families with disabilities." --Diana Garland, Journal of Family Ministry "Honest, respectful and empathetic dealings with developmentally disabled youngsters and their families is difficult for school professionals because so few of us have walked in their shoes. This book has provided my school psychology students with the knowledge and skills needed to work effectively with the families of the developmentally disabled. It goes further than the first edition by providing additional materials and including recent research, new programs and approaches that have emerged during the past several years, legal changes, and new resources that have been developed for families." --Marla Brassard, PhD  "This second edition offers a much broader perspective on the adaptation of families to disability, reflecting changes in both the authors' perspectives and experiences, as well as changes in the social context for this counseling since the original publication....The unexpected bonus, in the last chapter, is a clearly outlined family-needs identification instrument that will be invaluable to professionals looking for the elements of family-centered care. Clearly written and logically developed, with an open-minded approach to the mutual learning that goes on between professionals and these wonderfully resilient families they work with, and an extensive and up-to-date bibliography, this book should be recommended reading for anyone counseling children with disabilities and their families, including medical professionals outside of the mental health field." --Journal of Psychosomatic Research.

More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs (Paperback) by Heather Fawcett (Author), Amy Baskin (Author) "Find a child with special needs and you find a mom who must fill many roles and become an educational, legal and medical expert. By necessity she becomes More Than a Mom. As parents of children on the autism spectrum, authors Amy Baskin and Heather Fawcett understand that 'extraordinary parenting responsibilities can create extraordinary pressures.' They have drafted a blueprint to help moms not only cope with daily demands but reach for greater fulfillment in life. This book is not about being a super mom, but rather about finding balance, making tough decisions and developing good coping strategies. One in five families in the United States has a child with special needs, yet each of us feels alone and desperate at times. This book fills a much-needed void by addressing the struggles that mothers and caregivers experience.

Married with Special-Needs Children: A Couples' Guide to Keeping Connected (Paperback) by Laura E. Marshak (Author), Fran P. Prezant (Author) At last, a guide that speaks to parents about how to work on marital issues while juggling the demands of raising a child with a developmental disability, serious medical condition, or mental illness. In writing this practical, empathetic guide, the authors draw on their combined professional experience in marital counseling and parent training, as well as on the experience and advice of hundreds of parents of children with special needs. Married with Special-Needs Children looks at the ways in which having a child with special needs can make it more difficult for a marriage to thrive and how a child’s intensive needs can change the structure of a marriage. The authors examine many of the underlying stresses and common pitfalls—-a couple’s differing coping mechanisms and expectations of a child, communication breakdowns and difficulties resolving conflicts, for example. They then present a wide range of strategies for handling or preventing these problems. Marshak and Prezant also describe what makes a marriage strong, such as continuing to share connections outside of parenting roles, keeping a sense of autonomy, and sharing childcare responsibilities. Parents get advice about the importance of romance and intimacy and the benefits of finding time for each other even when they feel too tired or overwhelmed. In addition, the book deals with serious marital troubles and divorce considerations. Throughout are quotes from husbands and wives, offering special insight into what was especially difficult for them, what solutions they’ve discovered, and what they wished they’d done differently. For parents looking for ways to strengthen their marriage, prevent future strife, or resolve or move on from significant relationship difficulties, this guide offers guidance and expertise for taking the next step. Married with Special-Needs Children is also invaluable to mental health professionals, giving them a realistic view of what many of their clients are dealing with on a day-to-day basis.

Misc. Helpful Books

Just Say Mikey by Clint Adams In today's world, a climate dominated by technological advancements, it may be time to play spiritual "catch up." Upgrades provide infinite options, but now more than ever people are finding one, single enhancement to be the most important they will ever implement, the elimination of fear from their lives. Miguel, the central character in this mainstream novel for adults and young adults is unique, yet he shares a trait common to many children; a lifetime measured by days instead of years. Miguel happens to live with the skin-blistering disease Epidermolysis Bullosa, but he spends little time thinking about it. For Miguel, living with fear is far more deadly than this potentially fatal disease that encompasses his life. Miguel happens to command an extraordinary ability to view life as few others do, with razor-sharp insights and an unwavering spiritual conviction that all things are possible to those who believe. The action in this novel revolves around Miguel's many changes and transformations as he comes to realize that he was put on earth for a purpose, to teach others about the enormous power of belief and faith (in themselves)…just as ( Miguel believes) God intended. Just Say Mikey is told solely through Miguel's point of view, yet it is not a children's (juvenile or middle-grade) book. Opposing perspectives dominate the three main characters in this book. The protagonist, of course, is Miguel, a boy who is open to change, open to any new ways of keeping himself alive. Throughout the course of this story Miguel learns and applies these new ways taught to him by his Aunt Shirley (Kirkland), a woman who may be thought of as eccentric, revolutionary, and wise all at once. The antagonist is fear itself, personified in this story by Miguel's mother, Shirley's sister, Sharon Kirkland-Estes, a woman who loves her son dearly, but happens to be paralyzing him with her imposing fears and (dis)beliefs. The geographical setting is comprised of three radically different environments within the San Francisco Bay Area, all in present-day. First is the luxurious, opulent, thirtieth-floor Nob Hill (San Francisco) apartment in which Miguel and his mother live. Second is Aunt Shirley's serenely beautiful and sanctuary-like house in the Berkeley hills. Third is the hygienic and medicinal world of the Lucille Salter Packard Children's Hospital at Stanford University (Palo Alto/Menlo Park). Many other Bay Area locales are significantly featured: Big Sur, Bodega Bay, Golden Gate Park, Marin County, and more.

Swimming in the Starry River : A Novel by P. Carey Reid Reid's heartrending portrait of a family attempting to cope with the chronic illness (Epidermolysis Bullosa) and death of a young child is exquisitely and sensitively rendered without ever becoming maudlin or sentimentalized. Born with a virulent and physically debilitating skin disease that has sapped her strength and scarred and ravaged her tiny body, six-year-old Stella Kaldy finds solace in the stars during her nightly walks with her father, who teaches her about the constellations and recounts the ancient mythological legends concerning the heavens in a tender effort to enrich his only child's brief tenure on earth. When Jim Kaldy gives up his job in order to relieve his mentally and spiritually fatigued wife of the arduous task of caring for Stella on a daily basis, he not only forges a more powerful bond with his beloved daughter but also experiences both the profound joy and the despair associated with ministering to a fatally ill child. An inspirational and uplifting chronicle of courage, frustration, and compassion from a tremendously gifted and insightful new talent. Margaret Flanagan Copyright© 1994, American Library Association. All rights reserved --

Journey Through Heartsongs by Mattie J. T. Stepanek, Jimmy Carter, Mattie J.T. Stepanek Book Description Mattie J.T. Stepanek takes us on a Journey Through Heartsongs with more of his moving poems. These poems share the rare wisdom that Mattie has acquired through his struggle with a rare form of muscular dystrophy and the death of his three siblings from the same disease. His life view is one of love and generosity and as a poet and a peacemaker, his desire is to bring his message of peace to as many people as possible. About the Author Eleven-year-old Mattie Stepanek has been writing poetry and short stories since the age of three. In 1999 he was awarded the Melinda Lawrence International Book Award for inspirational written works by the Children's Hospice International. He has served as the Maryland State Goodwill Ambassador for the Muscular Dystrophy Association and in 2002 he will become the National Goodwill Ambassador. He lives with his mother Jeni, where he is home schooled.

In the Shadow of Illness by Mrua Bbluebond-Langner, Myra Bluebond-Langner 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. The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness--from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives. Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

Extraordinary Friends (Let's Talk About It) by Fred Rogers, Jim Judkis (Photographer) How do you get to know someone in a wheelchair? Is it okay to ask questions when you see someone who is different from you? Written for the child without special needs--the child with the questions--this book opens up a difficult subject to discussion. Mister Rogers challenges the stereotypes that often plague children with special needs and celebrates six children who are extraordinary friends. Share this book with all children--to spark communication, to attack the stigma, to bridge the gap between children with different abilities. Mister Rogers is the perfect person to write a book like this, with respect and the same gentleness that has characterized his television show for decades. "Rogers offers caring support and validation...Books that offer such honest reassurance are rare."-- Publishers Weekly

In Sickness and in Play: Children Coping With Chronic Illness by Cindy Dell Clark For children who live with a chronic illness, each day is filled with endless treatments, painful symptoms, confusion, and embarrassment. How can an eight-year-old girl understand diabetes, let alone explain to her schoolmates why she has to leave class to have her blood tested? How can the father of a child with asthma ever sleep soundly through the night with the fear that his son may suffocate in the next room?  In this book, Cindy Dell Clark tells the stories of children who suffer from two common illnesses that are often underestimated by those not directly touched by them—asthma and diabetes. She describes how play, humor, and other expressive methods, invented by the children themselves, allow families to cope with the pain. Her interviews with forty-six families give readers an understanding of how children comprehend their illnesses and how parents struggle to care for their sons and daughters while trying to give them a "normal" childhood.  Chronically ill children are at a greater risk of developing mental health or social adjustment problems than their peers, and asthma has been gaining ground in both incidence and fatality in recent years. This eye-opening work emphasizes the importance of improving the lives of these children by understanding their perspectives, both imagined and real.

Deciphering the System : A Guide for Families of Young Children With Disabilities by Paula J. Beckman, Gayle Beckman Boyes Deciphering the System is primarily for parents and families of young children with disabilities who are between birth and five years of age, though it also addresses the needs of school age students as well. It includes contributions from both parents and professionals who have experience with the service system. It provides basic information about parents' rights under recent legislation affecting young children with disabilities. Deciphering the System provides information about many other aspects of the service system the parents may encounter including the education assessment process, how parents can work with multiple service providers, ways to manage the large amount of information that accumulates, and what parents can expect when service providers seek information about their family. There are tips about handling IEP and IFSP meetings, due process hearings, and the transitions which are part of everyone's life, and a chapter about obtaining support from other parents. Finally, there is a glossary which parents can use to help them sort out professional jargon and an extensive lists of resources available to these young children.

Reflections from a Different Journey : What Adults with Disabilities Wish All Parents Knew by Stanley Klein, John Kemp Reflections from a Different Journey presents 40 stories by successful adults who grew up with disabilities. They provide insights into what it is like to persevere in the face of community prejudices, and what it takes for families and children with disabilities to work together toward fulfillment.  While there are many books for parents on raising a child with a disability, this is the first to help them learn from people with disabilities, and to help children face the unique challenges and rewards of growing up with a disability. Reflections from a Different Journey will also encourage and inspire older children and adults with disabilities, other family members, and education and health care professionals who serve these families.

The Story of My Life by Helen Keller Helen Keller would not be bound by conditions. Rendered deaf and blind at 19 months by scarlet fever, she learned to read (in several languages) and even speak, eventually graduating with honors from Radcliffe College in 1904, where as a student she wrote The Story of My Life. That she accomplished all of this in an age when few women attended college and the disabled were often relegated to the background, spoken of only in hushed tones, is remarkable. But Keller's many other achievements are impressive by any standard: she authored 13 books, wrote countless articles, and devoted her life to social reform. An active and effective suffragist, pacifist, and socialist (the latter association earned her an FBI file), she lectured on behalf of disabled people everywhere. She also helped start several foundations that continue to improve the lives of the deaf and blind around the world. As a young girl Keller was obstinate, prone to fits of violence, and seething with rage at her inability to express herself. But at the age of 7 this wild child was transformed when, at the urging of Alexander Graham Bell, Anne Sullivan became her teacher, an event she declares "the most important day I remember in all my life." (Sullivan herself had once been blind, but partially recovered her sight after a series of operations.) In a memorable passage, Keller writes of the day "Teacher" led her to a stream and repeatedly spelled out the letters w-a-t-e-r on one of her hands while pouring water over the other. This method proved a revelation: "That living world awakened my soul, gave it light, hope, joy, set it free! There were barriers still, it is true, but barriers that could in time be swept away." And, indeed, most of them were.  In her lovingly crafted and deeply perceptive autobiography, Keller's joyous spirit is most vividly expressed in her connection to nature: Indeed, everything that could hum, or buzz, or sing, or bloom, had a part in my education.... Few know what joy it is to feel the roses pressing softly into the hand, or the beautiful motion of the lilies as they sway in the morning breeze. Sometimes I caught an insect in the flower I was plucking, and I felt the faint noise of a pair of wings rubbed together in a sudden terror....  The idea of feeling rather than hearing a sound, or of admiring a flower's motion rather than its color, evokes a strong visceral sensation in the reader, giving The Story of My Life a subtle power and beauty. Keller's celebration of discovery becomes our own. In the end, this blind and deaf woman succeeds in sharpening our eyes and ears to the beauty of the world. --Shawn Carkonen

The Art of Helping: What to Say and Do When Someone Is Hurting by Lauren Littauer Briggs, Emilie Barnes All of us have wanted to offer comfort and support to someone experiencing the intense pain of loss, but we simply don't know what to say to someone facing divorce, the death of a child, cancer, the loss of a job, infertility, and estranged or rebellious child, a chronic illness, and the other tough issues of life.  The Art of Helping is presented with those times in mind. Find out the best way to express your feeling in a positive, uplifting manner that a hurting person will understand and appreciate.

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