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~Inspirational / Helpful Books~
The following books were chosen for their content
in regards to Epidermolysis Bullosa or in helping parents and siblings
cope with the disability.
If you can think of a book that should be here, or
should be featured as the featured book, please email me!
Thank you for your support! For more information or
to Order any book from this page, simply click on the title.
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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.
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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. |
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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. |
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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. |
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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.
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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 |
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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.
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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. |
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