|
|
~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.
|
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. |
 EB Info World fully supports
EBAN's mission

|