|
Special Mommy
Chronicles
by Silvia C.
Purchase Directly from the Publisher
ONLY $16.99
~ Get in Gear! ~
New in the gift shop, I AM A SPECIAL MOMMY wear and use items!
This
website proudly supports awareness
and research for
EB (Epidermolysis
Bullosa),
a rare, devastating and lethal skin condition.
Any purchase made through the Amazon.com links help support the EB
(Epidermolysis Bullosa) Info World website, to make sure the
information will always be available for those suffering from this rare
devastating and lethal skin condition.
|
|
|
Recommended
Books
|
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.
|
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 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. |
 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.
|
 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.
|
 From
the Heart : On Being the Mother of a Child With Special Needs
by 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.
|
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 bofida 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 |
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. |
 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.
|
 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. |
 Lucky
Man: A Memoir
by Michael J. Fox
The
same sharp intelligence and self-deprecating wit that made
Michael J. Fox a star in the Family Ties TV series and Back
to the Future make this a lot punchier than the usual
up-from-illness celebrity memoir. Yes, he begins with the first
symptoms of Parkinson's disease, the incurable illness that led
to his retirement from Spin City (and acting) in 2000.
And yes, he assures us he is a better, happier person now than
he was before he was diagnosed. In Fox's case, you actually
might believe it, because he then cheerfully exposes the
insecurities and self-indulgences of his pre-Parkinson's life in
a manner that makes them not glamorous but wincingly ordinary
and of course very funny. ("As for the question, 'Does it
bother you that maybe she just wants to sleep with you because
you're a celebrity?' My answer to that one was, 'Ah...
nope.'") With a working-class Canadian background, Fox has
an unusually detached perspective on the madness of mass-media
fame; his description of the tabloid feeding frenzy surrounding
his 1988 wedding to Tracy Pollan, for example, manages to be
both acid and matter-of-fact. He is frank but not maudlin about
his drinking problem, and he refreshingly notes that getting
sober did not automatically solve all his other problems. This
readable, witty autobiography reminds you why it was generally a
pleasure to watch Fox onscreen: he's a nice guy with an edge,
and you don't have to feel embarrassed about liking him. --Wendy
Smith |
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. |
 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
|
 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.
|
 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.
|
 Alex:
The Life Of A Child
by Frank Deford
Alexandra Deford, a
precious and precocious girl, was just eight years old when she died in 1980
following a battle against the debilitating effects of cystic fibrosis, the
number-one genetic killer of children. Her poignant and uplifting story
touched the hearts of millions when it was first published and then made into
a memorable television movie.
A new introduction
contains information on the latest cystic fibrosis research, and a touching postscript
reveals how the Deford family came to terms with the loss of Alex.
|
 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. |
 Reflections from a Different Journey : What
Adults with Disabilities Wish All Parents Knew (Hardcover)
by Stanley Klein, John Kemp
Offers parents of children with disabilities
inspiration and advice from those who've been there 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. |
 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?" |
Happiness is not a state
to arrive at, but a manner of traveling.
|
