(Click on a book title and it will take you to Amazon.com for purchase or more info!)
| Book Title |
Author |
Description |
Category 1 |
Category 2 |
| After
plastic surgery: Adaptation and Adjustment |
Macgregor |
One of many contributions to our knowledge about living with a facial
difference |
Let's Face It |
Self help |
| After
the Tears; Parents Talk about Raising a Child with a disability |
Simons
|
Recommended by a girl with spina bifida |
Parents |
Differences |
| Alex: The Life of a Child |
Deford |
The poignant and uplifting story of a child with cystic fibrosis who dies at age 8. |
Personal account |
Cystic fibrosis |
| Alike and Different: Exploring our Humanity with Young Children |
Nuegelbauer |
Our favorite chapter is "Talking about Differences Children Notice". Written for teachers. |
Let's Face It |
Diversity |
| All
God's Mistakes: Genetic Counseling in a Pediatric Hospital |
Bosk |
An account of the clinical applications of human genetics in medicine and of the scientific, ethical, and professional conflicts that surround use of new technologies of conception and prenatal diagnosis in the larger society. |
AEC 2002 |
Spirituality |
| Amazing Grace |
Hoffman |
A beautiful book about looking "different". |
Let's Face It |
Diversity |
| Another
Season: A Coach's Story of Raising an Exceptional son |
Stallings |
Famed football coach Stallings combines a short history of his tough professional career with the affectionate story of his son with Down syndrome. |
Personal account |
Down syndrome |
| Antenatal
diagnosis of fetal abnormalities |
Drife and Donnai |
Special order |
Text |
Prenatal |
| Arthur’s
Eyes |
Brown |
Arthur wears glasses |
Let’s Face It |
Children |
| Arthur’s
Nose |
Brown |
Arthur doesn’t like his nose |
Let’s Face It |
Children |
| Assessing Genetic Risks: Implications for health and Social Policy |
Andrews, Fullerton, Holtzman, and Motulsky |
An extraordinarily detailed and personal account of a teenage girl’s gradual recovery from severe brain injury. |
Personal account |
Cardiac disease |
| Autobiography of a Face |
Grealy |
At age 9, Lucy was diagnoses with a potentially terminal cancer. When she returned to school with a third of her jaw removed, she faced the cruel taunts of classmates. A story of great suffering, remarkable strength, and considerable wit. |
SLC |
Personal Account |
| Babyface: A Story of Heart and Bones |
McDermott |
Story of a child with Apert syndrome. |
Personal account |
Craniofacial |
| Bad Daughter, The |
Hilden |
Hilden’s exquisitely written book is part confessional, part self-examination, part memoir, and totally riveting. It tells the nearly taboo story of an only child who refuses to care for an alienated, ailing mother with early-onset Alzheimers. |
SLC |
Personal Account |
| Beautiful Child |
Hayden |
A moving account of the author’s work as a teacher in a class of children with serious emotional and physical problems. The title refers to a 7 year old girl from a dysfunctional family, who is deeply withdrawn and completely unresponsive to external stimuli. |
SLC |
Personal Account |
| Before and After Zachariah: A Family Story About a Different Kind of Courage |
Kupfer |
While there is much material available on the mildly and moderately retarded, few books are written about the lives of the severely and profoundly retarded and their families. Kupfer tells her family’s story well, and by including quotations from many other parents of severely retarded children, she also puts that story into perspective. |
SLC |
Personal Account |
| Before Their Time: Lessons in Living from Those Born Too Soon |
Taylor and Hoekstra |
The stories of 6 infants born prematurely, their parents, and the staff, primarily nurses, of the neonatal intensive care unit that treated them. |
SLC |
Personal Account |
| Christal:
Coping with Spina Bifida |
Snyder |
Recommended by a girl with spina bifida |
Children |
Spina bifida
|
| The
Evolving Professional Self: Stages and Themes in Therapist and
Counselor Development |
Skovholt and Ronnestad |
Offers a research-based comprehensive view of professional development
founded on the systematic examination of therapists and counselors
during the growth and development of their careers. |
AEC 2002 |
Education |
| A Heartbreaking Work of Staggering Genius |
Eggers |
Personal account of Eggers who, at the age of 22, lost both his parents to cancer. He becomes responsible for the upbringing of his younger brother. |
SLC |
Personal Account |
| A Hope in the Unseen: An American Odyssey from the Inner City to the Ivy League |
Suskind |
A full-length nonfiction narrative following a talent black teenager from the inner city beyond his high school graduation to Brown University. |
SLC |
Personal Account |
| A Parent's Guide to Cleft Lip and Palate |
Moller, Starr, and Johnson |
One parent has said that this book should be required reading for every new parent of a child with a cleft lip or palate! |
Let's Face It |
Cleft Lip/Palate |
| Autobiography of a Face |
Grealy |
At age 9, Lucy was diagnoses with a potentially terminal cancer. When she returned to school with a third of her jaw removed, she faced the cruel taunts of classmates. A story of great suffering, remarkable strength, and considerable wit. |
SLC |
Personal Account |
| Babies
with Down Syndrome; a New Parent’s Guide |
Stray-Gundersen
|
A book designed to answer most questions new parents have |
Parents |
Down Syndrome |
| Beautiful Child |
Hayden |
A moving account of the author's work as a teacher in a class of children with serious emotional and physical problems. The title refers to a 7 year old girl from a dysfunctional family, who is deeply withdrawn and completely unresponsive to external stimuli. |
SLC |
Personal Account |
| Before and After Zachariah: A Family Story About a Different Kind of Courage |
Kupfer |
While there is much material available on the mildly and moderately retarded, few books are written about the lives of the severely and profoundly retarded and their families. Kupfer tells her family's story well, and by including quotations from many other parents of severely retarded children, she also puts that story into perspective. |
SLC |
Personal Account |
| Before Their Time: Lessons in Living from Those Born Too Soon |
Taylor and Hoekstra |
The stories of 6 infants born prematurely, their parents, and the staff, primarily nurses, of the neonatal intensive care unit that treated them. |
SLC |
Personal Account |
| Bonesetter’s Daughter, The |
Tan |
|
SLC |
Fiction |
| Boy Who Felt No Pain, The |
Marion |
|
SLC |
|
| Broken Bodies, Healing Hearts: Reflections of a Hospital Chaplain |
Tenbrook |
Gretchen W. Tenbrook's paperback book is a delight. Her actions and thought as she walks the halls of Johns Hopkins Hospital are fun, deep, and insightful. |
Let's Face It |
Support |
| Broken Cord, The |
Dorris and Erdrich |
Story of a single man who adopts a child with Fetal Alcohol syndrome. |
SLC |
Personal Account |
| Cardiac Kids: A book for families who have a child with heart disease |
Elder |
For parents and children to read together, book explains many of the medical tests a child will experience after being diagnosed with heart disease. It also touches on some of the stress siblings may feel. |
Children's book |
Heart defects |
| Changed
by a Child: Companion Notes for Parents of a Child with a Disability |
Gill |
For moms of kids with special needs |
Parents |
Special needs |
| Chicken Soup for the Teenage Soul I: On Love and Friendship |
Canfield |
The public are singing praises for this 200 page paperback. It is full of down to earth, creative ways of dealing with the many parts of any chronic illness. Particularly enjoyable are direct steps for dealing with pain. |
Let's Face It |
Teens |
| Chicken Soup for the Teenage Soul II: On Tough Stuff |
Canfield |
|
Let's Face It |
Teens |
| Chicken Soup for the Teenage Soul III: 101 Stories of Life, Love, and Learning |
Canfield |
|
Let's Face It |
Teens |
| Children
With Spina Bifida: A Parent’s Guide (the Special Needs Collection) |
Lutkenhoff |
Spina bifida, recommended by a girl with spina bifida |
Parents |
Spina bifida |
| Child Who Never Grew, The |
Buck and Michener |
Personal account of Pearl S. Buck’s struggle to help and understand her daughter with mental retardation. |
SLC |
Personal Account |
| Chromosome Abnormalities and Genetic Counseling |
Gardner and Sutherland |
A reference text for genetic counselors and cytogenetics lab workers. |
Text |
Cytogenetics |
| Chronic
Illness and the Twelve Steps: A Practical Approach to Spiritual
Resilience |
Cleveland |
A clearly written guide to healing our lives. Highly recommended
by many Let’s Face it readers |
Let’s Face It |
Self help |
| Cleft Lip and Palate: From Origin to Treatment |
Wyszynski |
Major advances in the dx & treatment of oral clefts have been made in the past 50 years, and recent genetics and epidemiological studies have led to new theories about the causes of cleft lip and palate. Addressing issues that are relevant to clinicians, researchers and family members, this book is a comprehensive, well-illustrated, and up-to-date account of the many facets of this common disorder. |
Textbook |
Cleft Lip and Palate |
| Clinical Cancer Genetics: Risk Counseling and Management |
Offit |
Practical guide that addresses broad scope of cancer risk assessment and genetic testing for cancer. Surveys literature that links clinical oncology, molecular genetics, epidemiology, psychology, ethics, and the law. |
Text |
Cancer |
| Clinical
Counseling in Medical Settings |
Thomas, Davison and Rance
|
An honest examination of the possibilities and limitations of counseling
in a range of surroundings and patient groups, showing that each
has unique features the influence the therapeutic process. |
Text |
Genetic counseling |
| Clinical Hematology and Fundamentals of Hemostasis |
Harmening |
An introduction to clinical hematology that serves as a textbook lab manual, and atlas of cell morphology. |
Text |
Hematology |
Complex
Craniofacial Problems: a Guide to Analysis and Treatment
|
Dufresne, Carson, and Zinreich
|
Textbook on craniofacial problems
|
Let’s Face it |
Text |
| Connective Tissue and Its Heritable Disorders: Molecular, Genetic and Medical Aspects |
Royce and Steinmann |
Reference text which provides most up to date clinical and scientific information for medical specialists treating affected individuals. |
AEC 2002 |
Connective tissue disorders |
| Chromosome
Abnormalities and Genetic Counseling |
Gardner and Sutherland |
Second edition of a textbook/reference for genetic counselors and
cytogenetic laboratory workers. Previous edition 1989. Presents the
theoretical basis of clinical cytogenetics. |
Text |
Clinical genetics |
| Constructivist
thinking in counseling practice, research and training |
Sexton and Griffin
|
|
AEC 2002 |
Education |
Cultural
and Ethnic Diversity: A Guide for Genetics Professionals
|
Fisher |
Text on effective communication with people of different cultural
and ethnic backgrounds, for medical genetics professionals. |
Text |
differences |
| Dealing with Dilemma: A Manual for Genetic Counselors |
Kelly |
|
SLC |
|
| Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR text revision) |
American Psychiatric Association |
|
AEC 2002 |
Psych disorders |
| Disorders of Hemoglobin: Genetics, Pathophysiology, and Clinical Management |
Steinberg, Forget, Higgs, and Nagel |
Comprehensive reference text on genetic and acquired disorders of hemoglobin. |
AEC 2002 |
Hematology |
| Developing
Adult Learners: Strategies for Teachers and Trainers |
Taylor, Marienau, and Fiddler |
This thoughtful and practical guide shows how to encourage learning
and development while helping adult learners to become more aware
of their personal growth and change. |
AEC 2002 |
Education |
| DNA Mystique: The Gene as a Cultural Icon, The |
Nelkin |
Explores attitudes about the gene in popular culture, drawing on stories and metaphors from film, television, news reports, comic books, and cartoons, revealing how science and culture intersect to shape the social meaning of the gene. |
SLC |
|
| Dreaming
Water |
Tsukiyama |
Novel details a short span in the life of Cate and Hana, a mother
and daughter coping with the onslaught of Werner's Syndrome. |
Fiction |
Personal account |
| East of the Mountains |
Guterson |
This is a tale of a solitary 73-year-old widower. A retired heart surgeon, Ben Givens is an old hand at turning isolation to his advantage, both professionally and personally. Now however, Ben has been dealt a problem entirely beyond his powers of manipulation: a diagnosis of terminal cancer. |
SLC |
Cancer |
| Elmer |
McKee |
A story about an elephant named Elmer who is the only elephant in the jungle who is patchwork instead of gray. |
Let's Face It |
Diversity |
| Emery
and Rimoin’s Principles and Practices of Medical Genetics |
Connor, Pyeritz, Korf, and Rimoin |
Extensive reference on the basic science and clinical applications
of medical genetics. For primary care physicians, specialists, and
students. |
AEC 2002 2002 |
Clinical genetics |
| Embodying Spirit: Coming Alive with Meaning and Purpose |
Small |
Explores the broad territory of spirituality including some of the questions generally encountered on the journey. |
AEC 2002 |
Spirituality |
| Everybody's Different: Understanding and Changing Our Reactions to Disabilities |
Miller and Sammons |
By reading this paperback, all of us, with or without difference, will come to a deep understanding of this important issue. This book can change how a teenager or older person with a facial difference reacts to being stared at. Excellent for any education program on differences. |
Let's Face It |
Diversity |
| Expanded Life Cycle: Individual, Family, and Social Perspectives, The |
Carter, McGoldrick and Carter |
A revision of previous wor in family therapy issues, authors propose a new and more comprehensive way to think about human development and the life cycle. |
AEC 2002 |
Family therapy |
| Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic |
Beck |
Autobiographical tale of academically oriented Harvard couple who discover prenatally that their baby has Down syndrome. |
AEC 2002 |
Down syndrome |
| Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers |
Hubbard |
Social commentary |
SLC |
|
| Extraordinary
Friends (Let’s Talk About It) |
Rogers |
About children with disabilities, recommended by a girl with spina
bifida |
Children |
Spina bifida |
| Faces of Huntington’s |
Leal-Pock |
A unique collection of writings which illuminates the many facets of Huntington’s Disease. |
Personal account |
Huntington's disease |
Facilitating
the Genetic Counseling Process: A Practice Manual
|
Leroy and Veach |
Expected release August 2003 |
Text |
Genetic counseling |
| The
Fall of Freddy the Leaf |
Buscaglia |
As Freddie experiences the changing seasons along with his companion
leaves, he learns that death is part of life |
Children |
Grief and bereavement |
| Families, Illness, and Disability: An Integrative Treatment Model |
Rolland |
Provides a model for treating the family with a member who is disabled or seriously ill. |
AEC 2002 |
Family therapy |
| Family Pictures: A Novel |
Miller |
A story told through the eyes of 4 family members, the complexity of family relationships is illustrated through their reactions to a family member with autism. |
Fiction |
Autism |
| Fear Nothing |
Koontz |
Forced to spend his life in the dark due to a rare genetic disease (xeroderma pigmentosa), the main character, Snow, is thrown into an eerie thriller he is hardly able to handle. |
Fiction |
Xeroderma pigmentosa |
| Feminine Face of God: The Unfolding of the Sacred in Women, The |
Anderson and Hopkins |
Based on qualitative interview with hundreds of US women. |
AEC 2002 |
Spirituality |
| Fetal Echocardiography |
Drose |
An essential reference for anyone involved in fetal echocardiography. |
Text |
Prenatal diagnosis |
| Fetology: Diagnosis and Management of the Fetal Patient |
Bianchi, Crombleholme, and D’Alton |
Quick reference volume that offers a cohesive, coordinated plan for the diagnosis, management and the treatment of the fetal patient. |
Text |
Prenatal diagnosis |
| Fifth Child, The |
Lessing |
This an the obsessive story of a young middle class couple, determined to achieve their dream of a big house full of children. The "perfect family" mush now adjust to the arrival of Ben, the fifth child who has serious emotional and developmental problems. |
SLC |
Fiction |
| Familial
Cancer Management |
Weber |
It encompasses etiological and pathological aspects of familial
cancer clustering, the description of frequent and important family
syndromes, diagnostic procedures, and principles of counseling, prevention,
and management. |
Text |
cancer |
| Finding Hope When a Child Dies: What Other Cultures Can Teach Us |
Miller |
A book about grief and healing that invites us to look at the heartening
possibilities of other cultures and ask: What if these were my
beliefs? |
Text |
Grief and loss |
| Finding
the Joy in Today: Practical Readings for Living With Chronic Illness |
Pitzelle |
Practical daily readings for living with chronic illness |
Let’s Face It |
Self help |
| First Things First |
Covey, Merrill, and Merrill |
Designed to help create balance between person and professional lives, and use time totally differently. |
AEC 2002 |
Self help |
| Flowers for Algernon |
Keyes |
The journal of Charlie Gordon, a mentally retarded adult who becomes a genius after undergoing a brain operation. |
Fiction |
Mental retardation |
| Fostering
critical reflection in adulthood: A guide to transformative and
emancipatory learning |
Mezirow |
|
AEC 2002 2002 |
Education |
| Franklin
Goes to the Hospital |
Jennings |
Franklin's shell has cracked, and he needs to be a brave turtle
when it's time to go to the hospital. |
NSGC member |
children |
| From
the Heart: On Being the Mother of a Child with Special Needs |
Marsh |
For mothers of kids with special needs, recommended by a girl with
spina bifida |
Parents |
Differences |
| Genetic
Counseling |
Stevenson |
Older text – special order |
Text |
Genetic counseling |
| Genetic Counseling: Practice and Principles (Professional Ethics) |
Clarke |
A discussion of ethical and social issues in genetics. |
Text |
Genetic counseling |
| Genetic
Counseling: Practice and Principles |
Clarke |
Examines the social and ethical issues raised in genetic counseling,
testing and screening. It includes contributions from health professionals
engaged in genetic counseling as well as observers and critics from
the fields of philosophy, law, biology and social science. |
Text |
Genetic counseling |
| Genetic Diseases of the Eye |
Traboulsi |
Summary of current knowledge on the clinical manifestation, etiology and management of genetic dieases of the eye. |
Text |
Clinical genetics |
| Genetic Disorders and the Fetus: Diagnosis, Prevention, and Treatment |
Milunsky |
Comprehensive clinical reference to prenatal genetic diagnosis for geneticists, obstetricians, and pediatricians. |
AEC 2002 |
Prenatal diagnosis |
| Genetic
Disorders sourcebook |
Bellenir |
offers basic information about lifestyle expectations, disease-management
techniques, and current research initiatives for the most common
types of genetic disorders; and includes a resource list covering
300 genetic disorders and related topics. |
Text |
Clinical genetics |
Genetic
Issues for Perinatal Nurses
|
Williams, Lea, Wieczorek, and Lamb |
A nursing continuing education program that presents an update
of genetics, principles of inheritance and ethical principles |
Text |
Nursing |
Genetic
Testing and Screening: Critical Engagement at the Intersection
of Faith and Science
|
Willer |
Excellent addition to any library of those concerned about genetics
and its intersection with religion and ethics. |
Text |
Genetic counseling |
| Genetics and Auditory Disorders |
Keats, Popper, and Fay |
Informs reader on many clinical forms of genetic hearing loss, the mutations responsible and the function of proteins encoded by mutant genes. |
AEC 2002 |
Hearing loss |
| Genetics
and Genetic Services: A Child Welfare Worker's Guide |
Eanet and Rauch |
A guide for professionals involved with families affected by genetic
disorders. Part I provides information about current genetic services,
conducting an interview, and recording and transmitting information.
Part II focuses on psychosocial interventions with children and families. |
Text |
Public health |
| Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease |
Khoury, Burke, and Thomson |
Delineates a framework for the integration of advances in human genetics into public health practice. |
AEC 2002 |
Public health |
| Genetics for Hematologists |
Bahou and Hatchwell |
Concise summary of what is presently known about genetic basis of monogenic and polygenic hematologic disorders. |
AEC 2002 |
Hematology |
| Genetics of Mental Disorders: A guide for Students, Clinicians, and Researchers |
Faraone, Tsuang, and Tsuang |
Comprehensive and highly readable introduction to psychiatric genetics. Designed for clinical utility. |
SLC |
Personal Account |
| Genograms: Assessment and Intervention |
McGoldrick, Gerson, and Shellenberger |
3 therapists explain interviewing for and formatting this tool to map family patterns. |
AEC 2002 |
Family therapy |
Gross
Motor Skills in Children With Down Syndrome: A Guide for Parents
and Professionals (Topics in Down Syndrome)
|
Winders
|
Guide to physical therapy and speech and language development in
Down syndrome |
Parents |
Down syndrome |
| Guide to Genetic Counseling, A |
Baker, Schuette, and Uhlmann |
Defines theory, goals, and core competencies associated with the practice of genetic counseling. |
AEC 2002 |
Genetic counseling |
| Harry
and Willy and Carrothead |
Caseley |
recommended by a girl with spina bifida |
Children |
Differences |
| Healing Lessons |
Winawer and Taylor |
Story off Dr. Sidney Winawer, chief of gastroenterology at Memorial Sloan-Kettering Cancer Center, and his wife, Andrea, dealing with her diagnosis of metastatic stomach cancer. |
SLC |
Personal Account |
| Heart Defects in Children: What every parent should know |
Wild |
Designed for parents of newly diagnosed children, also a useful resource for families of prenatally diagnosed patients as well. |
Parents |
Heart defects |
| Heart of a Child: What families need to know about heart disorders in children, The |
Clark, Clark, and Neill |
Designed for parents of newly diagnosed children, also a useful resource for families of prenatally diagnosed patients as well. |
Parents |
Heart defects |
| Heartbreaking Work of Staggering Genius, A |
Eggers |
Personal account of Eggers who, at the age of 22, lost both his parents to cancer. He becomes responsible for the upbringing of his younger brother. |
SLC |
Personal Account |
| Hereditary Hearing Loss and Its Syndromes |
Gorlin, Toriello, and Cohen |
Comprehensive and organized resource. |
AEC 2002 |
Hearing loss |
| Herman |
Christensen |
Story about a young boy in Oslo, Norway who starts losing his hair. |
Fiction
|
Differences
|
| Hope in the Unseen: An American Odyssey from the Inner City to the Ivy League, A
|
Suskind
|
A full-length nonfiction narrative following a talent black teenager from the inner city beyond his high school graduation to Brown University.
|
Text
|
Prenatal diagnosis
|
| How to Help Children Through a Parent's Serious Illness
|
McCue and Bonn
|
A must for anyone who has to talk to their children about illness in the family.
|
Let's Face It
|
Cancer
|
| How
to Know God: The Soul's Journey into the Mystery of Mysteries
|
Chopra
|
Delineates 7 stages of spiritual development characterized by how we envision and relate to God.
|
AEC 2002 |
Spirituality |
| Howie
Helps Himself |
Fassler |
About a boy in a wheelchair, recommended by a girl with spina bifida |
Children |
Spina bifida |
| I Know This Much Is True
|
Lamb
|
Story of a young woman struggling with her own identity.
|
SLC
|
Fiction
|
| I'm Deaf and It's Okay
|
Aseltine, Mueller, Tait, and Taid
|
Ages 4-8.
|
Let's Face It
|
Hearing Impaired
|
| Icy Sparks
|
Rubio
|
This book is about a young girl who has Tourette's, but doesn't know it. She grows up in the back hills of Kentucky and no one knows what to make of her.
|
NSGC member |
Tourette's
|
| Intensive Care: A Family Love Story
|
Weisman
|
Weisman manages to bring humor to intensive care without undermining its awful seriousness.
|
Fiction
|
Chronic illness
|
| Introduction
to Risk Calculation in Genetic Counseling |
Young
|
This book provides a simple introduction for risk calculation for
genetics counselling,, describing how risks can easily be estimated
or calculated for most counselling situations. Easy-to-use, with
worked examples, this book covers all patterns of inheritance. |
Text |
Genetic counseling |
| It’s
not about the bike; my journey back to life |
Armstrong |
The story of Lance Armstrong--a world-class athlete nearly struck
down by cancer, only to recover and win the Tour de France, the multiday
bicycle race famous for its grueling intensity |
Personal account |
Cancer |
| Jessica’s
X-Ray |
Zonta |
Children’s book with actual radiology images – x-ray,
CT scan, ultrasound, MRI |
Children |
Hospital |
| Jewel: A Novel
|
Lott
|
Story of a womanÕs devotion to a child who is described as bother her burden and GodÕs singular way of smiling.
|
Fiction
|
Down syndrome
|
| Kara Mia: The Story of Sudden Loss and Slow Recovery in a Teenage with Long QT Syndrome
|
Anglim and Allan
|
Presents principles for research and policy recommendations on key issues in genetic testing and screening.
|
AEC 2002
|
Text
|
Laurel’s
Kitchen Caring; Recipes for Everyday Home Caregiving
|
Robertson
|
Many practical nurturing ways to care for an ill loved one.
|
Let’s Face It
|
Self help
|
Learning
in adulthood: a comprehensive guide
|
Merriam and Caffarella
|
Excellent resource |
AEC 2002 2002 |
Education |
| Life as We Know It: A Father, a Family, and an Exceptional Child
|
Berube
|
An inspiring story of a father describing not only the challenge of raising a son (with Down syndrome) but also the challenge of seeing him as a person rather than as a medical, genetic, or social problem.
|
Personal account
|
Down syndrome
|
Lifetimes:
The beautiful way to explain death to children
|
Mellonie and Ingpen
|
This sensitive book is a useful tool in explaining to children
that death is a part of life and that, eventually, all living things
reach the end of their own special lifetimes. |
children |
Grief and bereavement |
| Management of Genetic Syndromes
|
Cassidy and Allanson
|
Covering 30 common genetic syndromes - information on incidence, etiology and pathogenesis, natural history, diagnostic criteria, spectrum of variation, recurrence risk in sibs and offspring, and availability of prenatal diagnosis and diagnostic testing.
|
AEC 2002
|
Clinical genetics
|
| Mapping Fate: A memoir of Family, Risk, and Genetic Research
|
Wexler
|
|
SLC
|
Personal Account
|
| Medical
Counseling Before Pregnancy |
Hollingsworth and Resnik |
Special order |
Text |
Genetic counseling |
| Medical
and Surgical Care for Children with Down Syndrome: A guide for
Parents |
Van Dyke |
Medical issues and down syndrome |
Parents |
Down syndrome |
| Meeting the Challenge: Living with Chronic Illness
|
Kron, Brioda, and Kron
|
The public are singing praises for this 200 page paperback. It is full of down to earth, creative ways of dealing with the many parts of any chronic illness. Particularly enjoyable are direct steps for dealing with pain.
|
Let's Face It
|
Support
|
| Mendel's Dwarf
|
Mawer
|
This novel tells the story of Benedict Lambert, a distant relative of Gregor Mendel. Like Mendel, Lambert is a brilliant geneticist. Unlike Mendel, Lambert is a dwarf. The story is a mix of humor and philosophy.
|
SLC
|
Fiction
|
| Metabolic and Molecular Bases of Inherited Disease, The
|
Scriver, Sly, Childs, Beaudet, Valle, kinzler, and Vogelstein
|
The undisputed authority on genetic inheritance, you can explire what is currently known about every inherited disease known to exist.
|
AEC 2002
|
Text
|
| Middlesex
|
Eugenides
|
Main character with 5-alpha5-reductase deficiency, deals with the family history and questions of genetic determinism.
|
Fiction
|
Differences
|
| Molecular Basis of Blood Disease, The
|
Stamatoyannopoulous
|
Useful resource that covers the newest findings on the molecular bases of blood cell functions and disease mechanisms as well as the impact of these discoveries on the state of medicine.
|
Text
|
Hematology
|
| Motherless Daughters: The Legacy of Loss
|
Edelman
|
The author shares her own painful story and the stories of many other women who, as children or adults, lost their mothers.
|
Personal account
|
Grief and loss
|
| Multiple
pregnancy and delivery |
Gall |
Discusses epidemiology, maternal and fetal complications, and compares
singleton gestations to multiple gestations. |
Text |
Ob/gyn |
| My
Grandfather’s Blessings: Stories of Strength, Refuge, and
Belonging |
Remen |
Dr. Remen gave up her job as a pediatrician to counsel patients
with chronic and terminal illness. |
NSGC member |
Personal account |
| My Sense of Silence: Memoirs of a Childhood with Deafness
|
Davis
|
Growing up as a hearing child of deaf parents, a candid, affecting, and often funny memoir.
|
Personal account
|
Hearing impairment
|
| Nathan and Oski’s Hematology of Infancy and Childhood
|
Nathan, Orkin, Oski, and Lampert
|
Comprehensive clinical reference to the complex pathophysiology and many clinical manifestations of blood disorders in childhood.
|
AEC 2002
|
Hematology
|
| Negotiating
the Special Education Maze: A Guide for Parents and Teachers |
Anderson |
Educational guide for children with special needs |
Parents |
Special needs |
| No
New Baby: For Siblings Who Have a Brother or Sister Die Before
Birth |
Gryte |
For siblings who have a brother or sister die before birth. This
storybook talks about the different feelings children have and answers
some of the most asked questions. |
NSGC member |
Grief and bereavement |
| Nobody Nowhere: The Extraordinary Autobiography of an Autistic
|
Williams
|
The author details what it is like to grow up autistic and the price one pays for being "high-functioning".
|
Personal account
|
Autism
|
| On Death and Dying
|
Kubler-Ross
|
One of the most important psychological studies of the late twentieth century. Explores the now-famous five stages of death: denial and isolation, anger, bargaining, depression, and acceptance.
|
SLC
|
Textbook
|
| Ordinary Daylight: Portrait of an Artist Going Blind
|
Potok
|
Story of a gifted painter with retinits pigmentosa who lose his sight. Depressed and angry, he ultimately discovers it is not the end of the world, it is the beginning.
|
Personal account
|
Retinitis pigmentosa
|
| Ordinary People
|
Guest
|
Story of a family struggling with the loss of one child, and the devastating effects on their other son.
|
SLC
|
Fiction
|
Overcoming
Dyslexia: A New and Complete Science-Based Program for Overcoming
Reading Problems at Any Level
|
Shaywitz
|
Yale neuroscientist Shaywitz demystifies the roots of dyslexia
(a neurologically based reading difficulty affecting one in five
children) and offers parents and educators hope that children with
reading problems can be helped. |
Self help |
Learning disabilities |
| Paper Chain, The
|
Blake, Blanchard, Parkinson, and Murphy-Melas
|
This delightful children’s book is written for the child age 3-10 whose parent is undergoing chemotherapy or radiation therapy.
|
Let’s Face It
|
Cancer
|
| The
Parent's Guide to Children's Congenital Heart Defects: What they
are, how to treat them, how to cope with them
|
Kramer and Maurer
|
For parents of newly diagnosed children, also a useful resource for families of prenatally diagnosed patients as well.
|
Parents
|
Heart defects
|
| Parent's
Guide to Cleft Lip and Palate, A
|
Moller, Starr, and Johnson
|
One parent has said that this book should be required reading for every new parent of a child with a cleft lip or palate!
|
Let’s Face It
|
Cleft Lip/Palate
|
| A
Parent’s Guide to Down syndrome: toward a Brighter Future,
Revised Edition |
Pueschel |
Written by physician parent of a child with Down syndrome
|
Parents |
Down syndrome |
| Pastoral
genetics: Theology and Care at the beginning of life |
Cole-Turner and Waters |
How are clergy to respond to the advances of genetics and medical
technology at the beginning of life? In clear, accessible language,
this book traces recent developments in the field, and then describes
the religious and moral issues raised and how to respond to them. |
Text |
Spirituality |
| A
Piece of my Heart: Living Through the Grief of Miscarriage, Stillbirth,
or Infant Death |
Fumia |
This compassionate work provides an intimate journey into Fumia's
repressed grief over losing her newborn son and her ultimate reconciliation
with her own guilt. Moving beyond her own circumstances, she offers
direct advice to others who have lost a child to miscarriage, stillbirth,
or infant death. |
NSGC member |
Grief and bereavement |
| Physicians’ Guide
to Rare Diseases (2nd edition) |
Theone
|
|
Let’s face it |
Text |
| Poisonwood Bible, The |
Kingsolver |
The year is 1959 and the place is the Belgian Congo. A Baptist preacher has come to spread the Word in a remote village reachable only by airplane. To say that he and his family are woefully unprepared would be an understatement. |
SLC |
Fiction |
| Practical
Genetic Counseling |
Harper |
Provides clinicians and other staff members with an updated guide
through the profusion of new information and the emerging psychosocial
and ethical concerns connected with genetic counselling. |
Text |
Genetic counseling |
| Practical Guide to Human Cancer Genetics, A |
Hodgson, Maher, and Newton-Bishop |
Essential overview of the latest defelopments in human cancer genetics. |
Text |
Cancer |
| Practical Guide to the Genetic Family History, The |
Bennett |
Wonderful quick reference volume of ultrasound anomalies and possible syndromic etiologies, juxtaposed with ultrasound findings in specific syndromes. |
Text |
Clinical genetics |
| Prenatal Diagnosis and Screening |
Brock, Rodeck and Ferguson-Smith |
Wonderful quick reference volume of ultrasound anomalies and possible syndromic etiologies, juxtaposed with ultrasound findings in specific syndromes. |
AEC 2002 |
Prenatal diagnosis |
| Prenatal
Diagnosis and Reproductive Genetics |
Kuller, Chescheir, and Cefalo |
31 chapters on periconceptional counseling and intervention, clinical
genetics and counseling, maternal serum screening, ultrasound, invasive
testing, fetal treatment, teratology |
Text |
Prenatal diagnosis |
| Prenatal
Testing |
Kolker and Burke |
Reports on a survey of women who have had prenatal testing. Considers
women who were among the first to have amniocentesis, but primarily
analyzes the perceptions and concerns of current users about such
matters as motherhood, pregnancy, abortion, and risk. Also recommends
guidelines for genetic counseling and future research. |
Text |
Prenatal diagnosis |
| Prepare
for Surgery, Heal Faster: A guide of Mind-Body Techniques |
Huddelson |
Designed to address the stress of surgery |
Let’s Face It |
Self help |
| Prescribing Our Future: Ethical Challenges in Genetic Counseling |
Bartels, LeRoy, and Caplan |
|
AEC 2002 |
Genetic counseling
|
| Psyche and Helix: Psychological Aspects of Genetic Counseling. Essays by Seymour Kessler, Ph.D.
|
Resta
|
An effective means of distributing Dr. Kessler’s substantial contribution to the profession of genetic counseling.
|
AEC 2002
|
Genetic counseling
|
| Psychosocial Genetic Counseling
|
Weil
|
The book addresses the counseling aspects of genetic counseling with more depth and breadth than any other book currently available. It covers all aspects of a very broad topic with surprising thoroughness by its honest portrayal and without treating sore points with kid gloves.
|
Text
|
Genetic Counseling
|
| Radiology of Syndromes, Metabolic Disorders, and Skeletal Dysplasias
|
Taybi and Lachman
|
4th edition of clinical reference to nearly 1800 syndromes. Concise quick-reference format.
|
AEC 2002
|
Clinical genetics
|
| Refuge: An Unnatural History of Family and Place
|
Williams
|
The author’s story of the death of her mother and grandmother and other women from cancer, the result of the government’s ongoing nuclear weapons tests in the nearby desert.
|
Personal account
|
Cancer
|
| Remote Control Childhood? Combating the Hazards of Media Culture
|
Levin
|
Provides effective strategies for minimizing the media and Internet cultures heavy doses of violence, stereotypes, commercialism and no-brain entertainment that bombard our lives.
|
Let's Face It
|
Internet
|
| Riding
the Bus with my Sister: A True Life Journey |
Simon
|
This perceptive, uplifting chronicle shows how much Simon, a creative
writing professor at Bryn Mawr College, had to learn from her mentally
retarded sister, Beth, about life, love and happiness. |
NSGC member |
Mental retardation |
Rolling
Along with Goldilocks and the Three Bears
|
Meyers
|
This book presents successful programs, techniques, and strategies
for helping adult learners tap into their rich and diverse life experiences
as a basis for growth and lifelong learning. |
Children |
Spina bifida |
| Rosalind
Franklin: The Dark Lady of DNA |
Maddox |
Her photographs of DNA were called "among the most beautiful
X-ray photographs of any substance ever taken," but physical
chemist Rosalind Franklin never received due credit for the crucial
role these played in the discovery of DNA's structure. |
NSGC member |
Personal account |
| Sammy's Mommy has Cancer
|
Kohlenberg
|
Sharing the beautifully illustrated book, a family can experience a sense of safety and encouragement. Ages 2-8.
|
Let's Face It
|
Cancer
|
| Seekers Guide: The New American Spirituality, The
|
Lesser
|
Discusses the author’s own spiritual journey in the context of spiritual formation.
|
AEC 2002
|
Spirituality
|
| Seize the Night
|
Koontz
|
Sequel to Fear nothing. Snow is at it again and gets caught up in an age-old vendetta, an active time machine, and a genetic experiment gone awry.
|
Fiction
|
Xeroderma pigmentosa
|
| Seven Habits of Highly Effective People, The
|
Covey
|
A manual for performing better in both personal and professional lives.
|
AEC 2002
|
Self help
|
| She's
Come Undone
|
Lamb
|
Story of a young woman struggling with her own identity.
|
SLC
|
Fiction
|
| Sickle Cell Disease: Basic Principles and Clinical Practice
|
Embury, Hebbel, and Mohandas
|
A synthesis of what is currently known about SCD, summarizing the core of basic principles and clinical practice.
|
AEC 2002
|
Hematology
|
| Smith's
Recognizable Patterns of Human Malformation
|
Jones
|
Clinical atlas on malformations. Discusses morphogenesis, genetics, genetic counseling, and clinical diagnosis.
|
Text
|
Clinical genetics
|
| Social
work and genetics: a Guide for Practice |
Schild
|
Special order text |
Text |
Public health
|
| Somebody Somewhere: Breaking Free from the World of Autism
|
Williams
|
Sequel to Nobody Nowhere, the author describes her life as a published author and as a graduate student.
|
Personal account
|
Autism
|
| Someone Special, Just Like You |
Brown |
About children with disabilities, recommended by a girl with spina
bifida |
Children |
Spina bifida |
| Spinabilities:
A Young Person’s guide to Spina Bifida |
Lutkenhoff |
Spina bifida, recommended by a girl with spina bifida |
Children |
Spina bifida |
| Spirit Catches You and You Fall Down, The
|
Fadiman
|
The story of a Hmong infant whose family emigrated from Laos to the USA in the 1980s. The baby has a life-threatening epileptic condition, and the cultural chasm between traditional Hmong beliefs and western medicine proves insoluble.
|
AEC 2002
|
Psych disorders
|
| Supervising
Counselors and Therapists: A Developmental Approach |
Stoltenberg and Delworth
|
This book presents a comprehensive approach to clinical supervision
based on four levels of development through which entry-level counselors
become seasoned professionals. |
AEC 2002 |
Education |
| Supervision
strategies for the first practicum |
Neufeldt |
A hands-on manual offering step-by-step instructions and sample
dialogues for supervisors of novice counselors |
AEC 2002 2002 |
Education |
| Surviving
Schizophrenia: A Manual for Families, Consumers, and Providers |
Torrey |
A comprehensive, realistic, and compassionate approach...Should
be of tremendous value to anyone who must confront these questions. |
NSGC member |
Psychiatric illness |
| Staying Alive - A Family Memoir
|
Reibstein
|
Over fifty years, we see Janet's relative grow into the professionally successful, ethnically mixed family typical in America today. What makes it atypical is the specter of breast cancer that hangs like a dark cloud over all the women in the family.
|
|
Cancer
|
| Stones from the River
|
Hegi
|
Story of a woman with a skeletal dysplasia, coming of age just as Hitler's pronouncements begin to threaten the Jewish residents of her town, and all of Germany.
|
SLC
|
Fiction
|
| Strategies
in Genetic Counseling: The Challenge of the Future |
Ball |
Special order text |
Text |
Genetic |
| Structural Fetal Abnormalities: the Total Picture
|
Sanders
|
Presents multidisciplinary perspectives to aid in making best clinical decisions. Each abnormality includes genetics, epidemiology, sonographic findins and defferential diagnosis, obstetrical management, neonatal management, and summary of surgical indications.
|
SLC
|
Personal Account
|
| Structural
fetal abnormalities: the total picture |
Sanders
|
Catalog of ultrasound diagnosed fetal anomalies, should be on the
shelf in every prenatal diagnosis unit
|
Text |
Prenatal diagnosis
|
| Syndromes of the Head and Neck
|
Gorlin, Cohen, and Hennekam
|
Uniquely comprehensive, encyclopedic work describes the phenotype spectrum epidemiology, inheritance, and pathogenesis of nearly 700 syndromes.
|
Text
|
Clinical genetics
|
| Taking Your Kids Online: How and When to Introduce Children to the Internet
|
Lefebvre and Hillis
|
All the tools you need to approach the Internet with the knowledge and confidence that you are doing what is best for your children.
|
Let's Face It
|
Internet
|
| Ten Principles for Spiritual Parenting: Nurturing Your Child's Soul
|
Doe et al
|
This valuable, instructive book helps parents stop and think about what really matters so that they can help their children do the same and thereby get to the heart of the spiritual life.
|
Let's Face It
|
Parenting
|
| Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood
|
Rothman
|
A social commentary.
|
SLC
|
Prenatal diagnosis
|
| Thalassemia Syndromes, The
|
Weatherall and Clegg
|
New edition that summarizes the evidence suggesting that the clinical picture of this disorder may result from several different inherited defects of globin synthesis. Includes historical background on the field.
|
Text
|
Hematology
|
| Therapy
technologies, applications and regulations: from laboratory to
clinic |
Meager
|
Describes the development of gene-based technologies and the resulting
surge of interest in human gene therapy. |
Text |
Clinical genetics |
| Thompson and Thompson: Genetics in Medicine
|
Nussbaum, McInnes, and Willard
|
Textbook integrates the classical principles of human genetics with modern molecular genetics.
|
Text
|
Genetics
|
| Toward the 21st Century: Incorporating Genetics into Primary Healthcare
|
Touchette, Holtzman, Davis, and Feetham
|
The book addresses the counseling aspects of genetic counseling with more depth and breadth than any other book currently available. It covers all aspects of a very broad topic with surprising thoroughness by its honest portrayal and without treating sore points with kid gloves.
|
AEC 2002
|
Public health
|
The
Truth About Breast Cancer Risk Assessment
|
Hollingsworth |
Learn how risk factors are assembled into a personal profile |
Text |
Cancer |
| Ultrasound of Fetal Syndromes
|
Benacerraf
|
A unique guide; and extremely practical handbook that should have a wide application.
|
Text
|
Prenatal diagnosis
|
| Uncommon
Fathers: Reflections on Raising a child with a Disability |
Meyer
|
For siblings of kids with special needs, recommended by a girl
with spina bifida |
Let’s Face It |
Parents |
| Unquiet Mind, An
|
Jamison
|
A remarkable personal testimony and a description of her struggle since adolescence with manic depression, and how it shaped her life.
|
Personal account
|
Psychiatric illness
|
| Views
from Our Shoes: Growing Up with a Brother or Sister with Special
Needs |
Meyer
|
About using a wheelchair, recommended by a girl with spina bifida |
Children |
Differences |
| We
Can Do It! |
Dwight |
For kids, about disabilities, recommended by a girl with spina
bifida |
Children |
Spina bifida |
| We Can Get Along: A Child's Book of Choices |
Payne and Espeland |
In simple affirming words and enchanting illustrations, this book teaches you children to think before they speak or act and to treat others the way they want to be treated. The focus is on kindness, respect, tolerance and responsibility. |
Let's Face It |
Children |
| We’ll
Paint the Octopus Red |
Stuve-Bodeen
|
For siblings of children with special needs |
Children |
Differences |
| What Teens Need to Succeed: Proven Practical Ways to Shape Your Own Future |
Benson, Galbraith, and Espeland |
A book that every house with teens should have. Proven stories of how to shape your future and how to make a difference in the lives of the people around you. Eye opening fun checklists and quizzes, hundreds of resources, and actions to take are all here. |
Let's Face It |
Teens |
| Where's
Jess |
Johnson, Johnson, Goldstein, and Goldstein |
A small boy's sibling dies and he notices she is gone. The parents
tell him what death is about and how it is alright to remember and
talk about Jess |
NSGC member |
Grief and bereavement |
| Who Moved My Cheese? An Amazing Way to Deal With Change |
Johnson, and Blanchard |
Learn invaluable life lessons about change by way of a humorous parable. |
AEC 2002 |
Self help |
| Whoever You Are |
Fox
|
The bonds that unite us to all the different cultures and generations are woven into the beautiful book.
|
Let's Face It
|
Diversity
|
| Wonderful Ways to Love a Child, Wonderful Ways to be a Family, and Parenting with Loving Actions
|
Ford
|
These well-written paperbacks stretch us to act in creative loving ways. Again, we feel the world would be a better place if all of us took to heart advice from these books.
|
Let's Face It
|
Parenting
|
| Wrightslaw:
Special Education Law |
Wright and Wright |
Legal issues and disability |
Parents |
Special needs |
| Yoga
for the Special Child: A Therapeutic approach for Infants, and
children with Down syndrome, C3erebral Palsy, and Learning Disabilities |
Sumar |
Yoga |
Parents |
Self-help |
| Young Actor’s Book of Improvisation: Dramatic Situations From Shakespeare to Spielberg, The
|
Caruso and Kosoff
|
With over two hundred dramatic situations, the paperback leads young actors to greater depth and insights into themselves and others.
|
Let's Face It
|
Teens
|