Recommended books listed alphabetically by Category #2

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> Books listed alphabetically by Category #1
> Books listed alphabetically by Category #2

Category Key

Category 1: Refers to the type of book, or recommendation from a specific organization or group
Category 2: Refers to book content or subject matter

Category Abbreviations

SLC: Sarah Lawrence College recommended readings
Let’s Face It: Recommendations from this support group for people with a facial difference
AEC 2002: Referenced in the 2002 NSGC AEC 2002 syllabus

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Book Title	Author	Description	Category 1	Category 2
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
Dealing with Dilemma: A Manual for Genetic Counselors	Kelly		SLC
Boy Who Felt No Pain, The	Marion		SLC
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
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
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
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
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
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
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	Cancer
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
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
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
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
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
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
Practical Guide to Human Cancer Genetics, A	Hodgson, Maher, and Newton-Bishop	Essential overview of the latest defelopments in human cancer genetics.	Text	Cancer
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
The Truth About Breast Cancer Risk Assessment	Hollingsworth	Learn how risk factors are assembled into a personal profile	Text	Cancer
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
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
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
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
Intensive Care: A Family Love Story	Weisman	Weisman manages to bring humor to intensive care without undermining its awful seriousness.	Fiction	Chronic illness
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
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
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
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	Clinical genetics
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
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
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
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
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
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
Smith’s Recognizable Patterns of Human Malformation	Jones	Clinical atlas on malformations. Discusses morphogenesis, genetics, genetic counseling, and clinical diagnosis.	Text	Clinical genetics
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
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
Babyface: A Story of Heart and Bones	McDermott	Story of a child with Apert syndrome.	Personal account	Craniofacial
She’s Come Undone	Lamb	Story of a young woman struggling with her own identity.	SLC	Fiction
After the Tears; Parents Talk about Raising a Child with a Disability	Simons	Recommended by a girl with spina bifida	Parents	Differences
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
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
Harry and Willy and Carrothead	Caseley	recommended by a girl with spina bifida	Children	Differences
Herman	Christensen	Story about a young boy in Oslo, Norway who starts losing his hair.	Fiction	Differences
Middlesex	Eugenides	Main character with 5-alpha5-reductase deficiency, deals with the family history and questions of genetic determinism.	Fiction	Differences
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’ll Paint the Octopus Red	Stuve-Bodeen	For siblings of children with special needs	Children	Differences
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
Amazing Grace	Hoffman	A beautiful book about looking "different".	Let’s Face It	Diversity
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
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
Babies with Down Syndrome; a New Parent’s Guide	Stray-Gundersen	A book designed to answer most questions new parents have	Parents	Down Syndrome
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
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
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
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
Medical and Surgical Care for Children with Down Syndrome: A guide for Parents	Van Dyke	Medical issues and down syndrome	Parents	Down syndrome
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
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
Constructivist thinking in counseling practice, research and training	Sexton and Griffin		AEC 2002	Education
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
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
Fostering critical reflection in adulthood: A guide to transformative and emancipatory learning	Mezirow		AEC 2002	Education
Learning in adulthood: a comprehensive guide	Merriam and Caffarella	Excellent resource	AEC 2002	Education
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	Education
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
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
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
Ordinary People	Guest	Story of a family struggling with the loss of one child, and the devastating effects on their other son.	SLC	Fiction
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
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
I Know This Much Is True	Lamb	Struggles faced by a man whose twin brother has schizophrenia.	SLC	Fiction
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
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
Bonesetter’s Daughter, The	Tan		SLC	Fiction
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
Genetic Counseling	Stevenson	Older text – special order	Text	Genetic counseling
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
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
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
Medical Counseling Before Pregnancy	Hollingsworth and Resnik	Special order	Text	Genetic counseling
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
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
Facilitating the Genetic Counseling Process: A Practice Manual	Leroy and Veach	Expected release August 2003	Text	Genetic counseling
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
Strategies in Genetic Counseling: The Challenge of the Future	Ball	Special order text	Text	Genetic
Thompson and Thompson: Genetics in Medicine	Nussbaum, McInnes, and Willard	Textbook integrates the classical principles of human genetics with modern molecular genetics.	Text	Genetics
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
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
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
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
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
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
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?Ó.	Text	Grief and loss
I’m Deaf and It’s Okay	Aseltine, Mueller, Tait, and Taid	Ages 4-8.	Let’s Face It	Hearing Impaired
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
Hereditary Hearing Loss and Its Syndromes	Gorlin, Toriello, and Cohen	Comprehensive and organized resource.	AEC 2002	Hearing loss
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
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
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
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
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
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
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
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
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
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
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
Jessica’s X-Ray	Zonta	Children’s book with actual radiology images – x-ray, CT scan, ultrasound, MRI	Children	Hospital
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
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
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
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
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
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
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
Multiple pregnancy and delivery	Gall	Discusses epidemiology, maternal and fetal complications, and compares singleton gestations to multiple gestations.	Text	Ob/gyn
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
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
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
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
Broken Cord, The	Dorris and Erdrich	Story of a single man who adopts a child with Fetal Alcohol syndrome.	SLC	Personal Account
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
The Spirit Catches You and You Fall Down	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
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
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
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
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.	Text	Prenatal diagnosis
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
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
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
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
Mapping Fate: A memoir of Family, Risk, and Genetic Research	Wexler		SLC	Personal Account
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
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
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
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
Antenatal diagnosis of fetal abnormalities	Drife and Donnai	Special order	Text	Prenatal
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
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
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
Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood	Rothman	A social commentary.	SLC	Prenatal diagnosis
Ultrasound of Fetal Syndromes	Benacerraf	A unique guide; and extremely practical handbook that should have a wide application.	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
Fetal Echocardiography	Drose	An essential reference for anyone involved in fetal echocardiography.	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
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
Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR text revision)	American Psychiatric Association		AEC 2002	Psych disorders
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
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
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
Social work and genetics: a Guide for Practice	Schild	Special order text	Text	Public health
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
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
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
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
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
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
Seven Habits of Highly Effective People, The	Covey	A manual for performing better in both personal and professional lives.	AEC 2002	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
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
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
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
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
Negotiating the Special Education Maze: A Guide for Parents and Teachers	Anderson	Educational guide for children with special needs	Parents	Special needs
Wrightslaw: Special Education Law	Wright and Wright	Legal issues and disability	Parents	Special needs
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
Christal: Coping with Spina Bifida	Snyder	Recommended by a girl with spina bifida	Children	Spina bifida
Extraordinary Friends (Let’s Talk About It)	Rogers	About children with disabilities, recommended by a girl with spina bifida	Children	Spina bifida
Howie Helps Himself	Fassler	About a boy in a wheelchair, recommended by a girl with spina bifida	Children	Spina bifida
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
Spinabilities: A Young Person’s guide to Spina Bifida	Lutkenhoff	Spina bifida, recommended by a girl with spina bifida	Children	Spina bifida
Someone Special, Just Like You	Brown	About children with disabilities, recommended by a girl with spina bifida	Children	Spina bifida
We Can Do It!	Dwight	For kids, about disabilities, recommended by a girl with spina bifida	Children	Spina bifida
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
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
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
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
Seekers Guide: The New American Spirituality, The	Lesser	Discusses the author’s own spiritual journey in the context of spiritual formation.	AEC 2002	Spirituality
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
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
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
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
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
The Young Actor’s Book of Improvisation: Dramatic situations from Shakespeare to Spielberg	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
Complex Craniofacial Problems: a Guide to Analysis and Treatment	Dufresne, Carson, and Zinreich	Textbook on craniofacial problems	Let’s Face it	Text
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
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
Physicians’ Guide to Rare Diseases (2nd edition)	Theone		Let’s face it	Text
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
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
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
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

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