Book List

 

The Michigan Family to Family has compiled a list of books for your consideration. These books are not endorsed by Michigan Family to Family Health Information Center, Michigan Public Health Institute or our funders. Any information provided should not be used for diagnosing or treating a health problem or disease, and is not a substitute for professional care.

If you have a book you would like to see on this list, please send your suggestion to us.  Please fill out our “Contact Us” form with the name of the title and author of the book you are recommending.   Thank you.

 

ADD/ADHD

Title:          Teenagers with ADD and ADHD: A guide for parents and professionals
Author:     Chris A. Zeigler Dendy, M.S.
Publisher:          Woodbine House (2006)
Description:      Gives parents insight on everything from understanding the diagnosis to treatment options, and from behavioral and academic issues, to parent involvement and self-advocacy. Looks at key areas that make adolescence–an already challenging time of life–potentially more difficult for kids with ADD or ADHD: academics, dating, driving, socializing, and greater independence.

 Title:          A Bird’s-Eye View of Life with ADD and ADHD: Advice from young survivors
Author: 
    Chris A. Zeigler & Alex Zeigler
Publisher:          Cherish the Children (2007)
Description:      A resource for teenagers and their parents and teachers. What makes this book different is that one of the authors is a young adult with ADHD. Together, the authors gathered stories from a dozen other teenagers with ADHD. They tell what life is like living with this condition and give practical advice on overcoming challenges.

 Title:          Superparenting for ADD: An Innovative Approach to Raising Your Distracted Child
Author:     Edward M. Hallowell & Peter S. Jensen
Publisher:          Ballantine Books (2010)
Description:      With decades of experience working with ADD children, Dr. Edward Hallowell has long argued that ADD is too often misunderstood, mistreated, and mislabeled as a “disability.” Now he teams up with top academic ADD researcher Peter S. Jensen, M.D., to bring you an invaluable new approach to helping your ADD child. Superparenting for ADD offers a specific game plan.

 Title:          ADHD: Living Without Brakes
Author:     Martin L Kutscher
Publisher:          Jessica Kingsley Publishers (2009)
Description:      This concise and highly accessible book contains everything that parents and busy professionals need to know about ADHD.The author describes the spectrum of ADHD, the co-occurring symptoms, and common difficulties that parents face. The rest of the book focuses on solutions, based around four rules.

 Title:          Smart but Scattered
Author:     Peg Dawson & Richard Guare
Publisher:          Guilford Press (2009)
Description:      The latest research in child development shows that many kids who have the brain and heart to succeed lack or lag behind in crucial “executive skills”–the fundamental habits of mind required for getting organized, staying focused, and controlling impulses and emotions. Learn easy-to-follow steps to identify your child’s strengths and weaknesses, use activities and techniques proven to boost specific skills, and problem-solve daily routines.

 

Autism Spectrum Disorders

Title:          An Unexpected Joy: The Gift of Parenting a Challenging Child
Author:     Mary Sharp
Publisher:          NavPress (2003)
Description:      Dr. Mary Sharp shares her grief, anger, depression, and now acceptance of her son’s autism. This memoir offers parents of autistic children a sense that someone else knows what you’re going through, help in dealing with the inevitable emotional and spiritual struggles and insights into pitfalls to avoid and issues to address.

Title:          Freaks, Geeks & Asperger Syndrome (A User Guide to Adolescence)
Author:     Luke Jackson
Publisher:          Jessica Kingsley Pub (2002)
Description:      Luke Jackson is 13 years old and has Asperger Syndrome. Drawing from his own experiences and gaining information from his teenage brother and sisters, he wrote this enlightening, honest and witty book in an attempt to address difficult topics such as bullying, friendships, when and how to tell others about AS, school problems, dating, relationships and morality.

Title:          Not Even Wrong (A Father’s Journey into the Lost History of Autism)
Author:     Paul Collins
Publisher:          Bloomsbury USA (2005)
Description:      In Not Even Wrong, Paul Collins melds a memoir of his son’s autism with a journey into this realm of permanent outsiders. Examining forgotten geniuses and obscure medical archives, and beginning to see why he himself has spent a lifetime researching talented eccentrics, Collins shows how these stories are relevant and even necessary to shed light on autism.

Title:          Gravity Pulls You In (Perspectives on Parenting Children on the Autism Spectrum
Author:
     Kyra Anderson (Author, Editor) & Vicki Forman (Author, Editor)
Publisher:          Woodbine House (2010)
Description:      View the universe of autism–its marvels, chaos, and life-changing impacts–through the eyes of the contributors to Gravity Pulls You In. In 33 essays and poems, mothers and fathers raising children on the autism spectrum explore their lives in the context of autism’s own special gravity, discovering what’s important and what they find centering.

Title:          Taking Care of Myself
Author
:     Mary Wrobel
Publisher:          Future Horizons (2003)
Description:      A hygiene, puberty, and personal curriculum for young people with autism.    The book is designed to address the health and safety needs of students aged five and up with autism spectrum disorders.

Title:          The Autistic Brain: Helping Different Kinds of Minds Succeed
Author:     Temple Grandin
Publisher:          Mariner Books
Description:      Weaving her own experience with remarkable new discoveries, Grandin introduces the advances in neuroimaging and genetic research that link brain science to behavior, even sharing her own brain scan to show which anomalies might explain common symptoms. She argues that raising and educating kids on the autism spectrum must focus on their long-overlooked strengths to foster their unique contributions.

Title:          The Way I See It: A Personal Look at Autism & Asperger’s
Author:     Temple Grandin
Publisher:          Future Horizons (2nd Edition, 2011)
Description:      In this innovative book, Dr. Temple Grandin gets down to the REAL issues of autism, the ones parents, teachers, and individuals on the spectrum face every day. Temple offers helpful do’s and don’ts, practical strategies, and try-it-now tips, all based on her “insider” perspective and a great deal of research.

Title:          The New Social Story Book
Author:     Carol Gray
Publisher:          Future Horizons (10th Edition, 2010)         
Description:      Carol Gray’s world-famous Social Stories have helped thousands of children with autism spectrum disorders.  This 10th Anniversary edition of her best-selling book offers the ready-to-use stories that parents and educators have depended on for years. It now features over 25 additional Social Stories and groundbreaking new strategies for creating custom stories.

Title:          There’s a Boy in Here
Author:     Judy Barron & Sean Barron
Publisher:          Future Horizons (2002)
Description:      This is a view from inside the mind of autism—a dual autobiography written in point-counterpoint style by Judy Barron and her son, Sean Barron. Together, they chronicle Sean’s young life and the effects of autism on him and his family. 

Title:          Born on a Blue Day
Author:     Daniel Tammet
Publisher:         Free Press (Reprint 2007)
Description:     The author is a high-functioning young man with Asperger’s Syndrome. His memoir is a fascinating look into the mind and life of someone with ASD.

Title:           Autism in the Family: Caring and Coping Together
Author:    
Robert Naseff Ph.D
Publisher:          Brookes Publishing (1st Ed, 2012)
Description:      Especially for fathers of autistic children who seem to be left out in many books about autism. It is also for siblings, family, friends, teachers, and professionals who are also important travelling companions on this difficult journey of raising an autistic child to adulthood. It covers most parenting topics giving down-to-earth advice how to tackle the most challenging situations. Case studies and personal stories show you others find it difficult too and has practical suggestions on how to cope, how to accept, and how to love your child in the moment.

 

Bereavement

 Title:          The Bereaved Parent
Author:     Harriet Sarnoff Schiff
Publisher:          Penguin Books (Reprint 1978)
Description:      Practical supportive advice for bereaved parents and the professionals who work with them, based on the experiences of psychiatric and religious counselors.

 Title:          When the Bough Breaks: Forever after the Death of a Son or Daughter
Author:      Judith R. Bernstein
Publisher:          Andrews McMeel Publishing (1998)
Description:          When the Bough Breaks presents a breakthrough concept of mourning, documenting the process of evolution from initial grief to an altered outlook on life. Excerpts from interviews with 50 parents who lost a child from five to forty-five trace the road from utter devastation to a revised view of life, resulting in a work that is a tribute to resilience and the indomitable human spirit.

 

Bipolar Disorder

Title:          The Bipolar Child
Author:     Demitri Papolos
Publisher:          Broadway (3rd Edition, 2007)
Description:          Since it first appeared on bookshelves, The Bipolar Child has made an indelible mark on the field of psychiatry and has become the resource that families rely upon. Now, with more than 200,000 copies sold, the first book about early-onset bipolar disorder is completely revised and expanded.

Title:          Bipolar Kids
Author:     Rosalie Greenberg
Publisher:          De Capo Press (Reprint 2008)
Description:      Child psychiatrist Rosalie Greenberg offers parents and professionals alike an innovative approach to help bipolar youngsters locate that elusive inner calm. Gathering stories from families on the front lines, she shows parents how best to navigate the peaks and valleys of the disorder, addresses family relationships, and guides parents in making meaningful choices about their child’s education and treatment options.

 Title:          The Bipolar Teen: What You Can Do to Help Your Child and Your Family
Author:     David J. Miklowitz & Elizabeth L. George
Publisher:          Guilford Press (2007)
Description:      The Bipolar Teen provides tools you can use to make home life manageable again. Learn to spot the differences between normal teenage behavior and the telltale symptoms of mania and depression. Together with your child’s doctors, learn to strike a healthy balance between medication and psychotherapy, recognize and respond to the early warning signs of an oncoming episode, and collaborate effectively with school personnel.

 

Cerebral Palsy

Title:          Blue Sky July: A Mother’s Story of Hope and Healing
Author:     Nia Wyn
Publisher:          Dutton Adult (2008)
Description:      Set between the summers of 1998 and 2005 in Cardiff, Wales, Blue Sky July follows the story of Nia Wyn, a mother who battles against impossible odds to heal her son after he suffers a brain injury and is diagnosed with severe cerebral palsy. Told by doctors that her son would never walk, talk, see or even recognize her, Wyn devotes her every waking moment to exploring alternative treatments in the hopes of achieving even the smallest of breakthroughs.

 

Congenital Heart Defects

Title:          Hope for Families of Children with Congenital Heart Defects
Author:     Lynda Young
Publisher:          Kindred Press (2010)
Description:      From the initial diagnosis and throughout the daunting journey, the twelve chapters and resources in this guide weave advice, support, and hope from fellow travelers and medical professionals who come alongside through encouraging short stories, refreshing helpful hints, and inspiring scriptures and prayers.

 Title:          Heart Warriors: A Family Faces Congenital Heart Disease
Author:     Amanda Rose Adams
Publisher:          Behler Publications (2012)
Description:      Five months pregnant, Amanda Adams and her husband were given two abysmal choices regarding her pregnancy: force her baby to fight for his life through countless invasive and dangerous surgeries, or perform a late term abortion. Despite the fact that Liam was missing half his heart, Amanda chose life. Heart Warriors is Amanda’s personal and emotional story that initiates a powerful dialogue about infant mortality and hope.

 

Cystic Fibrosis

Title:          Sixtyfive Roses: A Sister’s Memoir
Author:     Heather Summerhayes Cariou
Publisher:          Mcarthur & Company (2008)
Description:      Memoir exploring the effect of medical issues (Cystic Fibrosis) on siblings through adulthood.

 Title:          Cystic Fibrosis: A Guide for Patient and Family
Author:     David M. Orenstein, Jonathan E. Spahr & Daniel J. Weiner
Publisher:          LWW (4th Edition, 2011)
Description:          This one-of-a-kind guide offers easy-to-understand explanations, advice, and management options for patients or parents of patients with cystic fibrosis. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF.

 Title:          Cystic Fibrosis: Alternative Treatments
Author:     Joseph T. Birch
Publisher:          CreateSpace Independent Publishing (2013)
Description:      Cystic fibrosis is an inherited disease that causes not only suffocation but it causes by destroying the villus and microvillus in the intestines, an inability to absorb nutrients often causing little children to become infected by numerous pathogens because their undernourished immune system is too weak to fight off these pathogenic microbes. The author shares there are many treatments for CF in addition to drugs treatments and it is possible to minimize the symptoms of CF.

 Title:          The Drive at 35: The Long Road to Beating Cystic Fibrosis
Author:     Andy Lipman
Publisher:          Dunham Books (2012)
Description:      This is the inspiring account of Andy Lipman’s life with cystic fibrosis and the candid story of a young man finding his way in the world, despite big challenges. This is the story of a competitive person with a life-threatening disease-the story of a person with hopes and dreams, just like everyone else, who must also deal with extraordinary circumstances.

 

Diabetes

Title:          American Diabetes Association Guide to Raising a Child with Diabetes
By:     Jean Betschart Roemer
Publisher:          American Diabetes Association (3rd edition, 2011)
Description:      Full of problem-solving examples and easy-to-use tables, the book shows parents how to adjust insulin to allow for the foods children like to eat, care for a child with type 2 diabetes, handle sick days, and plan meals that are nutritious and balanced. The book also addresses how to play sports and games safely, help children maintain a busy schedule and still feel healthy and strong, negotiate the twists and turns of being “different,” and accept the physical and emotional challenges that life has to offer.

Title:          The Everything Parent’s Guide to Children with Juvenile Diabetes
Author:     Moira McCarthy & Jake Kushner
Publisher:          Adams Media (2007)
Description:     The Everything Parent’s Guide to Children with Juvenile Diabetes helps you cope with the challenges of helping your children live happy, healthy lives while controlling the disease. This reassuring, easy-to-use guide features advice on: adjusting to life with diabetes, helping your children take control of their health, monitoring diet and insulin levels, handling emergencies and finding support for you and your children.

 

Disability Rights

Title:          No Pity: People with Disabilities Forging a New Civil Rights Movement
Author: 
    Joseph P. Shapiro
Publisher:          Broadway Books (1994)
Description:      In No Pity: People with Disabilities Forging a New Civil Rights Movement, Joe Shapiro of U.S. News & World Report tells of a political awakening few nondisabled Americans have even imagined. A chronicle of disabled people’s struggle for inclusion, from the seventeenth-century deaf communities on Martha’s Vineyard to the enactment of the Americans with Disabilities Act of 1992.

Title:          Raymond’s Room: Ending the Segregation of People with Disabilities
Author:     Dale DiLeo
Publisher:          Training Resource Network (2007)
Description:          Using research, anecdotes, and heartwarming stories, DiLeo takes aim at the billion-dollar “disability industrial complex” that segregates people with significant disabilities from mainstream life. Calling people with disabilities society’s “hidden citizens,” he describes a system that prevents people from working and living in our communities, despite new techniques and approaches proven effective in helping even those with the most serious challenges to be employed and to have a home to call their own.

 

Diversity

Title:          Far From the Tree: Parents, Children and the Search for Identity
Author:     Andrew Solomon
Publisher:          Scribner (2012)
Description:     Andrew Solomon tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so. Solomon’s startling proposition is that diversity is what unites us all. He writes about families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, as are the triumphs of love Solomon documents in every chapter.

 

Down Syndrome

Title:          Common Threads: Celebrating Life with Down Syndrome
Author:     Cynthia S Kidder & Brian G Skotko
Publisher:          Band of Angels Press (2007)
Description:      Celebrate the accomplishments of 59 persons with Down syndrome from across the U.S. and Canada, all chronicled in this unique and inspiring book. Original black-and-white photographs, research, and exclusive information from the Band of Angels survey of children with Down syndrome round out the pages.

Title:          Sometimes Miracles Hide
Author:     Bruce Carroll
Publisher:          Howard Books (1999)
Description:      A tremendously touching book inspired by stirring letters Bruce Carroll received from those who were touched by his song “Sometimes Miracles Hide”. These deeply moving letters of poured-out hearts and portraits of faith show how God took what was first perceived as bleak news and turned it into a miracle of discovery and devotion.

 Title:          A Special Kind of Hero: Chris Burke’s Own Story
Author: 
    Jo Beth McDaniel
Publisher:          iUniverse (2001)
Description:      Chris Burke became one of America’s favorite personalities when he starred as “Corky” on the hit ABC television series “Life Goes On.” This is Chris’ story, and the story of his family’s love and determination. He tells what it’s really like to grow up with Down syndrome and how he pursued his seemingly impossible show business goals…and how he has dedicated his life to helping people with special needs, especially those with what he calls “Up Syndrome.”

Title:           Count Us In: Growing Up with Down Syndrome
Author:     Jason Kingsley & Mitchell Levitz
Publisher:          Mariner Books (2007)
Description:      At ages 19 and 22, respectively, Jason Kingsley and Mitchell Levitz shared their innermost thoughts, feelings, hopes, and dreams, their lifelong friendship—and their experiences growing up with Down syndrome. Their wit, intelligence, candor, and charm make a powerful and inspirational statement about the full potential of people with developmental disabilities, challenging prevailing stereotypes.

Title:          Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
Author:     Kathryn Lynard Soper (Author) &Martha Sears (Foreword)
Publisher:          Woodbine House (2007)
Description:      Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way. In this candid and poignant collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives.

 Title:          Gifts 2: How People with Down Syndrome Enrich the World
Author:     Kathryn Lynard Soper
Publisher:          Woodbine House (2009)
Description:      Gifts 2 presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Title:          The Book about James
Author:     Julia Gray
Publisher:          AuthorHouse (2015)
Description:      Julia Gray shares her story about her youngest child, James, who was born with Down syndrome, to challenge people to have the courage to see things without preconceived notions and prejudices.

Education & Inclusion

Title:          Believe in My Child with Special Needs
Author:     Mary A. Falvey
Publisher:          Brookes Publishing (2005)
Description:      This upbeat, reassuring handbook is an invaluable resource to share with parents of a school-age child with a disability. It demystifies complicated issues, encourages parents to celebrate abilities and recognize possibilities, and tells parents what they need to know to be successful advocates throughout their child’s education.

Title:          A Mind at a Time
Author:      Mel Levine
Publisher:          Simon and Schuster (Reprint 2003)
Description:      Dr. Levine shows parents and those who care for children how to identify individual learning patterns, explaining how they can strengthen a child’s abilities and either bypass or help overcome the child’s weaknesses, producing positive results instead of repeated frustration and failure.

Title:          Wrightslaw: From Emotions to Advocacy
Author:     Pam Wright & Pete Wright
Publisher:          Harbor House Law Press (2nd Edition, 2006)
Description:      Wrightslaw: From Emotions to Advocacy, second edition will teach you how to plan, prepare, organize and get quality special education services. In this comprehensive, easy-to-read book, you will learn your child’s disability and educational needs, how to create a simple method for organizing your child’s file and devising a master plan for your child’s special education.

Title:          Wrightslaw: Special Education Law
Author:     Peter Wright & Pamela Wright
Publisher:          Harbor House Law Press, Inc. (2nd Edition, 2007)
Description:      Wrightslaw: Special Education Law, 2nd Edition provides a clear roadmap to the laws and how to get better services for all children with disabilities. This Wrightslaw publication is an invaluable resource for parents, advocates, educators, and attorneys.

Title:          Wrightslaw: All About IEPs
Author
:     Peter Wright & Pamela Wright
Publisher:          Harbor House Law Press, In. (2010)
Description:      Whether you are the parent of a child with special education needs, a seasoned educator, or a professional advocate, you have questions about Individualized Education Programs, (IEPs). In this comprehensive, easy to read book, you will find clear, concise answers to frequently asked questions about IEPs. Learn what the law says about IEP Teams and IEP Meetings, Parental Rights and Consent, Steps in Developing the IEP, Placement, Transition, Assistive Technology and Strategies to Resolve Disagreements.

Title:          Because We Can Change the World: A Practical Guild to Building Cooperative, Inclusive Classroom Communities
Author:     Mara Sapon-Shevin
Publisher:          Corwin (2nd Edition, 2010)
Description:      This book blends vision statements, stories, and strategies to guide teachers in promoting social justice and creating classrooms that allow all children to experience academic success. This new edition provides a powerful vision of diverse, inclusive elementary classrooms, discusses the barriers to creating cooperative classrooms and how they can be overcome. It offers activities, songs, and children’s literature that promote acceptance and understanding and includes new sections with reflective questions that help readers examine their own beliefs and teaching practices.

Title:           Widening the Circle: The Power of Inclusive Classrooms
Author:      Mara Sapon-Shevin
Publisher:          Beacon Press (2007)
Description:          Widening the Circle is a passionate, even radical argument for creating school and classroom environments where all kids, including children labeled as “disabled” and “special needs,” are welcome on equal terms. In opposition to traditional models of special education, where teachers decide when a child is deemed “ready to compete” in “mainstream” classes, Mara Sapon-Shevin articulates a vision of full inclusion as a practical and moral goal.

 

Fragile X

Title:          Children with Fragile X Syndrome: A Parent’s Guide
Author:     Jayne Dixon Weber
Publisher:          Woodbine (2000)
Description:      This guide is written by renowned professionals and experienced parents, who offer an in-depth look at the issues and concerns affecting children and their families. It covers: diagnosis; parental emotions; therapies and medications; development; early intervention; education; daily care; legal rights; and advocacy.

Title:          Understanding Fragile X Syndrome: A Guide for Families and Professionals
Author
:     Isabel Fernández Carvajal
Publisher:          Jessica Kingsley Pub (2011)
Description:     This book breaks down the complex science of this genetic disorder and provides the facts and advice that every bewildered parent or professional needs to support individuals with Fragile X syndrome. With sections on diagnosis, symptoms and treatment, as well as discussions of various emotional and behavioral considerations, this guide covers all aspects of Fragile X syndrome, its implications, and the possibilities open to families affected by it.

Title:          Becoming Mrs. Rogers: Learning to Live the Fragile X Way
Author:     Cindi Rogers
Publisher:          CreateSpace Independent Publishing (2014)
Description:      Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.

Title:          My eXtra Special Brother
Author:     Carly Heyman
Publisher:          Fragile X Assn of GA (2003)
Description:      Sixteen-year-old Carly Heyman writes a story of growing up with her big brother Scott, a young man who has a sweet smile, a courageous heart, and fragile X syndrome. In her direct and honest voice, Carly reveals the ins and outs, ups and downs of daily life with Scott. She identifies challenges that siblings of a brother or sister with special needs may encounter.

Title:          Fragile X – A to Z: A Guide for Families by Families
Author:     Mary Beth Langan, Sally Nantais & Wendy Dilworth (Editors)
Publisher:          Available as free download at http://www.fraxa.org/pdf/atozguide.pdf
Description:      This guide is intended to help families cope with the daily challenges of living with a child who has a disability, specifically Fragile X Syndrome. Many of the topics discussed may pertain to parents with children affected by other disabilities and with typically developing children.

Title:           A Medication Guide for Fragile X
Author:     Michael Tranfaglia
Publisher:          FraXa Research Foundation Download at http://www.fraxa.org/shop/medication-guide-fragile-x/
Description:      Written by medical director of FraXa and parent of a young man with Fragile X. Updated 2009

 

Marriage & Special Needs Parenting

Title:          Married with Special Needs Children (A Couple’s Guide to Keeping Connected)
Author:     Laura E. Marshak and Fran P. Prezant
Publisher:          Woodbine House (2007)
Description:      A guide that speaks to parents about how to work on marital issues while juggling the demands of raising a child with a developmental disability, serious medical condition, or mental illness. The authors draw on their combined professional experience in marital counseling and parent training, as well as on the experience and advice of hundreds of parents of children with special needs.

 

Mental Illness

Title:          January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her
Author
:     Michael Schofield
Publisher:          Broadway (Reprint 2013)
Description:      At age six, January (“Jani”) Schofield was diagnosed with one of the most severe cases of child-onset schizophrenia on record. January First is a father’s soul-bearing memoir of the daily challenges and unwavering commitment to save his daughter from the edge of insanity while doing everything he can to keep his family together.

Title:          Defying Mental Illness: Finding Recovery with Community Resources and Family Support
Author:    
Paul Komarek and Andrea Schroer
Publisher:           CreateSpace Independent Publishing Platform (2014 Edition)
Description:       Focuses on recovery where people make progress, get better, and control their own lives. It also goes beyond recovery and shows people can use their strengths and skills to flourish and have a future. Find information on choosing treatment, paying for mental health care, housing assistance programs, employment, disability benefits, involuntary hospitalization, near-term and long-term suicide prevention, the criminal justice system, and links to allies and advocacy groups, and more.

Title:          Better Days: A Mental Health Recovery Workbook
Author:     
Craig Lewis
Publisher:           lulu.com (2015)
Description:       Features 37 passages and accompanying worksheets based on the author’s personal experience of learning coping skills that have allowed him to live a happier, healthier and more satisfying life. The workbook can be helpful for people with all sorts of struggles including people who struggle with mental health issues, addiction and trauma as well as work or parental stress and in managing interpersonal relationships, etc.            

 

Muscular Dystrophy

Title:          Journey Through Heartsongs
Author:     Mattie J.T. Stepanek
Publisher:          Hyperion (2002)
Description:      Mattie Stepanek is a young boy battling a rare form of muscular dystrophy, who watched his siblings pass away from the same disease. His poetry is beautiful and inspiring and reflects a joy and understanding of life well beyond his years.

Title:          In Your Face Duchenne Muscular Dystrophy: All Pain All Glory
Author:     Misty VanderWeele
Publisher:          Misty VanderWeele (2010)
Description:      A living memoir of mother’s journey with sons life threatening disease Duchenne Muscular Dystrophy. As a gift to present him for graduation and in celebration of his life now, while he still graces this planet with his life. For he has lived longer then “they” said he would.

Title:          I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Disease
Author
:     Star Bobatoon
Publisher:          Blackcurrant Press Co. (2011)
Description:      This authentic story speaks to the strength and resolve of a mother who believes that life is to be lived and celebrated, despite the realities of any real or perceived limitations.   This book teaches the importance of embracing the full spectrum of emotions – the love and the hate – that life presents when faced with unexpected challenges, particularly that of a chronic illness.

 

Parenting & Special Needs

Title:          You Will Dream New Dreams
Author:    Stanley D. Klein, Ph.d. and Kim Schive
Publisher:          Kensington (2001)   
Description:      Inspiring personal stories by parents of children with disabilities.  Shared narratives come from those with newly diagnosed children, adult disabled children, and everything in between.

Title:           Building a Joyful Life with your Child who has Special Needs
Author:     Nancy J. Whiteman & Linda Roan-Yager
Publisher:          Jessica Kingsley Publishing (2007)
Description:      All parents want the best for their child, and for parents of children with special needs, this can mean that their own well-being is neglected. Drawing from their own experiences of parenting children with special needs, interviews and workshops with parents, and research findings, this book explores practical ways in which parents can develop a resilient and positive attitude towards caring for their child with special needs.

Title:          Rules for Parents
Author:     Nan Silver
Publisher:          Berkley Trade (2000)
Description:      Whether your goal is to instill independence or a love of learning, to tame a tantrum or your own impatience, Rules for Parents offers quick and sensible tactics that really work. Filled with smart (and sometimes surprising) strategies for giving children from infancy to kindergarten a strong start — this warm and loving guide will help parents and kids “play by the rules.”..and win.

Title:          Different Dream Parenting
Author:     Jolene Philo
Publisher:          Discovery House Publisher (2011)
Description:      In Different Dream Parenting, you’ll find biblical insights and practical resources to strengthen you in your walk with God and equip you for the journey ahead. Discover how you can move from chaos to calm and experience the joy of being your child’s biggest and best supporter.

Title:          Shut Up About Your Perfect Kid (A Survival Guide for Ordinary Parents of Special Children)
Author
:     Gina Gallagher & Patricia Konjoian
Publisher:          Harmony (2010)
Description:      On a “perfection-preoccupied planet,” sisters Gina and Patty dare to speak up about the frustrations, sadness, and stigmas they face as parents of children with disabilities (one with Asperger’s syndrome, the other with bipolar disorder). This refreshingly frank book, which will alternately make you want to tear your hair out and laugh your head off, provides wise and funny advice.

Title:          More Than a Mom: Living a Full and Balanced Life When Your Child has Special Needs
Author
:     Heather Fawcett & Amy Baskin
Publisher:          Woodbine House (2006)
Description:      More Than a Mom explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. The authors’ skillful blend of research, personal experiences, and feedback from over 500 mothers across North America results in a book that is jam-packed with practical strategies, advice, and reassurance for mothers trying to create more manageable and fulfilling lives

Title:          Easy for You to Say: Q & A’s for Teens Living with Chronic Illness or Disability
Author:     Miriam Kaufman
Publisher:          Firefly books (2005 Revised)
Description:      Easy for You to Say profiles the lives of uniquely challenged teens as they work hard to make sense of the world and their place in it. The book includes street language that teens can identify with and readily understand. The questions posed are frank, courageous and cover such issues as: Sex, Drugs, Family, Death. With answers that often are not easy or pretty Easy for You to Say offers practical advice, straight talk and honest answers to questions that many would be too embarrassed to ask.

Title:          The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son
Author:     Ian Brown
Publisher:          St. Martin’s Press (2011)
Description:      Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. Ian Brown offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As he gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is.

 Title:          Changed by a Child
Author:     Barbara Gill
Publisher:          Harmony (1998)
Description:      Raising a child with a disability can often be more isolating and frustrating than any parent ever imagines. Finally, here is a book that honestly describes the inner needs and range of issues parents with disabled children face. Changed by a Child invites parents to take a moment for themselves. Each of the brief readings offers comfort and hope as they capture the unique challenges and joys of raising a disabled child.

 Title:          Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities
Author:     Kathie Snow
Publisher:          BraveHeart Press (2001)
Description:      In this book, parents learn revolutionary common sense techniques for raising successful children with disabilities. When we recognize that disability is a natural part of the human experience, new attitudes lead to new actions for successful lives at home, in school and in communities.

Title:          The Child Who Never Grew
Author:     Pearl S. Buck
Publisher:          Woodbine House (Reprint 1992)
Description:      Written by the Nobel and Pulitzer prize-winning author, this personal account broke a national taboo when it was originally published in 1950. Buck’s inspiring account of her struggle to help and understand her daughter with mental impairment was the first disclosure of its kind by a public figure. Today, much of the emotional experience Buck so eloquently describes still rings true. New material written especially for this edition amplifies her story and gives the book an important historical perspective.

Title:          UNCOMMON beauty: Crisis Parenting from Day One
Author:     Margaret Meder
Publisher:          Beaver’s Pond Press (1st Ed., 2012)
Description:      Aguidebook written by a mom who’s been there. It delivers specific, pragmatic strategies for everything from crossing emotional hurdles to handling financial realities; from navigating hospitals to becoming your child’s best advocate; from accepting the help of others to finding an inner strength. Down-to-earth wisdom comforts and empowers the parents who need it the most, and words of hope reveal the secret to living a life more meaningful than ever thought possible.

Title:          Chasing Hope: Navigating the World of the Special Needs Child
Author:
     Christine Walker
Publisher:           RTC Publishing (2014)
Description:       The special needs, parenting guide book Christine Walker wished she’d have to help her raise her son diagnosed when he was four with ADHD, bipolar disorder, and autism. It is a powerful and poignant memoir, an instruction manual for families trying to navigate the complex and overwhelming world of children’s mental health, a resource for educators, pediatricians, and mental health professionals, and an eye opener for policy makers.

 

Parent/Professional Partnerships

Title:           Parents and Professionals Partnering for Children with Disabilities
Author:     Janice M. Fialka, Arlene K. Feldman & Karen C. Mikus
Publisher:          Corwin (2012)
Description:      Written from both the parent’s and the professional’s points-of-view, this book is rich with stories, examples, and practical suggestions. Using dance as a metaphor, the authors provide a developmental approach to understanding and forging positive adult relationships while showing concrete ways to advocate for and with children.

 

Premature Birth

Title:           Alex: The Fathering of a Preemie
Author:     Jeff Stimpson
Publisher:          Chicago Review Press (2005)
Description:          Stimpson traces the life of his child from birth to kindergarten: four wings in two hospitals; coming home with a roomful of medical gear and round-the-clock drugs and nursing; the gains and downturns of home therapy through Early Intervention; finding and prospering in a special-needs preschool; a diagnosis of autism; and the ongoing battle to give Alex a fair shot at childhood, and at life.

 

Sensory Processing Disorder

Title:          The Out-of-Sync Child
Author:     Carol Kranowitz
Publisher:          Perigee Trade (Revised 2006)
Description:      The Out-of-Sync Child broke new ground by identifying Sensory Processing Disorder, a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. This newly revised edition features additional information from recent research on vision and hearing deficits, motor skill problems, nutrition and picky eaters, ADHA, autism, and other related disorders.

Title:          The Out-of-Sync Child Has Fun
Author:     Carol Kranowitz
Publisher:          Perigee Trade (Revised 2006)
Description:      Each activity in this inspiring and practical book is SAFE—Sensory-motor, Appropriate, Fun and Easy—to help develop and organize a child’s brain and body. Whether your child faces challenges with touch, balance, movement, body position, vision, hearing, smell, and taste, motor planning, or other sensory problems, this book presents lively and engaging ways to bring fun and play to everyday situations.

 Title:          Sensational Kids: Hope and Help for Children with Sensory Processing Disorder
Author:     Lucy Jane Miller & Doris A. Fuller & Janice Roetenberg
Publisher:          Perigee Trade (Revised 2014)
Description:      Sensory Processing Disorder is an increasingly common diagnosis, with a wide range of symptoms that can be difficult for parents and pediatricians to identify. In Sensational Kids, Dr. Miller shares her more than forty years of experience and research findings on SPD. It is an authoritative and practical guide to understanding and treating this little-understood condition

Title:          Growing an In-Sync Child
Author:     Carol Kranowitz & Joye Newman
Publisher:          Perigee Trade (2010)
Description:      Based on the authors’ more than seventy combined years of professional success working with children of all abilities, Growing an In-Sync Child provides parents, teachers, and other professionals with the tools to give every child a head start and a leg up.

 

Sexuality & Special Needs

Title:          Sexuality: Your Sons and Daughters with Intellectual Disabilities
Author:     Karin Melberg Schwier & Dave Hingsburger
Publisher:            Brookes Publishing Company (2000)
Description:        Parents have a key role in making sure their child develops healthy sexuality, that sense of self and confidence that helps make us all well-adjusted and strong individuals. In this book, you’ll learn how to interact with your children – no matter their age or ability – in a way that increases self-esteem, encourages appropriate behavior, empowers them to recognize and respond to abuse, and enables them to develop life- long relationships.

Title:         The Facts of Life…and More: Sexuality and Intimacy for People with Intellectual Disabilities
Author
:     Leslie Walker-Hirsch
Publisher:            Brookes Publishing (2007)
Description:        Making good decisions about sexuality is a critical part of adulthood, but sometimes people with intellectual disabilities don’t get the support or education they need to navigate this complex aspect of life. Professionals will change that with this urgently needed book, which gives social workers, teachers, and direct support professionals the comprehensive information they need to educate people with disabilities about sexuality and help them make the best possible choices across the lifespan.

 

Siblings

Title:            Views from our Shoes
Author:     Don Meyer (Editor)
Publisher:           Woodbine House (1997)
Description:       Forty-five siblings share their experiences as the brother or sister of someone with a disability. Their personal tales introduce young siblings to others like them, perhaps for the first time, and allow them to compare experiences. A glossary of disabilities provides easy-to-understand definitions of many of the conditions mentioned.

Title:          The Sibling Survival Guide
Author:     Don Meyers and Emily Holl (Editors)
Publisher:          Woodbine House (2014)
Description:      If you’re a teenaged or adult brother or sister of someone with a disability, then this book is expressly for you. It offers a sense that you’re not alone, tips on how to talk to your parents about plans for your sibling, and a crash course in guardianship, medical & legal issues, and government benefits if you’re already caring for your sib.

Title:          The Sibling Slam Book
Author:     Don Meyers
Publisher:          Woodbine House (2006)
Description:      Give teenagers a chance to say what’s on their minds, and you might be surprised by what you hear. Don Meyer, creator of Sibshops, invited together a group of 80 teenagers to talk about what it’s like to have a brother or sister with special needs. Their unedited words are a brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities.

Title:          Brothers & Sisters: A Special Part of Exceptional Families
Author:     Peggy A Gallagher, Thomas H. Powell & Cheryl A. Rhodes
Publisher:          Brookes Publishing (2006)
Description:      In the third edition of this classic resource, families and professionals will deepen their understanding of sibling relationships and learn how to support positive, lifelong bonds between brothers and sisters. Readers will get specific ideas, illuminating research, ready-to-use strategies, and personal anecdotes from siblings to help them

 

Spinal Muscular Atrophy

Title:          Laughing at My Nightmare
By:     Shane Burcaw
Publisher:          Roaring Book Press (2014)
Description:      Laughing at My Nightmare describes the challenges faced by a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a “you-only-live-once” perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.

 

Spirituality

Title:          The Spiritual Art of Raising Children with Disabilities
Author:    
Kathleen Deyer Bolduc
Publisher:          Judson Pr (2014)
Description:      In this book, writer, parent, and spiritual director Kathleen Deyer Bolduc, with honesty and humor, wisdom and wit, invites the caregivers of children with disabilities to steep themselves in Scripture and self-reflection. Provides a unique perspective of a parent raising a child with disabilities and dealing with it through faith and spiritual direction along with powerful, insightful, faith-inspired stories of other families who are walking similar paths.

Title:          Autism and Alleluias
Author:     Kathleen Deyer Bolduc
Publisher:          Judson Pr (2010)
Description:      In this series of slice-of-life vignettes, God’s grace glimmers through the shadows as Joel, an intellectually challenged teen with autism, teaches those who love him that walking the labyrinth of life requires childlike faith, humility, trust, compassion, forgiveness, and an attitude of openness to all of God s gifts.

Title:          Autism and Your Church: Nurturing the Spiritual Growth of People with ASD
Author:
    Barbara J. Newman
Publisher:          Faith Alive Christian Resources (2nd Ed., 2011)
Description:     Autism and Your Church offers practical ways to welcome and include individuals with ASD into the full life of your congregation. This resource will enable church leaders to appreciate those with ASD as persons created in God s image, learn about six common areas of difference in individuals with ASD, discover ten strategies for including people with ASD in the life of your church,  and develop an action plan for ongoing ministry with children and adults who have ASD.

Title:          Including People with Disabilities in Faith Communities
Author:    
Erik W. Carter
Publisher:          Brookes Publishing (1st Ed., 2007)
Description:      To make inclusion work in any faith community, this how-to book gives readers workable strategies and photocopiable forms for identifying indicators of welcome, encouraging community outreach, and gathering important information about the support needs of people with disabilities and their families.

Title:          Disability and the Gospel: How God Uses Our Brokeness to Display His Grace.
Author:     Michael S. Beates
Publisher:          Crossway (1st Ed., 2012)
Description:      Working through key Bible passages on brokenness and disability while answering hard questions, Michael offers helpful principles for believers and their churches. He shows how to embrace our own brokenness and then to embrace those who are more physically and visibly broken, bringing hope and vision to those who need it most.

         

Support

Title:          You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children w/ Disabilities
Author:     Stanley D. Klein (Editor) & Kim Schive (Editor)
Publisher:          Kensington Books (2001)
Description:      Klein and Schive have collected from all over the country stories by parents of children with special needs. 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.

Title:          Reflections from a Different Journey
Author:     Stanley D. Klein (Editor) & John D. Kemp (Editor)
Publisher:          McGraw-Hill Companies (2004)
Description:      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.

 

Rett Syndrome:

Title:          Keeping Katherine: A Mother’s Journey to Acceptance
Author:     Susan Zimmerman
Publisher:          Harmony (2004)
Description:      In Keeping Katherine, Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett syndrome, a devastating neurological disorder. Writing with honesty and candor, Zimmermann chronicles her personal journey to accept the changed dynamic of her family; the strain of caring for a special needs child and the pressure it placed on her marriage, career, and relationship with her parents; the dilemma of whether Kat would be better cared for in a group home; and most important, the altered reality of her daughter’s future.

Title:          The Rett Syndrome Handbook
Author:     Kathy Hunter
Publisher:          International Rett Syndrome Foundation (2nd Edition)
Description:      A valuable resource to families raising a child with Rett Syndrome. This second edition expands upon the work of the first edition and provides information on a wide variety of topics including therapy, behavior, medical issues, education, family dynamics, etc. It is a must have for information about Rett Syndrome.

 

Traumatic Brain Injury

Title:          Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s TBI
Author:     Dixie Fremont-Smith Coskie
Publisher:          Wyatt-MacKenzie (2009)
Description:      This story of survival starts with Dixie’s 13 year old son’s traumatic brain injury (TBI) when he was involved in a car accident while riding his bike; he was not wearing a bike helmet. Feeling helpless and powerless, they sit in shifts next to their comatose child. Their hearts are divided and shattered, as they try to keep their home life stable and have one parent around the clock at their son’s bedside. Parents going through hardships and coping with the various emotions this brings will be able to relate.

  

Fiction

Title:          The Memory Keeper’s Daughter
Author:     Kim Edwards
Publisher:          Penguin Books (2006)
Description:      The Memory Keeper’s Daughter explores deception, family secrets, the influence of the past on the present, our tendency to rationalize poor decisions, and the tenuous nature of human connections.

Title:          A Wild Ride up the Cupboards
Author:     Ann Bauer
Publisher:          Scribner (2006)
Description:      Edward is nearly four years old when he begins his slow, painful withdrawal from the world. The transformation of this happy, intelligent firstborn into a sleepless, feral stranger is a devastating blow, one that will send shockwaves through every nook and cranny of family life. A Wild Ride Up the Cupboards is the story of Edward’s descent into autism, and his parent’s struggle to sustain their marriage under this unanticipated strain.

Title:          The Oak Leaves
Author:     Maureen Lang
Publisher:          Tyndale House Publishers (2007)
Description:      Talie Ingram finds an old journal belonging to her great-great-great grandmother, Cosima Escott. Through Cosima’s entries, Talie learns that her family was once considered cursed, the result of a genetic disorder (Fragile-X) that may have been passed down to Talie and her sister. Unwilling to face the implications their discovery might have on her own life, Talie tucks the journal back into secrecy, until she begins to see signs of developmental delay in her son.

Title:          Follow the Stars Home
Author:    Luanne Rice
Publisher:          Bantam (Reprint 2011)
Description:      For Dianne Robbins, being a devoted single mother has resulted in her greatest joy and her darkest hours. Weeks before her daughter was born, she and her husband, Tim, received the news every parent fears. Tim had not reckoned on their child being anything less than perfect, and abruptly fled to a solitary existence on the sea, leaving Dianne with a newborn—almost alone.

Title:          The Curious Incident of the Dog in the Night-time
Author:     
Mark Haddon
Publisher:          Vintage (May 2004)
Description:      Christopher John Francis Boone knows all the countries of the world and their capitals and every prime number up to 7,057. He relates well to animals but has no understanding of human emotions. He cannot stand to be touched. And he detests the color yellow. This improbable story of Christopher’s quest to investigate the suspicious death of a neighborhood dog makes for a captivating and unusual novel.

Title:          Handle with Care
Author:     Jodi Picoult
Publisher:          Washington Square (2009)
Description:      Charlotte and Sean O’Keefe’s daughter, Willow, was born with brittle bone disease, a condition that requires Charlotte to act as full-time caregiver and has strained their emotional and financial limits. Handle with Care brings us into the heart of a family bound by an incredible burden, a desperate will to keep their ties from breaking, and, ultimately, a powerful capacity for love.