BIBLIOGRAPHY REGARDING FAMILIES
AND CHILDREN WITH SPECIAL NEEDS

The following books are highly recommended as resources for understanding the special concerns of families raising children with special health care needs and developmental disabilities. The resource list is separated into general categories for ease of use.

Books About Families of Children with Special Needs: Understanding and Personal Support

Berube, Michael (1996). Life as we know it: A father, a family, and an exceptional child.New York: Pantheon Books.

A deeply engaging and philosophical discussion about the many personal and emotional issues fathers face when raising a child with special needs.

Gill, Barbara (1997). Changed by a child, New York: Doubleday.

Ms. Gill, the mother of a son with Down syndrome, candidly describes the needs and issues parents face when raising children with disabilities, including grief and loss, anger, fear, prejudice, stress and fatigue. Included are brief meditations that offer encouragement and hope in the face of isolation and stress.

Greenwald, Robert (2001). My son, my gentle son. New York: iUniverse.com.

Mr. Greenwald gives the reader a profoundly felt expression of a father’s memories of his son. Through poetry and discussion, he shares how his son, born with congenital heart disease, transformed his life.

Klein, Stan & Schive, Kim (2000). You will dream new dreams: Inspiring personal stories byparents of children with disabilities, New York: Kensington Books.

Deeply personal essays written by parents raising children with special needs -- for parents and professionals. One gains insight into the transformative power of a child. For families comes the realization they are not alone in their struggles and triumphs.

Lavin, Judith (2001). Special kids need special parents. New York: Berkley Books.

Ms. Lavin, the mother of a child with cleft lip and palate, addresses the emotional and practical challenges often not addressed by medical practitioners, including coping with chronic pain, sleep problems, and frequent hospitalizations, choosing a therapist, acquiring suitable childcare, helping children to cope with teasing, and the impact a child with special needs might have on a marriage, siblings, and grandparents.

Marsh, Jayne (1995). From the heart: On being the mother of a child with special needs. Bethesda, MD: Woodbine House.

A book that speaks with honesty and compassion, nine mothers explore feelings, fears and knowledge gained in parenting a child with a disability. Topics and themes covered include family life and school issues, building partnerships with professionals, and issues of “self,” including friends and families.

May, James (2002, rev.). Fathers of children with special needs: New horizons. Fathers Network, 16120 N.E. 8th Street, Bellevue, WA 98008.

An in-depth examination and discussion of fathers’ roles within the health care system and concrete strategies for increasing and supporting their involvement. Included are lovely photographs and heartfelt comments from men about their personal journeys. A useful text for both family members and providers. Available in Spanish summer, 2004.

Meyer, Donald (Ed.) (1995). Uncommon fathers: Reflections on raising a child with a disability.Bethesda, MD: Woodbine House.

A series of powerful, poignant essays about fathers and how the experience of being a dad to children with special needs has changed their lives -- marvelous insights for both family members and providers.

Naseef, Robert (2001, rev.). Special children, challenged parents. Baltimore: Paul H. Brookes

An honest, searching book about one man’s journey to come to terms with having an autistic son. The author, a psychologist, shares his thoughts about grief, male-female differences, siblings, and letting go of expectations and rebuilding dreams.

Meyer, Donald (1997). Views from our shoes: Growing up with a brother or sister with specialneeds. Bethesda, MD: Woodbine House.

Forty-five children, ages 4 to 18, share their perceptions about what it’s like to live in a home with a sibling with special needs. Passionate and caring, these young people tell their stories with sensitivity and frequent humor. What is obvious is how much they love their brothers and sisters.

Meyer, Donald (1996). Living with a brother or sister with special needs: A book for sibs.Seattle, WA: University of Washington Press.

When living in a home with a child who has special needs, brothers and sisters experience unique feelings, opportunities and concerns that demand understanding. The author, a pioneer in this field, shares insight on how to assist the “other” children with friends, unselfishness, accepting differences, guilt, over-involvement, understanding, embarrassment, loss, maturity, worry and loneliness.

Miller, Nancy (1999). Everybody’s different: Understanding and changing our reactions todisabilities. Bethesda, MD: Woodbine House.

Dr. Miller, a social worker and anthropologist at UCLA, explores responses to and beliefs about disabilities and how they shape our advancement toward an inclusive society. Included are essential resources and exercises to enhance self-awareness.

Miller, Nancy (1997). Nobody’s perfect: Living and growing with children who have special needs. Bethesda, MD: Woodbine House.

The author speaks with great knowledge and understanding, based on her many years of working with families. Written in conjunction with “Four Moms,” Everybody’s Different details means for balancing one’s life, developing a positive parenting partnership, and interacting with children, friends, relatives, and professionals -- straightforward and non-clinical in tone and understanding.

Seligman, Milton & Darling, Rosalyn (1999). Ordinary families, special children. New York: Guilford Press.

A comprehensive examination of variables that shape the ways families respond to childhood disability, with an emphasis on surmounting physical, cultural, and social barriers. Written for providers, the book combines theory and research with personal accounts from parents, siblings, and grandparents. A social and family systems-based approach to assessment and intervention with diverse families is discussed.

Books for Families and Providers: Advocacy, Resilience, Relationships, Changing Roles, and Family Dynamics

Anderson, Winifred, Chitwood, Stephen & Hayden, Deidre (1997). Negotiating the special education maze: A guide for parents and teachers. Bethesda, MD: Woodbine House.

This is a thorough, lucid explanation of the Individualized Education Program (IEP) process, eligibility, changes in disability laws, including the Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA). All developmental periods are covered: early intervention services for children birth to three, young adults, and transitioning out of school.

Chethik, Neil (2001). Father loss: How sons of all ages come to terms with the deaths of their dads. New York: Hyperion.

Based on a survey of 300 men and in-depth interviews with 70 others, Mr. Chethik offers the reader an impressive examination of how men cope with loss, and why men need to understand the importance of the father-son connection. A variety of relationships are portrayed, including such national figures as Dwight Eisenhower and Michael Jordan.

Gottman, John (1999). Seven principles for making a marriage work. New York: Random House.

John Gottman has researched the habits of married couples for more than two decades. He has identified essential principles that produce long-lasting and positive relationships. Significant reading for all families, particularly those living with high levels of stress. Practical, useful questionnaires and exercises are included.

Levang, Elizabeth (1998). When men grieve: Why men grieve differently and how you can help. Minneapolis, MN: Fairview Press.

Men typically grieve very differently than women, and the author discusses how women can better understand and support men in their losses, while also being true to their own feelings. The book is particularly effective in pointing out how we must address the conflict of raising boys to be protectors, providers, and rational problem solvers and then expect them to be sensitive and openly expressive in times of loss.

Levine, Suzanne Braun (2000). Father courage: What happens when men put family first. NewYork: Harcourt Brace.

A founding editor of Ms. magazine, Ms. Levine explores how expectations for fatherhood are radically changing, and these changes also alter motherhood and the very fabric of family life. Father Courage is for men "who are discovering the pleasures of a dynamic relationship with their families" and who are "beginning to suspect that there are more men like themselves, although most are too busy putting one foot in front of the other to speak up."

Osherson, Sam (1995). The passions of fatherhood. New York: Fawcett Columbine.

Mr. Osherson, a psychologist, uses personal experience as a basis for discussion and learning to give the reader an in-depth exploration of the issues men face when considering marriage, raising children, and balancing work and family. A wonderful storyteller, the author persuades us that fatherhood is the single most important role a man will play in his lifetime.

Parke, Ross & Brott, Armin (1999). Throwaway dads: The myths and barriers that keep men from being the fathers they want to be. Boston: Houghton Mifflin.

Throwaway Dads examines the contemporary myth of the uncaring, macho, indifferent "deadbeat dad" in contrast to the often seen reality of the “post-divorce, disenfranchised, visiting father.” Personal and societal roadblocks that restrict men’s involvement with their families are examined, with excellent suggestions on how men may enhance and nurture active participation with their children.

Pruett, Kyle (2000). Fatherneed: Why father care is as essential as mother care for your child.New York: The Free Press.

Dr. Pruett, psychiatrist and researcher at Yale Child Study Center, uses long-term studies to show that children who are actively involved with their fathers from birth through adolescence develop increased emotional balance, stronger curiosity, and greater self-assurance. He offers practical, concrete suggestions about how men can fully realize their parenting skills without competing with mothers in the process.

Seligman, Milton (2000). Conducting effective conferences with parents of childrenwith disabilities. New York: Guilford Press.

This text, written for educators, focuses on the unique challenges parents face when entering the world of special education. Areas for discussion include changing family dynamics, building effective parent-educator relationships, the skills of collaborative conferencing, and meeting federally mandated laws and requirements. A substantial appendix of resources is included.

Siegel, Lawrence (2002). The complete IEP guide: How to advocate for your special ed child.Berkeley, CA: Nolo Press.

A practical hands-on guide to understanding special-education law, developing an effective IEP, maintaining records, and negotiating disputes. Also included are forms and organizations beneficial to the advocacy process.

Taner-Leff, Patricia & Walizwer, Elaine (1992). Building the healing partnership: Parents,professionals, and children with chronic illnesses and disabilities. Cambridge, MA: Brookline Books.

Patricia Taner-Leff is the parent of a child with special needs. She uses personal stories of parents and professionals to capture the challenges and victories inherent in caring for children with ongoing medical and physical needs.

Walsh, Froma (1998). Strengthening family resilience. New York: Guilford Press.

A well researched, clinical discussion about key factors that influence individuals and families being able to “bounce back” from personal trauma and formidable challenges. The book is intended for social workers, therapists, and practitioners actively engaged with families, particularly those living with high levels of stress.

Wright, Peter & Wright, Pamela (2001). Wrightslaw: From emotion to advocacy - the special education survival guide. Hartfield, VA: Harbor House Law Press.

Pete Wright is an attorney specializing in disability law, and Pam is a therapist who often writes about effective advocacy. Together they have given the reader a comprehensive look at the planning, preparing and organizing needed to receive quality special education services. Also see their web page at: http://www.wrightslaw.com/

This bibliography was developed by James May with funding from Child Development Resources (CDR) of Virginia. Do NOT reproduce without the permission of the author. James May, M.A., M.Ed. For 19 years Mr. May directed the Washington State Fathers Network, a program that provides support and resources for fathers and families of children with developmental disabilities and chronic illness. He may be contacted at: jmay@seanet.com