Down Syndrome Information Network of Southern Tier NY

Down syndrome Resource List

 Most of the resources below are available in our local lending library.  If you are interested in borrowing any of the resources, please contact us at info@dsinstny.org.

Books for Parents and Professionals

Adolescents with Down Syndrome: Toward a More Fulfilling Life. Pueschel, S.M. (Ed.) (1997). Baltimore, MD: Paul H. Brookes Publishing Co. Available through Paul H. Brookes, PO Box 10624, Baltimore, MD 21285; (800) 638-3775.

This book fills the previously existing gap in support resources for young adults and their families.  Experts from diverse backgrounds provide information and perspective on biomedical, psychological, social, sexual, behavioral, educational, recreational and legal concerns.  Readers will also learn how to encourage good nutrition and exercise, promote self-esteem and self-competence, respond to challenging behavior, enhance learning experiences, plan for transitions, and help teens develop leisure pursuits.

Babies with Down Syndrome:  A New Parents’ Guide (2nd Edition).  Stray-Gundersen, K. (Ed.) (1995). Rockville, MD: Woodbine House.  Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

Parents and professionals contribute chapters on the medical, emotional, educational and social issues concerning the development of the child and the family.  A first book for anyone wishing to learn more about Down syndrome, especially for new parents.

Children with Down Syndrome:  A Developmental Perspective. Cicchetti, D. & Beeghly, M., (Eds.) (1990). New York: CambridgeUniversity Press. Available through CambridgeUniversity Press, 110 Midland Avenue, Port Chester, NY10573; (800) 872-7423 or (914) 937-9600.

A collection of papers addressing the current state of knowledge of psychological development in infants and children with Down syndrome.  Linguistic, social, emotional, cognitive and representational factors in the developmental process are discussed.

Communication-Based Intervention for Problem Behavior: A User’s Guide for Producing Positive Change. Carr, E., Levin, L., McConnachie, G., Carlson, J., Kemp, D. & Smith, C. (1994). Baltimore, MD: Paul H. Brookes.  Available through Paul H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (800) 638-3775.

This book focuses on the purpose of problem behavior and teaching alternative communication methods to express needs and feelings.  Also discussed are conducting functional assessments, building rapport, and strategies for crisis management.

Communication Skills in Children with Down Syndrome. Kumin, L. (1994). Rockville, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

A book which focuses solely on speech and language development in children with Down syndrome.  Provides information on the development of communication skills and the ways in which physical and cognitive characteristics of children with Down syndrome contribute to communication difficulties. 

Coping in Young Children: Early Intervention Practices to Enhance Adaptive Behavior and Resilience. Zeitlin, S. & Williamson, G. (1994). Baltimore, MD: Paul H. Brookes. Available through Paul H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (800) 638-3775.

This comprehensive guide for early intervention professionals provides assessment techniques, intervention strategies and activities, and information about completing IFSP’s.  The book includes case examples, sample forms and practical guidelines that support child, family and staff coping. 

Down Syndrome: Birth to Adulthood. Rynders, J.E. & Horrobin, J.M. (1995). Denver, CO: Love Publishing Company. Available through Love Publishing Company, PO Box 22353, Denver, CO80222; (303) 221-7333.

A guide for new parents designed to provide information about Down syndrome and knowledge of how other parents of children with Down syndrome have coped with the experience.  Medical, social and educational issues are discussed.

Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals. Winders, P.C., (1997). Bethesda, MD: Woodbine House.  Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

Children with Down syndrome master basic gross motor skills (everything from rolling over to running) just as their peers do, but need help along the way.  This book features over 100 easy-to-follow activities that are developmentally appropriate for ages birth through six years.  Activities are prefaced by guidelines and tips for successful completion and accompanying photographs provide further clarification.

Improving the Communication of People with Down Syndrome. Miller, Jon F., Leddy, Mark, & Leavitt, Lewis A. (1999). Baltimore, MD: Paul H. Brooks Publishing Co. Available through Paul H. Brookes, PO Box 10624, Baltimore, MD 21285; (800) 638-3775.

This critical volume provides a framework for assessing and treating speech, language, and communication problems in children and adults with Down syndrome.  It offers detailed coverage of various issues, ranging from the biological basis of speech to assistive technology.

Infants, Toddlers and Pre-School Children Development Curriculum. Shalom, D.B. (2000). Plainview, NY: Association for Children with Down Syndrome, Inc. Available through the Association for Children with Down Syndrome, Inc., 4 Fern Place, Plainview, NY 11801; (516) 933-4700.

This comprehensive curriculum is designed to help parents track the development of their children from infancy to elementary school.  Easy to use, the book provides parents with various modules and techniques that are both flexible and structured.

Keys to Parenting a Child with Down Syndrome. Bill, M. (1993). New York: Baron’s Educational Series, Inc. Available through Barron’s Educational Series, Inc., 250 Wireless Boulevard, Hauppauge, NY 11788; (800) 645-3476.

This is a practical guide to raising a child with Down syndrome.  The book covers a range of key issues in depth and gives practical advice to parents.  Areas addressed include initial reactions to diagnosis, managing family dynamics, obtaining educational and medical services and planning for adulthood.

Life Beyond the Classroom: Transition Strategies for Young People with Disabilities. Wehman, P. (1996). Baltimore, MD: Paul H. Brookes Publishing Co. Available through Paul H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (410) 337-9580 or (800) 638-3775.

This book serves as a guide for professionals for the planning, designing and implementing of successful transition programs for students with disabilities.  Through theory and practical guidelines, this guide helps to ensure a clear path from school to employment.

Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents. Van Dyke, D.C., Mattheis, P., Eberly, S.S., & Williams, J. (Eds.) (1995). Bethesda, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

This is a comprehensive guide for parents which provides an overview of specific medical conditions that are more common among children with Down syndrome.  This book includes sections on preventive care, medical decision making, anesthesia and surgical concerns and planning for health care in adulthood.

A Parent’s Guide to Down Syndrome: Toward a Brighter Future. Pueschel, S.M. (2000). Baltimore, MD: Paul H. Brookes Publishing Co. Available through Paul H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (410) 337-9580 or (800) 638-3775.

This is a detailed guide for parents and professionals which discuses the nature of the physical, social, mental and emotional development of children with Down syndrome.  Emphasis is given to early intervention, with professionals from various disciplines contributing chapters.

Teaching the Infant with Down Syndrome: A Guide for Parents and Professionals. (2nd Edition). Hanson, M.J. (1987). Austin, TX: Pro Ed Publishers. Available through Pro Ed, 8700 Shoal Creek Blvd, Austin, TX 78757-6897; (512) 451-3246.

This is a manual which provides teaching ideas and activities to assist an infant’s development.  Additional chapters present information on the emotional reactions to the birth of a child with Down syndrome, medical concerns and parent-child interaction.

Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers. Oelwein, P. (1995). Bethesda, MD: Woodbine House. Available through Woodbine House, 510 Bells Mill Road, Bethesda, MD 20817; (800) 843-7323.

This is a comprehensive instruction manual to aid parents in teaching their child with Down syndrome to read.

Tears & Triumphs: A Look Into the World of Children with Down Syndrome or Other Developmental Delays. Dmitriev, V. (1997). Seattle, WA: Peanut Butter Publishing. Available through Penn Cove Press, (360) 678-3209.

This volume gives an excellent account of what can be done by a person dedicated to helping children develop, especially those with Down syndrome.  The case studies clearly show that behaviorally oriented early intervention in the hands of a dedicated person can encourage children with Down syndrome to develop beyond traditional expectations.


The Transition Handbook:
StrategiesHigh School Teachers Use that Work! Hughes, Carolyn, Ph.D. & Carter, Erik W., M.Ed. (1999). Baltimore, MD: Paul H. Brookes Publishing Co. Available through Paul H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (410) 337-9580 or (800) 638-3775.

This book is full of options for tailoring approaches to individual students’ needs and preferences, this work presents strategies that help develop supports in school, at work, and in the community.  Presented in an easy-to-use menu style format, this handbook lets readers turn to relevant strategies for their specific situation.  Perfect for parents and professionals. 

Understanding Down Syndrome: An Introduction for Parents. Cunningham, C. (1996). Cambridge, MA: Brookline Books. Available through Brookline Books, PO Box 1047, Cambridge, MA02238; (800) 666-2665.

This book is geared towards new parents.  The author provides a general overview of Down syndrome, including the physical and medical characteristics associated with the genetic condition, developmental stages, and some of the issues families with an individual with Down syndrome may face.

Personal Accounts of Down Syndrome

Cara: Growing with a Retarded Child. Jablow, M.M. (1983). Philadelphia, PA: TempleUniversity Press. Available through TempleUniversity Press, USB Room 305, Broad and Oxford Streets, Philadelphia, PA19122; (215) 204-8787.

The author tells of her experiences raising her daughter, Cara, who has Down syndrome.  She discusses such varied topics as early intervention, special education, emotional support, and family adjustments. The book deals specifically with early childhood. 

Count Us In: Growing Up with Down Syndrome. Kingsley, J. & Levitz, M. (1994). New York: Harcourt Brace & Company. Available through Harcourt Brace & Company, 6277 Sea Harbor Drive, Orlando, FL32887; (800) 543-1918.

Two young men with Down syndrome speak in their own words about their experiences growing up with Down syndrome.  Jason and Mitchell share their feelings and thoughts about friendship, school, hopes for the future and dealing with independence in adulthood.

Differences in Common: Straight Talk on Mental Retardation, Down Syndrome, and Life. Trainer, M. (1991). Rockville, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

A collection of essays by the mother of an adult son who has Down syndrome. The author talks about such topics as main streaming, terminology, parent groups, siblings’ coping strategies, self awareness, finding a job, advocacy and societal attitudes towards mental retardation.

Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic. Beck, Martha (1999). New York, NY: Berkley Books. Available through Berkley Publishing Group, 375 Hudson Street, NY 10014; (800) 788-6262.

John and Martha Beck had two Harvard degrees a piece when they conceived their second child.  Further graduate studies, budding careers, and a growing family meant major stress. When Martha learned her unborn son had Down syndrome, she battled nearly everyone over her decision to continue pregnancy.  She still cannot explain many of the things that happened to her while she was expecting Adam, but by the time he was born, Martha, as she puts it, “had to unlearn virtually everything Harvard taught [her] about what is precious and what is garbage.”

Life As We Know It: A Father, a Family, and an Exceptional Child. Berube M. (1996). New York, NY: Pantheon Books. Available through Random House, Inc., DistributionCenter, 400 Hahn Road, Westminister, MD21157; (800) 726-0600.

This book is a father’s compelling story of his attempt to make the world a better place for his son who has Down syndrome. The author tells of his son’s development during his first four years of life, and addresses a number of issues, including I.Q. testing, the politics of education, disability law, social services, health care and entitlements.  Mr. Berube frames these issues within the larger concepts of social justice, what it means to be human, and ultimately what kind of society we value and by what means we determine it.

Show Me No Mercy. Perske, R. (1984). Nashville, TN: Abingdon Press. Available through Cokesbury,

PO Box 801, Nashville, TN37202; (800) 672-1789.

The father of a young man with Down syndrome relates the inspirational experience of his attempt to be reunited with his son after a family tragedy separates them.

The World of Nigel Hunt. Hunt, N. (1967). New York: Garrett Publications.

This is the autobiography of a young English man with Down syndrome who began the book when he was 17. The book is a classic about Down syndrome.  It includes an introduction written by Mr. Hunt’s father and contains a section of photographs.

Books for Children 

ABC for You and Me. Girnis, Meg. (2000). New York: Albert Whitman & Co. Available at local bookstores and Barnes and Noble Online.

This charming alphabet book features full-color photographs of children with Down syndrome and their friends in activities that correspond to letters in the alphabet. One child wearing a bright yellow slicker holds an umbrella for the letterU. Another enjoys a pink ice cream cone for the letter I. The brightly colored and well-laid-out book delivers a message of inclusion without ever using the words “Down syndrome.”

Our Brother Has Down Syndrome: An Introduction for Children. Cairo, S. (1985). Ontario: Firefly Books, Ltd. Available through Firefly Books, 3680 Victoria Park Avenue, Willowdale M2H3K1, Ontario, Canada; (416) 499-8412).

This is a book of color photos and text to introduce and explain Down syndrome to young children, especially siblings. It is a personalized account of a young boy, Jai, as told by his two sisters.

Russ and the Apple Tree Surprise. Rickert, Janet Elizabeth. (Ed.) (1995). Rockville, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

This is the first book in a new series for young readers. Readers may not notice at first that Russ has Down syndrome. This fun, full-color book doesn’t focus on what Russ can’t do, instead it highlights the ways in which Russ is like other kids his age.

Russ and the Firehouse. Rickert, Janet Elizabeth. (Ed.) (1995). Rockville, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

In the second book of Russ’ adventures, we meet up with the young boy at the fire house, where he’s visiting his uncle.  As with the first book, “Russ and the Firehouse” emphasizes the child and not Down syndrome.

Russ and the Almost Perfect Day. Rickert, Janet Elizabeth. (Ed.) (2000). Rockville, MD: Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD20817; (800) 843-7323.

This is the third book in the series.  This book finds Russ having a really great day at school.  In fact, it’s an almost perfect day until Russ must make a difficult decision.

Special Kids Make Special Friends. Shalom, D.B. (1984). Plainview, NY: Association for Children with Down Syndrome, Inc. Available through the Association for Children with Down Syndrome, Inc., 4 Fern Place, Plainview, NY 11801; (516) 933-4700.

This book is designed to educate young children about Down syndrome. Children from a preschool run by the Association for Children with Down Syndrome are shown learning and playing.

The One and Only Special Me. Williams, R.L. & Jarrett, M. (1996). Cypress, CA: Creative Teaching Press. Available through Creative Teaching Press, Inc.,PO Box 6017, Cypress, CA90630; (800) 444-4287.

Through the use of colorful photographs of children from all different backgrounds, the author teaches young children about the uniqueness of every individual, and that people have similarities and differences. This book is appropriate for children in pre-kindergarten through the first grade.

We’ll Paint the Octopus Red. Stuve-Bodeen, S. & Devito, P. (1998). Woodbine House. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817; (800) 843-7323.

In this touching story, Emma helps her father as much as he helps her to realize that Isaac is the baby they dreamed of, Down syndrome and all.  The book concludes with a set of commonly asked questions about Down syndrome with answers for children and how it might affect their sibling and family.  The wonderful color illustrations help make We’ll Paint the Octopus Red a beautiful, reassuring book for siblings of children with Down syndrome that’s sure to become a family favorite.

Periodicals and Newsletters

Southern Tier Resource Guide. Free newsletter of the Down Syndrome Information Network of Southern Tier NY, PO Box 59 ~ Endicott NY 13760; (607) 206-8465.

Update. Free newsletter of the National Down Syndrome Society, 666 Broadway, New York, NY10012; (800) 221-4602 or (212) 460-9330.

Upbeat. Full-color magazine for and by teens and young adults with Down syndrome, edited by actor and NDSS National Goodwill Ambassador, Chris Burke. Published by the National Down Syndrome Society, 666 Broadway, New York, NY10012; (800) 221-4602 or (212) 460-9330.

American Journal on Mental Retardation. Journal for professionals, reporting on current research in the biological, behavioral and educational sciences.  Articles include various topics related to developmental disabilities, including prevention, health risks, aging, biomedics, behavior, clinical interventions, families and more. Published bi-monthly. Subscriptions available through AAMR, 444 North Capital Street, NW, Suite 846, Washington, DC20001-1512; (800) 424-3688.

Down Syndrome News. Newsletter available from the National Down Syndrome Congress, 1370 Center Drive, Suite 102, Atlanta, GA 30338; (800) 232-6372.

Down Syndrome Quarterly. Journal for professionals and parents, containing up-to-date information on medical, behavioral and social scientific research. Subscriptions available through Samuel T. Thios, Ph.D., Editor, Down Syndrome Quarterly, Denison University, Granville, OH, 43023; (740) 587-6338.

Exceptional Parent. Magazine for parents and professionals published eight times annually by the Psy-Ed Corporation. Subscription information available from Exceptional Parent, PO Box 3000, Dept. EP, Denville, NJ 07834; (877) 372-7368.

Mental Retardation. Journal for practitioners, containing information about program developments, public policies, teaching techniques and administrative tools. Published bi-monthly. Subscriptions available through AAMR, 444 North Capital Street, NW, Suite 846, Washington, DC20001-1512; (800) 424-3688.