Recommended Reading
Recommended Books for Parents/Guardians
The books listed here are recommendations from community members. It’s important to us to only recommend resources that we are personally familiar with and would encourage friends or family members to read.
Special Education: A Parent’s Guide for Children’s Success, by Michael Bailey
The complex web of laws, regulations, personalities and stresses, combined with anxiety over raising a child with a disability, have made special education advocacy an impenetrable maze to many parents. This book presents the complexities of the process in a simple-to-understand way and offers practical tips, checklists and strategies on how to make the system work to insure the educational success of all children.
Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals, by Patricia C. Winders
The updated and expanded 2nd edition continues to be a popular, practical guide to understanding fine motor skills in children with Down syndrome and helping them develop these skills from birth through early adolescence.
Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities, by Kathie Snow
In this user-friendly 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.
Teaching Reading to Children With Down Syndrome: A Guide for Parents and Teachers, by Patricia Logan Oelwein
Teach your child to read using the author’s nationally recognized, proven method. From introducing the alphabet to writing and spelling, the lessons are easy to follow.
The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles, by Joan Guthrie Medlen
This one-of-a-kind book is the first to provide information, strategies, and tools to promote healthy living for people with Down syndrome, their families, and those who support them. Using her knowledge and expertise as a registered dietitian and experiences as a mother of a son with Down syndrome, autism spectrum disorder, and celiac disease, Joan Guthrie Medlen has blended intricate science with practical use to create a book that is indispensable.
Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, by Terri Couwenhoven
Parents of children with Down syndrome and other intellectual disabilities are accustomed to paying close attention to their child’s physical, cognitive, and emotional development. This proactive approach should also include their child’s sexual development, which for many parents may not seem as obvious or urgent, especially to those with young children.
Recommended Books for Family, Friends, Siblings, etc
My Friend Isabelle, by Eliza Woloson and Bryan Gough
Isabelle and Charlie are friends. They both like to draw, dance, read, and play at the park. They both like to eat Cheerios. They both cry if their feelings are hurt. And, like most friends, they are also different from each other. Isabelle has Down syndrome. Charlie doesn’t. Written by Isabelle’s mother, this charming tale encourages readers to think about what makes a friendship special.
Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Brian Skotko and Susan P. Levine
Even the closest brothers and sisters don’t always get along or understand each other. Add a disability like Down syndrome to the mix, and that sibling relationship gets even more complicated, especially for teenagers. This is the first book written exclusively for teens with a brother or sister with Down syndrome.
The Sibling Slam Book: What It’s Really Like To Have A Brother Or Sister With Special Needs, by Don Meyer
A brutally hones look at the lives, experiences, and opinions of teenagers who have a sibling with special needs. Formatted like the slam books passed around in many schools, this one poses a series of 50 personal questions along the lines of: What should we know about you? What do you tell your friends about your sib’s disability?
Recommended Books on disability culture
Why I Burned My Book and Other Essays on Disability, by Paul K. Longmore
This wide-ranging book shows why Paul Longmore is one of the most respected figures in disability studies today. Understanding disability as a major variety of human experience, he urges us to establish it as a category of social, political, and historical analysis in much the same way that race, gender, and class already have been.
Too Late to Die Young: Nearly True Tales from a Life, by Harriet McBryde Johnson
Harriet McBryde Johnson’s witty and highly unconventional memoir opens with a lyrical meditation on death and ends with a bold and unsentimental sermon on pleasure. Born with a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance.
Accidents of Nature, by Harriet McBryde Johnson (Fiction)
Coming-of-age novel set in the seventies about what it’s like to live with a physical disability
Recommended eBooks
Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith
This book is specifically written for expectant mothers who are moving forward with a pregnancy after learning about a Down syndrome diagnosis. It is not appropriate for women who are still weighing options about the outcome of their pregnancy. This book is provided free of charge from DownSyndromePregnancy.org.
Your Loved One is Having a Baby with Down Syndrome (PDF)
This free PDF booklet is from DownSyndromePregnancy.org and focuses on family and friends who find out their loved one is expecting a baby with Down syndrome
Gifts
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.
Helpful websites
Down Syndrome Pregnancy Prenatal support
Baby Center’s Down Syndrome Pregnancy Message Board A community for prenatal support
David Pitonyak Behavioral specialist, Imagine consulting practice
Broadreach Training and Resources Norman Kunc and Emma Van der Klift
Inclusion Press Resource materials
Wrightslaw Reliable information about special education law, and advocacy for children with disabilities
Families of children with Down syndrome: What we know and what we need to know This paper provides a brief overview of what is currently known about families of children with Down syndrome.