Health Resources

Books

  • Chicoine, Brian and Dennis McGuire, The Guide to Good Health for Teens and Adults with Down Syndrome (Woodbine House, 2010).  The authors draw on their many years of experience working with teens and adults with Down syndrome at the Adult Down Syndrome Center at Advocate Lutheran General Hospital for this comprehensive health guide.
  • Durand, V. Mark, Sleep Better: A Guide to Improving Sleep for Children with Special Needs, Revised Edition (Brookes Publishing, 2014).  A sleep guide for families with practical suggestions for addressing sleep challenges.
  • Marks, Beth, Jasmina Sisirak, and Tamar Heller, Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Program  (Brookes Publishing, 2010).  A research-based guide to improving health for people with developmental disabilities.
  • National Institutes of Health, The National Institutes on Health Research Plan on Down Syndrome (CreateSpace, 2014).  A summary of research coordinated by the National Institutes of Health related to Down syndrome.
  • U.S. Government, Down Syndrome Toolkit—Comprehensive Medical Encyclopedia with Treatment Options, Clinical Data, and Practical Information CD ROM (Progressive Management, 2009).  Compiles information about Down syndrome from the CDC, NIH, and other federal health agencies.

Health Guidelines

Online Resources

Puberty and Sexuality

  • Couwenhoven, Terri, Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities (Woodbine House, 2015).  Dos and Don’ts of dating for teenagers and adults with intellectual or developmental disabilities.
  • Couwenhoven, Terri, The Boy’s Guide to Growing Up: Choices & Changes During Puberty (Woodbine House, 2012).  A book about puberty for boys with intellectual disabilities age 9-16.
  • Couwenhoven, Terri, The Girl’s Guide to Growing Up: Choices & Changes in the Tween Years (Woodbine House, 2011).  Written for preteen and teenage girls with intellectual disabilities to help prepare them for changes in their bodies.
  • Couwenhoven, Terri, Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals (Woodbine House, 2007).  The author, a certified sexuality educator and mother of a child with Down syndrome, offers practical strategies for teaching children with Down syndrome about their bodies and their sexuality.
  • Walker-Hirsch, Leslie, editor, The Facts of Life . . . and More: Sexuality and Intimacy for People with Intellectual Disabilities (Brookes Publishing, 2007).  This book will help professionals and caregivers educate individuals with intellectual disabilities about their sexuality. Includes interviews with real-life couples.

Mental Health

  • McGuire, Dennis, and Brian Chicoine, Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges (Woodbine House, 2006).  The founding directors of the Adult Down Syndrome Center in Park Ridge, Illinois share their extensive experience treating adolescents and adults with Down syndrome. Also available in Spanish.
  • Read, Sue, Supporting People with Intellectual Disabilities Experiencing Loss and Bereavement: Theory and Compassionate Practice (Jessica Kingsley, 2014).  A collection of academic and personal perspectives on how to help individuals with intellectual disabilities cope with various kinds of loss.

Health Issues

Alzheimer’s Resources

Celiac Disease

Sleep Apnea

Organizations:

Research:

  • Trois, Maria, George Capone, Janita Lutz, Maria Melendres, Alan Schwartz, Nancy Collop, Carole Marcus, “Obstructive Sleep Apnea in Adults with Down Syndrome,” Journal of Clinical Sleep Medicine (Vol. 5, No. 4, 2009: 317-323).
  • Study on Down Syndrome and Sleep, The University of Edinburgh Sleep Research Unit

Additional Resources/Information:

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