Down syndrome Outreach (DsO) is a volunteer committee and a program of The Arc of Whatcom County.
The mission of Down syndrome Outreach is to advocate for the rights, promote the potential and abilities, and create a supportive and inclusive community for people with Down syndrome. Learn more about DsO by clicking here.
Additional local, state and national resources:
- Statewide and Regional Support Networks
- National Down Syndrome Society (NDSS): www.ndss.org or 800-221-4602
- National Down Syndrome Congress (NDSC): www.ndsccenter.org or 800-232-6372
- Down syndrome Community – Puget Sound Region: www.downsyndromecommunity.org
- Lower Mainland Down syndrome Society in Surrey, B.C.: www.lmdss.com
- Down syndrome Research Foundation in Burnaby, B.C.: www.dsrf.org
- Canadian Down Syndrome Society: www.cdss.ca
Health Care Information for Families of Children with Down Syndrome; American Academy of Pediatrics: www.healthychildren.org
A person with Down syndrome needs regular doctor visits and a few special tests. The medical issues for someone with Down syndrome change with age. For this reason, this document is divided into several age groups. Each age group includes a list of issues that may be important at that age.
Your doctor can check the full AAP guideline for more details (the web address is given below).
The information within each age group is sorted by the parts of the body that are affected (heart, ears, etc). Many tests only need to be done once. Some areas might need to be looked at again, or even many times, as the child grows to an adult. This document focuses on medical topics that affect physical health. Other issues can affect social and school success, which may not need doctors or other medical resources but are still important issues for those with Down syndrome. Respect for and attention to their abilities are often important missing pieces and may be enough to make a big difference in performance and behavior.
This information is based on the “Health Supervision for Children with Down Syndrome” clinical report from the American Academy of Pediatrics, available here: http://pediatrics.aappublications.org/content/128/2/393.full
Behavior and Down syndrome
Dr. David Stein has a new book Supporting Positive Behavior in Children and Teens with Down syndrome, which can be purchased at http://woodbinehouse.com
We also have copies of this book in our lending library….as well as other titles about behavior and Down syndrome.
In January 2016, the Parent Coalition Workshop was on Dr. Stein’s presentation from the 2015 Duncan Seminar on Behavior and Down syndrome. Dr. Stein’s presentation can be found here (available until 3/26/18): http://www.seattlechildrens.org/For-Healthcare-Professionals/Provider-and-Nursing-Grand-Rounds-Online-Videos/2015/Duncan-Seminar–Behavior-and-Down-Syndrome–A-Neurodevelopmental-Perspective/
You can watch his presentation, and use this Behavior Worksheet – Dr. Stein’s presentation Behavior: a Neurodevelopmental Perspective to take notes on this presentation.
Also by Dr. Stein, Behavior and Down syndrome: A Practical Guide for Parents.Behavior-Guide-for-Down-Syndrome
Visual Resources are helpful for people with Down syndrome
Resources for Visual Aids:
Western Washington University’s Ershig Assistive Technology Resource Center has make and take resources!
The Ershig Assistive Technology Resource Center (E-ATRC) is a ‘hands-on’ lending library and demonstration center, located in Woodring College of Education (WCE) on the campus of Western Washington University (WWU), that houses hundreds of support technology tools.
The Center’s purpose is to increase awareness and use of assistive technologies in order to improve participation in life, and increase access to learning for a wide range of individuals with diverse needs.
Do 2 Learn
http://www.do2learn.com/ for visual picture cards and other amazing tools to help at home.
“Do2learn provides thousands of free pages with social skills and behavioral regulation activities and guidance, learning songs and games, communication cards, academic material, and transition guides for employment and life skills.”
NDSS created this resource for families, professionals, direct caregivers or anyone concerned with the general welfare of an adult with Down syndrome.
This guidebook includes a general overview of aging with Down syndrome, common medical conditions, emotional and psychiatric well-being, planning for old age, and discusses the connection between Alzheimer’s Disease and Down syndrome.