More about Down Syndrome

After posting the previous entry, I wanted to find out more about Down Syndrome.

From the 2006 Position Statement of the Down Syndrome Association (Singapore):

Down syndrome is a genetic condition. All persons with Down syndrome share the common characteristic of having one extra chromosome no. 21. Down syndrome occurs universally across race and gender in approximately one in 800 births. Down syndrome is not a disease, disorder, defect or medical illness. Down syndrome itself neither requires treatment nor prevention. When referring to persons with Down syndrome, avoid statements that could scar the person. Persons with Down syndrome are not afflicted or suffer from it. If there is any suffering, it is the imposition of negative attitudes of the community.

From their About page, the DSA provides the following services and activities:

1. New Parent Support Programme
2. DSA Youth Wing
3. Resource Library
4. Quarterly Talks & Meetings
5. Recreational Activities
6. Programmes for Young Adults with Down Syndrome
7. Information Technology
8. The Down Syndrome Advisory Boards
9. Toy Library
10. DSA Education Department
11. Fundraising and Public Awareness

The DSA site has more webpage links to their DSA affiliates and other organizations that deal with issues on Down syndrome and Intellectual Disability.
[Information is correct as of time of posting. Visit the DSA website for updates]

I found the information at MayoClinic.com useful in understanding the context of this genetic disorder and the issues that arise from it — Children’s Health: Down Syndrome. The Introduction page is followed by sections like, Signs and symptoms, Causes, Risk factors, Screening & Diagnosis, Complications,
Treament, Prevention, Coping Skills. I thought this quote from the “Coping Skills” section was quite important:

Don’t believe the myths about Down syndrome. Many people believe that children with Down syndrome must be placed in segregated special education schools and that older adults with Down syndrome usually live in institutions. These myths simply aren’t true. Most people with Down syndrome live with their families, go to mainstream schools, read and write, and perform various jobs as adults. People with Down syndrome can live fulfilling independent or semi-independent lives.

This site — www.ds-health.com - is also worth exploring. The author of the site says he’s a pediatrician and the father of a son with Down Syndrome. Inspired to write essays about children with Down Syndrome for other parents, he’s put up the website to publish the articles. The site also features articles by guest contributors. Having read a few of the articles, I find them to be written in non-medical terms, covering topics that are medical-related (e.g. Why Down Syndrome occurs)to pragmatic ones (e.g. on Toilet-training; issues of sexuality.

Over at the Wikipedia entry, there’s a section on Notable individuals and Portrayal in fiction of people with Down Syndrome.

I’m interested to know what other libraries are doing specifically with people with Down Syndrome. If you’ve any leads, I’d appreciate it.

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