21 links for Down Syndrome Awareness Week 2012 (3)

Prof William Mobley, a leading neurophysiology researcher in the US, into how the brains of people with Down syndrome work, said at a research symposium in the UK in 2007, that the most important modern changes in the lives of people with Down syndrome have taken place, not in laboratories, educational facilities or services of all kinds (significant as all those efforts are), but in families - where they are loved, valued and taught in their daily lives that they matter, alongside their brothers, sisters, cousins and friends, that they too make a worthwhile difference. No-one disagreed. The most important. Families know this.

Today's three links range across families living their daily lives, meeting challenges head on, where supporting each other is ordinary, and finding joy wherever it comes, talking about how the bigger picture (like the National Disability Insurance Scheme, firmly on our national agenda) is important for families, and the evidence about what families that include a person with Down syndrome say about themselves. It was very hard to pick just three links today!

• Claire Mitchell and her family (from Queensland) speaking up for a National Disability Insurance Scheme ... we all need to acknowledge that Australia relies on the love, money, good will and dedication of families to support our inadequate disability system.  Every Australian Counts.

•  Freddie is an English teenager, who has Down syndrome.  He lives in the country with his family, including two brothers.  His mother, Annabel writes about his life at This Way Up, much of it ordinary, everyday life for a young teen - but she doesn't shy away from the difficulties that Freddie encounters with a significant hearing loss, and other challenges, including some ongoing health concerns. It isn't always easy, but it is always real.

• Boston paediatrician and writer (and brother of a sister with Down syndrome), Dr Brian Skotko published a significant series of reports on his research into the perceptions of people with Down syndrome, their parents and their brothers and sisters, about they saw their own lives, in 2011. The link to the press release will also lead you to the original research papers.

All 21 links for Down Syndrome Awareness Week 2012 posts