21 links for Down Syndrome Awareness Week 2012 (7)

Our final three links in our Down Syndrome Awareness Week 2012 series give us a glimpse into the lives of three young New South Wales men who have worked to find and develop their own interests, who are persistent, who have been motivated and supported to put in time and effort to achieve their own goals. Congratulations to each of you.

• Jack's six pack: Discover the secret to getting fit, dealing with bullies and attracting the ladies. This two minute gem contains the philosophy of sport - and life - according to one charismatic, funny and wise young athlete, Jack Carroll. Made by Jamie Ryan and Mike Hocking, this film is part of the ABC Open 110% project, where community contributors make films about people who are nuts about sport.

• Joe lives in Central Western NSW - a long, long way from the coast. Many local families take their leisure in waterskiing on the dam. In 2009, Joe's dad told us about beginning to teach Joe to waterski (at age 9). Fast forward three years to 2012,  and look at Joe now!

• Gymnast Joshua Gray is the subject of Hannah Bent's short film, Have you heard of Joshua Gray?, a winning entrant in the recent Focus on Ability short film competition, run by Nova. Josh trains and competes with Special Olympics, and won  many medals at the World Special Olympics Games in Greece last year. Watch the film to see where he is headed this year.

  All 21 links for Down Syndrome Awareness Week 2012 posts

21 links for Down Syndrome Awareness Week 2012 (6)

People with Down syndrome use all the means of expressing themselves that we all do, and with appropriate support, will choose the ones that suit them best. They might have a lot to say. For many, verbal communication presents a range of challenges ... here are just three of many examples of people with Down syndrome who have been supported to express themselves through various art forms.

• An innovative Hawai'ian photography project, Shine, has produced an outstanding online photography gallery, where people with Down syndrome are the photographers, and both they and their chosen subjects reveal something of their relationship. 

• Ricardo Coloma played 12 string guitar at the Annual Conference of the Massachusetts Down Syndrome Congress, with his father and teacher, Cesar Coloma in March 2012.

• Beyond Technique: Inclusive Dance Master Class  In  2010, Accessible Arts NSW hosted a series of inclusive dance master classes at Carriageworks, Sydney, with Philip Channells, artistic director of Adelaide's multi award winning Restless Dance Theatre. Thirty-five people - dancers, performers and educators with and without disability - contributed to the broad range of experience in the class, culminating in an evening performance of the devised works. Several dancers with Down syndrome took part. Accessible Arts is currently hosting another series of dance master classes and performances.

All 21 links for Down Syndrome Awareness Week 2012 posts

21 links for Down Syndrome Awareness Week 2012 (5)

We all know that the internet has revolutionised the way we find and use information, and just how much information is available.  That is as true for the worldwide Down syndrome 'community' as for anyone else.  There are many, many sources of  the highest quality information freely available to us, from all over the world - this community is, for the most part, highly co-operative and collaborative, generous with its knowledge and experience.

Today's three links are just a demonstration, by no means the only ones, of the excellence we can tap into:

• With universal availability of non-invasive prenatal diagnostic testing for Down syndrome on the near horizon, the imperative for  providing good quality information for prospective parents has never been been greater.  This page from the Down Syndrome NSW website provides a range of  international information sources addressing the various issues arising from prenatal diagnosis.

• Knowledge about how people with Down syndrome might learn at all ages, across all the 'domains' of learning continues to develop apace. Some things thought to be impossible a generation ago is now commonplace, while other cognitive processes remain more of a mystery.  There is so much more to learn. Down Syndrome Education International has a long and well established record of research and teaching, passing on its findings to professionals and families through publications, conferences and now online sources.  It is often our first port of call in answering complex questions, and keeping up-to date.

• The Adult Down Syndrome Center is located in suburban Chicago. The health clinic started operating more than twenty years ago, two days a week.  Its reputation as a specialist health care service for people with Down syndrome has grown internationally, under the co-directorship of physician Dr Brian Chicoine and psychologist Dr Dennis McGuire.  The clinic has seen more than 5,000 patients, and that experience has been shared through the publication of many papers, presentations at meetings worldwide, two seminal book (Mental Wellness in Adults with Down Syndrome (2006) and The Guide to Good Health for Teens and Adults with Down Syndrome (2010), a popular Facebook page, and from earlier this year, the Adult Down Syndrome Clinic blog to provide a more permanent, searchable record of the clinic's observations, experience and health care practice that is a wealth of information for families and for other professionals.

All 21 links for Down Syndrome Awareness Week 2012 posts

21 links for Down Syndrome Awareness Week 2012 (4)

The Down Syndrome NSW members' library is one of our great assets - a wealth of information, experience, advice and entertainment.  The collection is around 2000 books, DVDs and journals, a treasure trove developed over more than 30 years (the first few years were a bit lean!).

With so much very valuable and highly accessible information literally available at our fingertips, are books still relevant? They certainly are, and we are seeing the emergence of both new and established titles as e-books able to be read on a number of devices, providing ever greater access and choice.

Again, it difficult to choose just three books from the very broad canon currently available, but these represent new ways of talking to and about people with Down syndrome ... and two of them have a distinctly Australian voice.

• Greater Expectations: living with Down syndrome in the 21st century, by Jan Gothard (Freemantle Press, 2011) is a rich narrative of the lives of families, with a particularly Australian flavour, told with the sensitivity of an oral historian who is also a parent, and includes the voices of people with Down syndrome themselves. Our review was published in Voice, March 2011 to coincide with it's publication.

• Anne Kelleher recognised that there are very few books written both about and adults with Down syndrome who we know are interested in adult stories, but whose reading skills might limit their access to other adult fiction.  She has embarked on a planned series of five stories about a cast of characters inspired by her brother David.  The two published so far, in print and for Kindle, are How David Met Sarah and When David was Surprised.  Anne's blog gives links for purchasing, and to reviews.

• Peter Rix's novel Water under Water  (Random House Australia, 2011) grew put of his experience as the father of a young woman with Down syndrome, and the opportunity that he had as a writer to give people with intellectual disabilities a voice in fiction. It has enjoyed wide publicity in the general media, including a long, well illustrated interview in the Australian Women's Weekly in June 2011 (available in full via the AWW iPad app). Fiona Place reviewed Water under Water for Voice in the September 2011 issue.

All 21 links for Down Syndrome Awareness Week 2012 posts

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

21 links for Down Syndrome Awareness Week 2012 (2)

Most people with Down syndrome will enjoy good health, as long as they have access to a good standard of living and experienced, knowledgeable health care.  A number of health conditions do occur more often amongst people with Down syndrome (although some will have none  of them), and many of them are preventable and/or manageable. Some rarer health conditions are also rare amongst people with Down syndrome, but still occur more commonly than in the wider population. For a few people, their health needs are complex and require more vigilance.

Today's three links focus on health conditions - two rare but significant disorders that can cause great concern, and health care guidelines that can help promote high quality health care at all ages.

• Infantile spasms (West syndrome) occur in a small percentage of children with Down syndrome and can profoundly affect development until successfully treated. Noah's Mom is a peadiatrician and the mother of a child born with Down syndrome. She enjoys helping people to understand Down syndrome in a clear and easy way, and sharing what she has learned along the way. This blog post is a detailed useful post on infantile spasms. A further resource will become available when the scheduled Boston Children's Hospital presentation on infantile spasms is posted online after the December event. Information is also available from Epilespy Action Australia, and of course from your own paediatric neurologist.

• Dr Brian Chicoine, Co-director of the Adult Down Syndrome Center's medical clinic in suburban Chicago discusses a rare, but worrying and puzzling problem identified in a few young people with Down syndrome, the current state of knowledge, and a research project might shed more light on it, in this recent post: Decline in a young person and/or Hashimoto's Encephalopathy.

• Health care guidelines specifically designed to address the potential needs of people with Down syndrome can be very valuable to your general practitioner and for families to keep on hand to share as needed.  Needs are likely to change over time, so guidelines commonly address different age groups, so we think it is reasonable to actually provide two links here:  this article by Dr Jane Tracy and Rachel Carling-Jennings, published in our journal Voice earlier in 2012 considers health matters to consider for adults with Down syndrome, while these guidelines updated by the American Academy of Pediatrics in 2011 make recommendations for children's health care.  The AAP guidelines are summarised here.

All 21 links for Down Syndrome Awareness Week 2012 posts

21 links for Down Syndrome Awareness Week 2012 (1)

It is Down Syndrome Awareness Week here in Australia 14th - 21st October 2012.  We kicked off in NSW with the first of our Buddy Walk events in Sydney yesterday, and  Buddy Walks in Wagga Wagga, the Illawarra and Newcastle will be held next Sunday, 21st October.

Here on Keeping Up with Down Syndrome we plan one DS Awareness Week post each day, each focussing on 3 links of interest to people with Down syndrome and those who care from them, so that we accumulate 21 'Awareness Week' links.

Here is our first set of three links:

• We've been saving the link to Perfect  to lead off.  It is a candid family story about coming to terms with raising a child with Down syndrome ... there was a time when Heath White chased perfection. E:60's Tom Rinaldi tells the story of a how the birth of a girl with Down syndrome led to the re-birth of a man who thought he had everything, until he discovered the joy of pushing Paisley.

• Angela Lombardo, Coordinator of the Down Syndrome Program at Boston Children's Hospital, is posting a thoughtful and thought-provoking message each day throughout October (which is claimed as Down Syndrome Awareness Month in the US) - you will find them here, headed Post # (1 - 31) for National Down Syndrome Awareness Month, accompanied by a series of photos. And of course you can share them as you wish.
• One of our all-time favourite 'classics' in the Down syndrome canon is Dennis McGuire's much loved If people with Down syndrome ruled the world, originally delivered as an address to the Annual Convention of the (US) National Down Syndrome Congress in 2005 ... it deserves a place in every year's celebration.

All 21 links for Down Syndrome Awareness Week 2012 posts

If you would care to share a favourite photo of the person with Down syndrome that you love and care for in these posts, you are very welcome to email it to us at blogeditor@dsansw.org.au