Monday, 28 April 2008

Information in Vietnamese, Arabic and Chinese

Most of us who have sons and daughters diagnosed with Down syndrome have felt overwhelmed at times, especially in the early days, by what that very big label means for our little baby, and for our family, and we have sometimes struggled with finding the information we want. How much harder would that be if you had to do it in a second language, or had no access to any information in a language you could understand? And possibly with little family support if they are living on the other side of the world, or isolated by cultural values or differences?

New South Wales is a culturally diverse community, home to families from many different language and cultural backgrounds. Those families have babies and some of those babies will be born with Down syndrome.

Down Syndrome NSW is working with diverse communities to locate and produce information resources to help provide the information that is available to English speakers to other groups. It is time-consuming and exacting work, as literal translations of English material is not always appropriate, and there is little or none available elsewhere in some languages - but we are working with some wonderful groups, to good effect. We are currently concentrating on Vietnamese, Arabic and Chinese because they are the most frequently needed languages. We have sent the Vietnamese resources to fasmilies around the world -including one package to the family of a baby born to Vietnamese parents in Norway, via a contact in England.

You will find more about what we have achieved so far, and links to the information resources here.
The most recent addition is an Arabic translation of Our son has Down syndrome - an article written by the Australian mother of a young man, as he is about to move from school into the next phase of growing up. The English original is here for the English original.

This week we are holding a seminar on health concerns for children with Down syndrome with a group of Arabic-speaking families, working with an English-speaking presenter and an Arabic interpreter. More than 20 families have signed up so far. We have a long way to go, and a lot to learn, but we know from our work with the Vietnamese parents support group that it is worth doing, and worth working directly with the families.

Friday, 25 April 2008

Three great smiles

We don't subscribe to the stereotype of people who have Down syndrome as "always happy and loving" - it denies that they can and will experience the full range of human emotional experience. Just try saying it to the parents of a toddler throwing a whopping tantrum or of a teenager who can slam doors with the best of them, or an adult bereft at the end of a relationship. And it doesn't sit well with that other old chestnut about "the stubborn streak" (we'll deal with that another time)!

But there's nothing like a fabulous smile, or an uncontrollable giggle to lift your day - and these are three of the best we've seen lately:

We hope they make you smile too. Wouldn't you love to know what prompted them?

Thursday, 24 April 2008

Online Book Club - and other book news

Are you a reader?

Dave Hingsburger, over on Chewing the Fat is starting an online book club Have a look at his blog entry for 21st April to see how it will work .

The first book chosen is Mary Doria Russell's A Thread of Grace, which Dave's blog can tell you more about, and why it might be of interest to us. It is available in bookshops in Sydney such as Dymocks, Angus and Robertsons and Borders, although two of our frequent library users report that it is not in their large local libraries.

We have also received this week two copies of Jennifer Graf Groneberg's new book Roadmap to Holland - see Jennifer's blog Pinwheels.

A local new release is Ari Galper's book, Lessons from Toby - 52 Life Lessons. You can read more about it and order it from Ari's website.

DS NSW members can request a loan of either of these last two by emailing

Annotated lists of our complete library collection of 1800 items can be viewed here.

Monday, 14 April 2008

T 4321 at All Hallows Five Dock

March just wasn't long enough to accommodate all of the T4321 events that people wanted to hold to celebrate World Down Syndrome Day/Month 2008 (more than 50 were registered), so we spilled over into April as well ......

All Hallows Church at Five Dock hosted morning tea on Sunday 6th April in the church hall, where everyone looked right at home.

You can slo view these photos and those from other events through our Galleries page

Sunday, 13 April 2008

The dreaded haircut - could this be your family?

Lynn Johnston's gentle comic strip of everyday family life with the Pattersons, For Better or For Worse (R), takes a wry look at episodes of family life that will often hit right home for parents of children with disabilities, like this one from last Sunday (6th April). Could this have been your family at some time - or right now?

In October 2004, Lynn Johnston introduced a new character, Shannon Lake, a teenage girl with an intellectual disability into her cast. Shannon was developed with the help of her niece, Stephanie who has special needs. Together they are a powerful advocacy team in their own community and to the wider world. Spend some time looking through Shannon's own website for a wealth of material, and for the strips in which Shannon has featured.

These two strips from 2004 introduced Shannon in 2004
There's some real food for thought in these comic strips, and the background material that could make very effective teaching and learning resources and ideas, about developing a sense of self, self esteem, and dealing with teasing and bullying. And perhaps all the better for not being in a textbook!

Saturday, 12 April 2008

Special Commission of Inquiry into Child Protection in NSW - hearing on disability

The Special Commission of Inquiry into Child Protection in NSW, being conducted by Justice James Wood, heard submissions on children with disabilities yesterday, Friday 11th April 2008.

Families of children needing extremely high levels of support, because of complex and multiple disabilities spoke about the drastic actions they have been forced to take when the disability service "system" has been unable to support them to raise the child at home.

Most families with sons and daughters who have Down syndrome do find the supports and services they need, and are able to develop skills and resilience sufficient to meet the child's needs relatively comfortably within their own families. But some children and adults with Down syndrome do have more complex needs, and can have multiple disabilities and/or health complications that push their families' limits of endurance beyond reason, similarly to those families' whose stories have been told in the Inquiry.

The NSW Department of Ageing, Disability and Home Care policy is that all children under 12 should be raised in a family setting, but it apparently still has no workable solution in place for situations when that is not possible. One family's story has been highlighted in the media, and was accepted by the Inquiry as a case study.

A parent-observer at the inquiry on Friday reports that " ....senior DADHC officers said there were a number of models of accommodation and yet could not name any other than saying every effort was made for children under 12 for the child to remain in the family home with in-home support. When pressed by the Commissioner and his assistant as to what was the alternative if it was impossible or inappropriate for the child with disability to remain in the family home, or with a foster family, the DADHC officers really had no satisfactory answer"

Media reports on the Inquiry's disability hearings:

How policy forced a family to desert their child (SMH 10/11/08)

Disabled Kids not getting proper care (SMH 11/04/08)

Lack of services for disabled children tearing families apart (SMH 11/04/08)

Parents 'forced to abandon disabled children' (ABC News, 11/04/08)

Two heart-felt letters to the editor of the Sydney Morning Herald, from family members responding to the reports are published under the heading The ability to care depends on support, in today's edition.

A transcript of the hearings on disability (11/4/08) will be available on the website of the
Commission of Inquiry's website by Monday 14/04/2008 or Tuesday 15/4/08
The Department of Community Services submission on Health and Disability is linked under 10/04/2008, the NSW Ombudsman Report 2004 - DADHC - The need to improve services for Children, Young People and their Families (which is critical of DADHC's inability to deliver the services its policy requires) is posted under 7th April 2008 on the same page.

Thursday, 10 April 2008

Melissa Riggio 1988 - 2008

Patricia Bauer has posted a moving tribute on the life of Melissa Riggio, 20 who sadly died earlier this week, after being ill with leukaemia. Melissa was a remarkable young woman in her own right, and had a major impact on the publishing industry in the USA. Her father, Steve Riggio is the CEO of Barnes and Noble,(a major US book seller) and after Melissa's birth he worked to include many more titles on disability in his stores, with a flow-on to the wider market. Read Patricia's tribute here.

Melissa's story has also been told by National Geographic Kids, and through her own web page, Melissa

Like many around the world, our thoughts are with her family.

Monday, 7 April 2008

Visual Arts - people with Down syndrome as subject and artist

People with Down syndrome have been participating in art since people began making art. Two young children with Down syndrome are currently the subject of very different pieces on exhibition in Sydney:

Local Eyes is an exhibition of photographs with a difference, created by United Way Sydney. "It's a chance for ... budding photographers to present their unique perspective of Sydney, and for United way supporters to better understandhow others who face significant challenges see their world." Click on "View and Vote" to see thumbnails of all of the photos - at the lower right is Persia Burrows' photo of herself and her brother Tyler, who has Down syndrome. Click on the thumbnail for a enlargement, and the story of how the photo came about. You can vote for it too.

Daniela Mousa's Year 12 artwork confronting attitudes to people with disability will be on exhibition from 4 - 24 April in the Art Expressed show at Ku-ring-gai Arts Centre in Sydney's north. She has incorporated images of Angela, who has Down syndrome into an installation questioning judgements and behaviour. Click here for an article and photograph from the Northside Courier.

Some other interesting visual arts links:

Dragon, DGC, Studio ARTES 2006

Sunday, 6 April 2008

Picnicking at Coffs Harbour

Our Coffs Harbour families rarely miss an opportunity to get together and share in whatever events or celebrations are planned. World Down Syndrome Day/Month 2008 was no exception.

Sunday 30th March was a beautiful early autumn day, and the family picnic was an overwhelming success with about 70 people, including families and grandparents from as far away as Brunswick Heads, Alstonville, Port Macquarie and Armidale.

From discussions during the day, parents of primary school aged children decided to organise a friendship club, with the children meeting on a monthly basis. - a good outcome from a good day.

Saturday, 5 April 2008

Wollongong rocks for Down syndrome: Illawarra Black Tie Ball

We are still catching up with all of the wonderful events celebrating World Down Syndrome Day/Month. Tracy Barker again galvanised the Illawarra community for an elegant night of fun and fine dining on 28th March. highlighted by the ability of the young people with Down syndrome to absolutely milk the moment for every drop of enjoyment, and take the rest of along for the ride. We did hear that the microphone got quite a workout when they were invited to say a few words if they would like to - it wasn't necessary to ask twice!

Tracy's energy, caring for her family including two beautiful and lively little girls, working, and taking on the organisation of a number of events each year (a T4321 morning tea, the Black Tie Dinner and the Illawarra Buddy Walk fior a start!) is phenomenal, and very much appreciated. Final fundraising figures are not yet in, but around $10,000 is expected from the dinner - again, very much appreciated.

As always, the less tangible outcomes of the night will be absolutely priceless!

Thank you Tracy, your family and friends, and to everyone who supported the event and took part.
For more photos, click here for the gallery .

Thursday, 3 April 2008

On a Wing and a Prayer - what a night !!

On a Wing and a Prayer was a major fundraising event held last night in Sydney, that was much more than that. Attended by over 600, it achieved its fundraising goals, for which we are more grateful than words can say, but the insight it gave those attending who previously knew little about Down syndrome, or had never actually met anyone with Down syndrome was priceless! An impressive line-up of sporting, media and other celebrities brought together by our patron Craig Wing, entertained the crowd, while members and staff told them about their families and our work.

Some were moved to tears as a young mother talked about her little one with Down syndrome and how she's influenced her family; shared her pride as Ruth Cromer spoke about living with Down syndrome, the challenges she has faced, and how she's been supported; and generally were amazed at the ability of people with Down syndrome of all ages to have fun!

The audience was asked to buy items at auction, raffle tickets, and to simply donate to help fund our efforts in supporting families across NSW - and they did, very generously. A very special event.
You'll recognise many of the faces in these first photos if you are in Australia, and these in the first of several photo galleries to come as we gather them in.

Our thanks to everyone involved - more details will be posted to our website, along with more photos.
Additional photos and a nice report are also on South Sydney Rabbitoh's Club News
Quote of the night: “My sister Kirsty is here tonight and she has Down syndrome. She is a massive Rabbitohs fan but she is disappointed that we wear red and green, and not pink and sparkly!" Craig Wing. We so get that!

Tuesday, 1 April 2008

A little help from friends ....

South Sydney 1st grade NRL stars Ben Rogers , Shannon Heggarty, Michael Greenfield and Issac Luke helped out teammate Craig Wing in his mission to raise funds and awareness for Down Syndrome NSW. Craig was due to appear at a Market Day Fundraiser at Wattle Grove Community Centre on Sunday 16th March, before a major injury in the first round game on 15th ruled him out of the event. He asked for help, and he got it - immediately. The day was a huge success, and Melissa Cotterill, who organised the day, was thrilled.

At the event, the four boys were greeted with huge cheers from the 300 plus crowd and spent the afternoon signing autographs, taking pictures, passing the footy around. Read a full account of these fine young men's commitment to their teammate and to the community here, on the Rugby League One Community website.

Network Ten took some footage for a news report later in the week to mark World Down Syndrome Day, highlighting the joys and challenges of life with Down syndrome in 2008.

Congratulations Melissa, and all of your team!