Address details


Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Friday, 26 October 2012

'My Say' survey: for parents of 2 - 10 yr olds with a disability

A collaboration between researchers at the University of Sydney, Monash University and the University of Queensland.
My Say survey for parents of children with a disability aged 2 - 10 years, and professionals who work with them

This is your chance to tell us about your experiences as a parent or caregiver of a child with a disability. We want to know how your child's disability impacts on your family, and you personally. Do you receive enough support to deal with challenging behaviour? What sort of extra help do you think you need?
Your participation in this survey will help to improve parenting services across Queensland, New South Wales and Victoria.
Full details of who can participate, how you can contribute, the purpose of the survey and contacts for the researchers are available at the My Say website. The survey can be completed online.

Thursday, 25 October 2012

Coffee morning, Alstonville - next Wednesday

A Coffee Morning for parents of children with Down syndrome living on the Far North Coast will be held at

Summerland Farm

Wardell Rd, Alstonville
(In playground area)


Wednesday 31st October 2012
10.30am onwards


For more information please contact Kerry on 0409 836 509 or Trish on 0411 693 127

Buddy Walk 2012 Illawarra - first photos

Illawarra Buddy Walk 2012 (Sunday 21st October) was officially opened with a ribbon cutting ceremony, and then the fun began! Superheroes, fun and games, face painting, picnicking ... there must have been a walk in there too.

Congratulations to Karyn Ellem and her team, for organising such a fun and successful day.

Brenton Ashford-Potter cut the ribbon with Beau Ellem's help

Beau riding high with Captain America




Beau and Karyn Ellem both got a lift



Wednesday, 24 October 2012

Scrapheap Adventure Ride 2013

Way back in April, we asked if anyone was ready to start thinking about Scrapheap Adventure Ride 2013 ... well now we know where it's headed. More soon.

Look who came to Buddy Walk in Wagga Wagga!

You might have noticed a visitor or two in the first post of photos from Sunday's Wagga Wagga Buddy Walk. Cody Manning's Dad, Kevin has contacts ... and they came along to join in the fun.  They were very popular, and the source of much fascination.








Learn more about sleep disorders in children with special needs: Waverley

  
 


  • This event is particularly relevant for parents of children with Down syndrome, who experience sleep disorders at a significantly higher rate than other children - it is an opportunity to hear from one of our leading experts in the field.
  • Ph D candidate,  Shervin Churchill's online survey about sleep in children with Down syndrome is still open for responses.  

Tuesday, 23 October 2012

Don't DIS myAbilty ambassadors

Brenton Ashford-Potter
Digby Webster
Daniel Harrowell

Congratulations to Brenton Ashford-Potter, from Woonona (in Wollongong); Digby Webster, from Annandale (in Sydney) and Daniel Harrowell from Newport (Northern Beaches) have been named amongst the 2012 Don't DID myAbility ambassadors announced today. You can read more about them and all of the ambassadors here.


The 2012 issue of Made You Look, the official magazine of the Don't DIS myAbility campaign is now available in print, or to download as a .pdf, here. Among this year's excellent articles on a range of topics relevant for people with disability is one about how Ivana Skvorc's job at a cinema is 'just the ticket', and our friends at Bus Stop films write about the importance of inclusive film-making.

International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don’t DIS my ABILITY campaign. The campaign celebrates the diversity and ability of people with a disability. It is about promoting positive perceptions and building an environment that encourages active participation in careers, leisure pursuits as well as social activities.
International Day of People with Disability (IDPWD) is designated by the United Nations as a time to celebrate and recognise the achievements, contributions and abilities of people with disability and is celebrated on 3 December each year.

Buddy Walk 2012 Wagga Wagga: first photos

Cathy Manning and her team organised a very successful Buddy Walk 2012 in Wagga Wagga on Sunday, through the beautiful Botanic Gardens to the Wagga Wagga Music Bowl.  You will see from Narelle's Bugg's photos (over a few posts - there are too many good ones to skimp) how much fun was had, how much support was offered, and how much you will want to be there next year. 

Cathy would like to thank:

Jo and Mark Wade from Rock Solid Gear  
Brian and Karen Reid from Riverina Alarm Systems
Geoff Crouch from Ron Crouch Transport
Vicky and Greg Tooze from Turvey Tops Butchers


Kat Fisher DancersThe entire Stenhouse family from Lake CargellicoSam Way and familyApex Club501st Legion (Star Wars)Rural Fire ServiceScribbles Cafe... and all our amazing volunteers









Second Skin


We just gave a link to a video from Phillip Channells work in Dance Master Classes, as part of our '21 links' series, and here is an invitation to the new series Finale, in just a couple of weeks:

Catalyst Dance Masterclass Series Finale

6.30 pm Monday 5 November 2012 

Bay 17 @ Carriageworks
245 Wilson Street, Eveleigh (Redfern)

Free, but please RSVP by Friday 26 October
Sarah-Vyne Vassallo, Arts Development Officer, Accessible Arts
T 02 9251 6499 ext.110
E svassallo@aarts.net.au


Monday, 22 October 2012

For parents who aren't ready to celebrate Down syndrome this October ...

In the midst of important and high profile events held throughout celebratory days, weeks and months that are designed to raise awareness about people with Down syndrome and their place in our lives, families and communities, such as last week's Down Syndrome Awareness week here in Australia, some families can be feeling some ambivalence about the 'celebration'.

Gillian Marchenko has just the right words, For parents who aren't ready to celebrate Down syndrome. 

Buddy Walk 2012 Hunter - first photos

An excellent collection of photos from yesterday's Buddy Walk 2012 Hunter are featured on the Newcastle Herald's website this morning - it looks like lots of fun!

You will find more photos on the Facebook page for the event, posted by walkers from yesterday evening.  Thanks for sharing!

If you have photos you'd like to share here on the blog, please send them to us at blogeditor@dsansw.org.au 

Thank you to all our Hunter region supporters!

Mix it up! exhibtion

Sunday, 21 October 2012

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.

Saturday, 20 October 2012

Weekend reading 20th - 21st October

Top attitude and ethic, Wingham Chronicle,9th October 2012 - we've heard a lot about identical twins Beau and Adam Polley as they have grown up on the NSW mid-North Coast.  The latest story in the local press is about Adam being named the Manning Valley’s Employee of the Year with a Disability.


Getting to Community: Supporting People with Developmental Disabilities in their Pursuit of the Good Life, Susan Stanfield, Spectrum Press, 2012 - extract from a new book to be published this week, and a link to another extract.

The latest issue (October 2012, Volume 35, #6) of Down Syndrome News is available on the (US) National Down Syndrome Center's website. This issue features Michael’s Story: A Brother’s Remembrance, which will make you smile and be glad that in 1946, Michael’s family had the good sense to bring their baby son home from the hospital and care for him just as they did their two older boys. Self advocates Meredith Martin and Lee Jones answer questions about preparing to live independently, and sibling Maddie Mitchell describes her experience attending her first NDSC Brothers and Sisters conference. (Source: NDSC Blog, 19th October 2012). 
Down Syndrome News archives.


Every year, the (US) National Down Syndrome Society (NDSS) reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square.

The Times Square Video presentation kicks off Down Syndrome Awareness Month on the morning of the New York City Flagship Buddy Walk. NDSS received over a thousand photo submissions for the 2012 Times Square Video contest and the featured photographs highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. 


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. 

  • 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.

Friday, 19 October 2012

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

Buddy Walk Sydney 2012: Team Jack


Team Jack - the Mason family are regular Buddy Walkers, whatever the weather, and always have the support of a large contingent of cousins, and extended family

So far, Jack has always managed to get a lift over the Bridge deck!

There must be quite a collection of Buddy Walk T shirts in the Mason household.

Maybe next year it will be Connor on Dad's shoulders?

Jack, Dad and Connor

Three cousins and Jack's brother Ben help out

The Mason boys, Jack, Connor and Ben


From the archives - Buddy Walk 2008
Thanks to Alison and Don for your photos

Futures Alliance forum: 16th November


The Futures Alliance and the Australian Association of Gerontology are pleased to present a forum: 

 Person Centred Approach - Making It Work For People with a Disability who are Ageing

Friday November 16, 2012
10am - 3pm

Ryde-Eastwood Leagues Club, West Ryde (Sydney)

  • Hear about the latest research
  • Learn about reforms in Ageing and Disability policy at both state and federal levels
  • Get an update on the development of a National Disability Insurance Scheme
  • Throughout the day we will share the stories of people with disability and their carers about their lived experience as they age
This event is free for people with disabilities and their family carers.
  • Presentations from the Futures Alliance 2011 Ageing with a Disability Research, Policy & Practice Forum are available online.
Futures Alliance is ... A cooperative of (NSW) community representatives with a single focus on removing boundaries and maximising community resources to deliver improved options for people with a disability who are ageing.

Thursday, 18 October 2012

National Disability Awards 2012 finalists announced


Congratulations to all the National Disability Awards finalists announced today.  The winners will be announced on 28th November.

Good luck Audrey O'Connor and Gerard O'Dwyer, both finalists in the Emerging Leaders Award - recognising an individual aged 15 to 35 years who is a leader in their community through raising awareness and/or improving outcomes for people with disability.




Buddy Walk 2012: Wagga Wagga, the Illawarra and Newcastle, Sunday 21st October


Event kits for our three regional Buddy Walks this Sunday, 21st October can be downloaded from here, giving all details of the route and program for each event. Looking forward to seeing all your favourite photos from the day.

The Newcastle Star on Monday took up the Buddy Walk story with an interview with Olivia's Mum, Christina Veljanovski, who said of her family's first Buddy Walk, "For us it is really about the sense of community and being welcomed into a large supportive family in a way that I never expected."

We'd love to see and share your Buddy Walk photos from around NSW - please send them to blogeditor@dsansw.org.au

Have a wonderful day on Sunday, wherever you walk!