Address details


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


Thursday, 1 December 2011

Toy shopping suggestions

Jennifer Bekins, speech and language pathologist at the Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, has posted her annual list of gift suggestions on her blog, Let's Talk Down Syndrome. She says:
'Our team members are often asked what kinds of toys we suggest for children with Down syndrome. For the past several years I’ve compiled a list in November/December for this very reason. Our criteria when choosing toys:
  •  Engaging/ interesting
  •  Target specific goals we address in therapy
  •  Not too annoying (limited bells and whistles)
  •  Developmentally appropriate
  •  Encourage adult-child or child-child interaction
  •  Available locally or on common on-line sites'
The last point might not be so relevant if you are Australia, but many of the brands and toys are available here. And of course there are the hundreds of toys that any child will enjoy ...

What have been the top toys on your household?

Tuesday, 29 November 2011

Distressing news report

A very distressing experience for a NSW man with Down syndrome and his family was reported on the front page of the Sydney Morning Herald yesterday, as an example of the risks of telephone triage of emergency ambulance calls.  Our deepest sympathy is extended to Geoff Chesworth's family - the grief of his untimely death is exacerbated by their experience in trying to get emergency help.

Two letters to the editor commenting on the circumstances were published today.

These two articles by the SMH's Health Editor, Julie Robotham, published in yesterday's and today's editions are about the telephone triage process that might put people with intellectual disabilities at particular risk, and the investigations promised.

Monday, 28 November 2011

Website of the week: Play Talk Learn

Play Talk Learn is a website maintained by a Western Australian speech therapist who is also a busy mother of young children.  Emily says of her site:

This is how Play Talk Learn came about. Here you will find activities that are:
  • fun (otherwise the little blighters won’t want to do them, and neither will you!)
  • easy (I’m sure you’ve got lots of other things that you’d rather be concentrating on!)
  • quick (do I have to explain this one?)
  • done without special equipment (just a fossick through the craft box and the recycling bin!)
  • designed to teach your child a new concept, word, or skill (whether you’re concerned about their development, or whether you’re looking for home activities)
  • the result of being tried on real children in real homes in really busy lives!

With the long summer holidays just a couple of weeks away, families of young children with Down syndrome might find lots of easy and entertaining ideas here - let us know if you do.

Sunday, 27 November 2011

Kyiv, one year on

You might recall Frank Buckley's article in our journal, Voice, just a year ago, about children with Down syndrome in Kyiv.  Frank has written an anniversary blog post to mark the first year's progress of Down Syndrome Education International's work in Kyiv, here.

Check out the media links - you don't need to know Ukranian to enjoy the short videos. The third article is in English, and includes a delightful photo gallery that will be very familiar to anyone who has attended an early intervention program. Great to see the kids playing, learning, cherished by their families.

Background on the Kyiv project is in this earlier post from Frank Talk.

Saturday, 26 November 2011

Up, Up and Away on Aurora TV

People with disability will celebrate their lives and achievements across Australia on and around 3rd December, marking International Day of People with Disability.

Up Up and Away (the documentary from the Down Syndrome NSW project) will be screening at 8pm, 4th December 2011 on the Aurora Community Channel.

Friday, 25 November 2011

Ever After Theatre Company presents .... Power

A new work created by Ever After Theatre ensemble members


Kerrie Anne Bezzina, Matthew Cutmore, Tom Hancock, Jo Rix, Thomas Maxwell, Emma Plant, Rodrigo Salinas, Digby Webster

Tuesday 6th and Wednesday 7th December
8pm
Rozelle Neighbourhood Centre, 665A Darling St Rozelle
Entry: $10
BOOKINGS ESSENTIAL 9555 8988 extension 2 or everaftertheatre@gmail.com
“The secret is the power of story”
What is Power? 
Is it to control or command over others?
Is it the ability to do or act?
Is it accomplishing something great?

Power is a collection of improvisations and moving images the Ever After ensemble have been preparing over the past few months. It evolved from a performance some members of the ensemble presented at the Nepean Expo in 2010 called The Game. The company expressed they wanted to explore further The Game especially the roles and rules of the games people play, not only on sporting fields but in a playground, in a workplace or in places where major decisions are made. They then integrated these themes further during workshops with world-renowned physical theatre company Legs On The Wall. This special collaboration resulted in the powerful moving images presented intertwined with live improvisations establishing how we respond to power.

Ever After Theatre Company is a group of emerging artists who happen to have a disability. They create and perform their own work as a means of communicating with the broader community.

Thursday, 24 November 2011

The Project 23 Nov: Living with Down syndrome segment

In case you missed it on Wednesday 23rd November, The Project's (Channel 10) segment on living with Down syndrome can be viewed here - the segment clip starts after a couple of ads ... then 'our' story is 6 m 30 sec in.
It's generated a lot of very positive comment on The Project's Facebook page, and on our Facebook page, and this compilation of direct responses.

Library Thursday: managing grief and loss


In response to requests from members we have added some books to our collection on helping children and adults with intellectual disabilities to deal with the death of loved ones. One mother whose young teen lost his closest friend in an accident, and his grandfather at around the same time said that she found it useful to place a loose photo of the friend and one of his Grandpa in the book he liked best, to help him relate the text to the people he loved. He kept the book in his room, and took it out when he needed to - which was quite often, initially.

Tear soup - a recipe for healing after loss, by Pat Schweibert and Chuck Deklyen
Because we never learn exactly who or what Grandy lost and why she is making Tear Soup, the story remains open to countless situations of bereavement and family members. By emphasizing the individual process of bereavement by making soup, Grandy’s brings a warm and comfortable feeling to an otherwise difficult subject matter for many (readers).

The saddest time, by Norma Simon
Three stories to help children talk about death – an uncle with a terminal illness, a classmate killed in an accident, and a grandparent.

Beginnings and endings with lifetimes in between, by Bryan Mellonie and Robert Ingpen
A useful book to explain to children that death is a part of life and that, eventually, all living things reach the end of their own special lifetimes.

When someone very special dies: children can learn to cope with grief, by Marge Heegaard
A practical format for allowing children to understand the concept of death and develop coping skills for life, this book is designed for young readers to illustrate.

Down Syndrome NSW members can arrange to borrow from the library by email to library@dsansw.org.au or call to speak with support and information staff, on 9841 4444

Wednesday, 23 November 2011

My life, my way: Choosing the Self Managed Model for your day program

NSW Ageing, Disability and Home Care (ADHC) has recently released a new information booklet (44 pages) which explains all about the Self Managed Model of their Day Programs (Community participation, Life Choices and Active Ageing).

It includes great stories from people (some of whom have Down syndrome) who are already doing this as well all the information people need to know to be able to get started with the Self Managed Model. It is clearly written and well set-out. The cover photo is very nice!

To see and download the booklet Life, my way: Choosing the Self Managed Model for your day programclick here

Stronger Together 2: Supported Accommodation Fact Sheet

This NSW Ageing, Disability and Home Care (ADHC) publication provides an update on the 1750 places as promised in the Stronger Together 2 initiative. Click here to check it out.

Wordless Wednesday


Tuesday, 22 November 2011

Everyone Can Dance: Narellan, 3rd December




Discobility Dance Party

Narellan Community Centre
Queen Street, Narellan 2567

11.00 am - 3.00 pm
3rd December 2011

Free entry all day
Other entertainment, BBQ, and much more ...

Contact: Tara Grech, Everyone Can Dance
0422 085 470

Free dance workshop for International Day of People with Disability


An invitation from Arncliffe Community Centre:

Join us to celebrate International Day of People with Disabilities.

Learn some new moves and have fun @ our free Dance Workshop.
No matter what your disability. if you’re aged between 12-26 years of age - everyone welcome and bring your carer along.

Friday 2nd December
11.30am—12.30pm
Coronation Hall
23 Barden St Arncliffe

To book a spot or for more information, call Arncliffe Community Centre on 9503 9900.

An initiative of St George Community Services Inc


Monday, 21 November 2011

Inclusive Technologies and Learning Disability in Education and Employment Conference

National Disability Coordination Officer Conference 2011
7-9 December 
Hunter Valley
For more info or to register contact
Kay Dean kay.dean@newcastle.edu.au on 02 4921 8844, 0438 218848 
or Timothy Hart on 8878 0514 t.hart@sydney.edu.au or click here for more info

The Project, Channel 10 Wednesday 23rd November

Be sure to tune in to Channel Ten 's The Project on 23rd of November
Fiona and Neil Cohen will be speaking about Down syndrome and their gorgeous son, Riley, and superstar Gerard O'Dwyer will also be making a guest appearance!!

Sunday, 20 November 2011

2013 Down Syndrome NSW Calendar !

We know you haven’t started using your 2012 calendar yet, but its time to think ahead. Please send in your photos for our 2013 calendar!

Regular calendar buyers tell us how much they enjoy seeing the wide range of activities that people with Down syndrome of all ages have been up to over the past year.

Summer holidays, special events, starting school, starting high school, finishing school, going off to work or enjoying time with family and friends all make great calendar photos. If you have a particular interest, passion, hobby or skill, think about capturing that in a photo too.

Prints are welcome, but it is easier for everyone if you can email your digital photos as attachments,. For good quality printing, please send files that are at least 300 dpi resolutions, and a minimum of 500 Kb.

Include details of who is in the photo, and that they have given their permission for it to be used.

Please email photos to Angela Adams at admin@dsansw.org.au  or post to

Down Syndrome NSW
PO Box 9117
Harris Park  NSW 2150

Submissions for the 2013 calendar will close on 31st May 2012

Friday, 18 November 2011

Three new opportunities to take part in local research studies

Quite a number of opportunities are currently available for people with Down syndrome and/or their families to participate in Australian research projects, either online, or in person.  See our 'Research participation opportunities' page (link at the top of this blog) for a full listing of current projects. These three are new notifications:

The legal function of serious disability in prenatal and neonatal healthcare setting - a nation-wide study is being conducted by researchers at the University of Technology Sydney and at the University of Sydney:

Download information provided by the researchers here.

HAVE YOU HAD PRENATAL TESTING FOR A DISABILITY?
HAD A CHILD IN NEONATAL INTENSIVE CARE? USED PGD?
DO YOU HAVE A CHILD WITH A DISABILITY?
We would like to hear about your experiences and, in particular, your thoughts and opinions about the management of potential disability before or during pregnancy or after birth. This Australian study examines the meaning of serious disability in prenatal and neonatal settings. Your contribution is valuable and will inform our analysis of law and policy relating to these practices.

This study is supported by an Australian Research Council Discovery grant. To share your thoughts in a confidential online survey, visit http://seriousdisabilityproject.blogspot.com

* * * * * * * * * *

Cognition and gait in people with Down syndrome is a Macquarie University project, recruiting people with Down syndrome aged from 6 years to adulthood.
Documents provided by the researcher, Alicia Wilcox: 
* * * * * * * * * *

Social  processing in people with Down syndrome is also a Macquarie University project, recruiting people with Down syndrome aged 6 to 60 years.
* * * * * * * * * *


Please contact the researchers directly via the numbers or email addresses in the linked documents, if you are interested in participating.

Thursday, 17 November 2011

Library Thursday: For Pete's sake!

New in our collection are two biographical volumes by Yvonne Crabtree, about life with Pete up to 30. She describes him as 'definitely a one-off'.  You can read extracts here. These are the cover extracts for each book:


For Pete’s Sake,  by Yvonne Crabtree 2007
I didn’t abandon Pete at birth – mainly because the thought never occurred to me to do so – but there were times in later years when, I have to confess, I wondered what life would have been like if I had. Having got to where he is now, truly, I can say, what a lot we would have missed! Life with Pete has been a giant roller coaster of a ride; at times plumbing the depths but equally experiencing high points we might never have known without him. And boy, have we had some laughs! If you have, or know, a child with Down’s Syndrome there may be parts of this book that ring very true for you but don’t panic too much; the chances of him or her being another Pete are pretty slim. He’s definitely a ‘one-off’.

“Oh No! Not You Again!”,  by Yvonne Crabtree
 Thirty! Who’d have believed it? There was a time when I didn’t think he’d make double figures – or that if he did, I wouldn’t still be around to witness it. He was just like the character ‘Billy Whizz’ in the old ‘Beano’ comics – as fast as I cleared up one scene of devastation, he was creating the next!
But time has marched on and we’ve both survived – me to tell the tale and Pete to live it, in his own, inimitable fashion.

Once Pete moved into his flat, nearly eight years ago, I thought that life would quieten down, which to some extent it has, but life is never dull, even with Pete one-step removed and as ever, he presents us with challenges. In fact, life with Pete could be likened to doing a very complicated jigsaw whilst wearing a blindfold. He didn’t come with an instruction booklet, so we continue to grope our way along, trying our best to guide and support him. So from new girlfriends to new jobs, this is the story of Pete negotiating the way through his twenties – and managing to scrape out at the other end. Perhaps I should have called the book ‘Peter Crabtree: The Cappuccino Years’.

Down Syndrome NSW members can arrange to borrow from the library by email to library@dsansw.org.au or call to speak with support and information staff, on 9841 4444