Sunday, 28 February 2010

Young Carers - newsletter, events, activities and support

Young Carer News, February 2010 has lots of very useful information about activities, and camps planned to support young people contributing to the care of a family member with a chronic illness, mental health concern, or a disability.

Two camps for young carers are currently open for applications:

Gamarada Retreat for 18-25 year olds
June 28 - July 1, 2010
Applications need to be in by Friday March 12

It is described as a wellbeing retreat for adult young carers aged 18-25 years .....a great oppotunity to relax and take part in some fun activities with other young adult carers, (and) to share your stories and learn how others balance caring with work, study and life in general
Any young carer aged 18-25 from anywhere in NSW is eligible to apply.

Camp One Mile Beach
Open to all young carers aged 8-12 years old who live in the Hunter or New England regions.
Friday May 7 - Sunday May 9, 2010
One Mile Beach Holiday Park, Anna Bay
Cost: Free - includes accomodation, all meals and activities.
To Apply: contact Kathy Jones at EDuCARE on 02 4921 4895

Click here for details of these events from the Young Carers website

Many siblings of people with Down syndrome fit the criteria for accessing support through Young Carers:

Carers NSW Carer Representation Program

The Carer Representation Program provides training, information and support to carers to enable them to act as Carer Representatives, representing Carers NSW and the wider body of carers.

The aim of the Carer Representation Program is to inform a range of professionals and the broader community of carers’ perspectives.

Carer Representatives activities include:

  • participation on committees, advisory groups etc;
  • guest speaking;
  • forums;
  • conferences;
  • media interviews;
  • focus groups.

Carers NSW is seeking the involvement of carers from diverse communities and backgrounds, with carers throughout metropolitan, regional and rural NSW invited to join the Carer Representation Program.

Service providers are encouraged to inform carers of this opportunity.

No experience is required, but an interest in getting the carers’ perspective heard is a must.

For more information please contact Alison Parkinson. Ph (02) 9280 4744 or email

Saturday, 27 February 2010

Free online events about current research from DownsEd

Kathi road tested Down Syndrome Educational International's new program of "webinars" earlier this week, and reported that they more than lived up to our high expectations. Now there is a wonderful opportunity to find out about current research into aspects of Down syndrome - a very exciting initiative, just in from Down Syndrome Education International:

Find out more about our research at free online events
We are launching a series of online events presenting the current research activities of Down Syndrome Education International and our partners.

These live events are free to access online and by telephone for families, professionals and scientists worldwide.

Over the past 30 years, developmental and educational research (conducted by us and others) has increased what is known about the learning difficulties experienced by people with Down syndrome. This research has improved teaching techniques and transformed education for many thousands of young people with Down syndrome today. However, much remains to do. Many important questions remain unanswered and many specific interventions have not been sufficiently evaluated.

Our series of online events will present our current research activities and discuss how we are working to answer critical questions about development and education for children with Down syndrome.

Program outline:

Science fact and fiction - What research has delivered for people with Down syndrome and what it might deliver in the future?
Friday, 26 March 2010 (8:00 pm Sydney)

Research progress at Down Syndrome Education International – current projects and future priorities.
Friday, 23 April 2010 (6:00 pm Sydney)

Is autism being over-diagnosed? What do we learn from early autism screening?
Friday, 14 May 2010 (6:00 pm Sydney)

Can we improve children's problem solving skills? - pilot data and future plans.
Friday, 21 May 2010 (6:00 pm Sydney)

What are we learning about the links between signing and speaking?
Friday, 28 May 2010 (6:00 pm Sydney)

Developing and evaluating a classroom reading and language intervention - progress one year on.
Friday, 11 June 2010 (18:00 Sydney)

Can we improve children's working memory skills? - results of a small training study and next steps.
Friday, 18 June 2010 (6:00 pm Sydney)

Presenters will include Prof Sue Buckley, Stephanie Bennett and Dr Kelly Burgoyne.

Note that each event is being presented on two occasions - one of them (given here) kindly timed for Australasia and Asia. Families might well want to pass this news on to their child's school and/or therapists.

Visit DownsEd for more information about each event, and to register, and for more about the Sue Buckley Research Fund.

Family Advocacy - In Control Australia forum

What does Self Directed Planning, Funding and Support mean for people with high and complex needs?

Monday 22 March 2010

Register online at or contact Family Advocacy for a registration form: email or phone (02) 9869 0866

Family Advocacy also has several “Moving Out” workshops scheduled during March - check the website for details.

WROK -a camp for teens with disabilities

WROK is the acronym for Wheelchairs Rule OK - but read on, it is open to teenagers and children with intellectual disabilities too, and they have asked us to tell our families about them!

What is WROK?
WROK is a 5 day camp run in the April school holidays each year for teenagers (12-21) with physical and/or intellectual disabilities and disorders.

Where/when does WROK happen?
Blue Gum Lodge in Springwood, NSW which is in the beautiful Lower Blue Mountains region.
7-11 April 2010

Who runs WROK ?
WROK is an Anglican Youthworks camp run by dedicated volunteer leaders many of whom have backgrounds in teaching (general and special education). Contact the Team for some profiles.

For more information and to locate application forms, visit the very cool WROK website: and read the FAQ pages.

What about younger kids?
This year for the first time WROK is inviting 8 - 12 year olds to experience just a taste of WROK! camp. Saturday 10th April, 2010 will be a special day for our potential younger campers. It will be a fun filled day and parents can either choose to stay for the day,watch the fun and relax in our special cafe. Or if you choose to leave your camper with us and explore the beautiful Blue Mountains.
You can contact the WROK team directly by email:

Friday, 26 February 2010

Dance Like Nobody's Watching: film screening, Sydney 22nd March

Dance Like Nobody's Watching is a new Australian film directed by Liz Collins, starring Paul Matley.

This documentary gives us a clear insight into what it feels like to have Down syndrome in 21st century Australia. (Voice, March 2010)

Hayden Cremorne Orpheum Picture Palace
380 Military Road, Cremorne

Monday, 22 March, 6.00 pm

Liz Collins and Paul Matley will be present

Supported by a screening of the 2009 Tropfest-Best Film

Be My Brother (starring Gerard O'Dwyer)

Tickets: $20

Book online here, or phone Down Syndrome NSW, on 9841 4444
Screening for World Down Syndrome Day
(proceeds to Down Syndrome NSW)

Cricket Carnival Day: 13th March, Queens Park

Cricket NSW is conducting a carnival day for people/teams of people with a physical or intellectual disability. There will be two divisions for teams of a maximum of 10 to participate in. There are no prerequisites and people of all ages are welcome to join in the fun of these 10 over a side matches.

11am to 3pm

Registrations required in advance – they will NOT be accepted on the day. Must be received by 4th March.

Queens Park cricket fields 20 and 23, Darley Rd, Queens Park
Parking – available in Darley Rd – 4 hour parking limit

$30 per person and all equipment supplied (bring your own if you wish!)

Click here to download a flyer a registration form.
Contact Donna at Cricket NSW with any enquiries:
Ph. 02 8302 6033
Mob. 0400 431 776

Get Active with Rugby League - Inclusive Rugby League Program

The Western Sydney Rugby League Academy invites you to join the Inclusive Rugby League program, aimed at increasing the levels of participation in sport, recreation and physical activity for people with disabilities.

The program will focus on training in the following areas:
  • Team Trainer
  • Team Manager
  • Gear Steward
Merrylands Oval, Merrylands Road
Friday 26th March 2010, 5.30pm - 7pm

For a nomination form, contact: John Wilson
Phone: (02) 4725 6000 Email:

Thursday, 25 February 2010

Library Thursdays: DownsEd Web Seminars and More See, Sign & Say books in the library

This week the first of the web-based seminars from Down Syndrome Education International given at a time easily accessible to NSW members have started. This a great opportunity for parents, teachers and therapists to attend the excellent training sessions given by Sue Buckley and her colleagues without having to go around the world.

The webinars consist of a presenter (Sue Buckley, Julie Hughes, Gillian Bird are a few) who delivers the presentation via a video link into your web browser. Slides are shown alongside a box with the speaker speaking. There are notes that can be downloaded before the presentation and the session is recorded and will be available for participants to view later. There is time for questions and a place to type those in as the speaker speaks so that you don't have to remember later what it was you wanted to ask.

In the session I attended (What does research tell us about the specific learning needs of children with Down syndrome (5 to 11 years)?) the talk was for approximately an hour and there was half an hour for questions. It is a bit different asking questions over the computer rather than in a conference room. In a way, it is easier to just type in a question rather than have to stand up in front of everyone, but it is also harder as you are typing while you are listening and can't easily reform your question or follow up something said while you were typing. Also, it may have been the lack of my experience setting up my session, but I couldn't see the questions that others were asking or the question that the presenter (Sue Buckley in this case) was answering although usually she made that clear.

To sign up for the seminars, you can either choose an entire course (a session a week for 10 weeks) or single seminars. There is a 20% discount if you sign up before the end of Feb. This works out to be GBP24.00 or $US40.00 for each seminar session and a further discount if you sign up for the entire course. This block of seminars is scheduled at 9:00am GMT which is 8:00pm Australian Eastern Daylight Time. You can choose courses for early childhood (0-5 years), childhood (5-11 years) and speech and language. The weekly seminars that make up each course can be purchased individually. Topics range from specific learning needs, speech/language & communication, reading, number skills, social development and behaviour plus more. There are plans for these seminars to be held again in April and May at 5:00pm AEST although these cannot yet be purchased.

I found attending the web seminar to be excellent. Setting up was very well explained and the technology was well done. The video and sound quality were good and there was provision for staff to troubleshoot any problems I may have had. There is also an option to listen to the seminar by phone if you do not have the capabilities for video. There is a provision for video and microphone input from the audience but this was not used. I am looking forward to attending more seminars and I would highly recommend it to anyone interested.

Down Syndrome Education International is also putting out videos of conferences which will be in the library in the next month. This will most likely be the same talks, however the web seminars give an excellent chance to ask questions of the experts.

New this week in the library are more titles from the See, Sign & Say series of books. These books have a photo/picture, word and sign on each page. The new acquisitions of this highly popular series from Tara Hearne & Aileen Ryan include: Transportation, Places to go, Baby's 1st words, Sports, and Colours. Aileen's Hands Can Talk website is now back and updated so these books and other signing resources can be purchased from there. They are also available to be borrowed from our library. In addition to these new titles, we also have Emotions/Feelings, Objects, Opposites One & Two, Directions, Food, Pre-school, Primary School, Alphabet, Animals, Baby Animals and Teen Feelings. Just email or call us if you'd like to borrow these or anything else.

More Outside School Hours Care providers for teenagers with disability

15 new providers of outside school hours activities for teenagers with disability nationally, were announced in December.

The new services in NSW will be provided by:
  • The Disability Trust, North Wollongong and Milton
  • Sylvanvale Foundation, Kareela
  • Ability Options Ltd, Goulburn
  • Barnardos Australia, Cranebrook

Contact your local ADHC office for information about vacancies and applications for places.

Bowel Group for Kids

The Bowel Group for Kids is a registered, Australian based charity dedicated to providing emotional support to families of children born with Hirschsprung’s disease, imperforate anus/ano-rectal malformations and associated conditions.

These conditions occur more commonly amongst children with Down Syndrome and BGK is well informed about Down syndrome. To learn about the support and information BGK offers, visit the website:

Wednesday, 24 February 2010


Down Syndrome Australia Network, AFL Foundation,and the 2010 AFL Umpires Roadshow present

ACHIEVING GOALS ACTIVELY - promoting the benefits of physical activity, healthy lifestyle and fun

Warm up and aerobic exercises, ball skills, stretching, Umpire skills

Free one-off sessions held nationally for all people with Down syndrome and their siblings. (School age & above)

NSW dates and locations for 2010

4pm to 5pm Mon 15 March
Gosford Area (details of exact location TBC)

4pm to 5pm Tue 16 March
Area (details of exact location TBC)

4pm to 5pm Tue 16 March
Wagga Wagga, Maher Oval

To RSVP or for more info, please email or phone 9841 4444

Early numeracy development: research at ACU Canberra

Theresa Shellshear lectures in mathematics education at the Australian Catholic University, Canberra.

She is calling for expressions of interest from parents of primary school aged children, to participate in a study of the role of parent's in supporting their child with Down syndrome in the development of early mathematical concepts.

Dr Rhonda Faragher will supervise the project.

Contact for a response form, or contact Ms Shellshear directly, at or on 0437 867 628 for further information.

Art from the Heart - Newcastle

Throughout the past year, over 100 people with disability have participated in art workshops at Newcastle Community Art Centre through Art from the Heart.

Artworks created during the workshops are now on public exhibition, and available for purchase:

24 February – 14 March 2010
Newcastle Art Space, 246 Parry Street

Newcastle West

Bookings: Brooke Cross – 0407 769 903

Tuesday, 23 February 2010

Down Syndrome Nutrition - a celebration and a sale, and Joan Medlen's blog

Joan Medlen is the internationally known and respected author of The Down Syndrome Nutrition Handbook, and a renowned communicator, teacher and publisher. And now she's the mother of two young men, celebrating her youngest, Andy's 21st birthday this week. To mark the event, here website, Down Syndrome Nutrition is offering a sale of her excellent resources, until 30th March.

Joan has also amalgamated her blogs into a single site, Practical Wisdom - Phronesis, where she writes with great good sense about diet, nutrition, food, communication, health literacy, and sometimes about family and friends. Her latest post is about the risks of using food as rewards, and safer options. We've added to our blogroll at right.

Facebook site incites hatred

Down Syndrome Australia, 22 February 2010:

Down Syndrome Australia today called on Facebook to immediately take down a site which advocates using children with Down syndrome as target practice and offer all people with Down syndrome and their families a formal apology.

Spokesperson for Down Syndrome Australia, Kirsten Deane, said the site was offensive and incited hatred of people with Down syndrome.

“Unfortunately this site represents the extreme end of the kind of prejudice and discrimination people with Down syndrome experience every day,” Ms Deane said.

“These kinds of attitudes have no place in contemporary Australia.

“We believe Facebook has some responsibility in continuing to host a group that is promoting not just hatred but acts of violence.

“People will want to laugh this off as a bit of a joke but it is no laughing matter for people with Down syndrome and their families. Reinforcing prejudice and negative attitudes just makes their lives that much harder every day.”

Ms Deane said that while the site had its origins in Italy, the global nature of communications and the international nature of Facebook meant its impact was still felt locally.

“This affects every person with Down syndrome and their families. The thinking behind it is the reason people with Down syndrome so often find difficult to find a place in the community.”

For more information please contact Catherine McAlpine on 0419 530 524

ABC News has published an international report about the reaction to the site in Italy:
Outrage over anti-Down syndrome site

Accessible Dance - new arrangements for 2010

Sydney Dance Company has offered an accessible dance class in the city for some years. It is popular, and we know that many people with Down syndrome have enjoyed it, and continue to do so. The class is continuing, but with a new teacher and administration. Details are provided by Accessible Arts here.

Saturday, 20 February 2010

(NSW) Liberals offer hope to carers

Andrew Clennell, reports in today's Sydney Morning Herald, on a recent policy release by the NSW State Opposition:

The rights of the state's 750,000 carers would be enshrined in legislation for the first time if the Coalition wins office at the state election next year, forcing government agencies to give carers more help and support.

An act similar to a British law would legislate that government agencies undertake individual assessments of carers' physical and psychological needs and that government departments take carers' needs into account

Click here for the full text of the SMH report.

Friday, 19 February 2010

Second UTS study on Participation in Sport: focus on females with disabilities

The University of Technology Sydney (UTS), together with the Australian Paralympic Committee, is undertaking a research project to better understand the reasons females with disability have for participation and non participation in sport.

Participants in the research will be interviewed either in person, over the phone or through instant messaging via the internet. The interviews will run for no longer than one hour. These interviews need to take place before Friday 5 March 2010.

This research project has been approved by the UTS Human Research Ethics Committee and participants should be aware that all responses given in their interview are confidential.

For more information contact Ryan Sherry. Ph: 02 9514 5101 or email;

For information on the first study, being conducted by the University of Technology Sydney for the Australian Sports Commission, announced recently, click here.

Thursday, 18 February 2010

Library Thursdays: Keys to Living Together & Planning for the future

The Australian Government (Department of Families, Housing, Community Services and Indigenous Affairs - FaHCSIA) has put out a series of booklets and DVDs called Keys to living together. One of these is Life-changing journeys: Helping to build stronger, healthier relationships for couples with a young child with disability. It includes things to think about and discuss with your partner to work through feelings you may have about having a child with a disability. It also talks about the importance of building supports, having respite and looking after yourself. The booklet looks useful for working through these things. The DVD is a bit cheesy but I can see it being used in workshops as discussion starters. The booklet can be downloaded here. The Life-changing journeys DVD and booklet can be borrowed from the library.

Also from FaHCSIA:

Both of these publications are available in English, Arabic, Chinese, Croatian, Farsi, Greek, Indonesian, Italian, Korean, Maltese, Serbian, Spanish, Turkish, and Vietnamese. These can be downloaded from the web or borrowed from our library.
FaHCSIA also offers a Family Relationship Service for families which provides mediation and counselling for families to help plan for the future for their family member with a disability.

If you'd like to borrow any of these items or anything else from the library, just email.

Wednesday, 17 February 2010

Kids for Life "Enchanted Forest" Ball supports Down Syndrome NSW

We are pleased to announce that tickets are now on sale to the Kids for Life 6th Annual Black Tie Ball. Each year, the Kids For Life ball has been bigger and better than the last… and this year will be no exception.

As you enter our Enchanted Forest, you’ll be stepping into a world of glamour, entertainment and magic. Guests will experience exquisite food and wine, and fundraising fun for all.

There will be live and silent auctions, the always popular major raffle and a few other magical surprises, all hosted magnificently by the incomparable Adam Spencer.

Please join us and help raise much needed funds for our 2010 projects: the new Kids For Life Down Syndrome Resource Centre and the Kids For Life Sydney Children’s Hospital Epilepsy Program. Children affected with either Epilepsy or Down Syndrome across NSW desperately need a place to turn to, and all too often they’re not given access to the professional care and comfort they require. Kids For Life is committed to making a difference, and giving these kids and their families the respite they deserve.

So round up your friends, family and work colleagues, and buy your tickets today. As always, this will be a sell-out event.

We look forward to seeing you there,
The Team at Kids for Life

Date: Sat 27 March 2010, 6pm - 1am

Venue: Hordern Pavilion, Moore Park, Sydney

Dress: ‘Enchantingly’ in black tie

Tickets: $199 each, $1,990 table of ten

After: Kit & kaboodle from 1am
(free entry with ball ticket, transport from the Hordern provided)

RSVP: Fri 12 March 2010

Click here for further details and to purchase tickets

Click here to download a flyer that you can forward to friends

If for some reason you can’t make the night but would still like to help support our causes, simply head to our website to make a donation:

(Remember, all donations over $2 are tax deductible).

Click here for information about sponsorship opportunities

Saturday, 13 February 2010

NSW Guardianship Tribunal call for expressions of interest, part-time members

The NSW Guardianship Tribunal is established under the Guardianship Act 1987. Its members are appointed by the Governor.

The Tribunal’s role is to hear applications to appoint guardians and financial managers for individuals who, by virtue of a decision making disability, are unable to manage their person or their finances. The Tribunal may review enduring powers of attorney and the appointment of an enduring guardian. The Tribunal may also provide consents to medical treatment for people incapable of consenting for themselves. The Tribunal is constituted by panels consisting of between one and five members.

Expressions of interest are called for from prospective

  • legal members
  • professional members
  • community members

Closing Date: Friday 26 February 2010.

Read more here .......

Thursday, 11 February 2010

“Breaking Point” - Four Corners, 15th February at 8.30 pm on ABC TV.

Media release form ABC TV

This week on Four Corners, “Breaking Point”. The heart-rending story that tells what it’s like to live with a disability, or to care for someone who is disabled, in Australia today. Reporter Wendy Carlisle meets the families the nation has neglected.

The system of assistance for people with a disability in Australia is broken. Carers know it, charitable organisations know it and so do the governments. Now the federal government says something must be done. It’s holding an Inquiry, with the intention of creating a new and fairer system. It’s even considering a national disability insurance scheme. But will the system be reformed in time to save the families now at breaking point?


In Sydney, 65 year old Dick Jones showers his profoundly disabled son Robbie. It’s a task he does willingly but at his age he doesn’t know how long he can keep giving his son the care he needs. He’s been told the only way to get more help would be to abandon his child and leave him in the care of the state.

Amanda Royle’s 9 year old daughter Rosie is deaf and blind, cannot speak, and is intellectually disabled. On her own with two other children to look after, Amanda is in desperate need of assistance that the system cannot provide.

The Nguyen family has twin boys with severe autism. At thirteen they are intellectually disabled and need to wear nappies. Three years ago one of the twins was given a place in a special school. For the family it was a god-send. Now the funds have dried up and the school is threatened with closure.

These families are desperate and they are not alone. Across Australia it’s estimated that there are 1.5 million people with a severe disability. Only a small proportion of them receive any direct physical care from government or charities. The vast majority rely on family and friends to help them survive.

“It doesn’t matter where you look across the sector, across the states of Australia, the system is broken.” Bruce Bonyhady, Independent Panel Member, Productivity Commission Inquiry into a National Disability Support Scheme

The reasons for this situation aren’t hard to find. Thirty years ago governments radically reformed the system of disability care in Australia. They promised to set people free from institutions, and at the same time they promised a major boost in funding so that people with disabilities could be supported to live at home or in community settings. Instead those services have been starved of funds leaving carers, many whom are now in their 60s, 70s, and 80s, to carry the burden. It’s a terrible situation as Dick Jones told Four Corners:

“We were told... the only option you have, is when you are in a wooden box , that’s probably the only time that Rob [his adult son] will get any accommodation.”

The Federal Government accepts the system needs reform and has begun to allocate extra funds for services and carers.

Most significantly, the Federal Government has set up a Productivity Commission Inquiry to recommend systematic reform and the establishment of a comprehensive National Disability Support Scheme. The problem is if the Inquiry recommends a new scheme and the Federal Government agrees to act, even the best estimates suggest real change in Australia would take five to seven years to implement.

“There’ll obviously I think be more meat on the bone for a scheme towards the end of a second term. When the scheme could finally be implemented, I don’t know.” Bill Shorten: Parliamentary Secretary for Disabilities.

For thousands of people this is simply too long to wait. Four Corners reveals the growing number of people who are packing their bags and going to live in countries where the support system is better resourced. These people are being called “disability refugees”. Reporter Wendy Carlisle goes with one young mother to Britain as she investigates the possibility of moving her family back there so her daughter could be better cared for.

While the Government recognises the need for fundamental reform, many families of the disabled are at ‘breaking point’.

BREAKING POINT goes to air on the 15th February at 8.30 pm on ABC1. It is repeated on the 16th February at 11.35pm.

It will also be available online.

A public online forum with some of the people from the story will follow the screening on Monday night starting at 9.30pm AEDST. An invitation is extended to all to join in.

Library Thursdays: Buses & Trains for everyone

Buses & Trains for everyone is a kit put together by Easter Seals in the US as a curriculum for teachers and paraprofessional to train students including those with disabilities to use public transport.
It contains a workbook for older children, a comic book and workbook for younger children, worksheets, curriculum plans, and instructor training guide. Many of these are available to download from their website. There is also a student section with activities, encouragement to create their own activities and games (although on my computer I had a little trouble getting the windows to be big enough to play the games). The resources are American and so not all are directly transferrable to the Australian situation. There may be resources available in Australia that provide a curriculum such as this, but it is not as easily obtainable as this program. It is also not made specifically for people with Down syndrome or even intellectual disability and could be a bit more visual, however, it is a useful resource when teaching travel skills to promote independence and safety.
The library also has the program in booklet form and CDs with the information as well as a video to go with the lessons.
If you are interested in borrowing this or any other materials, please call or email.

Tuesday, 9 February 2010

Inquiry into provision of education

Down Syndrome NSW is putting in a submission to the Inquiry into the provision of education to students with a disability or special needs. We are including concerns that we have drawn together from conversations, phone calls, and letters from our members. The terms of reference include: The nature, level and adequacy of funding, best practice in determining the allocation of funding, the level and adequacy of current special education places within the system, the adequacy of integrated support services in mainstream settings, provision of a suitable curriculum, student and family access to therapists and provision of adequate teaching training.

If you have anything you would like to have included in our submission, please call or email us.

2 Twin Sisters blog

Now here's an unusual blog for our community. There are many blogs about babies and young children, and a few about and by teenagers and young adults, and we read lots of them regularly.

2 Twin Sisters is about ... well two twin sisters, one of whom has Down syndrome. The sisters are 58, and Elizabeth (Lizzie) also has Alzheimer's disease. She lives with her twin sister, Greek Diva who is her primary carer, and the blogger. She introduces their blog like this:

I have a story to tell. This blog will be about my journey through life with my twin sister Elizabeth who has Down Syndrome and now struggles with Dementia of the Alzheimer's Type common to Down Syndrome adults her age. My intent is to inform family and friends, educate others in similar situations, and learn to help myself as readers share posts and comments.

In and early post she says:

I have no desire whatsoever to appear a martyr in my efforts to provide the best possible life for Elizabeth, so we’ll skip the kudos. I am hoping someone out there will offer me encouragement and if you read something you have experienced, please share so I know I am not alone in all of this.

A break from blogging early in 2009 ended with this wry comment:

It’s been a long time since I have blogged about my sister and that is not because she hasn’t provided me with material.
Sometimes things are difficult for one or both of the 2 Twin Sisters (Lizzie's description of them), but they are also ordinary and sometimes fun. There is a lot of warmth, some fairly straight talking, some questions, information, ideas and glimpses of everyday life. It's not for everyone, but you'll know if it's for you.

Friday, 5 February 2010

Down Syndrome NSW events in Orange, NSW 11th - 13th March 2010

A series of information events will be held for parents and professionals in the beautiful central western NSW city of Orange from 11th - 13th March.

All events will held at

Orange Ex-Services Club
231 –243 Anson Street,

Registrations close 8th March 2010

Click here for a detailed flyer and registration form for all of the Orange events

All enquiries and registration: contact Siena O’Brien at or phone 9841 4411

- Program -

"Update on Down syndrome"
This workshop will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation and employment services, and to anyone who works closely with people who have Down syndrome, wishing to update their knowledge.
Workshop content: Communication, health and behaviour

Thursday 11th March 2010
9:30am - 3:00pm

Jill O'Connor, Down Syndrome NSW

$99 per person (DS NSW members)
$132 per person (Non members)
Includes GST, Morning tea, light lunch

"Playing to Their Strengths"
A workshop for teachers and school personnel working with students who have Down syndrome

Information and resources from the latest research and practice

Friday 12th March 2010
9:30am - 3:00pm

Judy Davidson, Parent Support Manager, and Jill O’Connor, Down Syndrome NSW

$99 per person (DS NSW members)
$132 per person (Non members)

"Communication and Behaviour"
A workshop for parents and family carers of a child with Down syndrome aged 5 - 12 yrs

Saturday 13th March 2010
10:00am - 3:00pm

Judy Davidson, Parent Support Manager, Down Syndrome NSW
Cost: $22 per person (adult siblings welcome at no charge)

Parents' seminars and workshops are funded by NSW Health, under the NSW Carers Program, and by Down Syndrome NSW, as a component of the “All the Way” project, 2007 – 2010

Click here for a detailed flyer and registration form for all of the Orange events

All enquiries and registration: contact Siena O’Brien on or phone 9841 4411

Thursday, 4 February 2010

Library Thursdays: The Australian Gifts?

As previously mentioned, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Kathryn Lynard Soper,ed., Woodbine House, 2007), is one of the most borrowed items in our library. We highly recommend this book to new parents as it covers a wide range of feelings that parents can relate to and the stories are positive. A few months ago, Gifts 2: How People with Down Syndrome Enrich the World (Kathryn L. Soper, ed., Woodbine House, 2009) was published. These stories are written not just by mothers but by a variety of people who have a relationship with a person with Down syndrome. Both are great books, but are written by Americans. A Melbourne Age journalist, Angela Blakston, who has a son with Down syndrome together with Carolyn McDiarmid, a midwife and mother, are asking for submissions (presumably from Australians) to compile a new book which has been given the working title "Now I See". Perhaps we will see an Australian version of Gifts later this year or next year. As with Gifts, profits/royalities will go to fund copies for new parents and health-care professionals.

In the mean time, if you'd like to borrow Gifts, Gifts 2 or anything else in our library, email us.

On a side note, I'd like to mention a series of books that are not in our library but I came across in my summer leisure reading. They are by Colin Cotterill (who has an interesting website) and are about a coroner who solves crimes along with his nurse assistant and spirits (but that's another story). The reason I mention them is that one of the main characters who works in the morgue has Down syndrome. In the book I read, Disco for the Departed, he features prominantly in the book and is very well portrayed. They are available through most bookstores and may be in your local library.

Wednesday, 3 February 2010

My Time Mosman: apply by 8th February

The Spastic Centre will offer a regular My Time group from 15th February in Mosman:

Who is My Time for?

It is for parents and/or carers of pre-schoolers, with a disability or chronic medical condition and their siblings.

What does My Time offer you?

My Time gives parents the chance to socialize and share ideas with others who understand the rewards and intensity of the caring role. Parents can meet with people in similar circumstances to have fun, hear from others and find out about available community support & research-based parenting information.

What is available for my children?

A play helper and volunteers will be provided to ensure that your children are kept entertained with activities such as singing/music therapy, drawing, playing games and various other activities.

Morning tea will be provided

When: 9.30 – 11.30 a.m. 15th February 2010, then every second Monday

Where: The Drill Hall, (end of), Cross Street Mosman. (Off Bradley’s Head Road)

To register before 8th February, please contact:

Adele Elliott, Group Facilitator,
Tel: 02-9975-8410 or e-mail

Australian research - Sport and Active Recreation: Disability Participation & Non Participation Study

From the University of Technology Sydney:

Australians love sport and active recreation but research has shown that people with disabilities participate less than the rest of the community.

We would like to know whether or not you participate in sport and active recreation and the reasons for your participation. The findings will be used to review current approaches to sport and recreation and to improve access provisions.

To be part of a research study being conducted by the University of Technology Sydney for the Australian Sports Commission on the sport and active recreation of people with disabilities click on the link below:

Your participation in this study is highly valued whether you are participant or not. We are as interested in the reasons for non participation and the constraints to participation that people with disabilities face.

Those fully completing the questionnaire have the opportunity to go into a guessing competition to win 1 of 5 $600 vouchers for Inclusive Sport & Recreation Equipment. For further information on the equipment available, please visit

If you require an alternative format (large print, E-text, Easy English) or would like to complete this questionnaire by phone or want further information, please contact the project manager: Ryan Sherry on (02) 9514 5101 or by email

All responses are anonymous and confidential. The project has been approved by the UTS Human Research Ethics Committee (Ref No. 2009-242P) and any ethical issues arising from the research can be discussed with the UTS Research Ethics Manager, Ms Susanna Gorman, on Ph: 02 9514-1279.

Tuesday, 2 February 2010

The ordinary life of an extraordinary girl .....

..... a year in the life of a 16 year old with Down syndrome

is an interesting and thoughtful blog, started in mid 2009, and planned to finish in July 2010.

A permanent link is now in the blogroll in the right hand column here, or you can subscribe to make regular reading easier.

"Inspiring Communities" and "Moving Out" - Family Advocacy workshops

Family Advocacy is currently advertising a number of dates in February and March for these two workshops. Details are available directly from the Family Advocacy website.

The presentations of the speakers during the In Control Forum held on Tuesday 24th of November 2009 are also available from the Family Advocacy website.

Monday, 1 February 2010

Lutanda's Camp David

Lutanda Recreation and Conference Centres offer a range of camps for adults and adolescents, some of them specially designed to support adults with intellectual disability.

Two adult holiday camps are currently scheduled for May and for September 2010 (at Yarramundi). Registrations for the May event close on 16th April.

Click here for a flyer.

For further details and registration forms, contact or phone 4776 1397, or visit

"Carecareers" is online ....

....... and the TV advertising campaign was launched late last week. Check out the website here.

The website has been developed specifically for the not-for-profit disability and community care sector and should prove to be a great asset in addressing those harder to tackle candidate needs your organisation may have in the short to long term.

The service is part of the National Workforce Project initiated by National Disability Services and Ageing, Disability and Home Care (NSW Dept Human Services) and focused on attracting more talent to the disability and community care sector in NSW.

Here is a brief overview what has to offer you:
  • Centralised job board to advertise your current career opportunities
  • Talent pool to search for talent prior to paying to advertise a vacancy elsewhere – we hope to make that need a very rare one
  • 1300 637 637 number for organisation and candidate support
  • Talent Advisors to assist you in developing a best practice strategy to attract the “best fit” professionals
  • Forums for professionals to discuss issues relevant to work in the sector
  • Blogs providing an opportunity to exchange ideas with peers and industry champions
  • FREE service until August 2010!
carecareers' role is to make sure the initial stage of using this service is easy and trouble free for you and your colleagues so please do not hesitate to ask for assistance when needed.

Contact: Ben Cox
PO Box 601, Broadway 2007
ph 1300 637 637