Sunday, 31 January 2010

Images from our archives

2010 marks 30 years of supporting families for Down Syndrome NSW. The anniversary will be celebrated on several occasions during the year. Keeping Up with Down Syndrome NSW is delving into the archives to see where we've been.

This series of posts will feature the photos from our past Newsletter covers, as an online record, as we move into a new publication - a quarterly magazine produced in collaboration with Down Syndrome Victoria, to be called Voice, as it being developed from their current magazine of the same name. It will comprise a 24 page magazine with content of common interest, and each State will produce its own 8 page supplement specific to its own interests. The first issue of the new Voice is in production now and will be released in March 2010.

We have digital photographic records back to 1998. Prior to that we had bromides prepared on paper for printing, and before that even, we didn't have the resources to print photographs at all. The Newsletter was produced entirely in-house, including printing until 1989 when the printing was first out-sourced.

In our cover photo from the Autumn 1998 issue, twins Jessica and Rebecca were 13. Fast forward to our last NSW-only issue (Summer 2009 - 2010), and there are the twins again, on the occasion of Jessica's wedding in 2009 !

Saturday, 30 January 2010

More on TV campaign featuring Gerard and Maria

We posted about this TV advertising campaign promoting careers in disability services earlier, now we have some details of dates and the channels that will broadcast the ads:

The campaign goes to air on Sunday 31st January. It will be aired on Channel 7, 9, 10 in metro areas, SBS across the State, and Southern Cross Ten network in regional areas. It will be shown during many top rating programs, including new series.

On Sunday 31st you might spot it during these programs -

Channel 7: Weekend Sunrise (7-10 am) and Australian Open (Finals) between 7 and 11 pm

Channel 9: Weekend Today between 7 and 10 am; 1 hr special series between 11 am and 3 pm; One day cricket between 2 and 7 pm

Channel 10: House (New Series, Season 6) between 9 and 10 pm

And on Channel ONE and SBS between 11 am and 6.30 pm

What does it mean to have an intellectual disability?

What you always needed to know about intellectual impairment but were mostly never told

A one day workshop presented by John Armstrong of Foundations Forum

Date: Monday, 8th March, 2010, 8.30 am – 4.30 pm

Venue: North Ryde RSL Club, North Ryde

Cost: $125 per person (includes workshop package, morning/afternoon tea and lunch). Some discounts are available.

Registrations close on 26th February, 2010. Note: It is essential to register


Friday, 29 January 2010

Podcasts - good listening to go

The Cerebral Palsy Foundation has posted a number of "Parentwise" podcasts of information useful to and supporting parents of people with all kinds of disabilities (as well as some that are specifically about CP) - download those of interest to your computer, iPod or other MP3 player, and listen while and when you have time. The podcasts are free to download from iTunes - just search for "ParentWise"

The Parentwise series is "written and presented by people who have had many years working with children with a disability, these audiocasts cover such diverse topics as building networks of support, managing your child's behaviour, building their resilience, assistive technology options, respite, mealtime issues, your child's growing awareness, siblings, and looking after yourself and your partner."

A great innovation!

DS NSW 2010 Calendar - a few remain

We have a few 2010 calendars in stock, but they are running out fast!

You can order online at

or download an order form from the website to return by fax or post,
or call Angela, on 9841 4409

Thursday, 28 January 2010

Rozelle Neighbourhood Centre: Creative Leisure Classes

for people with a disability in 2010

Rozelle Neighbourhood Centre runs a variety of creative leisure classes for people with intellectual disabilities. The programme is open to people with all levels of ability. All classes are tutored by arts professionals and assisted by a trained support worker.

2010 Classes (Term 1 from 1st February) include:

  • Creative Arts

  • Music

  • Drama - Ever After Theatre Company

General information
When: Classes are run in 4 eight week terms per year.
Where: Rozelle Neighbourhood Centre, 665A Darling St, Rozelle.

Contact: Sue Johnston on (02) 9555 8988

Relationships and Private Stuff - workshops

Liz Dore, from Relationships and Private Stuff presents the following workshops to support people who experience barriers to forming relationships:

Friendship and Dating Skills (18 - 25 years)

Saturdays 13th and 20th February 2010,
Chatswood 10.30 AM – 1.30 PM

Friendship and Dating Skills (25+ years)
Saturdays 13th and 20th February 2010
Chatswood. 3 PM – 6PM

For all enquiries call 0416 122 634

Library Thursdays: Back to School

With another school year starting this week, whether your child is starting at a new school, in a new class or just a new year, you may be interested in viewing or reading some resources that can help make this year a good one.

Inclusion in Practice: Educating Children with Down Syndrome DVD from DownsEd
Let your teachers know about the availability of Downs Ed online publications (Reading, Maths, Education overview, Accessing the curriculum and others)

Other Inclusion resources (see last year's blog) and making inclusion work

The Pacer Center website has parent fact sheets that may come in handy. It is important to maintain good communication with your teacher. Use questions to find answers: A guide for parents of children receiving special education services gives suggestions to asking the right questions of teachers and administrators to find out what you want to know.

Other publications about education:

Other links can be found on our Learning, education and schooling pages on the DSNSW website

The library also has a variety of children's books that help explain Down syndrome to children or simply have characters in the books who have Down syndrome.
A list of these for primary aged children is available here and may be used to give to school libraries who would want to include these for the school community.

If other questions or needs come up that these resources don't cover or you'd like to borrow any resources from the library, please email us.

Have a great school year.
Gabrielle Clarke's Australia Day Ambassador's address to the Cowra (NSW) community is reported here, in the Cowra Community News.

Wednesday, 27 January 2010

World Down Syndrome Day 2010

Have a cuppa for 3-21 !

World Down Syndrome Day 2010 is being celebrated on Sunday 21 March. The date signifies the fact Down syndrome is caused by nothing more than an extra chromosome - 3 copies of the 21st chromosome (or ‘3-21’).

Now in its fourth year, T4321 (or ‘Tea for 3-21’) is a simple way everyone in the community can mark this day and celebrate the achievements of people with Down syndrome as well as raise a few useful dollars to support children and adults with Down syndrome in achieving their full potential.

This year we invite you to again join in the celebrations with us by holding your own ‘T4321’ or other celebration on or sometime around the 21st of March.

It’s as simple as putting on a Morning or Afternoon Tea at your home, school, workplace, club, church, local park or wherever you please, inviting friends, colleagues, neighbours, etc, breaking open the tim tams, baking some scones, or asking your local bakery to donate some lammies... put on the kettle, and you’re away. Of course, there are many other ways you can celebrate as well ..... you can get plenty of inspiration by checking the website: or contacting Priscilla for an event kit: or calling 02 9841 4404

Look out for these familiar faces .....

Peak body National Disability Services has developed a TV advertising campaign to encourage employment in the disability services sector. Watch out for the ads on TV in the coming weeks - Gerard O’Dwyer and Maria Short are featured.

DS NSW information events - 2010

Our program of information events for parents, family carers and professionals kicks off in February, with a parent event in Kiama:

Healthy Adulthood

A workshop for parents and family carers of adolescents and adults with Down syndrome

10:00am - 3:00pm
Saturday 20th February 2010

Kiama Leagues Club
139 Terralong Street, Kiama

Speaker: Jill O’Connor - Down Syndrome NSW

Registration closes 12th February 2010

Click here for a detailed flyer and registration form

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


An information seminar for families is scheduled for

10:00am to 3:30pm
Saturday 13th March 2010

Orange Ex-Services Club,
231-243 Anson Street, Orange

Topics to be covered are currently being decided in consultation with families from the region.
Seminars will be presented by DS NSW information and support staff


Events are also planned for Sydney and Tamworth in the first half of 2010 - dates and venues to be confirmed


For details about DS NSW information events for teachers and for other disability services professionals scheduled for 2010, please contact Siena O’Brien, phone: 9841 4411 or email:
and/or consult our website: under the “What’s On?” menu

Thursday, 21 January 2010

Library Thursdays: Down Syndrome: When to Worry About Mental Health and What To Do About It!

One of the most appreciated books in our library is Mental Wellness in Adults with Down Syndrome by Dennis McGuire & Brian Chicoine. It is a comprehensive book on mental health in people with Down syndrome written in a readable style. I was therefore surprised to see a new book on this topic come out so soon after Mental Wellness was published. Down Syndrome: When to Worry about Mental Health and What to Do About It! A Guide for Parents and Care-Givers by Robin Friendlander & Peter Johnson (NADD, 2009) covers a lot of the same ground as Mental Wellness... but it is much shorter (68p. vs. 431p.) and simpler. There is no index but it is laid out in a very straightforward way with many lists (such as "Four ways to stay mentally healthy" and "The signs of problem aggression") and summaries. There are many case study examples to illustrate the various topics and a few references at the end of each chapter for more information. There are a couple of different topics (e.g. "eating disorders") that are not covered in the same way in Mental Wellness and possibly some slight differences of opinion on some matters. I suppose the aim is to provide a book that covers the range of mental health issues in a more compact and easy way. I can see that there would be an audience for a much shorter read. Possibly the reason for the many late returns of Mental Wellness is due to its size. However, since almost everyone enthuses about the book (when they finally return it), I think that the thirst for knowledge in this area requires a thorough book. Having said that, this thirst would probably also invite books from other authors such as this one that may cover exactly the topic you are interested in, presented in a useful way.
If you would like to borrow this book or any other, email us or phone.

Other information on this topic:
NDSS: Mental Health and Down Syndrome(includes children in this article whereas the books mentioned above focus on adults and adolescents)
Len Leshin's DS Health website has many articles on health for people with Down syndrome.

Tuesday, 19 January 2010

Special Olympics - National Games, Adelaide 2010

With the Special Olympics Australia National Games scheduled for Adelaide in April, we will hear more about individual NSW athletes in the coming weeks, and many of them will be people with Down syndrome, like these who have featured in their local press:

Christopher Bunton, gymnast, from the Mt Druitt Standard, and from the Penrith Star

Athletes from The Hills area, from the Northern News
These Special Olympics Regions showcase their Nationals representatives on their own websites:

Monday, 18 January 2010

Gabrielle Clarke: Australia Day Ambassador

Gabrielle Clarke has been an Australia Day Ambassador for several years. This year, she will give her address in the Western NSW town of Cowra. Gabrielle is a keen and very active sportswoman, and will participate in golf at the Special Olympics Australia National Games in Adelaide later this year.

Gabrielle talked about her busy year in 2010 with the Cowra Community News, and there are more detials about her achievements here, on her official Australia Day Ambassador page.

Friday, 15 January 2010

Debating "cure" and "mitigation": Michael Bérubé weighs in

A recent research report from Stanford has reignited an ongoing debate about the potential for curing Down syndrome the implications of such a possibility (it's never very far beneath the surface). Michael Bérubé has weighed in with a response to a New York Times article, and particularly to the comment it has generated. It a lengthy post, and has itself generated a good deal of comment - well worth the time to read if you up for a thoughtful discussion that is raised regularly. Here's a sample:

....... When I’m in one of my black-humor moods, the kind into which I was plunged last night upon reading that comment thread, I tend to say, “the reason all the T-shirts say ‘RACE FOR THE CURE’ is that ‘RACE FOR THE REASONABLE ACCOMMODATION’ doesn’t fit neatly on one side of the shirt.” By which I mean, of course, that the discourse of the cure is everywhere, and the discourse of reasonable accommodation, so far as I can see, is understood only by those people who already know something about disability, US disability law, ramps, kneeling buses, in-class paraprofessionals, and job coaches. It’s almost like a kind of sign language, spoken only by those who are already disability-literate.

Click here to read it in full.

Just back from an expedition ..... a short summer read

This article published a few weeks ago in the UK Daily Telegraph is a nice summer read. A father describes an ordinary outing with his daughter - it might the sort of ordinary event that a new parent would find it difficult to imagine in the rawness of a new diagnosis - but the ordinary can become extraordinarily welcome.

Thursday, 14 January 2010

Library Thursdays: Onward Crispy Shoulders:

Onward Crispy Shoulders! An Extraordinary Life with an Extra Chromosome by Mary Haakenson Perry is a story written by the sister of a man born with Down syndrome in 1945 in Alaska.
It is a great addition to the personal story section of the library and will be of interest to people who like to read about the lives of other families with a member with Down syndrome in other places and times. This book is both funny and sad and the author gives a great look into her brother Jim's life at a time when schools did not think there was a place for "children like him". Nor did the doctor even tell Jim's parents of the diagnosis until he was two and a half and even that was delivered indirectly. However Jim benefited from being the eldest of 7 children and from parents who believed he could learn. His sister relates the wonderful life he had including the highs and lows in a humorous and loving way. I also enjoyed the description of life in a fairly remote part of Alaska. This setting seems only to have improved Jim's life as he was very busy with all the jobs needed to live on a homestead. Sadly Jim develops Alzheimer's Disease and the author relates the progress of the disease from their bewildered point of view.
I recommend this book if you'd like to read about how life was in the 50s and 60s in rural Alaska with a child with Down syndrome or you just enjoy any personal story.
Related links:
Please email us if you'd like to borrow this book or anything else.

Wednesday, 13 January 2010

Few carers abandon paid work, says study

A new study reported by Adele Horin in today's Sydney Morning Herald challenges previous profiles of carers, by looking at the employment histories of individuals over time rather than comparing many carers at a single time.

.... The study, by Andrew Leigh, professor of economics at the Australian National University, found that care-giving has little effect on life satisfaction and only a small negative impact on employment. Other reports have found huge effects.

Read the news article online here, and the full text of the research report here.

Interview with The Specials director

If you like The Specials, you will be interested in this interview with the director, Kathy Lock, posted by WheelchairPride yesterday.

Tuesday, 12 January 2010

Web seminars from DownsEd

Down Syndrome Education International is gearing up for a substantial program of web-based seminars to take its training program to a wider international audience. The current program covers a range of topics, including development and speech and language, and a very reasonably priced.

After the end of February (they are aware of our summer holiday habits!), new times will be introduced to be more convenient and accessible for Australia and New Zealand.

Visit the website and online store for information about the format, content, cost, times and booking process.

Monday, 11 January 2010

New, from Ozzie's Dad: The Phenomenal, Fabulous, Fantastic Ds BlogBlog!,

Daniel Niblock has done it again. He's created a new blog, The Phenomenal, Fabulous, Fantastic Ds BlogBlog!, subtitled "A Compendium of Wisdom", posts that

....... originally appeared on other blogs – they were written by parents of children who have Ds. These particular posts have been selected for inclusion in the Compendium of Wisdom because they are exceptional – the best of the best. They contain hard-won knowledge about pain and love, pearls of truth as valuable as any equation contained in any parchment that ever graced the shelves of the Library of Alexandria.

Sunday, 10 January 2010

Child with Down syndrome receives liver transplant

Until very recently, children with Down syndrome who had conditions that required heart and liver transplants have been denied transplants. Recently Penny Green published the story of British child who has had a heart transplant (here), and now from the US comes news of a 12 yr old girl with DS having a liver transplant.

Thursday, 7 January 2010

Library Thursdays: New Zealand Down Syndrome Journal & UK Down's Syndrome Association Journal

A couple of months ago we mentioned other newsletters from around Australia that we have in our library. We also have many from other countries. The latest issues of the New Zealand Down Syndrome Journal (Summer 2009) and the UK's Down's Syndrome Association's Journal (Autumn/Winter 09) just arrived in the library and have many interesting articles. Neither newsletter are available right now online, but both the UK DSA and NZDSA provide some past newsletters and articles on their website.

In the New Zealand summer issue, there are many personal stories from members. These include stories about playing on soccer teams, going on a challenging school camp, sleep problems, leaving home, school, first year and family life.

Included are the following articles:
  • Down Syndrome and Dementia by Diana Kerr (reprinted from Voice Winter 09)
  • Managing Sleep Problems in Children with Down Syndrome by Christel van Baalen. (Looks at behavioural as well as physical sleep problems)
  • Sensory Processing and Disorder in Down Syndrome compiled by the editors. (Lists all the common sensory problem areas and describes the signs of each one, how to imagine what it is like and briefly discusses what to do about it.)

And Down Write Brilliant! A magazine for and by people with Down syndrome Vol 2. There are also reviews of resources, the Proloquo2go used with the iPod touch and Swimwear.

It is quite a nice newsletter with much that would be of interest to New South Wales families.

The articles included in the UK DSA's Journal are:

  • Tell it right, start it right (about telling parents the diagnosis of Down syndrome)
  • Down's syndrome and autistic spectrum disorder/dual diagnosis
  • Ask IPSEA: Transfer from Primary to Secondary school
  • Charlie moves to a home of his own (an article about a 25 year old man with Down syndrome and OCD who successfully moves out of his parents' home.)
  • Puberty and adolescence
  • Through the eyes of Chris Sampson by Charlotte Nutting who worked with a young man with Down syndrome as part of her nursing and social work degree.
  • Whatever happened to Elizabeth Joy? by Caroline Philps (an update to the life story depicted in the books: Elizabeth Joy: a mother's story and 'Mummy why have I got Down's syndrome?' (available from our library))
  • Otto wants to go to Amsterdam by Lucy Baxter
  • Melody by Rosie Cross

As well there are personal stories and local news.

There are many other newsletters from other countries in our library. Many are older but we have the latest newsletters from the US NDSC, Canadian DSRF, Ireland, Argentina (in Spanish) and Germany(Leben mit Down-Syndrom in German).

If you'd like to read any of the articles listed above or borrow anything else, email us or call.

Sunday, 3 January 2010

Vintage by the Sea
Shabby Chic Market

9 am - 4 pm, Sunday, 17th January 2010

Cronulla Masonic Hall, 43 The Kingsway


Entry by donation(Proceeds to Down Syndrome NSW)

Browse and buy from our stalls ..... furniture, vintage fashion, collectibles, garden and homewares

Enquiries: Robyn 0425 243 520

Friday, 1 January 2010

NZ teenager with Down syndrome passes licence test

From time to time we are asked whether people with Down syndrome "can" drive - the answer is that we know of a number who do, some who perhaps can but choose not to, and many who do not. Here is a news report from Nelson, New Zealand about a young man, Clayton Marr, who recently gained his provisional licence, after gaining valuable experience on his family's rural property.