Address details

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

Saturday, 31 January 2009

Ready, Set, Go - Joe's skiing !

This contribution came with the heading "warning - proud Dad story"! The photos might take a little while to load, but they are worth waiting for.

We spend a lot of time at the dam skiing. It has long been a hope of Maree and I that he be able to participate in the activities at the dam. Over previous summers we have been cajoling Joe to go on the biscuit which he did and loves.

This summer we thought we would encourage him to have a go at water skiing so we started getting him used to trying the skis on and standing in the water and pulling him along. Yesterday after doing this he said he wanted to go behind the boat so we jumped at the opportunity (even though it was rougher than I would normally start a beginner off in) and gave him a go and he got up !!!

He went about 20 meters and then fell off. It was a bit rough. We thought he might freak a bit but he asked for more skis. He then had about 12 -15 goes averaging about 50 metres with the longest distance being about 80 metres.

It was quite emotional for all of us and Joe just loved it! Joe turns 9 in 2 weeks and I really thought this would be something that he would do in his teens.

We are looking forward to our next trip to the dam. He says he wants to go over the wake and go on 1 ski like big sister Tess. I think we’ll stick to the 2 for a while.

I just wanted to share this achievement with people who would understand the enormity of it. It has taken a lot of work not just this summer or the previous one, but in the time spent at Early Intervention getting those motor skills happening.

We have very proud parents and sisters and one mad keen skier who also wants to drive the boat!!


Ready ....

Set ......


..... Gone.

Friday, 30 January 2009

AFL "Achieving Goals Actively" – NSW dates and venues confirmed

The AFL Foundation and the 2009 AFL Umpires Roadshow in association with the Down Syndrome Australia Network present Achieving Goals Actively for kids with Down syndrome. See this post for program information.

NSW dates and venues for 2009 have now been confirmed:

Western Sydney
Monarch Oval, 416 Fields Road, Macquarie Fields
4:45 - 5:45 pm, Monday 16th February 2009
RSVP: 2 February 2009

Maher Oval, Fernleigh Road, Wagga Wagga
4:45 - 5:45 pm. Tuesday 24th February 2009
RSVP: 9 February 2009

The Reg Bartley Oval, Waratah Street, Rushcutters Bay
4:30 - 5:30 pm, Tuesday 17th March 2009
RSVP: 3 March 2009

To RSVP or for more information please call 1300 658 873 or email

Is your child eliglible for Funding Support in a NSW public school mainstream enrolment?

In preparation for planned discussions with the NSW Minister for Education and Training, we are interested to know how many children with Down syndrome in NSW have been classified as having a mild intellectual disability, and are therefore ineligible to apply for Funding Support in a mainstream enrolment, or for enrolment in a support class (at least until they are 8), in a NSW public school.

Our current understanding is that these students do not have a current Disability Confirmation Letter (a DET document required for Funding Support applications to proceed), and that for at least some students, lack of individually funded support is a real problem for both the student and the classroom teacher.

Funding Support is not a generic term, it is a particular funding stream available to students enrolled in mainstream classes in NSW public schools, who meet particular eligibility criteria, and for whom funding is granted on an individual basis over a period of time.

Please call us on 02 9683 4333, or email to if your family is in this situation, whether it is a problem for your child or not, so that we will be better prepared to represent the real concerns of families.

Thursday, 29 January 2009

Grace's first day at school

Today was the first day of school for most kindergarten students enrolled at public schools in NSW. Like most "kinders", Grace was excited, and delighted with that brand new uniform.

She posed for a few photos, said goodbye to her very proud parents, and walked into school to embark upon the adventure of her formal education .... a scene repeated all over the state.

Good luck Grace, and all of the others "kinders" who took that big step today (especially those with Down syndrome)!

Playing to Their Strengths: a workshop for teachers of children with Down syndrome.

While children with Down syndrome experience a variety of challenges in learning, they also bring strengths that can be harnessed by appropriate support, and an understanding of how having Down syndrome might impact upon a child in a school environment.

Down syndrome NSW will hold three workshops for primary school teachers from all school settings, throughout March:

Wyoming (Central Coast):
9.30 am - 3.00 pm, Wednesday, 4th March 09

9.30 am - 3.00 pm, Friday, 20th March 09

Coffs Harbour/Far North Coast area:
9.30 am - 3.00 pm,Friday, 27th March 09
Venue to be confirmed. Flyer and registration form will be posted to our website shortly, under the "What's On?" menu, or check this blog regularly.

Library Thursdays: Love you to pieces

New to the library this week is a book not strictly specific to Down syndrome, but definitely of interest. Love You to Pieces, edited by Suzanne Kamata, published by Beacon Press, Boston, 2008, is a collection of stories written by writers about caring for their children with special needs.
Michael Berube (who wrote Life as We Know It ) contributes 3 stories in "Great Expectations" about his son, Jamie, who has Down syndrome, and the assumptions, expectations and realities of his academic abilities and thought processes. Although Berube's is the only contribution about a person with Down syndrome, all the pieces are well written and most involve experiences to which a parent of a child with Down syndrome can strongly relate, be it communication difficulties, views of others, friends' attitudes, dealings with social workers or therapy sessions.
The writing is nice to read and being a collection of stories, it is easy to just dip into when you have a moment to read.
To borrow this book or anything else from the library, click here.

By the way, Michael Berube has a blog which occasionally talks about Jamie amongst other things. One interesting blog was about Peter Singer and had a follow up to this here.

Wednesday, 28 January 2009

Research observation: DS appears to protect against a common brain tumour in children

Another instance of differences occurring in people with Down syndrome that could help to advance the understanding of a significant medical condition has been published.

Researchers in Paris and Sydney have observed that medulloblastoma, a common brain malignancy in children, has never been reported in a person with Down syndrome of any age. Their letter to the editor, published in Neuroepidemiology online (with free access) on 17th December 2008, and in print in early 2009, describes the phenomenon as a "medical enigma". They note that closer study of Down syndrome could shed light on the development of medulloblastoma and other tumours.


D. Satgé , C.H. Rickert , A Medical Enigma: Persons with Down Syndrome Do Not Develop Medulloblastoma, Neuroepidemiology 2009;32:164

Monday, 26 January 2009

Online magazines and newsletters

Many organisations around the world provide on-line editions of their periodicals. Here are some of our favourite sources of reliable information:

Down’s Syndrome Scotland News, Summer 2008
The main feature in this issue is first hand stories from three young women with Down syndrome who have recently moved from their parents’ homes, two of them accompanied by a short commentary from their families.

Down Syndrome National Congress (US
NDSC does not publish an online edition of Down Syndrome News, but a selection of individual articles is available online here.

Down Syndrome Online
Down Syndrome Education International publishes all of its material, including Down Syndrome Reasearch and Practice, and past issues of Down Syndrome News and Update (published until 2006) on the Down Syndrome Online website

NSW Dept Ageing, Disability and Home Care (DADHC)
DADHC Connections is a quarterly magazine for DADHC stakeholders.

An e-edition of the Down Syndrome NSW quarterly Newsletter is published on our website.

Still no images !

Sunday, 25 January 2009

Weekend reading from the blogosphere: 3 baby boys

This blog is prepared in Blogger - and for several days it has denied us access to images - we do hope this bug is fixed very soon!

It's a long weekend here, as Australia Day (26th January) falls on a Monday. It's the last weekend of the summer holidays - the NSW school year starts on Tuesday for teachers, and students start enrolling at and attending public schools from Wednesday. Pretty much everyone will be back to work and normal routines next week. Before life gets into the usual hectic round, here are three blogs from families of baby boys with Down syndrome (all born in July 2008!) - some very good sense, thoughtful reflections, lots of lovely photos and some very cute videos:

Down with Oz has nothing to do with Australia! Ozzie is a very cute baby whose Dad Daniel blogs about his progress and their relationship from time to time. His 30th December, 2008 video of Ozzie laughing out loud will bring a smile, and we recommend the "Three months" post too - although it's all good if you have time.

Baby Finn's mother, Lisa, has posted a short video of his early vocalisations at Finnian's Journey, and some encouraging moments with his older siblings, as well as musings on daily life with six children.

The Hill Family of North West Arkansas have a little boy, John, with Down syndrome - his Dad blogs about many aspects of family life, including early intervention. Jay Hill is a physical therapist(physiotherapist), and in this post from 20th December 2008 he explains the importance of reducing compensatory movements and promoting the most effective use of muscles and joints, rather than pushing for "on time" milestones. He also shares lots of photos and family moments throughout his blog.

Saturday, 24 January 2009

DownsEd Shop now online

Down Syndrome Education International has launched its on-line shop, with a offer of a 20% discount for orders over 50 pounds UK, until 28th February 2009. On-line ordereing will make international purchases much easier.

The range includes DVDs, books and the highly regarded Down Syndrome Issues and Information packages. DownsEd's own products and selected items from other publishers are available.

Purchases can be made in three currencies - UK pounds, Euros and $US, by credit card.

The timing is excellent for the start of the 2009 Australian school year. Well worth a bookmark and regular visits to check the range.

Friday, 23 January 2009

Creative Leisure Classes in 2009 for people with intellectual disabilities: Rozelle

Rozelle Neighbourhood Centre (in Sydney's inner west) 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.

Classes are run in 4 eight week terms per year and cost $60 per 8 week term.

Creative Arts
Monday evenings 6-7.15pm Ages 18+
Colour, tactile experience, art, movement, sound and rhythm.This class is open to people with all levels of ability.

Monday night 7.30-8.45pm Ages 18+
Drumming, singing, improvisation, directing music, group work and solo work.The music class is popular with people with all levels of ability.

Tuesdays 5-6.30pm
Ever After Theatre Company Workshops Ages 14-25
Drama skills, voice work, movement, character work, play building and performance making. This group is suitable for people who have some experience with drama.

Tuesdays 6.30-8pm Ages 18+
Movement, voice, drama skills exercises, story building, character work and play-making. Absolute beginners to drama welcome.

If you would like to know more about the classes would or join a class in 2009 please contact:

Sue Johnston
Rozelle Neighbourhood Centre
Phone: 9555 8988

Leisure Options is funded by the Department of Ageing Disability and Homecare under their Disability Services Program
  • Thursday, 22 January 2009

    Georgia's Smile: in song and pictures

    Phil Davidson is a highly talented, professional singer/songwriter, born in Ireland, raised in Australia where he lives with his family, including 12 year old Georgia who has Down syndrome.

    You might have heard his song, Georgia's Smile, from a download on Phil's website, or on ours. Now Phil has posted a photo montage backed by the song on You-Tube. Click here:

    Georgia's Smile is one of the tracks from his recently released album, Edge of it All, available from iTunes, or from music stores nationally, including ABC shops.

    Library Thursdays: Back to School, Inclusion Resources

    The new school year starts next week. The library has just received a great book to help teachers and parents help students succeed in an inclusive setting. The book is Win-win Advice for the Inclusive Classroom by Barbara Tien and Claire Clelland from the PREP Program in Canada. Tien and PREP produced another of our excellent books for inclusion: Effective Teaching Strategies for Successful Inclusion: A Focus on Down syndrome. Win-Win is written with advice for teachers and examples from past experiences. It covers how children with Down syndrome learn best, how to deal with behaviour issues, sensory integration issues and much more. 

    Other recommended resources in the library are:

    From the Downs Ed group: Inclusion in practice DVD: Education children with Down syn
    drome at primary school. 

    and Accessing the curriculum: Strategies for differentiation for pupils with Down syndrome by Gillian Bird, Sandy Alton and Cecilie Mackinnon (which is also available online at

    Plus their many books on Reading, Maths, Memory development and other specific educational books.

    And from the Topics in Down Syndrome Woodbine House series:

    Classroom Language Skills for Children with Down Syndrome by Libby Kumin. The book deals with helping children with Down syndrome navigate the curriculum and how it is worded as well as covering how to differentiate the curriculum.

    Have a great year!
    (To borrow any of these resources, just email us.)

    Wednesday, 21 January 2009

    Disabilities and dementia: Diana Kerr, UK expert to visit Australia

    Alzheimer’s Australia NSW is bringing Diana Kerr to Sydney for a one day seminar.

    Monday, 6 April 2009
    (venue to be confirmed)

    As the population ages the number of people with disabilities and dementia will increase. We know that older people with Down syndrome are uniquely vulnerable to developing dementia of the Alzheimer type. Service providers, families, doctors and social workers need to be equipped so they can develop appropriate interventions and coping strategies.

    Diana Kerr is a leading figure in this area in the UK working at Edinburgh University. She is the author or co-author of several publications including:

    • Down Syndrome and Dementia, A Workbook for Staff

    • In the Know: Implementing Good Practice

    • Understanding Learning Disability and Dementia - Developing Effective Interventions

    Please email to register your interest in this timely and important seminar.

    Tuesday, 20 January 2009

    World Down Syndrome Day: 21st March

    World Down Syndrome Day 2009 is being celebrated on Saturday 21 March. The date signifies the fact Down syndrome is caused by the presence of an extra chromosome - 3 copies of the 21st chromosome (or ‘3-21’) - in each of the body's cells.
    World Down Syndrome Day is celebrated in many ways around the world. Some events are simply celebrations of the people with Down syndrome in our lives and promote acceptance of diversity. Others combine celebration and an opportunity for fund-raising to benefit people with Down syndrome.

    Now in its third 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. In the two previous years we have raised a combined $60,000+ and hope to take that collective tally over $100,000 this year.

    This year we invite you to again join in the celebrations with us by holding your own ‘T4321’ 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 clicking here and looking back over last year’s celebrations.

    To receive your 'T4321' Kit, or to advertise your World DS Day event, just contact Priscilla on, or 9683 1900 or 0402 503 885.

    Information about events to mark World DS Day will be posted here as it is received.

    Click here for Down Syndrome International's World Down Syndrome Day website.

    Joan Medlen, of Phronesis Publishing is has announced four "webinar" events to mark World Down Syndrome Day, on nutrition, food, healthy eating and lifestyle, for those with a family or professional interest in people with Down syndrome of all ages, from infants to adults. Joan is a world renowned expert practitioner, writer and presenter on nutrition and healthy lifestyles for people with Down syndrome. Phronesis is located in Portland, Oregon, so check the time differences implications for "live" participation in these events - they will be worth getting up early, or staying up late for!

    Monday, 19 January 2009

    How many? Current statistics about people with Down syndrome in NSW and Australia: last updated 29/10/2013

    We receive regular enquiries about how many people with Down syndrome live in NSW, or Australia, and about the numbers of births. There are no really reliable current figures on prevalence (the number of people living in NSW at any given time). It is a challenge to calculate, because Down syndrome has only been a notifiable condition (at birth) for about ten years or so, and because we don't have reliable records of deaths. At the same time, life expectancy continues to increase, and has changed rapidly over a couple of generations - that makes the sums hard!

    So estimates of prevalence are currently based on birth incidence and estimates about how many people live to each each age. We think that means there are probably about 6000 people with DS living in NSW, and around about 22,000 across Australia. If you think this is wrong, let us know what you think it should be, and how you got there.    See the editor's note below, from 29/10/2013


    Edit 20/2/2013: 
    NSW Mothers and Babies Reports 1996 - 2010 are currently individually linked from this NSW Health web page.

    The earliest statistics accumulated are from 1990 (in the 1996 report) - some of the earlier statistics might not be particularly reliable. Notification procedures were improved from 1992. The reports are similar, but every now and again some extra data appears, such as the 2001 statistics which include a breakdown of terminations by the type of prenatal diagnostic procedure.

    Edit 20/2/2013: 
    National data are collated by the Australian Institute for Health and Welfare, which has published them online and in print from time to time, as Congenital Anomalies reports - but they are currently listed as 'not reported on' (February 2013).

    The most recent AIHW data on the birth incidence of Down syndrome is a rate of 11:10,000 given as the rate of Down syndrome occurring among infants at birth 1998 - 2003, in the report, A picture of Australia's children 2009, Part ll: How healthy are Australia's children, p 11 - table of indicators. In Section 7, Congenital Anomalies, Table 7.1 (p 29) gives rates and numbers of babies born with Down syndrome in indigenous and non indigenous populations (no significant difference), and by geographical location with commentary on differences, and notes that termination because of Down syndrome occurred at more than twice the birth rate (25:10,000).

    Should you be interested in predicting trends, have a look at the recent Danish study mentioned in this blog entry, reporting a 50% decrease in births with the implementation of a national prenatal screening strategy for all women that had a high uptake rate. We haven't seen that here yet, because we do not have a government funded national strategy for universally offered prenatal screening. In NSW, for example, NSW Health funds nuchal fold screening for public obstetric patients only, who are over 35, or have an "indicative history".

    Edit 2/9/2013:
    US population prevalence estimates (of the number of people with Down syndrome in the whole US population) have recently been revised down.  The title of Mark Leach's blog post about the new estimate is a little misleading, in that of course it was the previous estimates that were out, not that people with Down syndrome have actually 'gone', as he acknowledges.
    GONE: 150,000 fewer people with Down syndrome in the U.S.Mark Leach, Down Syndrome Prenatal Testing, 26th August
    The estimated number of people living with Down syndrome in the United States has been 400,000. This number has now been reduced by almost 40 percent. The number 400,000 was based on birth estimates: take whatever the birth estimate was, apply it as a percentage to total number of births and total number of lives, and 400,000 was the number that was arrived at. Last month, the Journal of Pediatrics published online a study that revises this estimate based on two key factors. The new study has already resulted in a revision on the Centers for Disease Control website, which lists the highlights.

    Edit 29/10/2013:
    Down Syndrome Australia has put together the fragmented information that currently exists to provide an evidence based estimate of the number of Australians with Down syndrome.

    We believe the population to be over 13,000 and growing. As there is no national, state or territory register of Australians with Down syndrome (with the exception of the IDEA database in Western Australia) this number cannot be rigorously confirmed. However, Down Syndrome Australia is confident that our collation of what little data is available is accurate. You can read the summary here

    Sunday, 18 January 2009

    Achieving Goals Actively: AFL sessions for kids with Down syndrome

    AFL Foundation and the 2009 AFL Umpires Roadshow in association with the Down Syndrome Australia Network present the Achieving Goals Actively program.

    Fun one-off sessions are held nationally for all people with Down syndrome (school age and older): 40 minute sessions with AFL Umpires promote the benefits of physical activity and the importance of a healthy lifestyle - all while having fun!

    Sessions include:

    • warm up & aerobic exercises
    • ball skills, stretching and more!
    • Achieving Goals Actively give-aways for participating children with Down syndrome!
    • parents and siblings are welcome to join in the fun

    NSW events for 2009:

    • Western Sydney - 16th - 18th February 2009, RSVP: 2nd February 2009
    • Wagga - 23rd - 25th February 2009, RSVP: 9th February 2009
    • Sydney - 17th - 19th March 2009, RSVP: 3rd March 2009

    To RSVP or for more information please call 1300 658 873 or email

    Click here for a flyer.

    Click here for a news item about the program.

    Saturday, 17 January 2009

    UNSW survey about vision in children and adolescents with Down syndrome

    Daniel Chui is a Ph D student at the School of Optometry and Vision Science, at the University of New South Wales. He has been studying aspects of vision in children with Down syndrome, and many of our members and their children have participated. He needs input now from families of children and adolescents with Down syndrome, aged 8 - 18, for his final survey. Those with and without vision vision impairment are invited to participate. You can complete the questionnaire on-line, by clicking here.

    For further information about vision and vision impairment in children with Down syndrome, we recommend the website of the Down Syndrome Vision Research Unit - Cardiff University (Wales), for research reports and information brochures written for parents, teachers and eye care professionals. Information includes recommendations about print sizes for students with Down syndrome, and simulations of vision impairments that might exist even when vision is apparently corrected.

    Now don't forget that survey!

    Friday, 16 January 2009

    Children with Down syndrome in East Timor - how can we support them?

    We know that East Timor (Timor-Leste), our nearest neighbour, has been torn apart by events over a number of years, and that the general standard of living and services are now well below that enjoyed previously in East Timor, and way below those we enjoy in Australia. Many Australians have provided aid in ways that most of us will never hear about, but most of us probably have little idea of what every day life is really like there now.

    Karen is a midwife, working in a busy NSW hospital. When she heard that two of her colleagues were travelling to East Timor during 2008 to offer hands-on education to local professionals and villagers to increase their skills in supporting women giving birth, she decided to take some leave, and join the expedition. Their employing hospital and local community supported their efforts by granting them leave, through fundraising and donating supplies for the East Timorese clinics they would visit during their week long stay. They knew that conditions would be spare, and luxuries non-existent, but they were still surprised at just how little the people of East Timor have – but very impressed by their ingenuity, eagerness to learn and their drive to take responsibility for long term changes.

    Karen found the men and women she worked with very welcoming, and willing to care for each other. Clinic patients walked for hours to the nearest clinic, operating in a grass roofed hut, then waited patiently for their turn to be seen. The clinic finished when the last patient was attended to, no matter the hour.

    Karen found the differences between suburban Australia and rural East Timor most striking when she met Margaret Hall, an Australian Catholic aid worker, living with her husband David, in the village of Atabae. Margaret is a midwife and early childhood nurse, running clinics for mothers and babies, creating solutions to the many problems encountered by utilising local resources (that contribute to the local economy) wherever possible.

    And among her charges, Karen found that Margaret is caring for two little boys who have Down syndrome. They are both four, but very small for their age. Neither of them is walking independently yet, and one is not yet taking solid food. Basic early childhood services are rudimentary at best. Early intervention is unknown … speech therapy, occupational therapy, physiotherapy, early childhood special educators the stuff of dreams.

    The whole population is malnourished, with little access to health care and these little ones suffer the consequences more than most.The local custom is for mothers to carry babies in slings until they can walk, and of course, most children begin climbing out of the slings (which have many other uses!) as their skills develop. There is little opportunity for safe “floor time”, as most houses have no floors. There is little, if any furniture for babies to practise pulling up to stand and to cruise around. Toys are made from whatever is to hand – often not much.

    You can perhaps imagine that Karen, as the mother of a healthy, strapping young man of 17 who has Down syndrome, was moved to “do something, anything”, for these children. Karen and her colleagues are continuing fundraising and gathering supplies for a return visit in 2009, they hope for a month this time.

    She is considering taking her son, so that he can teach the local parents that their sons can learn, and can take their place in their community.

    Karen contacted Down Syndrome NSW (where she is a long term member) to see if we could help locate information that Margaret can use to teach both the boys’ parents and other community members ways that they can maximise developmental opportunities within the everyday constraints of village life. Post is very unreliable, so online resources are more useful. Margaret and David have electricity at their house for part of each day, and have access to a TV and DVD player. They travel to Dili periodically where they access email and the Internet.

    So we’ve come up with a plan to which DS NSW members and others might be interested in contributing. We have sent Margaret a copy of the DVD “Down Syndrome: the first eighteen months”, from which she will extract information and strategies they can implement. Down Syndrome Education International has agreed to contribute two copies of each of their early childhood DVDs. We have prepared lists of links to information that Margaret is downloading and editing for local use. We will keep in touch by email, to see what is needed next.

    But what would be really useful now is a laptop computer that they can use in the outreach clinics, as well as for information storage and retrieval, in their home village. Margaret has initiated “working lunches” with local women to teach child care skills, and has a group of volunteers ready to work with the two little boys with Down syndrome. The laptop will be a teaching resource for the volunteers. Others will translate written material into the local Tetun language. Karen and her colleagues will get the laptop to Margaret.

    If you would like more information about the midwives group in general, or would like to contribute to providing a laptop, or if you have ideas about other ways to help, please contact Jill O’Connor at Down Syndrome NSW, on 02 9683 4333, or email and we will put you in touch with Karen.
    You can read more about Margaret and David and their colleagues' work in the Atabae sub-district of East Timor at the website of Friends and Partners of East Timor (Inc), the Brisbane-based organisation that supports them.

    Thursday, 15 January 2009

    Library Thursdays: Dementia Resources

    The link between dementia and Down syndrome is well documented see Alzheimers Australia. Changes in the brains of people over 40 who have Down syndrome are similar to the changes in people who have Alzheimer's Disease. However, not all elderly people with Down syndrome have clinical Alzheimer's. For this reason, it is necessary to be aware of the signs of dementia as well as doing health checks to determine other possible reasons, if some of those signs occur. The library has many resources to help understand dementia and the issues involved. Recently we have acquired a CD-ROM, 2 Young 4 Dementia, produced by Alzheimers Australia ACT on meeting the needs of people with younger onset dementia (people under 65). There is a section on people with Down syndrome, as well as other general issues relating to younger dementia patients. There are other new resources on DVD from the UK (Down's Syndrome & Dementia: Philosophy of Care, Fighting for Andrew, and Forget Me Not) some is a bit dry, but they do explain factors involved in dementia.

    Other resources in the library relating to dementia are:

    Mental wellness in adults with Down syndrome by Dennis McGuire & Brian Chicoine This excellent resource on emotional and behavioural health in adults (and adolescents) with Down syndrome includes a section on Alzheimer's--the symptoms, things to check, and care and activities for a person with dementia.

    Down's Syndrome and Dementia Workbook for Staff (Down's Syndrome Association UK)-- a workbook with the stages and signs of dementia, various care strategies and places to record the information.

    Down's syndrome and dementia resource pack for carer and support staff by Karen Dodd and Vicky Turk Information for carers focussing on practical day to day issues--how to maintain skills, understanding changes in behaviour, etc.

    UK Scotland also have some booklets to download on dementia.

    There are also books and a kit in the library for people with intellectual disabilities to understand dementia and what it means for their friends.

    Click here to email us to borrow any of these resources from our library.

    Wednesday, 14 January 2009

    DS NSW seminars in Newcastle, February 2009

    Four seminars for parents and professionals will be held 26th - 28th February 2009 at

    Quality Hotel Apollo International
    290 Pacific Highway, Charlestown

    Workshop 1: Communication skills in young children with Down syndrome
    This workshop is open to parents and family carers only.

    9.30 am – 2.00 pm, Thursday 26th February 2009

    Workshop 2: Early Childhood Update
    - a workshop for Early Childhood professionals working with children aged 0 – 8 yrs who have Down syndrome
    9.30 am – 12.30 pm, Friday 27th February 2009

    What’s Next?

    Two separate workshops for parents of pre-adolescents and young teens with Down syndrome. Adult siblings welcome – no charge.

    Both of these events will be held on Saturday 28th February 2009

    Workshop 3: Puberty: the lead-up, onset, the early teenage years
    10:00am – 12:45pm

    Workshop 4: Preparing for high school
    1:30pm – 4:30pm

    Choose one or both workshops, with or without lunch.

    Click here for a brochure and a registration form for any of the workshops.

    Enquiries to Siena: or ph. 9683 4333

    poss abilities - the adventure of a lifetime

    One Canadian family is having a great sailing adventure, and have chosen to share it anyone interested around the world, through their blog, poss abilities. From their bloggers' profile:
    We are new sailors, from Mono Centre, Ontario embarking on an exciting family adventure.
    Shirley and Dave turn 50 this year and we think this is a good way to do it! Christopher, who has Down Syndrome, will turn 16. He is looking forward to "boat schooling" on this adventure. He also hopes we come across as many trains as possible!
    We departed from Burlington Ontario on September 16, 2008 and plan to return in the summer of 2009.
    When we contacted Shirley, Dave and Christopher for permission to post a link and use their photo, they replied:
    Great to be connected with people on the other side of this small planet ..... Christopher has been having a great time and is doing a marvelous job as a full crew member. The learning he is getting is tremendous.
    They hope that the blog will be encouraging for other families, especially those with babies who might be concerned about the possibility of their plans and dreams being limited by raising a child with special needs.

    Tuesday, 13 January 2009

    Chris's post: Ranting

    Chris, at Mothering By the Seat of My Pants, has been Ranting - a good post about not having to meet anyone else's expectations of your feelings about having a child with Down syndrome. The comments indicate that she has struck a chord with others.

    Did the good professor really say this? Apparently not!

    What would we lose if children with autistic spectrum disorder were eliminated from the population?".

    "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent.

    "It is a different kind of condition."

    Attributed to Professor Simon Baron-Cohen, Director of the Autism Research Centre, Cambridge University, UK in today's major Melbourne newspaper, The Age in a report about prenatal screening for autism. The report was originally published in the UK newspaper, The Guardian, yesterday - The Age's report has been edited down from the UK report, but the context of this quote, and its content, does not appear to have been altered.

    Let's hope Prof Baron-Cohen's flak-jacket is in good condition - let's debate the merits and dimensions of prenatal testing by all means, but this is simply offensive (and arrogant?).

    We have emailed Professor Baron-Cohen to alert him to the quote, to confirm its authenticity and to alert him to the offence it will cause.

    Edit 13/01/2009) 11.05 am: And he has replied promptly:

    "This was not what I actually said ..... I am sorry the way it was reported was offensive. I am personally against termination".

    Monday, 12 January 2009

    Self-directed funding: an emerging concept for Australians with disabilities

    People with Disability is a national peak body representing the interests of people with all kinds of disabilities - particularly in relation to issues that are not specific to a particular kind of disability, often the very "big picture" concerns.

    The development of support for self-directed funding for people with disabilities is one such issue in which PWD is well placed to play a leading role. The PWD E-bulletin for December 2008 reports on recent local moves:

    Two DS NSW staff members attended the meeting in Sydney on 2nd December referred to, and will continue to keep us informed of developments, and further information as it arises. A brief comment:

    One example given by a speaker that really struck us was of a man with multiple disabilities living in the UK who elected to access self-directed funding. He then used it to "purchase" a service that he had previously received as a "service user" - his family carers reported that the dynamics of the relationship between service and now purchaser had changed significantly in the man's favour once he was in control of where and how his funding was used.

    A coalition of individuals and organisations with an interest in promoting self-directed funding as an option in Australia has come together as In Control Australia. A draft statement of principles has been drafted, and is being further developed, and a website will be established as a central information point.

    We have just received from the UK (a generous gift from two of the contributors), a copy of Learning Disability Today - key issues for providers, practitioners and users, 2nd Ed, edited by Steven Carnaby and published by Pavilion. Karen Slater, a young woman with Down syndrome, her mother, Catherine Slater, and Andrew Carpenter have written Chapter 15: "I choose- I choose my staff, I choose where I go", subtitled, "Living with direct payments". DS NSW members will be able to borrow it from our library from later this week.

    What Kind of a Future? A booklet for young people with Down’s syndrome, published by the Foundation for People with Learning Disabilities (UK) - Karen Slater was one of the ten adults with Down syndrome who were interviewed this publication, which "provides practical solutions to common problems for young people with Down’s Syndrome such as using money, travelling on buses and living on their own. The booklet includes the positive stories of ten young people with Down’s syndrome who have experienced similar problems and overcome them." It is described as "an easy to read guide for young people with Down’s syndrome ", and is also available to be borrowed from our library by members.

    The Foundation for People with Learning Disabiities is an excellent source of information, some of it specifically about people with Down syndrome, and much of it freely available to download.

    Sunday, 11 January 2009

    Jay Turnbull: inspiration for the Beach Centre, University of Kansas

    It is not at all uncommon to find that those who who research and work in professional capacities with and for people with disabilities have a personal knowledge of the impact of disability on the lives of individuals and their families - often a close family knowledge, of the need for support, the practicalities of providing it, and its wide-ranging benefits.

    Patricia Bauer's News and Commentary on Disability Issues blog acknowledges the recent death of Jay Turnbull, a man with complex disabilities who inspired his parents, Prof Rud Turnbull, and Prof Ann Turnbull to establish the Beach Centre on Disability, at the University of Kansas.

    The Beach Centre does research to benefit people with intellectual disabilities, and is a highly regarded source of information for individuals, families and professionals.

    Thursday, 8 January 2009

    Library Thursdays: Most popular of 2008

    Looking forward to 2009 in the library, we'll first look back on what people borrowed. The first and second most borrowed items were two of the excellent DVDs from Blueberry Shoes--Kids with Down syndrome: Staying Healthy and Making Friends and The First 18 Months. (Another one, Discovery was the third most borrowed DVD/video.) All written and directed by Will Schermerhorn, the DVDs provide the advice and experience of experts and parents around the world on the various facets of development. The beautiful footage showing children and adolescents with Down syndrome is inspiring and educating. These resources appeal to parents, educators and therapists, so it is not surprising that they were the most borrowed. The other most borrowed DVDs were two from the Downs Ed Trust-- Inclusion in Practice: Educating children with Down syndrome in Primary School and Development in Practice: Speech and Language Activities for preschoolers with Down syndrome.

    The most popular books borrowed reflected the main categories of the collection. The most borrowed book was Gifts (edited by K.L. Soper). This is a collection of reflections by mothers of children with Down syndrome. Personal stories make up a big part of loans from the library. Next was Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality by Terri Couwenhoven. These issues are of concern to parents, educators and therapists. This is an excellent book so it is not surprising to see it so popular. Next was A Kid's Guide to Down syndrome from the Down Syndrome Society of South Australia. This book is a primary school level explanation of Down syndrome for children with Down syndrome as well as siblings, friends and classmates. And of course next on the list were the popular books from the Issues and Information Series by the Downs Ed Trust. Many of these are now available online but we also have the hardcopies in the library. The most popular of this series were Memory Development, Motor Development and Social Skills Development. (Social skills has just recently has been put online but the other two are still to come online.) Finishing off the top 10 resources borrowed, was Roadmap to Holland (see blog this week)by Jennifer Graf Gronewald, another personal story.
    These are all excellent resources, so it is a pleasure to see them being used. I suspect that many of these will be on the list again next year, but I'm looking forward to new exciting reading and viewing in 2009.
    To borrow any of these or anything else, email us.

    Wednesday, 7 January 2009

    Accessible Arts Newsletter : January 2009

    Accessible Arts' Newsletter is always full of news about opportunities and events across NSW, and beyond. The January 2009 issue is out now.

    It includes news of a research study investigating the benefits of arts-related activities for people with disabilities, Art For Art’s Sake: A Qualitative Study Exploring the Facilitation of Creativity Within Disability Services.


    L'arche Canada's website provides access to some delightful online photographic exhibitions, Images of L'arche, that include some stunning portraits of people with Down syndrome.

    People with Down Syndrome on iGoogle
    The National Down Syndrome Society, based in New York has developed an iGoogle "theme" as an awareness raising activity. Go to, select "iGoogle" from the option at the top of the window. To add rotating images from the NDSS photo library to you iGoogle home page, select "Change themes" and search for "Down syndrome" in the search box. A link to a short message about the NDSS also appears.

    Tuesday, 6 January 2009

    Road Map to Holland: new website, video

    Jennifer Graf Groneberg, author of the award winning 2008 book Road Map to Holland has launched a new website, including a 4 minute promotional video featuring her reading an extract from the book, over photographs of her family.

    The site has a good deal of background information about the book, its writing and production, and a guide for book groups. If you liked the book, you'll find something interesting here. If you haven't read it yet, the video might prompt you to. DS NSW members can borrow it from our library - email your request to, or phone 02 9683 4333.
    Jennifer Graf Groneberg:
    Pinwheels is Jennifer Groneberg's blog.

    Monday, 5 January 2009

    Other people's blogs .....

    This blog has been taking a bit of a break (as have many sources of news!), but others have continued to post thoughts worth stopping by for throughout the holidays, including the ever thought-provoking Dave Hingsburger .....

    Chewing the Fat, Saturday 3rd January 2009: Dave has published an "up-front and personal" email from the mother of a young man with Down syndrome (with her permission), about the concept of "community", and how her views on it have changed.

    Of course we think all of Dave's posts are worthwhile reading, as do his legion of regular readers.

    DS NSW Calendar 2010 - members' photos accepted until 31 May 2009

    Yes, it is only the first week of 2009, but we are planning ahead! Please send in your photos for the 2010 calendar. If you haven't sent any in before, or have skipped a few years, now is a great time to start, or to rejoin this popular and easy community activity.

    We would love to include more photos of older children, teens and adults with Down syndrome with their friends and family, at work, at play, and doing all the interesting things they get up to – but do send in those littlies as well.

    Here's how to do it:

    • send a maximum of three photos per family. Email submissions, of digital photos in .jpg format at 300 dpi resolution are preferred (maximum file size 500 kb), but prints are also accepted.
    • provide the names of everyone in the photo, and written permission for its publication from each person.
    • photos submitted for the calendar may be used to illustrate other publications, and the website - please note if you do not give permission for such other uses.
    • email digital photos to: with "2010 Calendar" in the subject line.
    • prints should have the names written on the reverse, in soft tipped pen. Please do not send your only copy of treasured photos - we cannot guarantee against loss. Note: If you want your prints returned, please include a stamped self-addressed envelope. Mail to:

    Down Syndrome NSW, PO Box 2356, North Parramatta 1750.

    Depending on the number of photographs received, it might not be possible to use every photograph from every family, although every effort will be made to include them all.

    Submissions for the 2010 Calendar will definitely close on 31 May 2009.

    Sunday, 4 January 2009

    4th International Down Syndrome Swimming Championships

    The 4th International Down Syndrome Swimming Championships were held in Portugal from 29th November to 4th December 2008.

    Team Australia were farewelled at Brisbane Airport by DSDUSO Patron, Olympian Jessica Schipper

    The 20 member Team Australia came through the meet with excellent results, named the Best Team of the Championship, with 84000 points, ahead of UK and South Africa. The total medal count for Australia was

    • 28 GOLD

    • 19 SILVER

    • 12 BRONZE

    • 28 new World Records
    Full results for Team Australia are available from the Down Syndrome Down Under Swimming Organisation's website.
    Tahnee Afuhaamango from Darwin was named the overall World Female Champion at the Championships held in Albufeirra, Portugal, having won 7 gold and 2 silver medals, and set six World records during the Championships.
    These personal insights and photos are from the families of the five NSW swimmers:

    5 Team Australia members were from NSW: Lucy Dumitrescu (Sydney) Greg Blanch (Armidale), Will Brunsdon (Armidale), Brendan Foley (Sydney) and Daniel Rumsey (Bundanoon).
    This was the first year that the championships included separate categories for those with Mosiac DS and Trisomy 21 so Brendan, being one of three Mosiac swimmers competing, did really well, winning many medals and achieving personal best times. He was very excited to be producing these times.
    Lucy Dumitrescu (see this post for more about Lucy, and pictures) swam really well, achieving her first podium finish at World Championships finishing 1st in the 200m butterfly.
    Greg Blanch had swum in Special Olympics before and has been swimming for many years. At the championships he finished 2nd in the 200m backstroke and placed in several relays gaining silver and bronze medals. Greg also swam times in his events he has not swum in many years.

    Will Brunsdon and Greg Blanch

    Will Brunsdon again swam really well and managed to gain 8 golds and 1 silver medal. He also broke 4 individual and 3 relay world records which was fantastic.

    Will Brunsdon (centre) with US swimmer, Andy Meyers, and fellow Australian, Clinton Stanley, from Qld

    Daniel Rumsey had an amazing championships breaking world records in every event he swam in except for his last event. He also won 8 gold and 1 silver medal and broke 3 relay and 10 individual world records.
    Daniel was the 2nd most successful male swimmer and Will was the third. Australia won the best country with the most points, earned by the swimmers placing in events and breaking world records, and beat the next country, South Africa, by 30,000 points. They won the most successful female and 2nd most successful female also. These were won by Tahnee Afuhaamango, NT and Olivia Sayer, VIC. So a very successful event from all swimmers.
    The swimmers were supported very competently by the coaches who accompanied them and all swimmers loved the experience of representing their county and catching up with friends made over the last two years.
    This was the first championships to do full medal ceremonies with the flag raising and national anthem sung for each final which was very rewarding for the swimmers.

    Last day of competition - some tired swimmers down the front!

    Congratulations to all who competed, coached, supported and made the event happen. The 5th International Down Syndrome Swimming Championships are scheduled for 2010 in Taiwan.