Blog break

Thank you for reading throughout 2011. Like many of our readers, Keeping Up is taking a break for some rest and relaxation - we hope you enjoy yours as much as we plan to.  We'll be back in early January, ready for another year of news, information and comment.

You can sign up (in the right hand column) for email notifications so that you know when we are back in the blogosphere.

All you need is love: raising two daughters with Down syndrome

Rosemaie Milsom's Newcastle Herald story (in this weekend's magazine, and online) about a local family, the Rutherfords, needs little comment from us, except to to thank Rob and Jo for taking the time in their very busy lives to tell the world about their family.

Meaningful gift-giving: Kathy Snow

Kathy Snow is a disability rights advocate, trainer and writer (and not co-incidentally the mother of a young man with a disability), who maintains the Disability is Natural website.  Her offering for Christmas (and other gift-giving holidays) this year is Meaningful Gift-Giving ... some thoughts on thoughtful gifts that require no money or making.

You will find much useful information on the website, some of it freely available, some for purchase.  You can sign up for a free e-Newsletter.

Charges dropped - calls for court support

Further to this post from last week about the need for support for communication in courts, many have been distressed by this week's news that the sexual assault charges that stimulated the discussion have been dropped in South Australia because the prosecution did not think their witnesses with disabilities would be perceived as sufficiently reliable to secure a conviction.

Speech Pathology Australia put out this press release, Justice should extend to all Australians, and calls for further development of support strategies from several sources have cited a program already in place in Victoria as an example.

Wordless Wednesday ...

Photograph: Sally Crosbie

Holiday/party activity - fun with built in support

Joan Medlen's work and thinking on healthy eating and lifestyles for people with disabilities and their families goes well beyond food.

Here is another example, from her Practical Wisdom blog of a fairly simple healthy food-related activity (she calls it a 'sanity activity saver' - how appealing is that?) that can provide substantial support in a social setting that could be challenging, that remains part of the occasion - read the post to appreciate all the dimensions Joan covers.

Very apt for an Australian summer - with the choice of wonderful fresh fruits available, you could make rainbow kabobs of many varieties.

Northcott Newcastle 'Learn Swimming Skills': term 1, 2012

The ‘Learn Swimming Skills Program' will be running again in the new year during Term 1 in partnership with Northcott Disability Services, MyTime and Balance Health Club. 

Children under school age with a disability, chronic medical condition or are under-going assessments and their siblings are invited to participate in a “learn swimming skills” program for Term 1 in 2012.

The program will be suited to meet the needs of the children attending and will have fully qualified instructors available. Children attending will gain confidence and water safety skills in a fun environment.

The program will run WEEKLY for the whole of Term 1 every Thursday, 2nd February - 12th April.

Swimming commences at 11.30am and runs until 12.15pm. 

Some Important Information

• Children who are attending in term 4 don’t automatically qualify for term 1 next year. Parents will have to re register their child by the 13th of January
• Priority will be given to children who have not previously attended.
• If your child has attended previously their place will be confirmed after the closing date on the 13th of January. Places will be offered to existing attendees on a first come first serve basis.
• The cost of the lessons will be $50 for the whole term. This fee must be paid by the 20th of January to hold your child’s place.
• Parents must register their child for MyTime/Northcott calling 4935 0400 or emailing Newcastle@northcott.com.au
• Parents will need to complete a registration form once their child’s place is confirmed
• Parents are able to join the children in the pool while they get settled.
• Program will be cancelled if registration numbers are low.
• Children must be ready to start the lesson at 11.30 so not to disrupt the class 

Siblings activities in Newcastle in January: Northcott

January School Holidays Siblings Fun 2012

If you’re a sibling aged 7 - 12 who has a brother or sister with a recently diagnosed disability you are invited to join Northcott on one of their upcoming sibling trips.

Drop off and pick up from 13 Valencia Street Mayfield


• 9am prompt arrival
• 3pm depart
• Meals included

To RSVP please contact Northcott on (02) 4935 0400.

If you will have transport difficulties please discuss at time of RSVP

Newcastle Disney Live - Tuesday 17th January 2012
followed by a picnic lunch on the beach (weather permitting)

Source: IDEAS e-News Issue 30

Sydney Community College Inclusive Community Education Program

Courses for people with a disability at the Rozelle Campus

Term 1 2012 is 28th January – 5th April

The courses are:

• Filmmaking (Saturdays 9:30am-12:30pm)
• Organic Gardening & Cooking (Saturdays 1:30pm-4:30pm)
• Visual Arts (Tuesdays 3:15pm-6:15pm)
• Dance & Games (Wednesdays 3:15pm-6:15pm)
• Singing (Thursdays 3:15-6:15pm)

Please contact:

Duncan Rose

Social Inclusion Program Coordinator, Sydney Community College

duncan.rose@scc.nsw.edu.au or ph: 8752 7571

What is the Inclusive Community Education Program?

The ICEP is a two year pilot program operated by the Respite Directorate, Family and Community Services, Aging, Disability and Home Care. It is a flexible respite program that aims to give carers a break by providing recreation and leisure courses for adults with a disability. It also aims to give people with a disability an opportunity to build social networks with their peers outside usual service hours.

Who Can Come?

The ICEP pilot is for people with a disability who:

• Are aged 18-45 years (with some flexibility)
• Have an unpaid carer e.g. parent (people who are recipients of the Carers Allowance or other benefits are considered to be unpaid carers)
• Are living in the community. People who currently live in ADHC funded or operated accommodation are not eligible as the focus is to provide respite to an unpaid carer.
• Live in Ashfield, Burwood, Canada Bay, Canterbury, Leichhardt, Marrickville, Strathfield, Botany Bay, Randwick, Rockdale, Sydney, Waverly or Woollahra LGAs

Source:  IDEAS e-News Issue 30, 12th December 2012

Free holiday Baby Sign Playtime session

Baby Sign Playtime  is offering a free session during the January holidays!

11 am  18th January 2012

Parenting and Pregnancy Centre, Baulkham Hills

A fun play session where parents and babies can learn baby signs through songs, stories and games. For babies with and without Down syndrome.

NB: For babies 0 - 2 only; no older siblings please.

Please let Carolyn know you'll be attending by contacting her on 0431 514 787 or info@hillsnepean.com.au You can visit our website at www.babysignplaytime.com

Upstairs, Downstairs

Did you see the final episode of Upstairs, Downstairs on ABC TV this evening?  If not, you missed Sarah Gordy's performance in a final plot twist revealing her character, Pamela, the sister of the leading male character, Sir Hallam Holland.  A short clip from the episode, set in 1936, is included in this BBC interview from December 2010.



You can see more about Sarah's 11 years of theatre experience, here on her website - and make sure to take a look at her work as a model for photographer Richard Bailey, for the Shifting Perspectives exhibition.

Team Eammon

Eamon Petersen's family set themselves a fundraising target of $300 for their first Buddy Walk effort, and would have been very pleased to have reached it. So they were thrilled (and Down Syndrome NSW was very grateful), when with the support of their family, friends and their local Maitland community they raised more than $2000 through his Buddy Walk Hero fundraising page, when they took part in Buddy Walk - Australia: Newcastle for the first time in October.

Jess Chalker interviewed Eamon's mum, Kim, for this summer's issue of Down Syndrome NSW News and Update (read it here on p 2). Kim said then, "We want to work with the community to create a culture that fully accepts our little boy and all the other children like Eamon. ... A dear friend of ours said ‘that’s what mates do, support each other'. Our friends and family can see how important it is to us to have Eamon out in the community living his life to the fullest so they can see that the money raised from this event can only benefit him in the long run."

Pictured from left: Hannah Rose (QBE Foundation), Natalie Grogan, Eamon, Kim, Cohen

And now this little boy's presence in his family's community has resulted in a very generous donation of $10,000 from the QBE Foundation (Eamon's devoted godmother, Natalie Grogan works with QBE and successfully applied to the Foundation for the donation), that will make a significant contribution to that cultural development.

Eamon took Kim and his brother Cohen along for the cheque presentation.

Many, many thanks to the QBE Foundation, to the Petersens, to Natalie and to Eamon!

Some weekend reading ...

Ability magazine's interview with John C McGinley (aka Dr Perry Cox in Scrubs, and Max's Dad) in its current issue is available online.










The UK Daily Mail published this interview with Gemma Andre about her little girl Taya, who has landed some modelling jobs - you will see why from the gorgeous photos. The interview is more thoughtful than you might expect.

People with communication impairment deserve their day in court

Teresa Iacono has long and substantial experience in supporting people with intellectual disability (including Down syndrome) to communicate by various means, and as an advocate for practical accommodation for complex communication needs.  She is currently Professor of Regional and Rural Allied Health at La Trobe University, Bendigo, and a speech pathologist specialising in complex communication impairment.

She argues in today's Fairfax press for courts to be required to provide appropriate adaptations for people with communication impairments:

For those of us working in the intellectual disability field there are many experiences of deja vu. A report that charges may be dropped against a South Australian bus driver accused of sexually abusing two children with intellectual disabilities is a recent one. As a result of their intellectual disability and associated communication impairment, these children are thought to be unable to cope with prolonged legal questioning.

Read more via the Sydney Morning Herald's online edition.

Recent developments in Australian disability reform

NDIS agency
On International Day of People with Disability (3rd December), the Prime Minister announced the establishment of the agency that will oversee building the national Disability Insurance Scheme. The Minister's press release describing the work and objectives of the agency is here.


Minister for Disability reform
This week, the reshuffle of the Cabinet saw the title 'Minister for Disability Reform' added to the portfolio of the Minister for Families, Housing, Community Services and Indigenous Affairs (Jenny Macklin).  Commentary has included:

James O'Brien at the Every Australian Counts campaign
... This means that Minister Macklin – as one of the Government’s senior Ministers – will have a clear mandate to continue to develop the NDIS.

Tom Bridge at Ramp Up, the ABC's site on disability matters
 ... All Tom Bridge wanted for Christmas was a Minister for Disability in the Australian Parliament. In the cabinet reshuffle yesterday, he got what he wanted. Sort of.

New Government NDIS website
The Australian Government's website for the National Disability Insurance Scheme was launched on IDPWD, to track its development, and for the release of government news about the NDIS.  (Note that the Every Australian Counts campaign website is separate, owned and run by the campaign).  You can subscribe to updates and news feeds from the NDIS site.

Wordless Wednesday

'Growing Older with Down Syndrome' news sheet: issue 6

The Summer 2011 - 2012 issue of the Growing Older with Down Syndrome news sheet is now available online, as a downloadable .pdf file.

If you know someone who would like a print copy, please contact Miriam Parker at Down Syndrome NSW, on 9841 4407 or miriam@dsansw.org.au

Transition to retirement for people with a disability: new DVD

Transition to Retirement is a new DVD designed to help older people with a disability to make the transition from work to retirement.  It is a product of an ARC Linkage Research Project led by Associate Professor Roger Stancliffe (University of Sydney) in collaboration with the Australian Foundation for Disability (AFFORD).

The objective of the Transition to Retirement project was to support older people with a lifelong disability to experience an active and inclusive retirement.

Professor Roger Stancliffe suggests that people with disability, particularly intellectual disability, are now living longer, which is very positive. However it presents new challenges as these individuals approach retirement age.

'There is really no clear policy or clear range of paths for people to follow to develop a retirement lifestyle so we are offering one alternative to assist people to gradually begin to develop a retirement lifestyle as they ease out of their full time sheltered employment." .... read more on the project on this University of Sydney news webpage.

The DVD will be distributed by AFFORD and will also be available through its website. The online edition is available to view as individual chapters, all of which are well worth watching.

Young onset dementia: promising results of research into vaccine

Another piece of research was reported today, that is not directly about people with Down syndrome, but might have potential to lead to very good outcomes for them, because of their increased susceptibility to young onset Alzheimer's disease.

Media release from University of Sydney, 9th December 2011:

A vaccine that slows the progression of Alzheimer’s disease and other types of dementia has been developed by researchers at the University of Sydney’s Brain and Mind Research Institute (BMRI).

The vaccine, which targets a protein known as tau, prevents the ongoing formation of neurofibrillary tangles in the brain of a mouse with Alzheimer’s disease.

This progressive neurodegenerative disease affects more than 35 million people worldwide. The tau protein is also involved in front temporal dementia, the second most common form of dementia in people younger than 65 years.

The results of the study which led to the production of the vaccine have been published today in the scientific journal PLoS ONE.

Lead author on the study, Associate Professor Lars Ittner, from the Alzheimer's and Parkinson's Disease Laboratory says:

“Our study is the first to show that a vaccine targeting the tau protein can be effective once the disease has already set in.

“The vaccine appears to have a preventative effect: slowing the development of further tangles, rather than clearing existing ones, but the exact mechanism involved is not yet understood,” he said.

According to Associate Professor Ittner, scientists have been working on vaccines targeting the amyloid plaques seen in Alzheimer’s for many years with a few currently in clinical trials.

“Most of the other vaccines targeting tau were tested only before or around the onset of the disease in animal models, but the vast majority of people with Alzheimer’s disease are only diagnosed after the symptoms have appeared.

“We are already collaborating with the US pharmaceutical industry to develop this new vaccine for humans.

“Although we have a long way to go before the vaccine might be available for human use, these early results are very promising and a great reward for the countless hours spent in the lab by me and my team!” 

New app from Special iApps: Special Stories

Special iApps, the developers of the app version of See and Learn - Special Words (released in September), have released a new one, Special Stories, allowing you to create your own stories with text, pictures and sound.

It is a universal app for iPhone, iTouch and iPad, priced at $13.99 via iTunes.

Local research published on memory in people with and without Down syndrome - you might have participated in this study

Thanks to James Birdsall (Research and Development, DS NSW) for this summary of a recently released paper.

The Department of Psychology at Macquarie University has recently published the results of a study exploring the implicit and explicit olfactory memory in people with and without Down syndrome. 

The study is of particular interest as Down Syndrome NSW assisted the researchers to recruit participants for the study starting in 2005.  

The study examined differences in implicit memory, where previous experiences aid the person to perform a task without conscious awareness of those experiences, and explicit memory, where the person is intentionally recalling previous experiences and information. These differences were examined by comparing the memory performance of people with Down syndrome, their siblings, children matched on mental age and university undergraduates using olfactory stimuli.  As well as comparing the participant’s implicit and explicit memory, the participants were also compared on two tasks of executive function, which is a theorized cognitive system which controls a person’s cognitive processes such as working memory, problem solving and verbal reasoning.

Fifteen of the participants in the study had Down syndrome, and were aged between 8 and 20 years. The other participants in the study included 11 of their siblings, 17 children matched for mental-age and 21 undergraduate students who comprised the control groups in the study. 

The data collected demonstrated strong evidence for implicit memory for olfactory stimuli, and the participants in the study who had Down syndrome performed comparatively to each of the control groups on the implicit memory task. The participants  with Down syndrome did not perform as strongly as the control groups on the explicit memory task - impairment to executive functioning was identified as a possible cause for this particular finding.

For those who would like to read the article in full, the reference for the study is detailed below, and the article can also be purchased online here. 

Johns, A., Homewood, J., Stevenson, R. & Taylor, A. (2012). Implicit and explicit olfactory memory in people with and without Down syndrome. Research in Developmental Disabilities, 33, 583-593.


A further investigation of executive function skills in children with Down syndrome was recently announced by the (US) National Center for Special Education Research.

If you are interested in participating in research either online or in person, take a check here for several current opportunities.

Voice, December 2011; DS NSW News and Update Summer 2011 - 2012

Our Summer 20111 - 2012 publications are being mailed out to members this week.  

The December 2011 issue of Voice has a theme of 'personal passions'.  The feature articles are available online here.

The Summer 2011 - 2012 issue of Down Syndrome NSW News and Update is available as a .pdf file here.

Auburn IDPWD event now on tomorrow

The Auburn Diversity Services  International Day of People with Disability event that was postponed due to rain last week will now be held tomorrow, Thursday 8th December.  

The program includes a screening of the 2009 TropFest winning film Be My Brother, and short presentations by Gerard O'Dwyer, Maria Short and Kylie Scott.

Click here for a flyer and detailed program.

Wordless Wednesday

Prenatal diagnosis: a broader perspective

This series of three well considered articles was published on Sunday (4th December 2011) by the Columbus Dispatch (from Columbus, Ohio), under the collective heading Down Syndrome Testing.  It takes a much broader survey of the complex scenario of prenatal diagnosis of Down syndrome, the whole range of ways in which parents and professionals might respond, and the information and support available.  It is a stark contrast to the article we blogged about yesterday. Links to the individual parts are all available from the lead page, and are headed:


A chosen child - after prenatal testing, Short North couple embraces the future
Down syndrome: thorny choice - new, less risky procedure increases moral quandary
A fair share? Advocates, genetic scientists say that other medical, developmental conditions receive much more attention, financial support

If you choose to read the comments (not always a good idea!), you will see that at least one person questions the evidence for the reference to high termination rates after prenatal diagnosis.  Here is a recent paper (published February 2011) that explains what is known, and where those statistics come from, in the US:
Demographic differences in Down syndrome live births in the US from 1989 to 2006 .

This 2008 paper provides an analysis of birth statistics in Victoria:
Is Down Syndrome a disappearing birth defect?
(the abstract only is currently available online - contact the Down Syndrome NSW library if you would like to arrange access to a copy of the full text)


The recent clinical release of a new non-invasive diagnostic prenatal test for Down syndrome (performed on a blood sample from the mother) in 20 US cities has stimulated much discussion in the Down syndrome community and the media generally. Boston geneticist and writer, Dr Brian Skotko, is often quoted on these matters - here is an article he wroter earlier this year:
Will babies with Down syndrome slowly disappear?


The final word today goes to Pamela Wilson, BellaOnline's Children with Special Needs Editor:
My son is a much better ambassador for the Down syndrome community than I will ever be, just being himself and interacting with people one by one. I believe that if everyone in the world had the chance to spend a few days with him, he would put Sequenom (the company that has released the new test first) out of business. But he has plans of his own, so it's up to others to make expectant parents aware of the real choices they have after Sequenom sells them and their medical providers the test.

Non-Invasive Prenatal Testing for Down Syndrome

Your comments are welcome, as always ...

Prenatal diagnosis: advocating for appropriate information and support

Yesterday, the Sunday Telegraph (Sydney) reprinted in its magazine, an article from the UK Daily Mail, 'I was bullied into aborting my baby' , a mother's account of the pressure she felt to terminate her pregnancy, when her baby was diagnosed prenatally with Down syndrome, 6 years ago.

Her description of how the diagnosis was delivered and the biased information she received are at odds with currently recommended practices about delivering the diagnosis, non-directive support for decision making, and the information that should be made available to parents, all of which is now readily available from several sources, including:

Discussing Down syndrome: a physician's guide published online by the National Down Syndrome Congress (USA)

Brighter Tomorrows published by the Interdisciplinary Human Development Institute, University of Kentucky 

Dr Brian Skotko's research, much of which is freely available through his website.

Our own website's pages on prenatal diagnosis.

Preventing experiences similar to this family's is an important part of the reason that, like Down syndrome family support organisations worldwide, Down Syndrome NSW puts considerable resources into community awareness activities, why many families choose to share their experience through the media (such as The Project's recent report), and why our top priority is accurate, current information for families, the professionals that serve them, and the communities in which they live.

(We did find the mother's comment that she never sees babies with Down syndrome now a little odd - one of the greatest changes that has occurred for people with Down syndrome, including babies, over recent decades is their increased visibility in communities everywhere.) 

Families are welcome to contact the Parent Support Team at Down Syndrome NSW on 02 9841 4401 or support@dsansw.org.au

Dream Night at Taronga Zoo

Dream Night at the Zoo is art of a event that is held in zoos around the world.  In Sydney, Taronga Zoo's event is planned to coincide with International Day of People With Disability, and gives children with disabilities and chronic illnesses and their families a unique opportunity for a twilight visit to Taronga Park, without the usual crowds of visitors.  Invitations are highly prized: entirely at the Taronga's discretion, and without publicity.

Down Syndrome NSW has been very fortunate to have received a limited number of tickets for members for three years (although last year's event was spectacularly washed out by a late and ferocious summer storm). Eligible families quickly took up the offer of tickets, and had a wonderful time on a fine night last Thursday evening.

Photos are now available to view through our Facebook page, as is feedback from several families - visit our FB wall for additional photos ... you are welcome to post yours there too.

A small part of the Down Syndrome NSW contingent exploring Taronga Park Zoo

International Day of People with Disability

Many events have, and still are happening to celebrate International Day of People with Disability.

Support for people with disability is on the national agenda, with progress on the National Disability Insurance Scheme at the ALP conference in Sydney.  Cate Smith charmed the Prime Minister over breakfast at the Sydney Aquarium, where the establishment of the authority to oversee the NDIS was announced.  You will also be able to catch a glimpse of Cate and the PM in television news bulletins this evening. The ABC's online report is here, published with this photo (right).

The Opposition spokesman on Disability, Senator Mitch Fifield issued this press release, affirming bi-partisan support for the NDIS, and calling for confirmation of full funding.

Assistant Treasurer Bill Shorten's speech to the ALP Conference in Sydney at the weekend - online audio and trasncript.

ILSI information sessions: 7 - 16 December

INDEPENDENT LIVING SUPPORT INITIATIVE (ILSI)

Is this the program for you, or someone you support?

An exciting new funding option from ADHC for older parents/carers

COME & HEAR ALL ABOUT IT AT AN INFORMATION SESSION

presented by Sunnyfield Independence

1.00 pm to 3.00 pm Wednesday 7th December 2011

WEST PENNANT HILLS VALLEY COMMUNITY CENTRE, Main Hall

(42a Hill Road, West Pennant Hills NSW 2120)

RSVP to Rebecca Jones on (02) 9412 8632 by Monday, 5 December

or email:  r.jones@sunnyfield.org.au

If you would like any further information, please contact Angela Tomassetti on (02) 9412 8632

______________________________________

Independent Living Support Initiative

UnitingCare Disability will be holding an information session about ILSI, and we would like to invite you to attend.

5pm-7pm13th December 2011

UnitingCare Disability, 

9 Brighton Avenue Croydon Park

Parking: UnitingCare Disability has a car park that is available for use, with street parking also available.

There will be light refreshments served on the night.

PLEASE RSVP BY 9TH DECEMBER TO:

Emma Coghlan, Phone: 9818 9814, Email: ecoghlan@unitingcaredisability.org.au 

______________________________________

INDEPENDENT LIVING SUPPORT INITIATIVE

Do you have a disability with low – moderate support needs?

Do you have ageing parents/carers?

The NSW Government, through Ageing, Disability and Home Care (ADHC) has recog-nized a need to provide a more flexible approach to accommodation support options.

If you are a person with a disability who wishes to live more independently, and you live with ageing parents or carers, then the “Independent Living Support Initiative” could be for you.

How will the “Independent Living Support Initiative” work?

Lifestyle Solutions will provide up to 35hours/week support to assist you move towards independent living arrangements through person centred planning, intensive living skills development and the development of effective support networks, including a circle of sup-port

.

Lifestyle Solutions are holding information sessions on:

Thursday 15th December 2011

Rooty Hill RSL

55 Sherbrooke St, Rooty Hill

Commencing at 6:00pm

and

Friday 16th December 2011

Merrylands Bowling Club

Cnr Newman Rd & Oxford St, Merrylands

Commencing at 1:00pm

You will receive an Information kit together with an Expression of Interest form. This will need to be completed and returned to Lifestyle Solutions, we will then assist you to complete an Application Form. The program is available for people living in the Cumberland/Prospect areas (e.g. Blacktown, Hills District, Auburn, Merrylands, Parramatta).

RSVP: Linda Simeon — (02) 8801 3200 or email linda.simeon@lls.org.au by 

Wednesday 14th December 2011.

We look forward to meeting you!


Click here for links to flyers for each of these sessions.

______________________________________

Independent Living Support Initiative, a program being developed by Down Syndrome NSW  in conjunction with the NSW Government and service providers.

Summer 2011 - 2012 publications

Click here for latest issue of our monthly summary of information and events.

Members will receive the print editions of our of our Summer 2011-2012 quarterly journal Voice, and the Down Syndrome NSW News and update by post early next week.

Toy shopping suggestions

Jennifer Bekins, speech and language pathologist at the Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, has posted her annual list of gift suggestions on her blog, Let's Talk Down Syndrome. She says:

'Our team members are often asked what kinds of toys we suggest for children with Down syndrome. For the past several years I’ve compiled a list in November/December for this very reason. Our criteria when choosing toys:

•  Engaging/ interesting
•  Target specific goals we address in therapy
•  Not too annoying (limited bells and whistles)
•  Developmentally appropriate
•  Encourage adult-child or child-child interaction
•  Available locally or on common on-line sites'

The last point might not be so relevant if you are Australia, but many of the brands and toys are available here. And of course there are the hundreds of toys that any child will enjoy ...

What have been the top toys on your household?

Wordless Wednesday

Distressing news report

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

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

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

Website of the week: Play Talk Learn

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

This is how Play Talk Learn came about. Here you will find activities that are:

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

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

Kyiv, one year on

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

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

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

Up, Up and Away on Aurora TV

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

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

Ever After Theatre Company presents .... Power

A new work created by Ever After Theatre ensemble members

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

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

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

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

The Project 23 Nov: Living with Down syndrome segment

In case you missed it on Wednesday 23rd November, The Project's (Channel 10) segment on living with Down syndrome can be viewed here - the segment clip starts after a couple of ads ... then 'our' story is 6 m 30 sec in.

It's generated a lot of very positive comment on The Project's Facebook page, and on our Facebook page, and this compilation of direct responses.

Library Thursday: managing grief and loss

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

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

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

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

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

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

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

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

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

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

Stronger Together 2: Supported Accommodation Fact Sheet

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

Wordless Wednesday

Everyone Can Dance: Narellan, 3rd December

Discobility Dance Party

Narellan Community Centre

Queen Street, Narellan 2567

11.00 am - 3.00 pm

3rd December 2011

Free entry all day

Other entertainment, BBQ, and much more ...

Contact: Tara Grech, Everyone Can Dance

0422 085 470

tara_grech@hotmail.com

www.everyonecandance.com.au

Free dance workshop for International Day of People with Disability

An invitation from Arncliffe Community Centre:

Join us to celebrate International Day of People with Disabilities.

Learn some new moves and have fun @ our free Dance Workshop.

No matter what your disability. if you’re aged between 12-26 years of age - everyone welcome and bring your carer along.

Friday 2nd December

11.30am—12.30pm

Coronation Hall

23 Barden St Arncliffe

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

An initiative of St George Community Services Inc

Inclusive Technologies and Learning Disability in Education and Employment Conference

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

The Project, Channel 10 Wednesday 23rd November

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

2013 Down Syndrome NSW Calendar !

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

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

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

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

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

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

Down Syndrome NSW
PO Box 9117
Harris Park  NSW 2150

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

Scrapheap Adventure Ride 3: Easter 2012

KOSCIUSZKO

www.facebook.com/scrapheapadventureride 

Registrations will open shortly – are you ready?

Three new opportunities to take part in local research studies

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

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

Download information provided by the researchers here.

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

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

* * * * * * * * * *

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

• information and consent for parents of children with Down syndrome
• information and consent for adult s with Down syndrome

* * * * * * * * * *

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

• Information provided by the researcher, Carly Black

* * * * * * * * * *


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

Library Thursday: For Pete's sake!

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


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

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

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

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