Shave a Bunny - one week to go !

It's just one week today until the Big Shave occurs on The Footy Show ... and donations have reached $18,619 !

Follow and share the fun at http://shaveabunny.com.au

Thank you all so much.

2013 Calendar - thanks

Thank you everyone for all the photos sent through for inclusion in the 2013 edition of the Down Syndrome NSW Calendar.

Submissions for the 2013 Calendar have now CLOSED. We can’t wait to see the finished product!

Kind regards,

Hanna Wawryczuk

Library Thursday: Australian libraries promotion and a new revew

A short promotional video to remind Australians in the National year of Reading that Australia's libraries are places of knowledge, culture, community and wonder. Everyone is welcome and most things are free. 


Did you know that you can order items from the NSW State Library through your local public library, at very low cost? You then collect them from and return them to the local library.


Your local library will probably also welcome suggestions for additions to its collection - they want to include items that local residents want to read/view.  It's a great way to make information about people with Down syndrome widely available in your community. 

A new and thoughtful review of Jan Gothard's book, Greater Expectations, published in 2011, was published by the Australian Review of Public Affairs this week. Greater Expectations is available for loan to members from our library.

The Down Syndrome NSW library is one of our major members' assets - check out the collection here, and arrange loans in person, by phone (9841 4411) or email library@dsansw.org.au   

New drama class: Marian St Theatre, Killara

Drama for Young People with an Intellectual Disability (For 14 - 25 year olds)
Where: Marian Street Theatre, Downstairs (Killara)
When: MONDAYS 4pm. The next term begins on Monday 30 July
Length: 1.5 hours
Fee: $100 per term or $180 per semester (15 weeks)

A drama class for 12 young people aged 14-25 with an intellectual disability. Participating with others in fun inclusive drama exercises and impro games gives young people an outlet for their creative expression, builds confidence and develops communication skills. The course will culminate in a short performance for family and friends at the year's end.

Tutor Sher Kearney is experienced with youth with an intellectual disability and works regularly with North Sydney Council's Page to Stage program. 

Please contact Marian Street Theatre for Young People at info@mstyp.org.au or call us on 9498 7671 for further information.

Networks, teams and circles of support: seminar

Family members, friends and allies of a person with an intellectual disability who are thinking about developing, creating or enhancing the personal support network of a person with an intellectual disability or creating a circle of support to promote opportunities and relationships are invited to attend this seminar.

1.30 - 4.30 p.m.

Saturday 30th June 2012

University of Sydney, Faculty of Health Sciences

Cumberland Campus Room F126

75 East St, Lidcombe

Registration: $40.00

This day will focus on the experiences of families participating in a network or circle or team of support to enable a family member with an intellectual disability to plan and experience the good life. The presentations and discussion will be of particular interest to families who are dealing with similar issues and these families are warmly invited to attend. Other allies and people supporting families in developing networks also welcome to join us.

For more information contact Michelle Donelly on 0423 986 386 or 07 5506 9413


Registration: contact Margaret Carrick at the Centre for Disabiity Studies for a registration form:

Phone:           (02) 9036 3600

Email:            margaret.carrick@sydney.edu.au

Child care vacancies, Bondi, 2012 and 2013

A Down Syndrome NSW member has asked us to pass on this information:

Small non-profit community child care centre in Bondi has spots available from July 2012 for children with special needs in the group 2 - 5 years. 

In September 2012 and February 2013 there will also be spots available in the group 0 - 2 years. 

The centre has experience with children with Down Syndrome. 

For more information, please call 0422 522 940 or email impulsconsultancy@gmail.com

Disaclaimer: As always, this notice is provided for the information of members only, and is not necessarily an endorsement of the centre. If you wish to discuss it with a DS NSW staff member, call the Parent Support Team on 9841 4401.

Mothers Weekend 2012

Mothers' Weekend 2012

Solar Springs Health Retreat

96 Osborne Ave, Bundanoon

29th June -1st July 2012

Cost: $300.00 (Please note this event is subsidised).

Arrival from 12:00 noon Friday. Room access from 2:30pm

Check out by 11.00am but continued access to programs until 4:00pm

___________________________________________________

Weekend Inclusions

• 2 nights’ accommodation. All rooms access a shared bathroom.
• All meals including Friday and Sunday lunches.
• Access to gym and aquatic centre (including pool, spa, sauna, steam room)
• Access to daily supervised fitness programs and bush walks in the National Park

 Weekend Program – Caring for the Carer

• Friday Night Workshop, DS NSW
• Saturday – Staying Healthy Body and Mind
• Sunday – Carer Networking

 Optional activities - must be pre-booked with Solar Springs.

• Body Care and Pampering (at your own expense)
• Visit Solar Springs website for options including prices.

__________________________________________________

All welcome but priority will be given to mothers who did not attend last year. Places are strictly limited.

Bookings will only be taken by phone from 10am on 
Wednesday 6th June 2012  
Thursday 7th June

- earlier bookings will not be taken.

(leave a message if the line is busy)

Bookings and payments must be finalised by 20th June 2012.

Please contact Judy Davidson or Lynn Bailey at Down Syndrome NSW on (02) 9841 4401

Mental health and intellectual disability: child psychology seminar

The Children's Hospital Westmead School-Link team (Jodie Caruana and Hebah Saleh) are guest presenting for the Child Psychology Seminar Series on the topic of mental health and intellectual disability:

Monday 3rd June

3-5pm

Lorimer Dods Lecture Theatre, Education Centre (Level 4)

The Children's Hospital at Westmead

By the end of this presentation participants will have:

1. A fuller understanding of the literature on mental health and intellectual disability of children and adolescents.

2. Identified current interventions for this population.

3. Identified Prevention Promotion and Early Intervention Programs (PPEI) suitable for this population.

4. A better understanding of the pathways to care for this population.

5. A knowledge of the relevant sources of professional development on this topic.

Cost (including GST): $20; $10 Full-time students with student ID

Please see the flyer on the School Link website for more information.

Research Rights Conference: Disability Inclusion Change

Disability Inclusive Research Collaboration Conference (DIRCC)

Research Rights: Disability Inclusion Change 
13-14 June 2012 
University of Sydney

The conference is being organised by a group which includes organisations of and for people with disability, and universities and their research centres.

A series of workshops will be run across the two days where participants will hear how people with disability have been actively engaged in planning, doing research and disseminating findings. All workshops will be interactive and aimed at participants learning about specific research strategies that have proved to be inclusive.


Workshop presenters will:

1. Overview the projects that they have been involved with either as people with disability or as co-researchers with people with disability.
   
2. Facilitate a series of activities where participants will learn how to make research more inclusive and accessible for and with people with disability.

For information on speakers, program details, content, the tiered pricing structure, and registration, visit the conference website.

Weekend reading 26th - 27th May

In case we haven't provided enough reading material this week, here is a little more for the weekend ....

NZ's first Scout leader with Down syndrome

Why do we have parallel worlds? (Kathy Snow, Disability is Natural)

4th National Disability Advocacy Conference – Presentations (April 2012)

Transition to Retirement Pilot evaluation report 


10 signs in the classroom suggesting a child may benefit from occupational therapy (this paediatric therapy practice is located in Chicago, but the 10 signs will apply anywhere.)

Image © Zuzazuz | Dreamstime.com

Coeliac disease and Down syndrome: some current information resources

Coeliac disease (US spelling is 'celiac') is much more common in people with Down syndrome than in the population at large.

May is Celiac Awareness Month in the US.  To mark it this year, dietician Joan Medlen has published a two page fact sheet,  Celiac Disaease Facts for People with Down Syndrome as part of her Wellness Walk Talk range, available to be freely downloaded from her Down Syndrome Nutrition website.

Nine Years? Already? is Joan's account of her son Andy's diagnosis of Celiac disease published on her Practical Wisdom blog.

Down syndrome and coeliac disease - a tricky combination, by physicians Jodie Porter and Andrew Day was published in our quarterly journal, Voice, in June 2011. It includes information from families of a number of people with Down syndrome and coeliac disease.

Coeliac NSW and ACT is holding its 2012 Gluten Free Expo on Friday 24 and Saturday 25 August at Sydney Showground, Sydney Olympic Park. Admission is free, everyone is welcome.

Risky Business dementia conference: Diana Kerr

Diana Kerr, a world-renowned expert on night-time care and disability and dementia, and the author of several books on these topics, will be a keynote speaker at the Risky Business conference in Sydney next month. Ms Kerr is very experienced in identifying and meeting the needs of people with Down syndrome and dementia, and training professionals who care for them.

Diana Kerr, a world-renowned expert on night-time care and disability and dementia, and the author of several books on these topics, will be a keynote speaker at the Risky Business conference in Sydney next month. Ms Kerr is very experienced in identifying and meeting the needs of people with Down syndrome and dementia, and training professionals who care for them.

An overview of the event from the conference website:

Risky Business: Facing up to dementia will consider the future we are shaping for people with dementia. The International Dementia Partnership of The Dementia Centre, HammondCare and the Dementia Services Development Centre, University of Stirling will host this conference at Darling Harbour, Sydney Australia on 28-29 June 2012.

The conference will address Risk from everyone’s point of view; from the risks people with dementia choose to take in their lives, to the challenges of building and delivering services that provide choice and therapeutic benefits, to the legislative and policy context that both seek to protect and deny certain freedoms.

The conference will bring together delegates from across the globe, all with a passion to improve the lives of people with dementia. The conference is for everyone involved in supporting people with dementia and their carers.

Registration is now open.

National Museum of Australia: programs for adults with a disabiity

The National Museum of Australia (in Canberra) is offering a new art workshop program for adults with a disability that explores the exhibitions and themes in the Museum with art and creative crafts.  These regular workshops are facilitated by artist Ali Aedy.

Remaining dates for 2012:

 Fridays 1 June, 3 August, 7 September and 2 November 

1–2.30pm
Cost: $20 per workshop, $10 for Friends of the Museum.

See the schedule here for more information on each workshop.

'My boy is going to high school, and I'm terrified'

Mia Freedman's website MamaMia has a very large and broad readership - congratulations to Sam Paior from Adelaide, on her article published there yesterday, about her excitement and fears as her 12 year old, Ben, prepares for high school next year.  It has generated a lot of comment - most of it encouraging, all of it thoughtful:


Ben is twelve, going on seventeen. He is hairy, smelly, eats more than I can afford, and likes to laze around on his bed, watching YouTube videos and listening to music. He also whinges when I tell him to practise his bass guitar, but then plays for hours at a time. He regularly walks in the house with the mud dribbling off his soccer boots onto my (inevitably) recently vacuumed hallway.

He goes to our local primary school, in Grade six, but soon enough, it will be time for high school. He’s excited about the prospect. We’ve looked at a few schools together, but the one he loves is the one I went to, as well as his Nana, Great-Grandma and Great-Great-Grandfather. I suspect he’ll be the first of the fifth generation at the school. The principal told me he thought Ben would be “an asset to the school”. He’ll also be the first with Down syndrome.

He’s not scared at all. I’m terrified ...

... read on here for Sam's article, and the comments.

Special Olympics re-opens in Central Western NSW

From the Central Western Daily, good news for people with intellectual disabilities looking for sporting activities and opportunities in the Central West of NSW:

The central west branch of Special Olympics NSW is back in business and last Sunday held an open day in a bid to boost numbers ahead of the next World Games in Los Angeles in 2015.

Special Olympics central west region has been out of action for the past 12 months but with the help of Orange City Council, which has donated close to $3500 for equipment and uniforms, the organisation is back and looking for athletes.


.... read Nick McGrath's full report, Ready to take on the world, here.

Dysphagia workshops for professionals

The Centre for Disability Studies is hosting two workshops for professionals, presented by visting dysphagia expert Prof Justine Joan Sheppard, from the Department of Biobehavioral Sciences, Teachers College, Columbia University, New York

Sydney - Tuesday 12 June 2012
Brisbane - Monday 18 June 2012
Melbourne - date to be confirmed
DDS/DMSS Certification Workshop:
Dysphagia Screening Assessment for Children and Adults with Developmental Disability


Sydney - Wednesday 13 June 2012
Brisbane - Tuesday 19 June 2012
Melbourne - date to be confirmed
The Patient Profile for Swallowing and Feeding Function:
This is a new workshop that has been developed since the last visit by Professor Sheppard in 2010 designed to look at advanced issues in adults and children with intellectual / developmental disabilities.

For flyers, registration and detailed information, contact CDS: 
The Centre for Disability Studies  
(02) 9036 3600
Mail: Level 1 Medical Foundation Building-K25, 92-94 Parramatta Road, Camperdown, 2050.
Fax (02) 9036 3613 
email: cds@cds.org.au

Families in the media this week

US People Magazine's latest issue includes an article about DeOndra Dixon and her brother Jamie Foxx.  You can read it online here.

Linley Wilkie meets three families raising children with Down syndrome and discovers life is not as most of us would imagine. From the Moonee Valley Weekly (Victoria), 21st May 2012.

Every Student in Every School: Learning and Support

Family Advocacy has published a briefing paper in response to the NSW Department of Education and Communities' revised approach to supporting students with special needs who do not meet the criteria for individual funding in mainstream enrolments, Every Student in Every School: Learning and Support. It explains what is proposed,  addresses concerns expressed by teachers and parents, and is critical of some elements.

The new arrangements will supplement the support that students with integration funding already receive.

The briefing paper, and links to the DEC's own documentation is here.

'Shave a Bunny' update

Day 18 of the Shave a Bunny fund raiser, and donations have reached over $12,000  !!

Still two and a half weeks to go until the Big Shave  on the Footy Show, 7th June ... thank you all!

Online edition of Voice, April 2012

The online edition of the April 2012 issue of Voice, the members' journal published by Down Syndrome NSW and Down Syndrome Victoria is now available here. The theme for this issue is The Mid -Life Years. The feature articles are available online:

A long road to an independent lifestyle

Creating opportunities for social inclusion

Dementia in people with Down syndrome

Health Matter in the mid-life years

The middle years and beyond

Working as a development organisation


Resources on the mid-life years

Review - The Politics of Down syndrome

NDIS ... following the Budget

Development of the National Disability Insurance Scheme remains in the news, as the politics and economics of its implementation plays out.  

• This article from the Every Australian Counts campaign provides a summary of the current state of play following the Federal Budget announcement last week and the campaign's views on what needs to happen.
• Here, Paul Kelly, editor at large for The Australian writes about the politics (16th May).

New accessible singing group starting in Rozelle

From Sue Johnson at Rozelle Neighbourhood Centre:

Do you like to sing? Would you like to sing?

 

Thanks to the Opus 50 Charitable Trust a new singing group is starting at Rozelle Neighbourhood Centre.

We would like anyone who can sing a bit to join in (maybe you belt out something in the shower but are a bit shy to sing in public yet, or you sang a bit at school thousands of years ago and enjoyed it).

People with a disability are encouraged to come along....this is an accessible group in the community and we absolutely hope people from everywhere will make this their cool place to be on Thursday evenings.

We will start, gather, develop, practice lots, decide on a name for ourselves, and at some point hopefully sing at events in all sorts of places. We have funding for 1 year. 

The music director for this new singing group is Australian composer and musician Sarah de Jong. Sarah has composed music for film and theatre, recently a new Australian opera “Cockatoos” for the Victorian Youth Opera. But Sarah covers repertoire from Handel to MacArthur Park, Coldplay and Leonard Cohen. Sarah also teaches piano and singing everywhere.

If you'd like to come along and start up this group with us please let us know:

What:              the singing group with no name yet

Where:            Rozelle Neighbourhood Centre (accessible venue)

                        665a Darling St Rozelle

When:             Thursday evenings 6.30pm to 8pm Starting 31 May

Cost:                free

There is no charge for coming to the singing group. If you are not a member of Rozelle Neighbourhood Centre, we ask that you become a member of the centre which costs $5.50 per year. You can become a member at your first session and a receipt is issued.

Contact:          Sue Johnston 9555 8988 extension 2 or leisure@rnc.ngo.org.au

Image: © Filipe Varela | Dreamstime.com

Final reminder for 2013 calendar photos

In case you are running late - submission of photos for the Down Syndrome NSW 2013 calendar close on 20th May 2012!

Please email your photos to hanna@dsansw.org.au

Check here for details.

Polley family: award, and a video

Adam and Beau Polley are identical twins with Down syndrome. That makes them quite unusual young men.  They have grown up in a close family in rural NSW, that has had its share of  highs and difficulties as occur in all families, and on the land.  Their parents Narelle and John have been very open and generous in sharing the boys achievements and adventures with our members over the years - and now, fittingly the whole family has been recognised with an award at the Australian Grand Dairy Awards, designed to honour "highly skilled and pioneering people" in the dairy industry.

Here is the story from North Coast Town and Country Magazine: 

Farmers who do it their way 

By Mark Gallagher

North Coast Town and Country Magazine, 26^th March 2012

The Polleys are something of a fixture in the dairying scene at Kimbriki, west of Taree, with the fifth generation of the fam­ily now involved in the industry. And two members of that generation - and their parents - have attracted the attention of a na­tional dairy association for being an inspiration to other industry participants. John and Narelle Polley and their twin sons, Adam and Beau, now 21, currently milk 69 cows on their 200 acres at Kimbriki. (Another son, Josh, milks a further 80 cows nearby and John's father looks after more of the combined family herd on another adjacent property.) But lots of families run dairies.

What's inspir­ing about this family is that the Polley twins, Adam and Beau, were both born with Down syndrome, but have spent fulfilling lives growing up and work­ing on the farm thanks to the tireless devotion of their parents. The boys have been in­volved with the cows and calves from an early age, their parents say, and used to prac­tise their milking tech­nique on calves, al­though no milk result­ed.

The boys were expert at copying what happened in the dairy and transferred the routine to some presumably con­fused calves.

However their efforts were not wasted, John says, for when it was those calves' turn to be milked as cows, they knew exactly what was go­ing on as they had been trained by the boys. "It's amazing, really, how they're so good with the cattle," John says.

"They can seem to walk up to the cattle and pat them, and get on with them, where with other people they mostly run away ... It must be just their nature and relaxed way about them, I think."

The boys were never frightened of the cattle and could handle them even if they were wild and just be able to calm them down, he says. The boys saved up and bought a "Mule" farm ve­hicle between them and use it to get around the farm and do their chores. They help out in a number of ways, shifting electric fences, feeding calves, rounding cows up, and collecting and putting hay out — up to 12 bales at a time, they point out to me.

Both boys also have part-time jobs off-farm. The boys' time working away from the farm is good for everyone, giving Adam and Beau vari­ety in their activities, their parents say, and also provides a welcome break for them, be­cause their welfare and safety is a con­stant concern and someone has to keep a bit of an eye on them at all times. The family has recent­ly returned from Melbourne where they |i were presented with an award in recogni­tion of being an inspir­ing dairy family. The trip and accommo­dation were paid for by Dairy Australia as part of the annual Australian Grand Dairy Awards.

The awards, now in their 13th year, are held to "reward outstanding achievement in the dairy industry and recognise the 'best of the best' dairy produce from around the nation. The awards also celebrate the indus­try's commitment to high-quality and innovative products while acknowledging and celebrating the achievements of the highly-skilled and pio­neering people who produce these award-win­ning products," the organisation says. They certainly seem to have got it right with the Polley family - they really are inspiring.

Beau and Adam are clients of BreakThru Employment at Taree, and are the focus of this video about their preparation for working and living independently, including great footage of them at work on the farm.

 

Click here to see the video on You Tube.

Congratulations all round!

Library Thursday: online resources

The Allen C. Crocker Speaker Series is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. 

Click on the title of the presentations below to link to online video of  the 2012  Allen C Crocker Speaker Series from Boston Children's Hospital:

January 3, 2012:   Vision Issues and Down Syndrome

February 27th, 2012:  Thyroid Dysfunction and Down Syndrome

March 6, 2012:  Secrets to Social Success: How to Make and Keep Friends

April 24, 2012:  Health Care Guidelines for People with Down Syndrome

May 1, 2012:  Augmentative Communication Strategies

There is no presentation scheduled for June - the next event will be:

July 23rd  - David Stein, PsyD will present a talk on "Education and Down Syndrome: Translating Neurodevelopmental and Neuroscientific Findings to Practice"

The online video will be available a few days after the event.

All Hallows T4321

John, Kathleen and Emily Collins have, over a number of years, established a tradition at their parish church, All Hallows at Five Dock, with their T4321 event each April, which continues to grow. It is held after morning Mass, and the congregation is invited. 

This year, more than 100 people attended, and they raised over $2,000 for the work of Down Syndrome NSW.  John spoke, and a great morning tea was enjoyed by all, including lots of children.

Our grateful thanks to the Collins family and the clergy and  parishioners of All Hallows.

Webinar on reading research this evening (16th May)

Apologies for the very late notice of this Down Syndrome Education International (UK) webinar to be held this evening (Eastern Australian time).  You can sometimes register up to an hour or so before the webinar starts. The webinar was also offered yesterday in the UK.  The slides from the presentation are available here.


From Frank Buckley, CEO of Down Syndrome Education International:


Join us online this week to learn more about the reading and language intervention study that has recently been published. DSE researchers Dr Kelly Burgoyne and Professor Sue Buckley will be presenting and responding to questions.


Together with colleagues at the Centre for Reading and Language at the University of York, we have recently completed the first large controlled trial of an intervention designed for children with Down syndrome. The first scientific paper from the study is now available. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.

Join us online to learn more about the trial and the intervention itself. At these free events, DSE researchers will explain the trail and the design of the intervention, and present their findings. There will also be opportunities to ask us questions.

• 16 May 2012 – 09:30 British Summer Time (08:30 GMT, 10:30 Paris, 12:30 Moscow, 14:00 New Delhi, 18:30 Sydney, 20:30 Auckland) – Register now…

One:one support worker position open in south western Sydney

One of our members has asked us to advertise this position:

The mother of a young man with Down syndrome who lives in South Western Sydney is seeking to employ a support worker to work with her 19 year old son for 20-25 hours per week across 4 days a week. Hours and days can be somewhat flexible.

If you are interested, please call Linda on 9726 5243.  

My Perspective: UK photography competition shortlist

My Perspective is a photography competition showcasing the work of UK photographers with Down syndrome.  It has evolved from the well established Shifting Perspectives series, and is now in its third year.  The Down's Syndrome Association (in London) has just released the 2012 My Perspective short list of 25 photographs online.  Follow the link and you can click on each thumbnail image for a larger view.

The judges will have a hard time picking just one winner.

Wendy Harmer on the NDIS

Writer, comedian, radio presenter Wendy Harmer gives her take on the National Disability Insurance .Scheme, as a National People with Disabilities and Carers Council member:

Yes.  This budget's for you

It’s not only people with a disability who should be cheering the budget’s $1 billion commitment to a National Disability Insurance Scheme.

Every one of us should be applauding like mad.

Because perhaps, finally, Australians are beginning to understand in a profound way that disability is a part of life.

That people with disabilities are not the invisible “other”. They are us. 

... read on here on The Hoopla.

Happy Mothers' Day