Winter 2007 Newsletter - Down Syndrome New South Wales

This year communities across NSW joined the worldwide celebrations of World Down Syndrome Day with gusto. More than 1500 people, 100 businesses, 60 events ..… all combined to raise close to $40,000. Equally important, the wonderful achievements of people with Down syndrome the world over were recognised, and greater awareness and understanding of Down syndrome was achieved.

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Why '321'?

Unlike many "awareness days", when the date for World Down Syndrome Day was designated, it wasn’t simply a matter of convenience, choosing a date at random or finding an uncluttered spot on the calendar.

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Thank You

Down Syndrome NSW would like to thank and congratulate everyone who contributed to raising almost $40,000 to support people with Down syndrome to fulfil their potential. Unfortunately, there are too many people, and organisations to name them all individually here. Each contribution is important and greatly appreciated.

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World Down Syndrome Day 2007 - Messages

I would like to tell you all about my hero. At just 25 years of age she is one of the bravest people I know. During those short 25 years she has taught me so much about life: How to take a chance; how to stand up for myself; how to be accepting; how to be challenging.

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Jaime's Fabulous 30th

Jaime Lyons of Grafton was not only involved in organising a Tea for 321 with the support of local service Community Programs Inc, she also decided she would ask her friends to make a donation to Down Syndrome NSW instead of presents for her 30th birthday.

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Tackling for Down Syndrome

Every year, The Scots College’s Senior Open Cricket Team, consisting of Year 12 students organises a charity event. The students usually choose an organisation that is largely dependent on donations to maintain its activities across NSW . The 2007 students have chosen to raise money for Down Syndrome NSW.

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Special Olympics: Team Australia - World Summer Games 2007

Special Olympics Australia has announced the members of Team Australia, to compete at the World Summer Games in Shanghai in October 2007. Congratulations to all of the athletes and officials, and our very best wishes for the Games. Among the names we recognised are these NSW athletes who have Down syndrome:

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Down Syndrome Invitational Swimming Championship, Taiwan June, 2007

Five NSW swimmers: Katrina Brennan, William Brunsdon, Lucy Dumitrescu, Brendan Foley, Daniel Rumsey

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Duke of Edinburgh Awards

Four Pennant Hills high School students made a splash at the Combined High Schools swimming carnival at Homebush. Calena Olliver, James Lawrence, Emma Matthews and Rebecca Teale competed in the multi-disabilities events and all of them achieved a personal best time. The four are in a group of eight students who recently received their bronze and silver Duke of Edinburgh Awards using their swimming training and competing as the physical component of the award. (Upper North Shore and Hornsby Advocate, 26 April 2007)

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Office and Committee News

Membership Survey

Down Syndrome NSW is currently developing a new Strategic Plan. As part of this process we will be asking our members to complete a survey about the Association and its activities.

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DS NSW Annual General Meeting 2007

will be held on Saturday 11 August 20, commencing at 5:00 PM

The meeting will be held at the Theatre, Australian Technology Park, Garden Street Eveleigh (Redfern)

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Notice of Special General Meeting

Notice is given of a Special General Meeting of members to be held on Thursday 19 July 2007 at 7.00pm at PJ Gallagher’s Hotel (2nd floor), Cnr Lyons and Victoria Roads, Drummoyne.

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The 2007 Buddy Walk
Walk with a Mate

event will be held on Sunday 21 October

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New in the Library

ADULTS

The Down Syndrome Educational Trust in the UK has published a further 6 books in the Down Syndrome Issues and Information (DSii) Adult Living Series.. This new series covers a wide range of issues affecting the quality of life for adults with Down syndrome. Series editor is Professor Roy Brown. The DSii Adult Living books are designed for families and professionals. Each book includes reviews of relevant research, backed up be case studies and practical examples. References given.

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Flamenco Dancing
by: Dean Watson

Dear friends of DS NSW,

My name is Dean and I am the founder of Flamenco @ a flamenco dance and music program for adolescents and adults with Down Syndrome.

When asked by DS NSW to write about the project I thought what would be beneficial to make this a call out for students.

The classes developed over the past four years in association with DS NSW, have been met with great enthusiasm by all those who attended.

My objectivby e is to provide a professional arts experience to people that may find it difficult to attend regular classes. The classes have a great emphasis on fun.

I love teaching, the classes are all always different. The students I have met are as generous as they are talented. I would love to make the classes more regular but this will only happen with your support. I need students. So to all the families and carers please let me know if you are in contact with someone that may be interested.
Here is a link to an interview I did for a web site based in Madrid - please have a read, it will let you know more about my method.
http://www.esflamenco.com/scripts/news/ennews.asp?frmIdPagina=512
Please register your details with Miriam Parker at Down Syndrome NSW, phone 02 9683 4333, or email Miriam@dsansw.org.au.

Family Assistance Fund

What is the Family Assistance Fund?

The Family Assistance Fund provides small amounts of one-off funding (up to $2,000 in 2006) for families to purchase services and equipment to help them care for their child with a disability at home and increase family well-being.

Funding can be used to make practical changes at home, provide support for individual family members that is otherwise unavailable, and purchase non-recurrent assistive equipment. The funding helps families to address specific needs and stresses before they become a crisis and to make a difference in the care of the child or young person with a disability.

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We still don't know what 'normal ' really is
by: Michael Berube

Increasingly, professional organisations representing obstetricians and gynaecologists throughout the West (including in Australia) now recommend that prenatal testing for Down syndrome be routinely available to all women, regardless of age. A counter debate considers whether prospective parents are provided with accurate, balanced information about the potential impact of Down syndrome on a child, his family and his community. Michael Bérubé’s contribution is well argued.
Last month, breaking research raised the possibility of prenatal exams for autism. And MDs urged Canadians to expand screening for Down syndrome to all pregnant women. But as the father of a son with ‘genetic abnormalities,’ Michael Bérubé questions whether this is an advance — or merely a smokescreen for our view of disability.

By MICHAEL BÉRUBÉ

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Tribute to Dennis Holton
A pioneer in the education of children with down syndrome (1968-2007)

by: Patricia Oelwein

This is my tribute to Dennis Holton, who passed away April 10, 2007, in case you are interested in his role in the history of the Down Syndrome Program at the University of Washington 1971-1997.

Dennis Holton, who was the first infant with Down syndrome that Val Dmitriev worked with and the first child I taught to read, died (on) Tuesday, April 10, in his sleep, due to complications of diabetes. He was 39 years old.

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A Primer on Really Listening
by: Ari Galper

Toby’s Dad, Ari Galper, runs a sales education business, including a subscription newsletter – where Toby makes an appearance from time to time. As Ari says, who would have thought that a toddler with Down syndrome would have had so much to teach so many people who won’t ever meet him?

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The Importance of Imitating your Child's Sounds
by: James MacDonald, PhD, Columbus, OH

Reprinted, with permission from ‘Down Syndrome News’, Volume 30, #2 (Spring 2007) (published by the National
Down Syndrome Congress, Atlanta, Georgia)

Editor’s note: Dr MacDonald is a professor emeritus of speech language pathology at Ohio State University and has developed the Communicating Partners Center. You can see more of his work at www.jamesdmacdonald.org

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A Story from Iraq
by: Hamssa Mansour

Reprinted, with permission from the DSA (UK) Journal Issue 112 Autumn 06

I am writing this story hoping that it will inspire other mothers and sisters of children with Down syndrome, to see that no matter which part of the world they are from, whether they are poor or rich, whether they are from a developed or a developing country, they can make a change . My story is from the well known city of Baghdad, capital of Iraq.

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Websites worth a look

An on-line communication tool for home-to-school and other uses

A personal "wiki" is a personal web page that you set up to share information between a defined group. Many different types of files can be made available. One mother has reported a "wiki" to replace her 10 yr olds communication book. It gives his teacher and classroom aide access to information directly relevant to the child. Yu need to look at some examples to form an idea about how and whether it might in some aspect of your child’s life:

www.pbwiki.com

Personalised "Success Stories" for skill development

Sandbox Learning sells access to short stories (that they call Success Stories) that can be personalised, printed by the purchaser, and used to support a child through particular situations, or to develop skills. For a small fee, you have access to a story for a year (invaluable for teachers) and can make copies. A good selection includes stories about waiting, about changing from one activity to another, and several others that could be useful to help children with Down syndrome over a difficult situation.

www.sandbox-learning.com/

RESEARCH NEWS

Children interested in participating in research into reading?

Researchers at Macquarie University are currently looking for children with Down syndrome, between the ages of 7 and 12 years, who would like to take part in a research project examining the effectiveness of different types of reading instruction.

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Gallery ARTES showcases work of artists with disabilities

Studio ARTES Northside Inc. is a community-based, not-for-profit organisation based in Hornsby. Studio ARTES Northside Inc. provides a ‘whole of life’ approach to training through its artistic, recreational, educational and vocational programs for adults with disabilities. Membership is open to adults of all ages, from right across Northern Sydney and the Central Coast.

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GPS Shoes make people findable

Isaac Daniel calls the tiny Global Positioning System chip he’s embedded into a line of sneakers "peace of mind." He wishes his 8-year-old son had been wearing them when he got a call from his school in 2002 saying the boy was missing. The worried father hopped a flight to Atlanta from New York where he had been on business to find the incident had been a miscommunication and his son was safe.

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