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Down Syndrome NSW Newsletter Winter 2007 e-edition Click here to see a selection of colour photos from the print edition The deadline for copy for the Spring 2007 Newsletter is the 15th July 2007. Email to the Editor at newsletter@dsansw.org.au T for 321 ... World Down Syndrome Day has the numbers 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.
On March 21st 2006, people across the globe honoured people with Down syndrome when the Inaugural World Down Syndrome Day was launched – the date chosen because of its numbers’ symbolic significance for people with Down syndrome (see box on page 6).
In 2007, Down Syndrome NSW decided that rather than planning one big central event, it would be wonderful for as many people and communities as possible to join in the celebrations and together honour the achievements of people with Down syndrome and their families.
With that in mind, DS NSW developed the idea of ‘Tea for 321’, a simple way for anyone to get involved by holding a morning or afternoon tea at their home, school, local café, workplace, childcare centre, place of worship, local park or wherever they felt like.
Black Tie
Many did just that to great result. Others such as Tracey Barker, mother of Sienna with Down syndrome, set themselves greater challenges. When Tracey heard about the planned ‘Tea for 321’ celebrations, she decided she wanted to hold a something a bit more ‘flash’ – a ‘Black Tie Ball’ at the Illawarra Yacht Club picturesquely situated on the banks of Lake Illawarra. The only trouble was she had just 10 weeks to organise what most charities take 12 months to put together.
"When Tracey first mentioned her idea to me in January, I was sceptical that anyone could put an event together on such a scale in that tight a timeframe" commented Steve Clarke, Down Syndrome NSW’s Fundraising and Marketing Manager.
"I soon learnt that with Tracey’s drive and enthusiasm, her husband Troy, best friend Jae Hawkins, and the rest of her formidable team the impossible was possible! They got backing from a host of businesses, sold out the event in next to no time, and the night itself was great fun… a fantastic time was had by all."
There was top class entertainment – ballroom dancing, auctions, raffles, giveaways, and plenty of new friendships formed. Many of the parents of children with Down syndrome met for the first time not realising how many other similar families to their own there were on the south coast. The event raised over $12,000 in support of people with Down syndrome and their families. Tracey is looking forward to achieving even bigger and better things next year, with a bit more than 10 weeks’ preparation.
Making a splash
While the weather was kind for some, it turned from ‘scorching’ to ‘drenching’ in a single weekend, leaving Leigh Ransley with just a third of those who had registered turning up for her ‘Family Fun Day’ at Jamberoo Action Park, also on the South Coast. That didn’t stop her from raising around $2,500, and didn’t stop the 50 people who did come along having a great time with water slides, putt-putt golf, a sausage sizzle and raffle.
Leigh reported "It was very relaxed, everyone was keen to meet each other, have a chat, share experiences… I really enjoyed the day… and the kids didn’t notice the weather at all. The hardest part of the day for the parents was trying to get their kids out of the water at the end!"
Positive energy
Other events were less soggy but equally enjoyable. In South West Sydney Melissa Cotterill had been inspired to turn her home into an ‘Open House’ as part of the celebrations and raised an impressive $3300.
"The awareness aspect was what drove me" Melissa told the local media, "everyone you talk to knows someone who has Down syndrome but a lot of people don’t know much about it."
![]() Melissa was amazed at the response "We only put the idea together two weeks ago. Local businesses just gave and gave, and we had over 70 people through my home on the day. I feel so thankful for all the support Michael and I have received from Down Syndrome NSW since having Alyssa that it was the least I could do."
Down Syndrome NSW Parent Support Worker Lyn Bailey dropped in, commenting "The positive energy created by one little girl (Alyssa) coming into that family was on full display that day!"
Total shock
Julie-Anne Gartshore, meanwhile, commandeered her local Surf Life Saving Club at Black Head on the north coast to raise almost $1500, which she is ‘in total shock about."
"I had a fantastic turn out of over 60 locals…I was so overwhelmed it is hard to put into words what this means to me… my local community is awesome."
"Down Syndrome NSW has done so much for my family over the past 8 years, it feels great to give something back."
Communal spirit shines
Kelly Anderson of Cronulla teamed up with her local café, Tazza’s, to hold her casual morning get-together of mums, dads, kids, babies and friends in a centrally located park (pictured). Perfectly situated between the railway station and shops, plenty of passers-by stopped to chat and join in the relaxed celebrations in this community-minded neighbourhood.
Kelly and Stuart had been buoyed by their local community’s support since the birth of their young son Aden, and Tazza’s provided a welcoming port and regular meeting place. Café owner, Tazza had seen Aden grow up in his café from baby to happy little boy and was delighted to help Kelly raise almost $800.
Altering misconceptions
Karyn Dexter, husband Ben and daughter Talitha, in Yass also received great support from local businesses for their Morning Tea at her local Church, the Vine Christian Fellowship. Woolworths provided a $200 voucher and Kennards Hire in Goulburn supplied a disabled access portaloo and "even modified our trailer so we could get it to the event – all free of charge" Karyn commented.
"One exciting part" Karyn exclaimed "was being able to clarify so many misconceptions about Down syndrome. I had displays all around the hall with great pictures and stories…people with Down syndrome doing exciting stuff… ballroom dancing, appearing on Oprah, getting married, at work…the pastor was so impressed he asked if we could leave the displays up for Sunday! I can’t wait for the next opportunity to raise awareness and make an impact on the community!"
Media Controversy : Mary-Givney Clark also used World Down Syndrome Day to raise awareness and help educate people. Mary held a successful ‘Tea for 321’ at her workplace (pictured on page 9). However she was offended that an article about the lead up to the Day in the local paper and a photo including her daughter Sarah appeared alongside an article about pre-natal screening.
"I wrote a letter to the editor stating my objections and was pleased to see it published the following week. It proved an excellent discussion topic amongst friends, and people have approached me to discuss – generally in a positive way or wanting more information.
The Dancing Drum: Catherine Purkiss in Newcastle, held a morning tea for friends which evolved into a champagne lunch, and raised almost $400. The highlight for Catherine: "As we were raising our glasses, a friend reminded me of the name her then four year old gave to my daughter’s ‘condition’ - the Dancing Drum".
"What an absolutely perfect name! Wouldn’t we all like a bit of the Dancing Drum?" Catherine exclaimed. Meanwhile Joyce Pasfield would have to receive the award for the longest ‘Morning Tea for 321’, starting on Tuesday evening and finishing on Thursday afternoon, raising over $500.Mix … friendship, awareness, support and scones This is just a selection of the many enjoyable ‘Tea for 321’ and community events that were held across the state. The key ingredients for success seemed simple - Friends old and new, a cup of tea, a scone or two, the sharing of experiences, the spreading of information and understanding - the shining of a new light on what it really means to live with Down syndrome.
Kerri Markkunen was involved in organising three ‘morning tea for 321’ events with the help of her family. She commented "Everyone liked the information we made available but the big factor in the events’ success was the personal connection – knowing someone had a family member with Down syndrome."
Katrina Ginsburg brought her toddler Kayla to her mum’s school, "Kayla showed them some signs and danced for them. They loved it and didn’t see her as any different to any other toddler!"
John Collins also touched people at a Tea for 321 organised with his wife at the All Hallows Church at Five Dock. He made an informative yet moving speech at the event which raised over $800. Wife, Kathleen, said "I was proud of our Day and proud of our daughter, Emily, who will turn 6 next month."
Elizabeth Noble also took a personal approach "I got everyone to find out about each other by asking whether they had a child with Down syndrome and to find out about them. This broke the ice."
Debbie Lawson praised the way her daughter Olivia’s school, St Paul’s Primary Gateshead, really got into the spirit of the day in a big way. "All the children in Olivia’s year came to school out-of-uniform in their brightest colours, as Olivia loves bright colours. At the start of the day they had a special assembly to honour 321 Day."
"Then her class had a party and Olivia’s aide (bless her) made mountains of brightly iced cupcakes and other party food. At lunchtime, every child in the school (250) was given a free iceblock from the canteen so they could all experience what a wonderful gift life is, even one with disability (blatant bribery but who cares?). What a blessing to have a fully supportive and interested school community."
The president of Down Syndrome NSW, Margot Elliffe, told ABC radio that people with Down syndrome are now leading more confident, happy, independent and productive lives than ever dreamed possible in less enlightened times.
Margot summed up the feeling of many, commenting "The mood on this special day is very positive. People with Down syndrome are now leading full, active lives in the community. Today is all about the whole community joining in and celebrating their achievements."
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.
The numbers that represent the 21st of March have a special connection with Down syndrome, beyond the fact that it is the world day of celebration for people with Down syndrome, their families and friends.
Down syndrome is caused by 3 copies of Chromosome 21 (an occurrence known as "trisomy 21"). Hence the date "3/21" was chosen to help people better understand Down syndrome as well as to honour the significant achievements and progress of people with the "syndrome" first identified by Dr John Langdon Down in 1866. 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.
Fundraisers raising over $500
Tracey Barker – Black Tie Ball
Melissa Cotterill – ‘Open House for 321’
Leigh Ransley – ‘Jamberoo Park Family Fun Day’
Maria Polczynski, Henry Davis York – ‘Tea for 321’
Julia-Anne Gartshore – ‘Tea for 321’
Meaghan Hepplewhite, Lake Macquarie – ‘321 Family Fun Day’
Joye Oldham, JOPO Feng Shui and Crystals – ‘321 Open Day’
Kathleen Collins, All Hallows Church – ‘Tea for 321’
Kerry Anderson – ‘Tazza’s for 321’
Sue Harding – ‘Tea for 321’
Gaye Stivens, CPA Global Solutions – ‘Tea for 321’
Honi Youssef – ‘Tea for 321’
Robyn Blackley – ‘Tea for 321’
Joyce Pasfield – ‘Tea for 321’
Businesses contributing over $300 in gifts
Innovative Handrails and Gates
Wollongong Wolves Football Club
Kleenmaid
Just Cuts – Figtree
Fotosportz
Daikin Australia
Danny Steel, artist
BlueScope Steel
Kennards Hire – Goulburn
BridgeClimb Sydney
Speerman Cycles
Fitness First
(Please go to www.dsansw.org.au for full list of credits)
To these and to everyone else who gave generously their time, money, goods and services to make World Down Syndrome Day such a great success – Thank You! 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.
And, most importantly, how to love – unconditionally.
She will never be Prime Minister; never be the Managing Director of an organisation; never be a Formula 1 driver. But what she is, and will continue to be, is an inspiration to all those who get to know her. Don’t judge by appearance but get to know the person inside and then you, too, will be privileged to meet my hero ..... Kate. Elizabeth
Our daughter, Lisa, is now 24 years old, works five days a week, plays many sports, has a hectic social life and has great plans for her life ahead. It seems so insignificant these days to mention that she also has Down syndrome. Lisa just keeps on jumping any hurdles that life puts before her.
Please "tell the World" that we are a group of very proud parents, family, friends and work mates who love Lisa for the beautiful person she is today. More importantly we thank God for the way she has changed the lives of so many people she has touched along her jourmey through life.
Thanks to Down Syndrome NSW for all the support and encourage-ment particularly in those early years.
Love to all, John, Diane and Karen McKerlie
321 will be a special day but so has been every day for the past seven years, following our daughter, Olivia’s, life saving heart surgery. World Down Syndrome Day lets us focus on how special and simple life can be if we view the world through the loving eyes of our sons and daughters. Yes, we have had difficult times and advancement comes at a struggle, but each achievement is resoundingly celebrated … along the way Olivia always stops to smell the flowers. Our world is enriched by 321 and we would not have it differently.
Jason & Debbie Lawson We have recently become grandparents to a beautiful little girl - Akira Daly. When the doctors told her parents that she had Down syndrome, it started a complete family pull together behind this little girl. There is no denying the sadness we all felt for her but with time and some reading we have learned that we have a girl that will give us untold joy and happiness. We now understand that these children are given to families for a reason and we are all becoming stronger since her birth and will continue to take a close interest in all her activities.
Dennis and Rosemary Daly
Happy World Down Syndrome Day! How lucky are we to be able to join in this day. Without our beautiful Kez, who is 16 years old we wouldn’t be part of such a great organisation. She is about to embark on her first overseas trip without her family… and will be away from us for her longest time ever. We are all so proud that she has been able to achieve so much in her 16 years.
Trish, Gerard, Aaron, Teagan and Tim Glenane Best wishes to everyone as we celebrate World Down Syndrome Day, 2007! Celebrate is the operative word!!! We feel privileged to have shared our lives with James for 23 years. A huge thanks to everyone at DS NSW and all the people we have met on the journey to date. James is a real blessing in our lives. He works five days a week… he has many hobbies, including footy, cricket, cooking and music. He puts a lot of effort into whatever he does. We are very proud of James and he continues to make a positive impact in the lives of the people he meets. We give thanks to God for James and love him heaps.
Kim, Tony, Sarah and Claire How our lives have changed over the past 23 years! Our hopes and dreams were turned upside down when we were told that our baby Louise had Down syndrome. We gradually picked ourselves up as we started to live our new, challenging life as the parents of a child with a disability.
We have learnt so much … and will continue to learn and be enriched from our day to day experiences with Louise and our many friends with a disability. Louise has accomplished much more than we ever thought possible when first told of her disability.
One of the greatest things we have learnt from our journey with Louise is to accept and value people for who they are, and to be thankful for the many blessings we receive rather than focus on the "down" side. One of these blessings is the many wonderful, lifetime friendships we have made through Louise. A big "thank you" to the staff and volunteers of the Down Syndrome Association of New South Wales for all your support, advice and encouragement over the past 23 years.
Janette and Andrew Our son whose name happens to be Gordon, meaning ‘man of strength’ could not be more suited. I’m always inspired to see the younger adults and all they have accomplished in their lives. I wish the children and families a day filled with lots of laughter and joy. And please have a spot of tea for us.
Lee Ann Wolf, New York
Our gorgeous, cheeky Georgie-Rose is now 4 1/2yrs old and is the absolute sunshine and light of all our lives. How did we ever live without her?? She has taught us all so much and we continue to learn from her every day. We have also met the most amazing people from all walks of life and feel so lucky to be blessed with having these opportunities.
Thank you all at Down Syndrome NSW for your ongoing support and encouragement to all of us and to the great website which is a constant place of information, reassurance and support.
May you all enjoy your special day/week...
With best wishes and happy thoughts - Candy, Steve, Samantha, Jared, and Georgie-Rose Connors
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.
Jaime’s mother Maureen writes:
"Jaime had a most wonderful 30th Birthday – celebrated on the Grafton River Cruise, a 3 hour trip up the Clarence River.
Catering was provided by the restaurant ("The Vines") where Jaime does volunteer work two afternoons a week.
Jaime was so thrilled to be able to raise funds and help Down Syndrome NSW continue their amazing work. Jaime and I have benefited greatly from the Association – borrowing great books, DVDs, CDs over the years, and the articles in the newsletter have been so helpful to us both.
I think Jaime would agree it was her best birthday ever. Her friends are still talking about it." 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.
To add some excitement to this year’s event, the Scots Open 3rd Cricket Team and a few "ring-ins" from the first fifteen rugby union players volunteered to participate in an attempt to break the Guinness Book of records World Tackling Record. The record was held by the Aberdeen Wanderers under 18s rugby union team in Scotland. The record attempt was held on 15 March on the school’s main oval, under the watchful eye of an official adjudicator, and a cheer squad of students and parents.
The previous record was 2670 tackles completed in one hour, by two teams. The Scots students, led by Captain Jack McLennan, were thrilled to break the record by scoring a total of 4160 tackles in the allotted time! Official confirmation of the record will be determined by the Guinness Book of Records after all the documentation has been verified in London.
The winner is Down Syndrome NSW ,and the families who will benefit from the $4160 the Scots students are hoping to raise through sponsorship. After hearing about the scope of our work. the students have requested that the money be used to purchase copies of the DVD "Down Syndrome: The First 18 Months" and the booklet "Living with Down Syndrome" to be given to families of newborns, especially families from country NSW.
On behalf of the families who will benefit from their hard work and generosity, Down Syndrome NSW congratulates and thanks each of the students and sponsors, the organising teacher, Mr Robert Heritage, teacher Mr Brett Cranfield, Ms Kerri Russo Cousins from The Scots College Administration Office, and Jason Russo, who represented members of Down Syndrome NSW at the record attempt. 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:
Christopher Bunton (Gymnastics)
Beth Hull (Gymnastics)
Amrita Ramjas (Gymnastics)
Saxon Graham (Golf)
Brendan Foley (Softball).
(Brendan represented Australian at the Down Syndrome World Swimming Championships in Ireland in 2006). If we have missed anyone, please let us know! The 127 athletes will compete in 11 sports, and will be supported by 37 officials, including Paul Phelan, who is a football coach. For all the latest news about the World Summer Games 2007, and to make a donation to support Team Australia, go to the Special Olympics Australia website: http://www.specialolympics.com.au/ and the SO World Games 2007 website: http://www.2007specialolympics.com/Webenglish/index.aspx Down Syndrome Invitational Swimming Championship, Taiwan June, 2007 Five NSW swimmers: Katrina Brennan, William Brunsdon, Lucy Dumitrescu, Brendan Foley, Daniel Rumsey
have been selected to represent Australia at the Down Syndrome Invitational Swimming Championships in Taiwan 5-10 June, 2007. The Australian team, are all members of the Down Syndrome Down Under Swimming Organisation. Seventeen swimmers were selected from across Australia on their great performances at the Down Syndrome 2006 World Swimming Championships in Ireland in 2006.
We wish the whole team good swimming. If you would like to send a message of support, "herograms" can be emailed to:
teamaustraliaherogram@yahoo.com.au
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)
James, Emma and Rebecca all have Down syndrome. Ashlie Becker, another Pennant Hills High student who has Down syndrome, is working towards her Duke of Edinburgh Award, with Rebecca, under the guidance of support unit teacher, Vicki Morton.
Rebecca and Ashlie are on the way to completing their bronze level, and are required to participate in some community service. Rebecca is assisting with coaching her sister Meggin’s netball team. They are required to learn a new skill and keep a record. They have already been on a few campouts in the bush, working towards their end of year campout test to be awarded their bronze. They will prepare a menu to cook for themselves while camping, pack their food, belongings and equipment. When they get to camp, they will help to put up tents, hike, play games, sing camp songs doing just about all the activities expected of any other person participating in the Duke of Edinburgh Awards Scheme. 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.
All members and other stakeholders will have the opportunity to tell us what they think about the Association and how we should be planning for our future. We will also be asking for volunteers to participate in Focus Groups on particular aspects of our work.
The membership Survey will be available on our website from early June and copies will also be available from the office.
Framework To Improve Health Care Of People With Intellectual Disabilities
DS NSW has submitted a response to the NSW Health discussion paper on development of a services framework to incorporate both generic and specialist health care services, endorsing a proposal for multi-tiered services accessible to people with intellectual disabilities across NSW. Parent Support and Information Services The Parent Support Team has been notified of the births of 23 babies since 1 January (up to 16 May, 2007). Each family has been offered an initial year of membership of DS NSW free of charge, and most have taken up the offer. The video Parent to Parent has been transferred to DVD and is now included in every New Parent Information Kit. The Babies’ Picnic scheduled for 28 April was cancelled because of rain. Judy and Lynn are considering options for a winter event for the young families who had planned to meet again. This is the second picnic to have been rained out during the drought! Lynn and Judy are currently organising the now annual Mothers’ Weekend, to be held at the end of June. The year’s seminar and workshop program started on 1 February, with an evening organised by Relationships Australia (Wollongong) to introduce a five week program for parents and carers of children with Down syndrome and other developmental disabilities. Jill O’Connor facilitated the workshop, with Heather McAlpine from RA. Judy Davidson and Jill O’Connor worked in collaboration with Mandy Muller from the The Spastic Centre’s southern NSW outreach service to present four workshops for parents and for professionals in Moruya and in Eden during February. A total of 19 family carers and 52 professionals attended. On 7 March Helen Wheatley co-presented with Jill O’Connor, a workshop for primary school teachers in Newscastle, for an audience of 63 participants. Helen has since done a follow-up workshop with teacher’s aides (special) at the request of the Dept. Education and Training. Judy Davidson and Jill O’Connor travelled to the North Coast in March to present a workshop on communication in Grafton (35 participants), and one for Catholic school teachers in Coffs Harbour (15 participants). While in the area, we were invited to visit Mary Help of Christians Primary School at Tourmina, where three students with Down syndrome are enrolled in Kindergarten, Year 1 and Year 2. The school held a Tea for 321 morning tea, and presented us with the proceeds. The local paper published an article and photo later in the week, helping to raise awareness in the community. We held a very successful workshop for Arabic speaking parents in Bankstown on 16 May, with 12 family carers, and two local service providers attending. Lila Ibrahim provided the essential professional interpreting service, and there was a great deal of delightfully animated participation in both Arabic and English. The participants are keen to preserve the momentum generated and we will follow up with regular support and information meetings. We expect to have about 20 participants for the Communication workshop scheduled for 26 March in the Illawarra, to be co-presented by Helen Wheatley and Jill O’Connor. The evening "Conversation with Eddie Bartnik" on 31 May to introduce parents and adult siblings to the concept of lifetime planning developed by PLAN in Canada (www.plan.ca) and PIN in Western Australia (www.pin.org.au) was booked out by 16 May. It is expected that further opportunities to explore the concept and discuss how it might be implemented by NSW families will arise over the next few months. Currently we are taking registrations and finalising plans for the two one-day seminars to be presented by Prof Sue Buckley and Ms Julie Hughes from the Down Syndrome Educational Trust (UK) in Sydney in August. Registration for these events and future seminars and workshops are available on-line, from our website. Miriam Parker organised a popular city coffee morning for parents of adolescents and adults on 17 March, with 19 people meeting at the Tea Rooms in the Queen Victoria Building. As notified in the DS NSW Update, the 2007 Families’ weekend has been moved to November, and Miriam is again taking responsibility for its organisation. This year’s event will coincide with the Up Club Camp, also to be held at the Collaroy Centre. NSW Health has advised us that funding for the "All the Way" Project will continue for a second three year term, from 1 July 2007. A new funding and performance agreement to be negotiated allowing us to incorporate amendments to activities in line with evaluation and outcomes of the first triennium. One of the major changes will be to extend the seminar program to include parents and family carers of children from 6 years (rather than the current lower limit of adolescence). Information events for families of children under six will be developed with support from a separate funding source. Borrowing from the library continues to increase, aided by more library information being available on our website, and by continued additions to our collection as funding allows. The growing collection of DVDs are among the most popular items borrowed. All of these activities and services are made possible with the support of our clerical and administrative staff, and our volunteers. 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)
At the meeting the Annual Financial Statements will be presented and elections will be held for membership of the Management Committee
Light refreshments will be provided
Visit our website (www.dsansw.org.au) or phone the DS NSW office (02 9683 4333) to:
· Download/request a Nomination Form for membership of the Management Committee. The Closing Date for nominations is 11 July 2007. · register to attend the AGM · download/request a map of the Australian Technology Park 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.
The Special General Meeting is being held to consider the following Special Resolution:
Special Resolution
"That the amendments to the Constitution passed at the Annual General Meetings in 2004 and 2005 be ratified, that any previous amendments made to the Constitution be ratified and that the Constitution of the Association dated 11 September 2005 be accepted as the current and valid Constitution of the Association".
Background
The Executive Officer of the Association was recently appointed as the new Public Officer of Down Syndrome NSW. During the course of making some enquiries through the Registry of Cooperatives and Associations (the Registry) we discovered that the amendments passed at our Annual General Meetings in 2004 and 2005 were not accepted for lodgement by the Registry.
While we did write to the Registry after both meetings, we did not meet their requirements in terms of timelines, the format of our submissions or the payment of fees. On this basis our amendments were not accepted for lodgement – although we were not advised of this at the time.
We have been advised formally by the Registry that to have the changes accepted they must be passed in a special resolution at a general meeting. The Registry has suggested that the Association passes one resolution in relation to a complete set or rules incorporating all previous alterations.
Our Constitution
It is not clear from our records and those of the Registry that all previous amendments to our Constitution have been accepted by the Registry for lodgement. To ensure that we are operating in accordance with the wishes of our members and within the provisions of the Associations Incorporation Act, it is now appropriate that we establish the 11 September 2005 version of our Constitution as the valid Constitution for the Association. This version incorporates all previous amendments including those passed at the 2004 and 2005 Annual General Meetings.
A copy of this Constitution can be inspected at the office of the Association and is available on our website, together with details of the amendments passed at the 2004 and 2005 Annual General Meetings. If you would like copies of these documents posted to you please contact the Executive Officer on 02 9683 1900 or by email at executiveofficer@dsansw.org.au
If you intend coming to the Special General Meeting please register online - or by telephoning 02 9683 1900 - or by email to executiveofficer@dsansw.org.au The 2007 Buddy Walk Walk with a Mate event will be held on Sunday 21 October
We encourage you to walk with your family, friends and colleagues to celebrate Down syndrome Awareness Week and to raise funds for Down Syndrome NSW.
This year walkers will have the opportunity to raise funds for the work of the Association by getting sponsorship from family, friends, workmates, local businesses etc.
More details will be available soon in the newsletters and on the website. For information Contact Steve Clarke at marketing@dsansw.org.au or Phillip Prideaux at executiveofficer@dsansw.org.au 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. The books are written by expert researchers and practitioners from around the world. New titles:
· Recreation and adults with Down syndrome
· Transition to employment
· International and cultural aspects of Down syndrome
· Families of adults with Down syndrome
· Inclusive post-secondary (tertiary) education for adults with Down syndrome and other developmental disabilities: a promising path to an inclusive life
· People with Down syndrome and the law: an Australian perspective
Other titles in the series:
· Life for adults with Down syndrome: an overview
· Information communication technology for adults with Down syndrome
· Advocacy for adults with Down syndrome
· Spiritual well-being for adults with Down syndrome
· Drama and the arts for adults with Down syndrome: benefits, options and resources
Reviews of individual volumes will be posted on the library pages of our website.
EDUCATION
Down Syndrome Issues and Information Early Years Development Pack (0-5 years) for Parents and Professionals. Series editors are Professor Sue Buckley and Gillian Bird. Designed to support early development from birth to school, the Dsii modules include a wealth of information covering all areas of early cognitive development. The series provides practical advice about a range of developmental, health and social issues in a concise and accessible format. Modules contain on average 46 pages.
· Living with Down syndrome
· An overview of the development of infants with DS (0-5 years)
· Assisting individuals with DS to access IT: an overview
· Speech and language development for individuals with DS: an overview
· Speech and language development for infants with DS (0-5 years)
· Memory development for individuals with DS
· Reading and writing for individuals with DS: an overview
· Reading and writing development for infants with DS (0-5 years)
· Number skills for individuals with DS: an overview
· Number skills development for infants with DS (0-5 years)
· Motor development for individuals with DS: an overview
· Social development for individuals with DS: an overview
· Education for individuals with DS: an overview
· Utilising IT to assist the education of individuals with DS
· Issues for families with children with DS
NEW EDUCATIONAL DVDs
Development in practice: activities for babies with Down syndrome.
A Downsed Production. Down Syndrome Educational Trust : Portsmouth, UK, 2007. 1 videodisc (DVD) Duration 77 minutes + viewer’s guide (4 p.)
Another wonderful series from the Down Syndrome Education Trust: Down Syndrome In Practice is a new series of films that clearly illustrate effective educational practice for children with Down syndrome.
Lynn Bailey, a DS NSW Parent Support staff member, says:
This is a very practical DVD with a lot of "how to" instructions. I think this DVD compliments one of our other new parent resources, "Down Syndrome: the first 18 months" well.
This would be a very good source of information for parents who do not have access to and early intervention service, or Dads who do not hear the instructions from the professionals. The educators give us a lot of helpful advice and hints on what to do with your baby during the play time you have together, so that you both achieve maximum benefit. It also explains why you are doing particular exercises, so that you understand the long term benefits.
Inclusion in practice: educating children with Down syndrome at primary school. A DownsEd Production. Down Syndrome Educational Trust : Portsmouth, UK, 2007(1 videodisc (DVD) Duration 75 minutes)
Another film in the Down Syndrome In Practice series. Examines the range of issues for children, including learning in the classroom, planning and support, and social inclusion. Research shows that inclusive education offers great benefits for children with Down syndrome: this unique film explores how inclusion works in practice.
Judy Davidson, our Parent Support Co-ordinator writes:
This is a positive, practical film looking at the keys to successful inclusion for children with Down syndrome in a mainstream educational setting. All advice and strategies are based on evidence gathered through practical experience and research.
Researchers, parents, teachers and support staff discuss their concerns, issues that have arisen and practical strategies relating to successful inclusion.
Issues discussed include literacy, numeracy, planning, learning in classrooms, social inclusion and supporting and encouraging appropriate behaviour.
A ‘must see’ DVD for all families considering mainstream education for their child, and a great resource to support and encourage all those educating a primary school aged child in a mainstream enrolment.
FAMILY RELATIONS
Tuesday’s Child, by Kathy Evans. Bantam Australia, 2007
"In every life there is a defining moment: Caoimhe’s diagnosis was mine….". When journalist Kathy Evans wrote what was to become an award –winning series of articles about the birth of her third child, born with Down syndrome, she was inundated with responses from parents, professionals teachers, who wanted to know more, and urged her to keep writing. The result is an intensely moving account of life with Caoimhe: a personal story mixed with insightful journalism, highlighting society’s attitudes to difference as well as examining the minefield that is prenatal testing. 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.
Who can get funding? Families must be caring for:
A child or young person with a disability recognised under the Disability Services Act 1993, occasioning a significant functional impairment.
The Fund is accessible to families caring for a child or young person under 18 years of age who is eligible and receiving a service from DADHC or a DADHC funded non-government service.
Eligibility does not automatically mean that a family will receive funding. The number of families able to be assisted is dependent on funding availability and level of need.
Priorities will be established, including "...... families on low to moderate incomes (in 2006 $62,647 or less per annum)"To find out more about the Family Assistance Fund ask your case manager or contact your DADHC Regional/Area Office:
Metro North Region - (02) 8855 4200
Metro South Region - (02) 9334 3700 Western Region - 1300 134 450 Northern Region - 1300 364 563 Hunter Region - (02) 4908 5229 Southern Region - Illawarra (02) 4254 0319 Southern Highlands (02) 6200 7300 Or consult the Department of Ageing, Disability and Home Care website, where this information sheet and application forms for the Family Assistance Fund can be downloaded: www.dadhc.nsw.gov.au/dadhc/People+with+a+disability/Services+for+families.htm
If you do not have access to the Internet, you can call Miriam Parker at Down Syndrome NSW on 02 9683 4333 for a print copy of the Fact Sheet and Application Form
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
Published in the Toronto Globe and Mail, Saturday 4th March, 2007 Reprinted with the generous permission of the author In 1991, when my wife Janet was pregnant with our second child, we were told by her obstetrician that we might want to consider an amniocentesis - just to make sure. "Just to make sure of what?" we asked. "We had a sonogram, and we imagine that any serious problems would have shown up there." An amniocentesis would take genetic material from the fetus itself, the doctor explained, thus affording us a crystal-clear indication of any anomalies that might lead us to terminate the pregnancy. Janet and I discussed the possibility that day, but we didn’t discuss it for long. Janet pointed out that we wouldn’t get the results until 16 to 18 weeks into the pregnancy and, though we both supported abortion rights, we did not want to wait until the second trimester before deciding to terminate - unless the fetus was very severely damaged. And something very severe, such as anencephaly, would have been spotted on the sonogram. I added (because I’d just learned it from reading the brochure) that amniocentesis induces miscarriage in one of every 200 attempts. Curiously, at age 36, those were the same odds against Janet’s having a child with Down syndrome. "And what if we had a child with Down syndrome?" she asked. "Well, then," I said, uttering one of the more prescient and consequential sentences of my life, "we’d just love the baby all the more." I guess it was a sweet thing to say, though in retrospect it was incredibly naive. Jamie Bérubé was born that September. He has Down syndrome. We love him dearly, and he delights us daily - not merely by being cute, but by being clever and sly and witty and charming and a good kid to his brother Nick. But I didn’t know anything about Down syndrome in 1991. I thought that people who had it were kind of flabby and passive and had a life expectancy in the 20s. I knew just enough — about disability and about my own heart - to make what I think was the right decision about prenatal screening. I would make the same decision today, even more emphatically, but I would bring to that decision a deeper skepticism, born of both experience and study, about whether prenatal screening tells us everything we think we need to know. Since 1991, people with Down syndrome have made - as the cliché has it —great strides. So has biomedicine. It is now possible, as I suggested in the book about Jamie I published in 1996, to do a definitive genetic analysis of a developing fetus as early as eight weeks. And it’s possible to do so without sticking a great big fat needle into the uterus, as one does in amniocentesis. Prospective parents who encounter the medical apparatus of prenatal screening today, then, are facing a world utterly unlike the one Janet and I inhabited 16 years ago: On the one hand, they can see happy and healthy children with Down syndrome all around them, being integrated into public life as never before; on the other hand, they can choose to screen for "genetic anomalies" (of which Down syndrome is by far the most prevalent) without fear of miscarriage and without the moral murk of a second-trimester abortion. Many opponents of abortion rights, of course, do not understand why the moral murk should be any murkier in week 18 than in week eight. For them, life ("defects" or not) begins at conception and childbirth is mandatory. Yet even some opponents of abortion rights, together with most supporters, see moral shades of grey at every point in a pregnancy. They believe that some fetuses are more developed than others, and some fetuses are more disabled than others. Recognition of moral complexity in childbearing, in fact, can make for some strange alliances. For example, as Rayna Rapp points out in Testing Women, Testing the Fetus, the ultra-orthodox Hasidim in New York are strenuous promotors of prenatal genetic screening because Tay-Sachs disease - a genetic disability so excruciatingly debilitating that it sometimes seems as if it were invented by bioethicists as an extreme limit case - occurs disproportionately often in Ashkenazi Jews Surely, one would think, the eradication of Tay-Sachs would be an unqualified good for the species as a whole, not to mention the stricken parents who have to watch their child succumb to the disease. Surely it makes sense to screen for such things.
But does it make as much sense to screen for Down syndrome? Or for genetic markers that might indicate deafness, or cystic fibrosis, or Parkinson’s Disease, or Huntington’s, or Alzheimer’s? Why should we try to detect relatively mild disabilities in utero - or degenerative diseases that may not appear for another 50 years?
The debate about prenatal screening has managed, remarkably, to obscure two critical things: We have no idea what we mean when we talk about "screening," and we have no idea what we mean when we think about "unqualified good for the species as a whole." And yet as the technology of prenatal screening improves with each year, we tell ourselves we’re getting somewhere. How can that be?
Perhaps it’s that we live in a world where an ounce of prevention is rightly considered to be better than a lifetime of symptomatic treatment - but where the logic of "prevention" is wrongly mapped onto pregnancy and childbirth, so that it perversely seems (to some people) as if it’s always better to prevent some lives than to live them.
Or perhaps it’s that we don’t stop to consider all the things we can’t see when we "screen" pregnancies. Things such as cerebral palsy or some forms of autism or schizophrenia or, my favourite term, "pervasive developmental delay" — a formal way of saying "we have no idea what’s going on in there." Some advocates of across-the-board prenatal screening seem to be especially confused about what the technology can and can’t do.
Or perhaps it’s that we don’t yet know how to distinguish disability from disease, ordinary fleshly frailty from relentless predatory illness.
That distinction was driven home to me last year when I taught the first graduate seminar in disability studies at Penn State University. My class was reading essays on the overlap between disability activism and gay/lesbian activism — an overlap concentrated on, but not exclusive to, the history of AIDS.
One of my students objected to the conflation of AIDS with disability in general. He understood, he said, why disability activists have resisted the idea that disability is something that can be "cured" or "prevented" with technological advances and medical interventions, just as gay and lesbian activists have resisted the idea that homosexuality is a curable disease.
He understood why people with congenital disabilities would recoil from a prenatal screening initiative whose assumptions seem to be that the world would be a better place if they had never been born.
But, he said, if a cure for AIDS were found tomorrow, would he be happy? If HIV could be wiped from the face of the Earth, would he support its eradication? Yes, yes he would. Without hesitation, without a second’s misgiving.
The class took a collective breath. For weeks, we’d been reading the work of disability activists who argue, justifiably enough, that contemporary biomedicine frames everything in terms of the miracle cure - the scientific breakthrough that will allow the lame to walk and the blind to see. We’d read their scathing accounts of eugenics, the early pseudoscience of making better babies.
But in all that reading, we’d never come across a disability activist who calls for the creation of a Smallpox Restoration Society or a Polio Preservation League. The elimination of smallpox and polio (and tuberculosis and cholera and bubonic plague) seems to most people to be an unqualified good for the species. Even in the work of disability activists who would never give a moment’s thought to providing all deaf people with cochlear implants, there is a common sense that there are some human conditions we are better off without.
But - and this is the critical point - deafness isn’t one of them. Tay-Sachs is. Down syndrome, I submit, is not. So although it makes sense to screen for Tay-Sachs, it may not make sense to screen for far milder conditions. For that matter, there are innumerable contexts in which deafness is not a disability at all. In places where everyone is fluent in sign language, it’s is just another name for a linguistic minority.
It’s true that most people — between 80 and 90 per cent — who screen for Down syndrome will terminate the pregnancy if the results are "positive." I wish this weren’t so, but I don’t believe I should try to realize that wish by outlawing either abortion or prenatal screening. I believe I should try, instead, to persuade others that the possible eradication of Down syndrome just isn’t something our species has achieved, or should achieve, any consensus about.
I didn’t think it was worth it to screen for Down syndrome when Janet was pregnant in 1991. And back then I didn’t have any idea that our "disabled" child would go on to learn elementary French or the characteristics of 40 different species of sharks. I didn’t dream that he’d be such a capable swimmer and basketball player, or such an enthusiastic fan of Harry Potter.
Now that I know what Jamie is like, I’ve come to the conclusion that our fear of mental retardation is out of all proportion to the phenomenon itself, and that millions of "developmentally delayed" people can live happy and fulfilling lives — far happier and more fulfilling than most of us "normal" and "gifted" folk have been able to imagine.
Occasionally, I run into parents of children with Down syndrome who are quite certain that no one should ever be able to make prenatal decisions with which they themselves would disagree. In the United States, for instance, conservative pundit George Will has recently written that the legalization of abortion, combined with prenatal screening, has led society on "search-and-destroy missions" meant to rid the world of people like his son Jon. "Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place."
Perhaps. And perhaps the world would be a sweeter place if we acknowledged that prospective parents who choose not to bring pregnancies to term are actually making difficult moral decisions rather than engaging in "moral regression." That way, we could try to persuade people not to abort fetuses with Down syndrome - or any other disability - rather than coercing them into mandatory childbirth regardless of the circumstances.
But the world is not a sweet place, and it has only recently - fitfully at that - attempted to provide meaningful accommodation for people with disabilities. Some of them, admittedly, require substantial assistance; others, like Jamie, are easier to accommodate socially than, say, a selfish, intemperate "normal" person. Some require nothing more than closed captioning; others require "job coaches" - if they manage to find work at all.
Indeed, as a society and as a species, we still don’t seem to know what "normal" really is. We could think of the norm as (a) what’s left over when we get rid of all the abnormalities, or (b) nothing more than the statistical mean in a fully inclusive society that incorporates every single one of us into public life to the greatest extent possible.
I prefer (b) myself, and I think you should too; but I worry that uncritical advocates of prenatal screening are thinking in terms of (a). Which leaves us with a bitter paradox - that even though we haven’t begun to explore the ways in which we could include people with disabilities in our society, we devote precious time and resources to developing better ways of spotting them before they are born.
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.
Val tells the story of seeing him in an infant carrier on his mother’s back at the Developmental Psychology Laboratory on campus, his little head flopped over to one side.
Val asked her, "Would you like an infant stimulation program for your baby?" His mother lifted Dennis out of the carrier and handed him to Val and said, "Here."
And that was the beginning of the Down Syndrome Program at the University of Washington.
Val made a movie, "The Operant Conditioning of a Down Syndrome Infant" starring Dennis, of course. (This was 1968-69 and Skinner was the big thing - and the big thing that changed things for children with disabilities.) Based on the pilot study, Val wrote a proposal for early intervention for children with DS.
The preschool started January 1971 at the EEU, room CD140. I started as preschool teacher January 1972.
Soon after his 4th birthday, I was telling Val how bright Dennis was. He had taken a toy dinosaur from the animal basket, gone to the book shelf, selected a book about dinosaurs, and pointed to the pictures and toy.
Because he had no verbal communication, Val said, "Give him a means of communication, teach him to read." And that I did.
He could match and select words and respond to animal words with the sound of the animals, but still no words.
The SLP suggested that I teach him to sign the words. And this I did. And the rest is history.
He started talking, and the first words he said were the words he read. Soon all the children in his class were reading. It was a very, very exciting time.
The children showed us just how remarkable they could be.
Katie Doland told me that the parents of children with other disabilities at The Arc "couldn’t stand the parents of the children with DS who were in the EEU program" — I guess we all got really carried away, but we really had something wonderful to brag about.
Katie is no longer with us, but we are now sharing the method for children with autism spectrum disorders and other disabilities. Leslie Broun, a specialist in autism, and I have written a book, "Literacy Skill Development for Students with Special Learning Needs: A Strength-Based Approach" that will be out "any day now."
"Teaching Reading to Children with Down Syndrome" has sold over 62,000 copies in English, and has been published in German and Arabic. I have provided training in the method in 15 countries spanning 6 continents.
Dennis started something grand.
Dennis will always hold a special place in my heart. He was very special in many ways. Because of him, many dreams have come true, and thousands of children with Down syndrome are literate. His photo is in the preface of my book - you can see that he was a beautiful little boy who pulled a lot of heart strings.
We received Pat’s tribute to Dennis when it was posted to an email list based in the US. Another list member, Liz Steele, from Canada, expressed the thoughts of many parents when she responded:
Thanks so much for this post! It has renewed my strength to keep giving back for what my son has received through the efforts of pioneers in education for persons with disabilities. I just checked the picture of Dennis in Pat’s book. What a cutie! How sad that he’s gone at only 39. I wonder how many children have benefited from the 62,000+ books printed. My son certainly has. Liz Steele
Many of us know Pat Olwein’s name very well from her book, so it was good to be put in direct touch with her when we were seeking permission to reprint her tribute to Dennis, and to be reminded of her direct contribution to the establishment of early intervention here in Australia. Some of our members will remember her from their time as new parents and pioneers in the Macquarie Program. To some of you it will seem like ancient history (the early 70s!), but to some of us it seems like yesterday …..this is part of our correspondence with Pat:
You can, indeed (reprint) my tribute to Dennis. It is especially gratifying hearing from someone in Australia, as the Down Syndrome Program that was located at Macquarie University …… was our very first "international" replication training. Bernie Thorley, a (Macquarie) professor on sabbatical in 1974, was so impressed with the DS Program at the UW, he requested training for their "school year" that began in March 1975. Val Dmitriev went first, for a three-week period to provide the initial training, assess the children, and set-up a classroom. I overlapped with her a week and became the teacher/trainer in the program (that included three classes, infant, toddler, and preschool) for two months. Kristin Nichols, another teacher in the program, took over for the final seven months of the school year.
Val and I are still in contact with Moira Pieterse, who was the original coordinator of the program. Moira and her staff trained parents and educators throughout Australia and the "Eastern Hemisphere". I have referenced their reading data over the years, including in my book, "Teaching Reading to Children with Down Syndrome."
We all treasure our Australian experience and having the opportunity to be a part of the Down Syndrome Program at Macquarie University. My family had the privilege of going with me. My husband took a leave of absence from his work, and our children (6 and 9 at the time) attended a public school in North Ryde. We all have wonderful memories. As our plane was taking off from Sydney airport, our daughter (the 9 year old), with tears in her eyes, said, "I just know I’ll return to Australia someday." So far, the only member of our family to return is our son - he, too, went as a trainer, for Microsoft. Val Dmitriev has made a return visit.
In my "old age" I am very sentimental about it all, and I marvel at all the wonderful things that started when Margaret Holden presented her baby to Val with a grateful "here."
Pat Oelwein
Our thanks to Pam Wilson (Seattle, Washington), Pat Oelwein and Liz Steele for their help and generosity in allowing us to reprint their work. 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?
![]() About a year ago, I wrote an article about my son Toby, who has Down syndrome. In that article, I shared some important lessons about life that I’ve learned from him, and those lessons ended up profoundly affecting thousands of my subscribers.
(I actually got so many positive responses from that article that I was backed up for about a week writing to everyone personally to thank them. If you didn’t see it, here it is: www.UnlockTheGame.com/LessonsFromToby)
Frankly, I was blown away by how ‘Toby’s Lessons’ seem to resonate with so many people in sales and in business for themselves.
It was astonishing that so many grownups, many of them probably with bookshelves full of self-help books, found so much wisdom in a 2-year old who was simply being himself.
Well, it’s been over a year now since I wrote that article. Toby turned 3 in December, and for the last couple of days I’ve been thinking about a new and profound lesson that I realized he’s been teaching me.
I want to share it with you because it could make a difference for you, not just in your business life but in your personal life as well.
It finally hit me one afternoon last week after I had picked Toby up from preschool.
I was driving him home, and while I was at a stop light I turned to him (in his car seat) and started communicating with him using sign language, the way my wife Michelle and I always do, about what he wanted for dinner that night.
You see, Toby’s speech development is delayed, so he can say only one or two words. But for the most part, he uses the sign language we’ve taught him.
Anyway, at that moment, something flashed in my mind about the gift he had given me because I’ve had to learn sign language to communicate with him.
He was teaching me how to really listen.
So, what do I mean by ‘really listen’?
Well, most of us who’ve been exposed to traditional sales ‘experts’ remember them telling us that we’re supposed to ‘listen’ to our prospect so we can move them closer to a sale. The problem is, that means listening with a hidden agenda in our mind — and that’s not ‘really listening.’
When you’re really listening to your spouse or child, or to a friend, are you thinking about the ‘next steps’? Probably not. And even in business, a prospective client is a real person, and should be treated with respect, more than just a ‘target’ to ‘acquire.’
When you listen to people - I mean really listen, you connect at a deeper level because they feel understood by you.
And feeling understood by someone allows trust to develop.
So what was Toby’s new lesson to me? It was that sign language requires that you not jump ahead in your own thoughts until you’ve seen the last sign from the other person. You have to learn to really listen before you move the conversation forward again.
So the next time you’re in a conversation with someone who’s important to you, try really listening — without thinking about what you’re going to say next.
You’ll find that what you say next will come to you naturally. 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
Your child mainly lives in a world of actions and sensations. You live mainly in a world of thoughts and language. By bridging that gap between you, your child learns and communicates more.
Making sounds is one of the most frequent actions and sensations a child does and it is a critically important developmental step. Sounds are some of your child’s important early actions. In the beginning, long before they are used for speech and communication, sounds are the natural actions that your child’s vocal system makes. Sounds are one of the things children are wired to do and so they do them. Making sounds begins as other motor skills do – by doing them in very primitive and unspecified ways. You may think your child is communicating by making sounds. But, for a long while, your child is just practicing a motor skill.
Sounds are important early sensations. Every sound makes vibrations in your child’s body, just as other sensations like touch, sight and hearing do. At first, young children appear to make sounds because the sensations feel good and are things a child can control and change. Children often play with their sounds almost as if they were action toys. In fact, if we could look closely, we would see that a child plays with sounds much like toys. They are novelties to create and feel.
You might wonder why this matters to your child. It matters a great deal because your child needs to practice sounding a great deal to develop and change the muscles that will make more complicated sounds and then words. Most people take sounds for granted and cannot even remember helping a child develop sounds. But we definitely do.
PROBLEMS
Many late-talking children and ones with concerns like autism and Down syndrome, or motor problems like cerebral palsy and apraxia, have very serious delays in making and combining sounds. For these children, learning to make sounds is a highly important and commonly ignored developmental stage.
When a child is language delayed or nonverbal, most parents and professionals understandably want them to talk. Of course! The problem is that words and language are not the first steps in talking. And, children who cannot easily make sounds will fail and become discouraged if everyone is pushing them to make words. People may come to the dangerous conclusion that a child "cannot" talk. Many children, when their partners do not imitate and play with their sounds but only accept and pressure for words, do not talk.
Think of it. We need to realize that the task of making and combining sounds is a very difficult and complicated muscular activity for many children. Those who have low motor tone (hypnotic) or neurological conditions that will make sounding a very slow process require a great deal of practice.
What also is necessary for later talking, is for children to hear others make sounds that they can make – frequently and right when they are trying to make them. Children will learn our speech sounds when we give them sounds that they can make.
If we do not frequently interact with children with the sounds they can make, we may come to the conclusion that they cannot make sounds or cannot talk. This is like concluding that a novice tennis player cannot learn tennis because, at first, he cannot hit the ball straight. The problem is not that a child cannot talk; the problem is that the child’s partners are simply not allowing enough practice of the little steps necessary for talking.
All of this often can be solved when you get into the habit of imitating your child’s sounds. Why? Children make more sounds when we imitate them. If we do not make sounds that children can make, they may give up and just not try. If we keep trying to get a child to say words without sounding practice, the child will fail because of our impossible expectations. That same child could have had important successes if only we did what he or she could do.
CHILD GOALS
1. More of any sounds – Every child needs to make many sounds all day long to get the practice he needs to make and combine new sounds. This is a very complicated motor process. Consequently, your child’s first goal is to simply make more and more sounds. And you need to accept and support all sounds at first. One way to do this is to imitate all sounds.2. More changes in sounds – Once your child is a constant sounder, slowly introduce new sounds. If he says "baba", you might say "bibi" or "mama" or some little next step. He can try sounds that begin to imitate parts of your words. Once you have imitated his sounds for quite a while, he will begin to imitate yours – but only if they are sounds he can try to do.3. Small steps to words – Once you give her single words she will try rough attempts. That is perfectly okay. Every word involves many tiny motor steps. So rather than thinking of a word as doing just one thing, realize that it involves doing many movements together at the same time.
OBSERVATION ACTIVITY
Interact with your child five times in a couple of days. Pay careful attention to the sounds your child makes – any sounds, not just when he’s communicating. Is he making them to himself? Or is he directing them to people? Do you think he makes sounds to play or to communicate more? Then just look at what you do when he makes sounds. Do you usually respond or ignore them? Do you respond with language he can do? Do you imitate his sounds? And, do you appreciate that sounds are something important for him to do?
Now, describe what happened. Note: You may have someone else such as a coach or therapist observe you.
1. __________________________
2. __________________________
3. __________________________
PRACTICE ACTIVITIES
Select five daily activities and practice imitating sounds for at least five minutes in each activity. Let your child take the lead and do not make her do the sounds.
The goal is for her to practice sounding more and more with you.CHILD GOALS
1. Make more sounds of any kind.
2. Direct his sound more to people than to himself.
3. Pay attention when you imitate his sounds.
4. Change sounds to be more like yours.
WHAT CAN YOU DO?
1. Say her sounds just like she does.
2. Imitate sounds immediately.
3. Imitate her sounds playfully.
4. Imitate sounds even when she does the alone.
5. Play with sounds like the important learning toys they are.
6. After you imitate, wait silently for a response, and then imitate again. Imitate and then change the sound a little.
WHAT NOT TO DO
1. Ignore sounds he makes to himself.
2. Say sounds or words he cannot do.
3. Forget to show you enjoy hearing his sounds.
4. Correct or judge how he sounds.
5. Correct in ways that imply he did something wrong.
PROGRESS RECORD
How are you doing?
1. Imitating his sounds
__________________________
2. Imitating and changing sounds a little
__________________________
3. Waiting for child to make sounds first
__________________________
4. Waiting for child to make sounds after you imitate
__________________________
5. Making sound imitation a frequent game
__________________________
How is your child doing?
1. Making more sounds by herself
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2. Making more sounds to people
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3. Making new sounds
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4. Trying to imitate your words
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5. Interacting with people more
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6. Starting to deliberately communicate
__________________________ 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.
Sahira Mansour, my mother, was the mother of two boys and one girl. She was the head teacher of one of the best girls’ secondary schools in Iraq. Aged 32, with a great job, she was a very happy mother with normal expectations of the future, but at that time she didn’t know what God had planned for her.
In 1983, Sahira was blessed with her fourth child. It was a girl, and she was named Hiba (meaning the gift of God in Arabic). Sahira and her husband, Hashim, had no idea that there was something wrong with Hiba until they took her to the doctor for check up in Baghdad.
Although I was just 9 years old at that time, I can never forget my mum’s tears over what the doctor told her. I remember him saying to her that her baby would never be able to do anything normally. As a child, I wondered what he meant by that, and as the years went by I watched my mum, with her endless determination, prove him very wrong.
My mum was a very strong woman, but no matter how strong a woman is, it’s very hard to withstand people’s thoughtless comments, especially relatives and friends, without getting hurt deeply. They may not have meant any harm bur my mum became very sensitive to every little word that was said about Hiba and it was made tougher by being in a place where education about mental disabilities is sadly lacking, and families who have special children tend to hide them at home.
In all that tension and sadness, came the first blessing. My father got a very rare opportunity to study his PhD in the UK. When we arrived in London my mother started looking for information about children with Down syndrome. She always said that everything in this life happens for a reason, and Hiba’s arrival to this family, and getting the chance to be in London for 5 years before going back home, meant that we could make changes for the better back home in Iraq.
My mother contacted the Down Syndrome Association, which offered her help and support she has never forgotten. She became a member and got as much use as possible of all the leaflets and books she got from their library at that time.
She took courses through the Open University; she also worked as a volunteer in nurseries that took children with Down syndrome.
Out of all that she realised that Hiba could learn almost everything, but that it would take longer than usual.
During our last year in London my mother started buying all the toys, teaching tools and books that she could. She was planning to do what she saw in London, back home.
Days after we arrived back in Baghdad my mother took the first step, changing her job from a head teacher to a teacher in a special Government school. She began giving lectures to the other teachers on what she had seen in London. She also translated some of the books so that other teachers could benefit from them, but no matter how hard she tried, they were not interested. My mum didn’t give up; she started thinking of opening her own private school for children with Down syndrome.
Financially, it was very difficult, and another enormous problem was finding a place suitable to house the school. It took two years for the dream to come true, when my parents found a house that was big enough for them to live in half of it and to convert the other half into the school.
The school was named Hiba School, after my little sister. It started with four students, two classrooms, and three teachers; my mother and her two friends who also had children with Down syndrome.
It was very hard to convince people that their children could learn how to read and write; they of course hadn’t seem what my mum had seen in the UK. To make it easier, the children were admitted to the school for free, so their parents had nothing to lose by giving it a go. As time went by, the number of children at the school began to increase; the strongest boost to numbers came after a TV programme was broadcast about the school. After that, children from all over Baghdad started coming to Hiba School.
As the number of students increased, and reached 75, it was very difficult for my father, who provided the financial support for the school, to manage. My mother was forced to charge the parents a fee, but most of the children came from poor families and entered the school when it was free, and so she had to keep the charge as low as possible; just enough to keep things going and cover the teachers’ salaries. High fees would have meant that the families would remove their children from the school as they couldn’t afford it, and the only victim would be the child, who my mother wanted to benefit most.
As the years went by, and more and more families started bringing their children to the school, the number of classrooms became too small for the children, so the back garden of the house was re-built with 2 levels and a kitchen was added to teach the children some essential life skills like simple cooking and dish washing.
Mum was still not completely satisfied. She wanted to do something that would go nationwide to help children across the country. She started thinking of forming the Iraqi Down Syndrome Association. My mother never forgot that day when she took Hiba to the doctor and she was first diagnosed with Down syndrome. She always said that it would have been less dramatic if she had known then that Hiba would become who she is today. She believes that when a family sees that the future is not as bad as they’re being told, it will make things easier. Another important point was to distribute health information about Down syndrome; especially the part that explains that the highest percentage is not heredity. In our country a lot of mothers get the blame for having a child with Down syndrome, and a lot of cases end with divorce.
In 1999, the Iraqi Down Syndrome Association was established. The Association had a lot of activities and the whole family played a part; my brothers, my husband (who also had a sister with Down syndrome) and me. By that time I had become a dentist, and I found myself strongly attached to the management and treatment of people with Down syndrome and other mental disabilities.
As I remember, my sister Hiba didn’t suffer at all in her dental treatment when we were in London, she used to be treated under general anaesthesia, she was very young to be cooperative. And I still hope I can start such a service in Baghdad.
I opened my clinic near the school and most of my patients during school hours were from the Hiba School, it was fun working with them.
In 2003, the number of children was 150 students, and it was time to build the final part of the garden. It was a 2 level building with a basement, we managed to finish the building just before the war.
After the war we had no more money to spend on furniture and equipment, the money we had was kept for any emergency situation we might face. During that time things in Iraq became very different, a lot of foundations offered help from all over the world, but the biggest help was offered by the Japanese embassy who really changed the face of the school. It refurnished the old part and furnished the new part, too, the basement was converted to a gym, and a vocational training part was opened, too.
It is a perfect school in my opinion; it has a dental clinic, a gym, a vocational training class with all the necessary appliances, a swimming pool, a computer room, and 17 classrooms. Also, in the last year I was in Iraq a little shop was opened to teach the children the value of money.
I have now been in England for six months, studying for a masters in special needs dentistry. I wanted to make sure that young children with Down syndrome and other challenging medical conditions can be treated safely and without pain. I miss my family very much. In August this year Sahira and her family visited us at National Office [in London]. Despite the worsening security situation in Iraq, Sahira is still optimistic for the future. This year was the first time that the school had taken a long summer break and Sahira was desperate to make sure that she returned to Baghdad in time to re-open the school on the date that she had promised. 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:
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.
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.
If you and your child decide to participate, she or he will be asked to complete a variety of language and reading assessments both before and after the intervention, in order to monitor changes in performance. These assessments will be administered over several sessions if necessary. The intervention itself will involve a 30-to 40-minute session each week for eight weeks.
The project has been approved by the Macquarie University Ethics Review Committee for Human Research.
If you think your child might like to participate in the study, or if you would simply like to find out more about the research project, please contact the chief investigator, Associate Professor Linda Cupples, Department of Linguistics, Macquarie University, Sydney (telephone: 02 9850 8788; fax: 02 9850 9199; or email:linda.cupples@mq.edu.au
Pharmacotherapy for cognitive impairment in a mouse model of Down syndrome
Visitthe Down Syndrome: Health Issues (www.ds-health.com) website to link to Dr Len Leshin’s excellent and detailed commentary on a recent study published by researchers at Stanford University, which has been widely reported in the press. Follow the link under "Down Syndrome Abstract of the Month" for April 2007. The commentary explains the rationale, the results and the limits of this very interesting work.
Very high incidence of obstructive sleep apnoea confirmed in Australian study of children with Down syndrome
Sleep Apnoea: ..... a condition characterized by episodes of stopped breathing during sleep. Apnoea (literally, "without breath") is the term used when someone stops breathing for very short periods of time, usually 10 to 20 seconds. It’s termed "obstructive" when respiratory efforts continue, such as movements of the chest. ....... In children, sleep apnoea is almost always obstructive. During the apnoeic episode, the child will have decreased oxygenation of the blood. (Down Syndrome: Health Issues, www.ds-health.com)
In 2006, Dr Sally Shott and her colleagues in Cincinatti, reported from their longitudinal study, a very high incidence of obstructive sleep apnoea in young children with Down syndrome. A recent study lead by Professor Dominic Fitzgerald at the Children’s Hospital Westmead, in Sydney, also recommends that all children with Down syndrome who snore should have a sleep study, whether they are overweight or not. The study reviewed the records of 33 children with DS who snored and had not had their tonsils or adenoids removed. 97% demonstrated obstructive sleep apnoea.
Reference:
Fitzgerald, DA, Paul A, and Richmond, C, Severity of obstructive apnoea in children with Down syndrome who snore, Archives of Disease in Childhood 2007;92:423-425
The abstract is on-line here: http://adc.bmj.com/cgi/content/abstract/92/5/423
The page includes links to a number of options for purchasing access to a full copy of the text.
("Apnea" is the North American spelling; "apnoea" is English spelling)
Gastrointestinal condition in people with Down syndrome – Queensland study
In a Queensland hospital-based clinic for adults with Down syndrome, 57 patient records were examined to survey the frequency of gastrointestinal conditions
56 of the 57 people with Down syndrome were found to have at least one gastrointestinal concern, most of them previously undetected. Most of the problems were able to be treated.
The most common condition included coeliac disease; Helicobacter Pylori infection; Hepatitis ( A and B); and obesity. Dr Wallace noted that while none of these is a new finding for people with Down syndrome, but the fact that they can be treated, but had been neither diagnosed or treated endorses the value of a specialist service offering clinics focussing on a single condition such as Down syndrome.
Reference:
Wallace, Robyn A, Clinical audit of gastrointestinal conditions occurring among adults with Down syndrome attending a specialist clinic, J. Intellectual and Developmental Disability, Vol 32; No 1, March 2007, pp 45-50
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.
Studio ARTES latest venture "Gallery ARTES" has opened in Hornsby, located at 181 Pacific Highway (on the "old side", next to Thai Tables restaurant). Phone 9482 5266
The Gallery will be a permanent outlet for the artwork of members and provides excellent training in a retail work environment for members.
Gallery ARTES is open Monday–Friday, 9.00am - 4.00 pm, and weekend 10.00 - 2.00 pm
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.
Days later, the engineer started working on a prototype of Quantum Satellite Technology, a line of $325 to $350 adult sneakers that hit shelves next month. It promises to locate the wearer anywhere in the world with the press of a button. A children’s line will be out this summer.
Read the entire report from the CBS News website:
This product is being launched in North America – we do not know whether it is feasible for it be used in Australia, but would be interested in hearing an expert opinion. While there are considerations about privacy attached to any tracking device, for many parents of children with Down syndrome who are "wanderers", the safety potential of such a device will outweigh any privacy concerns. For those who find other devices such as bracelets intolerable, GPS shoes could be real alternative. |
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