The dreaded haircut - could this be your family?

Lynn Johnston's gentle comic strip of everyday family life with the Pattersons, For Better or For Worse (R), takes a wry look at episodes of family life that will often hit right home for parents of children with disabilities, like this one from last Sunday (6th April). Could this have been your family at some time - or right now?

In October 2004, Lynn Johnston introduced a new character, Shannon Lake, a teenage girl with an intellectual disability into her cast. Shannon was developed with the help of her niece, Stephanie who has special needs. Together they are a powerful advocacy team in their own community and to the wider world. Spend some time looking through Shannon's own website for a wealth of material, and for the strips in which Shannon has featured.

These two strips from 2004 introduced Shannon in 2004

• 23rd October 2004
• 27th October 2004

There's some real food for thought in these comic strips, and the background material that could make very effective teaching and learning resources and ideas, about developing a sense of self, self esteem, and dealing with teasing and bullying. And perhaps all the better for not being in a textbook!

Special Commission of Inquiry into Child Protection in NSW - hearing on disability

The Special Commission of Inquiry into Child Protection in NSW, being conducted by Justice James Wood, heard submissions on children with disabilities yesterday, Friday 11th April 2008.

Families of children needing extremely high levels of support, because of complex and multiple disabilities spoke about the drastic actions they have been forced to take when the disability service "system" has been unable to support them to raise the child at home.

Most families with sons and daughters who have Down syndrome do find the supports and services they need, and are able to develop skills and resilience sufficient to meet the child's needs relatively comfortably within their own families. But some children and adults with Down syndrome do have more complex needs, and can have multiple disabilities and/or health complications that push their families' limits of endurance beyond reason, similarly to those families' whose stories have been told in the Inquiry.

The NSW Department of Ageing, Disability and Home Care policy is that all children under 12 should be raised in a family setting, but it apparently still has no workable solution in place for situations when that is not possible. One family's story has been highlighted in the media, and was accepted by the Inquiry as a case study.

A parent-observer at the inquiry on Friday reports that " ....senior DADHC officers said there were a number of models of accommodation and yet could not name any other than saying every effort was made for children under 12 for the child to remain in the family home with in-home support. When pressed by the Commissioner and his assistant as to what was the alternative if it was impossible or inappropriate for the child with disability to remain in the family home, or with a foster family, the DADHC officers really had no satisfactory answer"

Media reports on the Inquiry's disability hearings:

How policy forced a family to desert their child (SMH 10/11/08)

Disabled Kids not getting proper care (SMH 11/04/08)

Lack of services for disabled children tearing families apart (SMH 11/04/08)

Parents 'forced to abandon disabled children' (ABC News, 11/04/08)

Two heart-felt letters to the editor of the Sydney Morning Herald, from family members responding to the reports are published under the heading The ability to care depends on support, in today's edition.

A transcript of the hearings on disability (11/4/08) will be available on the website of the Commission of Inquiry's website by Monday 14/04/2008 or Tuesday 15/4/08
The Department of Community Services submission on Health and Disability is linked under 10/04/2008, the NSW Ombudsman Report 2004 - DADHC - The need to improve services for Children, Young People and their Families (which is critical of DADHC's inability to deliver the services its policy requires) is posted under 7th April 2008 on the same page.

Melissa Riggio 1988 - 2008

Patricia Bauer has posted a moving tribute on the life of Melissa Riggio, 20 who sadly died earlier this week, after being ill with leukaemia. Melissa was a remarkable young woman in her own right, and had a major impact on the publishing industry in the USA. Her father, Steve Riggio is the CEO of Barnes and Noble,(a major US book seller) and after Melissa's birth he worked to include many more titles on disability in his stores, with a flow-on to the wider market. Read Patricia's tribute here.

Melissa's story has also been told by National Geographic Kids, and through her own web page, Melissa

Like many around the world, our thoughts are with her family.

Visual Arts - people with Down syndrome as subject and artist

People with Down syndrome have been participating in art since people began making art. Two young children with Down syndrome are currently the subject of very different pieces on exhibition in Sydney:

Local Eyes is an exhibition of photographs with a difference, created by United Way Sydney. "It's a chance for ... budding photographers to present their unique perspective of Sydney, and for United way supporters to better understandhow others who face significant challenges see their world." Click on "View and Vote" to see thumbnails of all of the photos - at the lower right is Persia Burrows' photo of herself and her brother Tyler, who has Down syndrome. Click on the thumbnail for a enlargement, and the story of how the photo came about. You can vote for it too.

Daniela Mousa's Year 12 artwork confronting attitudes to people with disability will be on exhibition from 4 - 24 April in the Art Expressed show at Ku-ring-gai Arts Centre in Sydney's north. She has incorporated images of Angela, who has Down syndrome into an installation questioning judgements and behaviour. Click here for an article and photograph from the Northside Courier.

Some other interesting visual arts links:

• Down Syndrome NSW web page on visual arts


• Accessible Arts is the place to keep up with arts and disability news in NSW


• Gallery ARTES showcasing the work of artists with disabilities, is a project of Studio ARTES Northside Inc. - a community-based, not-for-profit organisation in Hornsby (NSW)


• Creative Growth is the Californian art studio that fostered the acclaimed work of the late Judith Scott

Dragon, DGC, Studio ARTES 2006

Picnicking at Coffs Harbour

Our Coffs Harbour families rarely miss an opportunity to get together and share in whatever events or celebrations are planned. World Down Syndrome Day/Month 2008 was no exception.

Sunday 30th March was a beautiful early autumn day, and the family picnic was an overwhelming success with about 70 people, including families and grandparents from as far away as Brunswick Heads, Alstonville, Port Macquarie and Armidale.

From discussions during the day, parents of primary school aged children decided to organise a friendship club, with the children meeting on a monthly basis. - a good outcome from a good day.

Wollongong rocks for Down syndrome: Illawarra Black Tie Ball

We are still catching up with all of the wonderful events celebrating World Down Syndrome Day/Month. Tracy Barker again galvanised the Illawarra community for an elegant night of fun and fine dining on 28th March. highlighted by the ability of the young people with Down syndrome to absolutely milk the moment for every drop of enjoyment, and take the rest of along for the ride. We did hear that the microphone got quite a workout when they were invited to say a few words if they would like to - it wasn't necessary to ask twice!

Tracy's energy, caring for her family including two beautiful and lively little girls, working, and taking on the organisation of a number of events each year (a T4321 morning tea, the Black Tie Dinner and the Illawarra Buddy Walk fior a start!) is phenomenal, and very much appreciated. Final fundraising figures are not yet in, but around $10,000 is expected from the dinner - again, very much appreciated.

As always, the less tangible outcomes of the night will be absolutely priceless!

Thank you Tracy, your family and friends, and to everyone who supported the event and took part.

For more photos, click here for the gallery .

On a Wing and a Prayer - what a night !!

On a Wing and a Prayer was a major fundraising event held last night in Sydney, that was much more than that. Attended by over 600, it achieved its fundraising goals, for which we are more grateful than words can say, but the insight it gave those attending who previously knew little about Down syndrome, or had never actually met anyone with Down syndrome was priceless! An impressive line-up of sporting, media and other celebrities brought together by our patron Craig Wing, entertained the crowd, while members and staff told them about their families and our work.

Some were moved to tears as a young mother talked about her little one with Down syndrome and how she's influenced her family; shared her pride as Ruth Cromer spoke about living with Down syndrome, the challenges she has faced, and how she's been supported; and generally were amazed at the ability of people with Down syndrome of all ages to have fun!

The audience was asked to buy items at auction, raffle tickets, and to simply donate to help fund our efforts in supporting families across NSW - and they did, very generously. A very special event.

You'll recognise many of the faces in these first photos if you are in Australia, and these in the first of several photo galleries to come as we gather them in.

Our thanks to everyone involved - more details will be posted to our website, along with more photos.

Additional photos and a nice report are also on South Sydney Rabbitoh's Club News

Quote of the night: “My sister Kirsty is here tonight and she has Down syndrome. She is a massive Rabbitohs fan but she is disappointed that we wear red and green, and not pink and sparkly!" Craig Wing. We so get that!

A little help from friends ....

South Sydney 1st grade NRL stars Ben Rogers , Shannon Heggarty, Michael Greenfield and Issac Luke helped out teammate Craig Wing in his mission to raise funds and awareness for Down Syndrome NSW. Craig was due to appear at a Market Day Fundraiser at Wattle Grove Community Centre on Sunday 16th March, before a major injury in the first round game on 15th ruled him out of the event. He asked for help, and he got it - immediately. The day was a huge success, and Melissa Cotterill, who organised the day, was thrilled.

At the event, the four boys were greeted with huge cheers from the 300 plus crowd and spent the afternoon signing autographs, taking pictures, passing the footy around. Read a full account of these fine young men's commitment to their teammate and to the community here, on the Rugby League One Community website.

Network Ten took some footage for a news report later in the week to mark World Down Syndrome Day, highlighting the joys and challenges of life with Down syndrome in 2008.

Congratulations Melissa, and all of your team!

Click here for the Market Day photo gallery

Family Fun Day in Newcastle - the celebrations continue

The recently established Newcastle Down Syndrome Support Group held a Family Fun Day at Speers Point ark on 15 March 2008 to celebrate World Down Syndrome Day.
Families came from as far south as Erina and north as Tea Gardens. It was wonderful to meet new families and make new friends.
The children had lots of fun having their faces painted, playing games including an egg & spoon race and tug of war - though I'm pretty sure there were some 'grown ups' who got involved in this game too! The Police cars were a big hit - with the kids getting to clamber around them and use the siren as much as they liked???? The cardboard police car money boxes were also a big hit and kept the grown ups busy figuring out how to put them together.





We would like to thank the following organisations for their support - NSW Police - Lake Macquarie Command, Crowne Plaza - Hunter Valley, Oaks Pacific Blue Resort - Salamander Bay, Moonshadow Cruises, The Good Guys, Rosie's School of Rock, Brian Kelly Holden, Coles - Toronto, Out of Town 4WD, Baker's Delight - Edgeworth, Joe's Meat Market and Reid's Quality Meats.
Our special thanks to Helen Gadd, at the University of Newcastle Early Intervention Centre for her ongoing assistance in creating community awareness of the Newcastle group and her wonderful face painting! The kids loved it!

We look forward to holding a further great event next year to create another wonderful experience for family and friends to gather together. Click here to see all the photos in the gallery.

Easter meets World Down Syndrome Day in the Blue Mountains

Kathi and Rob organised an Easter Egg Hunt for the kids, on World Down Syndrome Day since this year it coincided with an unusually early Easter. And they don't let a little moisture stop anything too much in the Mountains:

Despite the fact that it poured with rain and the traffic was so congested that a few guests had to turn around and not come, we went ahead with the egg hunt and afternoon tea. The kids ran around looking for eggs in the rain and wet grass but didn't seem to mind and I think they found all the eggs??? About 40 people came and we raised $834.50 through a raffle and donations.
I didn't do everything that I thought about doing originally but it was nice to mark World Down Syndrome day in some way and hopefully everyone had a good enough time.

Thank you for braving the showers, kids and for fundraising while having fun - a great result for everyone.

The Newcastle Support Group are sending photos from their Fun Day too - hope to have them up in a few days!

Did you see the crowd at Melissa's Market Day on the Channel Ten News last week? People with Down Syndrome are everywhere! We knew that.

World Down Syndrome Day: 21st March (3/21)

Senator Sue Boyce wrote for the Brisbane Courier Mail today, on World Down Syndrome Day (21st March) ......

There seem to be dozens of "days" in every week these days, marking everything from arthritis to Zen Buddhism. But, for purely selfish reasons, one that I hope will cut through is World Down Syndrome Day, celebrated tomorrow.

The date, the 21st of the third, was chosen to reflect the fact that Down syndrome (Trisomy 21) is caused by a triplication of chromosome 21.

This year's WDSD is only the third. It has taken a long time for the global community formed around Down syndrome to come together.

Click here to read the whole article online.

In the US, World Down Syndrome Day was introduced by actor Chris Bourke, when he rang the NASDAQ closing bell last Monday, 17th March. Click here for the story and photos.

Photos and stories from local events will be posted as they arrive. You can send them to marketing@dsansw.org.au - please tell us a bit about the event and who was there.

A few weeks into the new school year ..... how's it going?

The teachers are getting to know their students, and we hope the students are settling in too, especially those who have started school for the first time, changed to a new school or started high school - all major transitions that take time, thought and effort.

Down Syndrome NSW can assist the transition of students with Down syndrome into new educational environments, and progress through school in several ways:

- through the Learning, Education and Schooling pages on our website, we have provided links to the very best sources of information and resources available to assist teachers to facilitate learning for their students

- schools are welcome to take out membership of DS NSW, so that all of their staff gain access to our library; receive our regular Updates and Newsletter; are entitled to members' discounts for DS NSW training and education events

- we schedule several half-day and one-day workshops around NSW each year, some of them designed specifically for classroom teachers and school personnel. Over the next few weeks, we are holding workshops for teachers in Armidale, Warners Bay, Wollongong and Broken Hill.

- a "starting School" seminar for parents of children enrolling in primary school over the next couple of years is scheduled for 14th June.

- our information and support staff are available to assist with particular concerns by phone on 02 9683 4333 and email at support@dsansw.org.au

- by telling you about new discoveries, ideas, resources and events as they become available

- by helping you to find the additional services or programs that you might need from time to time

It's easy to underestimate, as a parent ,just how much you know about your child in particular, and about Down syndrome in general, even by the time they first start school. By then we've seen several years of development and learning, have closely observed our children in different environments, and made carefully considered decisions about how and where they will go to school.

Most teachers have not taught many students with Down syndrome, and some will never have encountered a child with Down syndrome at all. So it is important to be open and articulate about what your expectations are. "What I want my child's teacher to know" , an "action sheet" from the PACER Centre in MInnesota might be a real help in letting your child's teacher know what you hope for, and how your input can help your child and his teacher to have the best school experience.

Responses to publication of UK antioxidant trial report

Dr Len Leshin has posted his commentary on the clinical trial of "Supplementation with antioxidants and folinic acid for children with Down's syndrome" mentioned in this blog on 23rd February, on his highly respected website, Down Syndrome: Health Issues:
www.ds-health.com/abst/a0803.htm

Science Daily has published an article about the trial :
www.sciencedaily.com/releases/2008/02/080223123616.htm

Several responses to the antioxidant trial have been published in the BMJ online in Rapid Responses:
www.bmj.com/cgi/eletters/bmj.39465.544028.AEv2#191091

Start of the NSW footy season and World DS Month ......

When your Patron plays for the South Sydney Rabbitohs, you sometimes get to go to special events in rugby league.



That happened yesterday for a number of young people with Down syndrome who were invited to the 2008 Charity Shield by DS NSW Patron, Craig Wing, to mark the kick-off for the new season. It turned into a party (of course), nicely topped up with a match-winning try scored by .... Craig Wing!

Everyone had a great time, none more than this fun loving group of league fans - there might even be a few Souths converts.

March 1 was also the beginning of World Down Syndrome Month (March) - we usually mark World Down Syndrome Day on 21st March (21/3 symbolising the three copies of chromosome 21 that gives rise to the condition we know as Down syndrome), but this year, since 21st March is Good Friday, we have spread the celebration s out over the whole month.

Email t4321@dsansw.org.au, or call Steve or Priscilla on 02 9683 1900 or 0424 044 930 to send your "World Down Syndrome Month" message for our commemoration page.

British antioxidant trial published: no significant effects

The long awaited results of a UK clinical trial of oral antioxidant and folinic acid supplements for young children with Down syndrome were published by the British Medical Journal on 21st February 2008.

The study used the Griffiths developmental quotient, an adapted MacArthur communicative development inventory, and biochemical markers to assess changes over 18 months, in a randomised clinical trial with 156 infants with Down syndrome participating.

No significant differences were found between the supplement and no supplement groups. The researchers concluded that the study "provides no evidence to support the use of antioxidant or folinic acid supplements in children with Down's syndrome."

The full text of the report is available to download from the BMJ website, and as a .pdf file An extract from a BMJ editorial in the same issue is available here.

We expect much more commentary on this study, and will post links here and on the DS NSW website, on the Research pages.

We said the last six months would be busy .....

... and they were. But it's a new year, and this blog will be updated regularly. Here's a quick catch up:

We have a lot new things to tell you about - our favourite new discovery is The Journey Ahead: Consider the Opportunities, an excellent video for new and expectant parents, produced by the Down syndrome Association of Greater Cincinnati, and made available online here (scroll down the page a bit), Such generosity is truly in the spirit of the founding families who first established Down Syndrome Associations from about thirty years ago: alive and well, and enhanced by technology – and still needed, all over the world. It’s a new generation of support, from a new generation of parents.

Gifts is proving to be a very popular book with our new families - we've ordered 20 new copies for our library so that we should always have one available. Woodbine House is the publisher - email us if you would like to borrow it, or for a list of local suppliers if you want to buy a copy.
Our New Parent pages have been tweaked and tidied up, with a new set of links added for those with a prenatal diagnosis. Five weeks into 2008, seven families with newborns had been referred to the Parent Support Team, so they have hit the ground running. This week the Parent Support Team is in Lismore on the beautiful Far North Coast meeting with families of young children and the professionals that provide services to them, providing updates about Down syndrome.

Two new blogs have been added to our list of those we read: IDEAS (a NSW disability information service) and Pinwheels (by the mother of twins, one of whom has Down syndrome). Click on the titles in the list at right to check them out.

On the social scene, Tracy Barker is again organising the popular Illawarra Black Tie Dinner for World Down Syndrome Month, on 28th March. And our Patron, Craig Wing, is hosting a major fundraiser, On a Wing and a Prayer in Sydney on 2nd April, with proceeds coming to Down Syndrome NSW.

What do we do all day?

There is always something happening at Down Syndrome NSW - it is a much livelier place than you might imagine! The second half of 2007 is shaping up as a busy few months for us. Here's a run-down on the events planned so far:

• An Evening with Prof Sue Buckley (for parents of older adolescents and adults with Down syndrome), on Wednesday 8th August
• Seminar for teachers, and other professionals with Prof Sue Buckley and Ms Julie Hughes, Friday 10th August
• Seminar for parents,with Prof Sue Buckley and Ms Julie Hughes, Saturday 11th August
• Annual General Meeting - Saturday 11th August
• Q and A workshop for Vietnamese speaking parents, Monday 20th August
• Morning Tea for Arabic speaking parents, Monday 20th August (contact the Parent Support Team on 02 963 4333 for details)
• New Babies Day, Saturday 15 September (contact the Parent Support Team on 02 963 4333 for details)
• Down Syndrome Awareness Week 2007, 13 - 21st October
• Open Day at Cumberland Retreat - Saturday 13th October (details to be confirmed)
• Buddy Walk 2007 - Sunday 21st October
• Families' Weekend 2007 and Up Club Camp 2007 at Collaroy Centre - 9th - 11th November
• Workshops for families and professionals in Wagga Wagga - 22nd-24th November (details to be confirmed)

All of this happens in addition to the day-to-day activities such as supporting families of newborns with visits, phone calls, resources and referrals (we have had nearly forty notifications of newborns up to the middle of July); taking inquiries by phone and email; visits by families and professionals to use the library and talk with staff; managing the library; publishing Updates and Newsletters and our Calendar; keeping the website up-to-date; fundraising and marketing (without which we cannot do our work); reporting to funding bodies; and managing the organisation. And there are meetings, and reading to keep up with the wider disabiiity sector, government and community happenings.

And then there's the UP! Club and the Up, Up and Away Project, both setting a brisk pace that leaves the rest us of breathless.

That's why this Blog doesn't get written more often ......

What's Under Your Hat?

"What's Under Your Hat" came to notice when it recently screened in Sydney as part of the Spanish film festival - not somewhere we would usually look for a film about a person with Down syndrome, especially not an American. We are indebted to Dean Watson, or very own arts and culture monitor, who brought it to our attention.



This very powerful film is one of three we have discovered about Judith Scott, who became renowned as a sculptor, after an inauspicious start to life, and many years of living in a State institution with her needs and abilities unrecognised and unsupported. Judith's great good fortune was to be born a twin - her sister Joyce was able to eventually reconnect with her, rescue her from the institution, and introduce her to the Creative Growth Art Centre, in Oakland, California, where her artistic expression flourished.
Lola Barrera (director) and Julio Medem (producer) have given us a film that is more than documentary - it is engaging, confronting, uplifting, heartbreaking, hopeful, deeply respectful of the art that is its focus, and at times very funny.
DS NSW will try to obtain a DVD copy for our library. If you are in Brisbane, you still have a chance to see it when the Spanish Film Festival is presented there next week. The commentary is in English, with Spanish sub-titles. Don't miss it!

Thanks for celebrating World Down Syndrome Day with us

Thank you so much to everyone who participated in and organised so enthusiastically our first ever Tea for 3-21 events to celebrate World Down Syndrome Day 2007. The concept seems to have captured imaginations, and to have been an enjoyable way to raise awareness in a way that is comfortable and convenient for a broad range of people, within whatever communities they found themselves at the time. And lots of you generously raised much appreciated funds at the same time - thank you again.

It was lovely o read your comments as they came in via email, and to have so many families of both children and adults tell us how proud they were to celebrate their son or daughter's life. It can be hard for other people (are they those same "others" we once thought things like Down syndrome happened to?) to really "get it" that we truly do have something wonderful to celebrate. When you met someone who "gets it", you just know.

Have a read of Dave Hingsburger's Blog of Monday, April 02, 2007, entitled "Lessons" and you'll see that he "gets it".

"Walk With a Mate" scheduled for 14th October 2007 is a similar "feel good" event - a happy, easy day to get together. So put that in the diary too, and we'll see you there - we'll be the ones with the big smiles, and a spring in our step.

Eyebrows

People with Down syndrome are usually easily recognisable by their facial features, even while they are obviously members of their own families. Every text book and description of Down syndrome provides a long list of physical characteristics, many of which are insignificant, and all of which occur in people without Down syndrome. And few things get up parents' noses like a professional reaching for a child's hand to see how many palmar creases he has when they are being consulted about something entirely other ......

But one very commonly shared facial characteristic is often overlooked, even by those who know many people with Down syndrome very well, including parents. We generally do not feel comfortable with "they" statements, but "they" do have the most beautifully shaped eyebrows - finely drawn arches, beautifully curved, that almost never merit cosmetic interference. Many of us would have paid a great deal of self- indulgent money to achieve and maintain such fine brows!



Yes it's trivial in the scheme of things, but given the other trivial feaures that attract unwarranted attention, a delightful distraction. If you're a parent, the next time someone shows undue interest your child's palm, point out his gorgeous eyebrows instead.