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.

A well-kept secret .....

This is for all of you who are teachers returning to school this week after the summer holidays, and for families whose children are either returning to school, or starting school for the first time. It's one thing to know that research has been done about how students with Down syndrome learn best, that there are exemplary progams with years of experience producing brilliant results .... but how can you get the resources you need into your classroom (now!) when there are so many competing demands in all schools?

Well, here is the best kept secret in NSW education, and we are happy to share it.

The Jill Sherlock Memorial Learning Assistance Library , located in suburban Sydney, but serving all of NSW " ..... is an initiative of the NSW Department of Education and Training and the Sherlock Family. This state facility provides resources to assist teachers and parents with the education of students with learning difficulties. " Membership is open to teachers, allied professionals and parents across New South Wales. The comprehensive collection of resources relates to literacy, numeracy, language and behaviour support. The library collection includes a wide selection of books, videos, CD's, software, games and kits - practical resources for classroom use, and much, much more. The catalogue is online, and loans can be arranged to be sent out by mail.

This wonderful library is an absolute gem, one of the greatest assests available to teachers of students with special needs across NSW. Yet we have been astounded by how little it is known, even within NSW public schools. The librarians are unfailingly helpful - they know their collection well, and can recommend items that you might not even think of using.

Have a look, order your own loans, and then tell your colleagues about it ......

I wish I'd said that .....

Many wonderful, clever, thoughtful, provocative things have been written and said about people with Down syndrome, and we've read a lot of them. Every now and again something comes along that almost everyone seems to "get" immediately, and we think "yeah, that's exactly right - I wish I'd said that!"

In 2005, Dr Dennis McGuire addressed a national meeting of families and professionals in the US, and started a delightful ripple around the world with his reflections on how the world would work "if people with Down syndrome ruled the world". Now in some circles, such a proposition would be unthinkable, but for families like us, and those who really know our sons and daughters, the laughter was about recognition, familiarity and the fellowship of the unexpected experience of a lifetime.

Read If People with Down Syndrome Ruled the World here if you haven't seen it and enjoyed it yet, or if you just need to enjoy it again .....