Children with Down syndrome in East Timor - how can we support them?

We know that East Timor (Timor-Leste), our nearest neighbour, has been torn apart by events over a number of years, and that the general standard of living and services are now well below that enjoyed previously in East Timor, and way below those we enjoy in Australia. Many Australians have provided aid in ways that most of us will never hear about, but most of us probably have little idea of what every day life is really like there now.

Karen is a midwife, working in a busy NSW hospital. When she heard that two of her colleagues were travelling to East Timor during 2008 to offer hands-on education to local professionals and villagers to increase their skills in supporting women giving birth, she decided to take some leave, and join the expedition. Their employing hospital and local community supported their efforts by granting them leave, through fundraising and donating supplies for the East Timorese clinics they would visit during their week long stay. They knew that conditions would be spare, and luxuries non-existent, but they were still surprised at just how little the people of East Timor have – but very impressed by their ingenuity, eagerness to learn and their drive to take responsibility for long term changes.

Karen found the men and women she worked with very welcoming, and willing to care for each other. Clinic patients walked for hours to the nearest clinic, operating in a grass roofed hut, then waited patiently for their turn to be seen. The clinic finished when the last patient was attended to, no matter the hour.

Karen found the differences between suburban Australia and rural East Timor most striking when she met Margaret Hall, an Australian Catholic aid worker, living with her husband David, in the village of Atabae. Margaret is a midwife and early childhood nurse, running clinics for mothers and babies, creating solutions to the many problems encountered by utilising local resources (that contribute to the local economy) wherever possible.

And among her charges, Karen found that Margaret is caring for two little boys who have Down syndrome. They are both four, but very small for their age. Neither of them is walking independently yet, and one is not yet taking solid food. Basic early childhood services are rudimentary at best. Early intervention is unknown … speech therapy, occupational therapy, physiotherapy, early childhood special educators the stuff of dreams.

The whole population is malnourished, with little access to health care and these little ones suffer the consequences more than most.The local custom is for mothers to carry babies in slings until they can walk, and of course, most children begin climbing out of the slings (which have many other uses!) as their skills develop. There is little opportunity for safe “floor time”, as most houses have no floors. There is little, if any furniture for babies to practise pulling up to stand and to cruise around. Toys are made from whatever is to hand – often not much.

You can perhaps imagine that Karen, as the mother of a healthy, strapping young man of 17 who has Down syndrome, was moved to “do something, anything”, for these children. Karen and her colleagues are continuing fundraising and gathering supplies for a return visit in 2009, they hope for a month this time.

She is considering taking her son, so that he can teach the local parents that their sons can learn, and can take their place in their community.

Karen contacted Down Syndrome NSW (where she is a long term member) to see if we could help locate information that Margaret can use to teach both the boys’ parents and other community members ways that they can maximise developmental opportunities within the everyday constraints of village life. Post is very unreliable, so online resources are more useful. Margaret and David have electricity at their house for part of each day, and have access to a TV and DVD player. They travel to Dili periodically where they access email and the Internet.

So we’ve come up with a plan to which DS NSW members and others might be interested in contributing. We have sent Margaret a copy of the DVD “Down Syndrome: the first eighteen months”, from which she will extract information and strategies they can implement. Down Syndrome Education International has agreed to contribute two copies of each of their early childhood DVDs. We have prepared lists of links to information that Margaret is downloading and editing for local use. We will keep in touch by email, to see what is needed next.

But what would be really useful now is a laptop computer that they can use in the outreach clinics, as well as for information storage and retrieval, in their home village. Margaret has initiated “working lunches” with local women to teach child care skills, and has a group of volunteers ready to work with the two little boys with Down syndrome. The laptop will be a teaching resource for the volunteers. Others will translate written material into the local Tetun language. Karen and her colleagues will get the laptop to Margaret.

If you would like more information about the midwives group in general, or would like to contribute to providing a laptop, or if you have ideas about other ways to help, please contact Jill O’Connor at Down Syndrome NSW, on 02 9683 4333, or email info@dsansw.org.au and we will put you in touch with Karen.

You can read more about Margaret and David and their colleagues' work in the Atabae sub-district of East Timor at the website of Friends and Partners of East Timor (Inc), the Brisbane-based organisation that supports them.