CARING for OUR DAUGHTER with DOWN SYNDROME
Part one
By Lâm thị Duyên OAM and Phan văn Đặng OAM
This is the first part of Mrs Duyên’s experience of caring for her daughter who has Down syndrome. Part two will appear in the August/September edition of Carers News.
As Vietnamese parent carers we've met a number of difficulties over the years such as language barriers, lack of information on services and benefits, and lack of understanding in the Vietnamese community.
27 years ago we brought to life a bundle of joy, but we were bewildered when our daughter was diagnosed with Down syndrome. After two years, the doctor reassured us that we should try to care for her, and that she would lead a normal life when she reached age 16.
Caring for a child with a disability means your share of worries is greater than for other parents. Our baby was physically weak, couldn't suckle, displayed strange behaviours, couldn't talk and had a string of diseases. There was no information, no one to guide us, and we had to find creative ways to teach her even though we didn't know where to start.
She resisted our attempts to show her how to do things, and the two of us also disagreed about the right way to raise our child. Everything must start from zero: we've gone through a lot of difficulties and she taught us that parents need to love and work harmoniously with each other in order to help the child develop.
By the time our daughter was 20, we had been trying to find out about her disability for two decades. We tried to find Vietnamese information on Down syndrome at the library but there was none. At that point we formed the Vietnamese Parents with Disabled Children in NSW Support Group. The group is based on personal experiences, and families supporting other families. We share mistakes and successes, because we understand that parents today are going through what we went through years ago.
Over seven years the group has published six books about autism and Down syndrome:
Raising a Child with Autism
Understanding Autism
Asperger syndrome and NLD
Autism and Treatments
Down syndrome: a Guide for Parents
and a magazine entitled Parents with Disabled Children.
These publications can be found in libraries all over Australia where there are Vietnamese communities. We have also written a book about cerebral palsy that we plan to publish in the near future. After seven years the group remains independent, relying only on donations from parents and other benefactors. It is thanks to this that we are still here today.
Part two.
Issues for Vietnamese parents carers
This is part two of Lam Thi Duyen’s experience of being a parent carer for her daughter with Down syndrome. Here she examines some of the common issues for Vietnamese parent carers.
Language barrier
Some parents don't know English, can't read information and as a result don't know about their child’s disability, services available or their entitlements.
Difficulty in getting a diagnosis of child’s disability
Sometimes doctors can be dismissive of a parent’s concerns about their child, or not know enough about a disability to be able to diagnose it. It is important to get the child diagnosed early, so they can go on the waiting list for services. Parents should get a second opinion if they are not happy with their doctor.
With autism for example, which is only diagnosed by observing behaviour, parents first get a sense that something is not right - the child is late to talk, or exhibits strange behaviour. Their doctor, who is not a specialist in autism, usually advises them to wait, or in some cases arrogantly insists s/he knows best if parents push for a diagnosis.
When the child is four or five, and exhibiting increasingly strange behaviour, the doctor finally diagnoses autism. This has wasted a lot of time as children need to be on the waiting list for services before the age of five, and it can then take one to two years to access speech or occupational therapy.
No knowledge of services or benefits
Even after the diagnosis, parents still don't know or are not advised as to the benefits they and their child are entitled to, where to go, who to see, what to do to access services. Not speaking English makes things worse.
Parents simply think that caring for a disabled child is their own responsibility. They don't realise the government has programs to help.
Barriers due to culture and traditions
Vietnamese parents can be reluctant to ask for services, because doing so means admitting they have a disabled child. Some people feel this makes them ‘lose face’; that it's a shameful thing. This thinking cuts across all socio-economic groups.
Where the child has been diagnosed, some parents keep the child at home rather than letting them use specialist services.
Parents think the child can't learn, and passively accept that nothing can be done to improve him or her; that this is their karma. Parents feel they have to just endure the situation, and feed and clothe the child. Sometimes culture and tradition is used as an excuse to deny reality, rather than trying to help their child develop.
Some parents take their children overseas for cures such as faith healing, magnetic healing or even acupuncture. By the time they realize there is no magic cure and instead allow the child use services in Australia, a number of years have been wasted.
Parents disagreeing about treatment
Sometimes the parents disagree about the best course of treatment for their child. One may want an intensive program of intervention, while the other thinks it unnecessary. The child becomes disadvantaged as a result and doesn't develop to the best of his/her abilities.
Lack of community understanding of disability
Disabled children are frequently teased or assaulted, and parents are accused of not disciplining children with autism or Down syndrome. This lack of understanding contributes to parents keeping children at home and indirectly hinders their much- needed development.
Helen Clarke
Marketing Communications Coordinator
Carers NSW 2007