Why it's vital to care for carers

The woman was blamed by her mother-in-law for giving birth to a son with autism.

She, too, felt she had done something wrong for having a disabled child. A child with autism may have difficulties expressing himself or communicating with others. She became depressed.

Her husband, a taxi driver, stayed out to escape from the misery at home. The family also turned vegetarian "to atone for their sins", hoping this would improve the boy's condition.

At times, overwhelmed by his behaviour such as scratching or banging of doors, the family caned him, which made things worse.

Recounting the story, Ms Woo Pei Foon, head of family services at St Andrew's Autism Centre, said the child, who is now a teenager, is attending the autism school run by St Andrew's. This is one example of a family crumbling under the strain of raising a child with special needs, although the St Andrew's staff are helping them manage their turmoil and handle the boy better.

Across Singapore, many other families struggle daily with caring for loved ones with special needs.

The birth or diagnosis of a child with a disability - or multiple disabilities - brings about severe challenges and much grief, which is often left unsaid and buried deep within. Parents also wrestle with anger, guilt and denial. This struggle could go on for years and blow up in big or small ways, if not addressed.

Mrs June Tham, a veteran in the special needs field, said: "When a child is diagnosed, it's the loss of their hopes and dreams for the child. Parents would ask, 'Why me? What did I do wrong? Will my child have a future?'"

Finances are also tight, as the mother often gives up her job to care for her child. Weighed down by caring for a child who may never be independent, coupled with existing marital woes, some marriages collapse, social workers say.

So it came as no surprise when a large-scale survey commissioned by the National Council of Social Service (NCSS) found that caregivers of those with disabilities experienced a higher level of stress and strain than the average person.

Those working with children with special needs know of mothers who fell into depression and, in a few tragic cases, either killed themselves or their child.

In 2014, the mother of a seven-year-old autistic boy pushed him out of their ninth-floor window to his death. The mother, who was diagnosed with major depression and had defaulted on treatment, was reportedly seized by thoughts that her son was the reason for her exhaustion and marital woes.

So, providing support for caregivers to help them cope is critical, especially before they get to breaking point. It is also critical for the well-being of the child with special needs and other children in the family.

Last month, NCSS said it was developing a network of support for caregivers and will set up a Disability Caregiver Support Centre. The centre aims to reach out to parents whose children were recently diagnosed with special needs as they often struggle with accepting and coping with the diagnosis, thus affecting family relationships.

It also wants to help ageing caregivers of adults with disabilities, who may experience burnout after decades of caregiving.

The centre will work with agencies such as special education schools to link parents to counselling, peer support groups and other help. It will also drive research in the area and pilot new initiatives with social service organisations to support caregivers, among other things.

This new centre signals the ramping up of support for caregivers, which is much needed. Now, some charities serving those with disabilities are already providing some support for caregivers, but more can be done.

For example, groups like St Andrew's Autism Centre and the Down Syndrome Association have support groups for caregivers to share experiences and learn how to better look after their children.

There are also training courses run by various groups to better equip caregivers in their roles.

Traditionally, parents get some time off from caregiving when their children are in school or at day activity centres, where therapy and other services are provided.

In the past few years, a few charities have initiated respite programmes on weekends, where parents get short breaks to rest, relax and recharge. Parents can leave their special needs children at AWWA on Saturdays for a few hours. There is a $10 registration fee and the service is free.

Short breaks do wonders to prevent burnout, social workers say. What is needed is more respite services that are affordable and accessible. Any other support services for caregivers also have to be affordable, as many families with special needs members have stretched finances.

But beyond the provision of services, the challenge is also to convince parents - who often neglect their own needs - to use respite and other support services.

The other challenge is to find adults with disabilities who are not using any services, and their caregivers, who may need help but do not know where to go for aid.

To this end, more outreach work is needed. Reaching out to these families cannot be done by social workers alone, but by grassroots volunteers and even neighbours, who can all be trained to look out for them. Finally, the Government's drive to promote inclusiveness and enhance understanding of the various disabilities has to be an ongoing one.

Mothers get no peace of mind if family members continue to point fingers at them for the children's condition. Parents may think twice about taking their children out if members of the public stare at them or make unkind remarks.

A 56-year-old housewife, who wanted to be known only as Madam Neoh, is used to people staring at her 22-year-old son, who suffers from cerebral palsy and cannot communicate. She is thankful for a supportive husband and in-laws.

Still, it is exhausting to attend to her son's every need, from taking him to the toilet to feeding him.

Money is also a concern as her driver husband earns about $2,000 a month, and she constantly worries about who will care for her son after their deaths.

Twice a week, AWWA staff visit her home to provide physiotherapy and other therapy services for her son. The service is highly subsidised and she pays less than $40 a month.

Madam Neoh said: "I have no free time of my own but when the AWWA staff are at my home, I can relax or do some housework."

A version of this article appeared in the print edition of The Straits Times on April 05, 2017, with the headline 'Why it's vital to care for carers'. Print Edition | Subscribe