Go out and do a good deed

CALL it uncanny, but just after my letter “In defence of irate people”, was published (Sept 12), this sad article appeared in The Star Online: “Mother confesses to police: ‘I strangled my autistic daughter’” (Sept 12). According to the report datelined Bangkok, a single mother told police she strangled to death her 15-year-old autistic daughter because she could not afford to look after her.

I couldn’t hold back the tears upon reading this as I realised it could have easily been me or my son’s mother who has had to take on a large chunk of the care giving when I was away, working in a foreign country years ago.

She, like many mothers, had to balance this delicate tightrope that for some, unfortunately, end up in a stranglehold of desperation so tight that death seems to be the only viable solution.

My heart goes out to the family impacted by this terrible tragedy as I and, I’m sure, millions of other people affected by autism and other terribly debilitating medical problems would have faced a moment of desperation that a deed as unthinkable as this could have perhaps flashed across their minds too!

Let this poor child’s death and her mother’s trauma and grief be not in vain as I am determined to make a stand and call upon the powers that be to seriously look at more decent respite care and supported living/ loving centres be made available to help prevent such wasteful and unnecessary death and trauma like this from ever happening in Malaysia and in other developing countries too.

I’m sure you can recall this newspaper previously highlighting stories of special needs people found chained or caged by their caregivers or even parents.

How easy was it for the uninformed to read stories like those and instantly condemn them as acts of cruelty? How can parents be so evil, they ask.

Let’s play a game of numbers here. If your wife and you have a combined income of RM4,500 and have several mouths to feed, including an autistic child, how do you propose the mechanics of this household works?

Hire a caregiver for RM2,000 to care for your child so that you both can go out and earn that income? Then what would you and your family live on? Love, fresh air and sunshine?

In such dire situations, something has got to give! So, is an irate caregiver or a desperate parent without day care options (who end up incarcerating their charge) or a caregiver who’s just taken away the life of her own child an evil person?

By the way, while this incident happened in Thailand, it doesn’t mean it won’t happen here. Perhaps it has but it just never made the news.

Coincidentally, someone in my chat group recently shared a first-person account of a man who now has not just an autistic son to care for but a wife too, as she recently broke down and is in psychiatric care. If you’re reading this sir, my heart goes out to you.

I believe this story has the potential to cajole both the public and private sector to find a way to work together to explore all options available to help these special people on the poverty line.

As you can see from the hypothetical numbers mentioned, help is needed even by people who do earn decently but not enough to get by with a special needs person on board.

I must say there are centres available out there that do the best within the confines of their limited and dwindling funds to provide respite and supported living.

Due to the limited funding (mainly from public donations), the board of trustees and caregivers are landed with the unenviable role of professional beggars because private donors are increasingly difficult to come by.

As a parent, I’d like to highlight the National Autism Society of Malaysia (Nasom, in particular the Bandar Puteri Centre and Group Home) which has given the much needed respite for many parents to get on with life.

I would also like to highlight a small outfit called Dignity & Services which provides weekend respite care called Options for young special needs adults. Run by volunteers, they certainly provide dignity to both special needs adults and their parents.

Large corporations such as Gamuda Berhad have also made job opportunities available for higher functioning special needs adults and I salute them too.

There are many other centres out there that do an equally great job too but, sadly, nothing in the world is free and if you are in the same dire position as the young single mother in the news report, woe be upon you.

Lastly, I have a small plea to all of you reading this. If whatever has been shared here resonated with you, moved you, or enlightened you on the plight of people like the young Thai single mother and her autistic child, just go out and do the simplest, easiest action to make your positive dent in the universe. Call up any of these centres and offer to volunteer your help. Your donation will also go a long way in preventing more tragedies like this.

I’d like to thank my old friend Ooi Boon Leong and Star Media Group managing director/ CEO Datuk Seri Wong Chun Wai for encouraging me to speak openly and candidly on the plight of people with special needs and their parents.