A tale of a mother’s lonely toil

Therapy for Autism can cost anything between RM5,000 and RM8,000 a month. — AFP file Photo)

Therapy for Autism can cost anything between RM5,000 and RM8,000 a month. — AFP file Photo)

Fate did not give Zoya Ileana much choice eight years ago, when she and her husband welcomed their third son into the world.

The joy of having another child quickly turned to distress for the couple, after their son was diagnosed with Asperger’s Syndrome – a form of autism that affects social and behavioural development.

“As a child with Asperger’s, interaction with his peers or outside activities like sports does not come naturally,” Zoya said when met by Malay Mail Online.

“I have to plan things in a controlled environment and slowly at his pace, and when he is ready he will do it on his own,” she added.

Zoya, 43, said her immediate family has been very supportive in helping her eight-year-old son grow as a person, but stressed that he still needs to attend regular therapy. However, the treatment is not cheap.

Zoya Ileana

Zoya Ileana

The therapy can cost anything between RM5,000 and RM8,000 a month, which means she must keep working despite needing to keep a constant eye on her son.

“If I stop working there would not be enough money. But if I keep on working, who’s going to take care of my kids?” the independent business consultant said.

Despite her son’s need for supervision, Zoya said her family has had little help from their neighbours in the Subang suburb where they live, a situation that she believes is similar for many other families with autistic children.

Citing as example the recent eviction of an autism consultancy from an upscale neighbourhood in Cheras, she claimed that many Malaysians simply choose not to recognise autistic individuals in their community.

“It’s not that they don’t understand… but it’s a matter of whether I want to live in an area where I see these people, it’s a matter of choice. It’s a matter of stature.”

Charlene Marie Samuel, who operates the evicted consultancy, agreed that Malaysian society is still far from accepting of autistic individuals or anyone with special needs.
“I mostly feel that there is a lack of acceptance of children and people in the spectrum generally.

“Many are ostracised for being different,” she said.

Zoya acknowledged that the government provides RM20,000 in financial aid for families with special needs children, but stressed that the problem lies with an education system that is simply incapable of accommodating the needs of children such as her son.

She lamented the lack of teachers in the public system who are trained to recognise and deal with special needs children, many of whom end up performing poorly in school.
Special needs children also tend to face discrimination and bullying in public schools, Zoya added.

The Health Ministry, however, said the government understands the predicament faced by autistic children and intends to expand on its early intervention programme managed by a multidisciplinary team (MDT) in each district across the country.
This will be on top of the 3,213 existing facilities that provide assistance to people with autism, it said in an email response to Malay Mail Online.

A total of 141 MDTs – comprising medical professionals, caregivers, school teachers and representatives from relevant agencies – have already been set up, but the ministry did not say when it will roll out more teams.

For all the difficulties that she and her family must endure, however, Zoya cannot imagine — even for a second — life without her youngest son.

“He taught me patience, to be more self-aware, and most importantly, the real meaning of unconditional love.

“I do not see it as a sacrifice but a gift to be able to have someone who is so pure and truthful with their emotions… my son is a blessing,” she said.

 

Source: https://sg.news.yahoo.com/autism-row-tale-mother-lonely-toil-225500259.html

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