All about acceptance, action and support

Parents-teachers group goes all out in highlighting importance of early intervention programme for kids with special needs

PRIMARY schoolteacher Fifi Aisya Maslini, 34, is not afraid to let the people of her village in Roban, Saratok know that her six-year-old daughter has severe autism.

Such outlook has somewhat made her the advocate for the children with special needs in her small community.

Fifi Aisya has maintained close communications with fellow teachers ever since her daughter was diagnosed with autism, sharing with them the ways to interact with and attend to the girl, especially when she needs something.

Today the people of her village, with a population of about 7,000, have deeper understanding of children’s development and learned ways to support them.

“Last year, there were some parents who suspected that their children might be ‘special’ and they started asking me for advice. So yes, there’s some publicity there, and I gave them a teacher’s contact.

“So, I’m kind of like an influencer from the rural area.

“This preschool teacher, she has a boy in her class who has yet to utter any word. She asks me to talk to the boy’s mother because she refuses to accept the possibility of her son being a child with special needs, and that the boy is in need of strong support,” she tells thesundaypost.

Reaching out to the rural areas

Having a good advocate like Fifi Aisya is the very thing that the Methodist Care Centre (MCC) has always hoped for since it expanded its Early Intervention Programme (EIP) to a number of smaller towns in Sarikei in 2015.

The EIP point in Sarikei town, about an hour drive from Sibu, reflects MCC’s mission of reaching out to the rural areas in terms of support for and awareness of children with special needs.

Chew Siok Cheng, one of the pioneers who established the EIP in Sibu in 1998, regards EIP Sarikei as not just a milestone for the MCC, but also a crucial step towards finding ways to support all children with special needs.

She acknowledges that the children in the town area have the advantage over those who live in the rural pockets, which lack many facilities.

“Not many parents can afford to travel far to send their kids for the programme.

“It is very important for everyone to realise that having an EIP in Sarikei is crucial not only to support the children, but also the parents,” says Chew.

Her statement holds true for Caroline Sia, 41, who hails from Melaka but is now residing in Sarikei.

If there had not been such a facility in Sarikei, Sia would have considered relocating to Sibu or even to Kuala Lumpur.

“Thank God, we have the programme here,” says this mother of two, whose son was diagnosed with mile autism, at age two, back in 2018.

In Fifi Aisya’s case, she is committed to driving more than two hours from Roban to Sibu, twice a week, to ensure that her daughter would undergo the early intervention programme.

Another parent Diana Lim, 43, from Sarikei, regularly undertakes an hour trip to Sibu to have her autistic son attend sessions meant to help him communicate better.

Back to Chew, she commends the government for having set up many community-based rehabilitation centres (PPDKs) throughout Sarawak, but she also points out that the specific support for children with special needs may not be sufficient as the PPDKs cover all age groups.

“When you have a centre that covers a wide range of age groups, from three-year-olds up to those in their 30s, how can you support them all under one programme?” she questions.

Lack of understanding

The severe lack of understanding could be attributed to the lack of facilities and specific programmes for children with autism. Often, many parents experience difficulties in controlling and managing their children’s behaviours – they are just at a loss as to what they should really do to make it work.

Lim can relate to this.

“I was unable to deal with my son’s tantrums, and this made me ‘very helpless’.

“I had wished for things to change, for his condition to only be temporary.

“I just didn’t know what to do with this kid. I kept asking myself – ‘am I a bad mother’? What did I do wrong? What would his future be like?

“Some relatives had told me that I might have done something wrong in the past; that’s why my son has this problem.

“His temper is terrible, and he cries a lot,” she laments, adding that her son did not learn anything at school because he was unable to communicate well.

“More precisely, nobody could actually understand him.”

Lim decided not to waste any time – in 2017, she sent her son to undergo assessment, which later confirmed that the boy had autism.

In 2018, she registered him with the EIP and a few months into the programme, there were improvements – the boy had become more obedient and for the first time, the family was able to understand him.

“He can express himself better; he can let us know what he wants; he can read and write now, which had really surprised his teachers,” says Lim.

In her experience, Fifi Aisya recalls what her relatives had told her about her daughter’s condition – that it was normal for some children to be ‘late’ with regard to speech.

“Back then, my daughter could not engage in eye contact and would not answer whenever people called for her.

“Today, she is able to express herself better, and people are able to understand her better.”

For Sia, she admits to believing her relatives, who said that her son’s speech delay could be hereditary.

“I even told the doctor the same thing – it’s genetic. My in-laws had said that my husband was also like that.

“However, the doctor told me to not look into genetics first; that everyone needed to figure out what’s wrong to help the child.

“I did exactly that.”

In need of support

The MCC is all encouraging when it comes to inclusive education, but there are some parents who cannot accept the idea of mixing children with special needs and the other pupils in a class.

In explaining this, EIP Sarikei superintendent Kylie Ung Ying Li believes that the parents of normal pupils are worried that such a move can negatively influence their children’s learning.

“I put it as lack of understanding. They (parents) do not understand that inclusive education can be good for all the children.

“The normal kids can learn to take care of their special-needs friends and would have more sympathy, while the special kids would receive help from the normal kids.

“This way, they learn faster, and they can socialise better – all of them,” she points out.

Ung says despite the EIP having made good progress in Sarikei, there is still a lot of work to be done.

It is stated that at least 10 children with special needs have been referred to EIP Sarikei every year since 2019. Right now, six are still on the waiting list.

“They (children with special needs) need a lot of support, especially the severe cases who are unable to undergo primary education as the school cannot cope with their situation.

“We, the EIP facilitators, can only do so much at the moment, due to limited resources and manpower.”

It is made known that there are only three EIP teachers in Sarikei – Ung herself, Tang Swee Gek and Ngu Chew Yieng.

“The MCC in Sibu has always been supportive, but we also realise that there are many children still on the waiting list, and it (MCC) needs to focus on the kids in Sibu,” says Ung.

“However, the MCC continues to run awareness campaigns, one of which involves gathering the parents of children with special needs to share their experiences with one another.”

Chew, who is currently teaching Early Childhood Education (ECE) at Methodist Pilley Institute (MPI), acknowledges the challenges faced by the MCC, especially the lack of resources, in helping the people in the rural areas.

“It’s a sad reality, but we really cannot afford to establish more EIPs in the rural areas because it is a very costly undertaking – there may only be two, three or four families in a small ‘kampung’ (village).

“For me, the best approach is to train the local community, train the teachers so that they would know how to teach, support and deal with children with special needs.

“For Sarikei, our approach is this – we are not opening an EIP centre. Instead, we have ‘challenged’ the local church to establish an intervention programme at its kindergarten,” she says, adding that this is one of the ways ‘to break the taboo’.

Chew hopes that through EIP Sarikei, the awareness would reach further into the rural areas. It is known that EIP Sarikei also engages children from areas as far as Kabong, which is more than an hour’s drive from Sarikei.

Importance of EIP

Sia now realises the importance of EIP in supporting the children with special needs, having seen how it has helped her son.

She also believes that it is important for parents to have their children undergo assessment if they think something is wrong with them.

“I believe many people can sense that something is wrong with the children, but they do not dare to tell anyone for they just want to mind their own business.

“This is not right, because the earlier you send your kids to EIP, the earlier you can help them,” she says, pointing out that after six months of undergoing EIP, her son could communicate better than before.

Sia attends the EIP class together with her son and along the way, she has picked up the skills and knowledge that she can apply at home.

For Fifi Aisya, she is doing her part in spreading the message about the importance of recognising, accepting and supporting children with special needs in her village.

Lim, on the other hand, is still unsure whether or not relatives could accept the fact that her son is autistic, but she harbours hope that the boy could catch up in his studies.

* This article was written as part of the assignments under the Journalism Fellowship Programme by SIGNIS Asia. Themed ‘Journalism in a Fragmented World’, this seven-week fellowship, which kicked off in October 2021, seeks to build capacity and promote exchange among media professionals and journalists from across Asia wanting to use their respective platforms for social change. It is being run on a virtual format managed from Kuala Lumpur.