A mother's journey with autism

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Alina Gooi and her two children.

Finding functional space for the autistic person requires patience and dedication… and lots of love.
Autism is a condition or disorder that begins in childhood and causes problems in forming relationships and communicating with other people1. It is estimated than one out of 600 children in Malaysia is born autistic2.

While there is no known cause for the disorder, children with autism do show early signs and symptoms. According to Dr Ditto Prihadi, an educational psychologist, “Children with autism do not attempt to make eye contact with other people from a very early age because they simply do not tell differences between living and non-living materials. In other words, they see us as they see tables or walls.”

And there’s a darker side to it: “Unfortunately, autism cannot be prevented or cured because it is not a disease, like the ‘flu,” Prihadi says. If there is no cure, how then do the children cope in life?

Syerleena Abdul Rashid

Alina.

Early intervention programmes are designed to develop the child’s capability to be at par with other normal children. Basic living skills such as hygiene, etiquette and physical exercises are emphasised in these programmes. Prihadi says that the challenges come from the parents of the children more than the children themselves: “The most dominant thing that stops autistic children from learning and growing is the parents’ denial. It is better for the parents to find a doctor or psychologist who is supportive and whom they can trust.”

While it is critical to know the treatment to enable autistic children to move on in life, what is missing from today's dialogue is the daily effects autism has on families with an autistic child. I meet up with Alina Gooi, a 34-year-old mother living in Gelugor, to find out about her journey.
It’s about creating a world for Eugene and trying to sync up his world to the one we all live in. For example, whenever we are out in public, I have to make sure that we are seated away from other people so that his tantrums will not disrupt others, and at the same time, get him used to being in public. People who don’t know about autism tend to stare at us disapprovingly whenever Eugene throws his tantrums, thinking we are bad parents for not controlling our son.

Her son, eight-year-old Eugene, greets me at the door, curious at having a stranger in his home, but makes no attempt to engage in eye contact. Instead, he takes the packet of gummy bears I brought along for the visit and walks back to sit next to his mother in the living room.

Karen Lai

Eugene.

Before Eugene’s diagnosis, Gooi was working fulltime as a secretarial assistant in a local company. Today, she is a full-time housewife – a decision she made a year ago – to devote all her time and attention to ensuring Eugene’s development and progression. Eugene did not start walking until he was 16 months old. He made no eye contact with people, and social settings always triggered tantrums. Unlike other children his age, Eugene had poor nonverbal communication skills.

When he turned two, Gooi took him to be assessed, and he was officially diagnosed as autistic. Prihadi notes that while autistic infants would have already shown obvious signs, it is not uncommon for parents whose first child is autistic to have him or her assessed at a later stage because they simply do not have other babies with whom to compare. “When the doctor confirmed Eugene’s diagnosis, I was devastated,” Gooi says. “I had no idea what the world had in store for me. I only knew our lives had to go on.”

But she took things in her stride, and when asked about the challenges raising Eugene, Gooi replies, “It’s about creating a world for Eugene and trying to sync up his world to the one we all live in. For example, whenever we are out in public, I have to make sure that we are seated away from other people so that his tantrums will not disrupt others, and at the same time, get him used to being in public. People who don’t know about autism tend to stare at us disapprovingly whenever Eugene throws his tantrums, thinking we are bad parents for not controlling our son. That is something I have to get used to.”

Syerleena Abdul Rashid

Eugene getting ready for school.

Besides coping with public misunderstanding, Gooi had to work on understanding Eugene as well. “I had to stop comparing his development with that of other children his age. While other children are able to express their needs, Eugene communicates differently. For example, when he is hungry, he’d take me by the arm and lead me to the kitchen, instead of verbally telling me.” While learning ABCs and 123s may be important, Gooi focuses more on Eugene’s living and social skills: “I make sure he is able to perform certain living skills such as eating, putting away his own toys, brushing his teeth and using the bathroom on his own.”

When Eugene was four years old, Gooi enrolled him at the National Autism Society of Malaysia (Nasom), an NGO that aims to provide education, help, care and protection for people with autism. Gooi says that while attending Nasom benefited Eugene, the fee of RM450 per month proved to be too much for the family; it was one of the reasons why Gooi transferred him to the School for Mentally Retarded Children at Jalan Datuk Keramat instead, which provides free education for children with special needs. The school currently has an enrolment of 86 pupils, aged five to 18, who receive free education in subjects such as science, general knowledge, living and social skills, writing and others. The school is funded by public donations, an annual grant from Penang’s social welfare department and fundraising projects run by various organisations.
Despite everything, there is a silver lining around the cloud: Eugene took to singing like a duck to water. Whenever he sings, he lights up the room he is in.

While other parents hope that their children strive to become lawyers and doctors, Gooi is content if Eugene could live independently, function normally in a social setting and perform manual tasks. “Children like Eugene are normally trained to perform repetitive tasks,” Gooi says, “and they are welcomed for employment at places that provide opportunities for handicapped people, such as the Eden Handicap Service Centre.”

The Eden Handicap Service Centre is a charitable non-profit organisation. Set up in 1991, its mission is to give the disabled the dignity to lead self-sufficient lives by providing them with employment, mostly in recycling, crafts, office cleaning and housekeeping services. It is funded by public gifts, churches, government agencies and regular donors.

As autistic children are categorised as disabled, or “orang kurang upaya” (OKU), the social welfare department currently provides Eugene RM150 per month. “After Eugene has secured a job, the social welfare department will raise Eugene’s allowance from RM150 per month to RM300 per month. I hope the amount will be able to sustain Eugene in the future,” Gooi says.

Despite everything, there is a silver lining behind the cloud: Eugene took to singing like a duck to water. Whenever he sings, he lights up the room he is in. “He can barely speak, but he sure can sing,” Gooi says. True enough, the moment she started to play a nursery rhyme on her phone, Eugene began to sing coherently – and beautifully.

And since attending the School for Mentally Retarded Children, Eugene is able to speak, albeit minimally. He can recite the days of the week. But when I ask what day it is, he answers, “Today is today”.

Perhaps this is because they have been living one day at a time…

Additional details:

School for Mentally Retarded Children 626, Jalan Dato Keramat, 10460 Contact: +604 226 3325 Email: skktadkpp@yahoo.com

Eden Handicap Service Centre

CO-9-GF, Kompleks Masyarakat Penyayang, Jalan Utama, 10450 Contact: +604 228 2758

 

PEmilia Ismail is a freelance writer. She blogs at www.sundayyellowcardigan. blogspot.com.



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