Raising a child with mental disabilities requires emotional resilience and flexibility. Two mothers share their experience in undertaking the various medical, caregiving and educational responsibilities in bringing up their children, and gaining strength and inner peace in the process.
GERALD Chan Wai Khin looked almost serene as he dawdled about the sleepy enclave of a two-storey bungalow.
Inside, the living room was alive with the shrill sounds of children. Mats in red, green and blue coated the floor, on which half a dozen children were lying and moving around.
Gerald remained oblivious to the commotion, his face complacent as a young child's, as a staff member propped him up on a chair and wiped the drool off his face.
Like many of his peers, Gerald had been napping that late morning when my photographer and I paid a visit to the training centre of The Society for the Severely Mentally Handicapped (SSMH) in Petaling Jaya, Selangor.
Medication for his epilepsy – a condition marked by recurrent seizures that causes the brain's messages to become halted or mixed up – makes him drowsy, Tham Keng Seng, the centre's administrator, later explained.
If Gerald was perturbed by the presence of strangers, he certainly showed no sign of it.
The place was after all, familiar territory for the 30-year-old, who was born with a cleft lip and palate, and has hypotonic cerebral palsy. He was first admitted at the centre some 15 years ago when he was only 15.
The SSMH, a Selangor-based voluntary organisation, was established and registered with the Registrar of Societies in 1984. The society's training centre was built to facilitate its training programmes for special children.
On weekdays, the centre conducts morning and afternoon sessions aimed at training and providing rehabilitation for children and youths with severe or multiple mental and physical abilities aged two to 19 years.
There are currently eight full-time staff comprising an administrator, six teachers, a housekeeper and three therapists at the centre to help educate and acquaint these children with basic survival skills such as motor skills, language and communication skills, self-help skills like toileting, eating and dressing, as well as cognitive and social skills.
Since the centre started, the society has helped almost 100 children develop some basic living skills. At least 15 of the group have gone on to integrated special schools, having progressed from the training received from the centre.
Gerald's case is especially severe, as his mother, Evelyn Chan, SSMH's honorary secretary pointed out.
"On top of his hypotonic cerebral palsy, cleft lip and cleft palate, he also has a hole in his heart," says the articulate 63-year-old retired lecturer.
Hypotonic cerebral palsy is a form of cerebral palsy that is marked by floppy or overly relaxed muscles.
People with the condition have arms and legs that hang down like a "rag doll" and have lax joints.
This means that Gerald has difficulty walking, and has no control of his head.
The condition also causes postural problems, as well as breathing and swallowing difficulties. Speech may also be difficult, and intelligence is usually affected.
Despite his age, Evelyn still sends Gerald frequently to the centre. The systematic approach and schedule at the centre is something the mother-of-three has grown to appreciate.
She had, after all, shouldered most of the medical, caregiving and educational responsibilities in raising Gerald for the first 15 years of his life.
"We didn't know there was a society for the severely mentally handicapped, so much of Gerald's early training was done at home.
"I was fortunate enough to be able to engage the services of a speech therapist, a physiotherapist and an occupational therapist, who would go to my house to conduct lessons at different times of the week," she says.
But Gerald's physical and mental disabilities still required constant attention from the doting mother, who spent 24 hours a day tending to her son.
"When he was younger, he couldn't even sit on a normal chair and we had to buy special chairs for him.
"He was so floppy, he also needed support for his neck."
Gerald continued his treatment at the centre, reinforcing physical skills like standing, sitting and crawling by balancing on a fit-ball and a standing-frame.
"All the things that we take for granted, Gerald had to struggle to learn," says Evelyn.
Despite the challenges, Gerald would learn to walk at age 12, and would gain enough strength to walk up to 15 minutes unassisted after he enrolled at the centre.
"There was a point where he could walk one round at the padang (field) without any help," Evelyn says.
Unfortunately, a severe epileptic attack a few years ago has affected this ability, and brought all progress to a halt.
Evelyn wasted no time in helping Gerald get back on his feet. "He still can't walk to this day, but we continue doing regular physical exercises to help him regain the balance and physical skills he has lost," she says.
Evelyn, who has two younger daughters, shares that her daily activities now revolves around chauffeuring Gerald to and from the centre, helping him exercise, taking him to parks, feeding, and generally tending to his needs.
At night, before bed, she reads and sings to him. "He loves books with pictures, and I try my best to read to him every day," she shares.
Finding hope
Like Evelyn, SSMH vice-president Noriah Abdul Rahman, dedicates her life to taking care of her son Nor Asraf Rosly.
Although he is physically able, Asraf, 20, was diagnosed with having developmentally delay, and has an abnormally large head. He also has moderate autism and moderate mental retardation.
Noriah, 54, first noticed something amiss when Asraf was three months old. "He looked normal, but he wasn't like any other children and was certainly not like his two older siblings," the soft-spoken homemaker begins.
At six months, the youngest of her three sons had still not learnt how to move and often just lay where he was put, she shares.
It wasn't until he was two that he finally learnt to sit up.
Noriah first learned about SSMH when Asraf was four, after being introduced to the centre by a doctor at a private medical centre. At that time, Asraf had still not learnt how to walk or stand, and was still in diapers.
But after spending a year at the centre, doing gross motor exercises such as walking, balancing, standing, climbing and squatting, as well as honing fine motor skills like eye and hand coordination, and self-help skills like feeding, dressing and toileting, Asraf started walking unaided at the age of five.
By six, he was able to eat and drink on his own.
A year later, he could dress and cleane himself, and go to the toilet with minimal assistance.
Although Asraf has never learned to talk, he understands verbal instructions and communicates through vocalisation, as well as performs social gestures such as shaking hands.
At 13, Asraf left the centre as he had acquired all the necessary basic skills. "He graduated early," Noriah says with a laugh.
In 2003, she enrolled him at a more advanced special school with the hope that Asraf would gain some basic vocational skills, but her dream didn't come to pass.
"I was hoping that he could learn to do simple chores like packing magazines into envelopes, but Asraf couldn't cope with that," she shares.
But Noriah remains optimistic. "He can now go to the bathroom on his own, though he sometimes forgets to take off his pants or stands under the shower with his clothes still on," she divulges with a laugh.
The biggest challenge lies in communicating with her son.
"Asraf can't talk, so we have to try to understand what he's trying to say from his body language.
"If he wants to eat, he will go to the kitchen. Or if he wants to drink, he will get a cup."
Now, the family is focused on helping Asraf hone his social skills. Asraf, who has grown acquainted with being outdoors, now enjoys regular outings to the mall, and playing ball outside the house with his siblings.
A common endeavour
While both mothers come from different backgrounds, they are united in their endeavours to care for and to protect their children, especially in the face of stigma and discrimination.
Gerald does get stares from random passers-by whenever we bring him to places like the mall, Evelyn shares.
While they are often harmless, these fleeting glances can sometimes leave a deeper and more troubling impact on the family.
"In Asia, having a special child is often seen as a bane. Some families may not even bring their children out of the house," says Evelyn.
"Even my youngest daughter would tell me that she hates kor kor (brother) when she was younger. She would try to hide him, and would never want me to tell any of her friends about him."
"I think it is very natural for kids to feel ashamed of a sibling with disabilities, especially when they are young.
"But my daughter is 20 this year, and is now very protective of Gerald."
The advent of a special child can also have significant impact ona marriage if not properly dealt with, Evelyn opines. There have been many instances when the husband would just walk out of the family
"Both of us have been very blessed to have husbands who are supportive," says Evelyn, exchanging an empathetic glance with Noriah.
"If you look at it from a positive point of view, having a special child can actually help strengthen the relationship because you know that you need each other's help, encouragement and support to make things work."
Giving back
Both women are now committed to helping other children with disabilities by becoming committee members of the society.
To enhance the learning experience for these children, the centre is also equipped with a Snoezelen Room, a multi-sensory room with equipment designed to help stimulate the primary senses of touch, sight, smell, taste and hearing.
"Our children have a very low sensory threshold. The equipment in the room helps stimulate their senses," says Tham.
Some of the equipment in the room include a "blower", which creates a blowing sensation on skin, a vibrating bubble tube to stimulate the sense of touch, and changing lights to encourage eye-tracking.
The society currently needs about RM20,000 a month to maintain the training facility and to ensure the continuation of its programmes.
About 10-15% of their requirements come from the Government through the Women and Family Development Ministry's Department of Social Welfare, but the SSMH does not have a regular source of income.
Funding is obtained mostly through donations from the general public and the corporate sector, and through their own fundraising activities.
The SSMH is also planning to renovate its facility to create more space to conduct training for the children. The renovation costs are estimated to be around RM500,000.
To find out how you can help, log on to www.ssmh.org.my to learn more about the society.
Alternatively, you can also contact the centre at: careforhandicap@ssmh.org.my or call them at 03-7874 6703.
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