Thursday, July 8, 2010

ONE VOICE: July 2010

Trying to live an ordinary life


THEY did not bag the grand prize of RM350,000 at the recent Standard Chartered KL Marathon 2010 but they went away as winners. There is no price for their camaraderie and determination to compete in the race.

Sporting a black cape tagged Dignity and Services: For and with Persons with Learning Disabilities, Ken Han, 20, Mathew Chan, 18, William Chen, 22, and Yudesh Subramaniam, 22, completed their run just like the rest of the 16,500 participants. No exceptions made. No special treatment given. For the foursome who each has different learning challenges, it was a feat to be part of the ordinary. They represented Dignity and Services (D&S), an advocacy group for persons with learning disabilities that seeks to empower them with the right to be heard and to live a full life in mainstream society.

For volunteers Josh Green, Rupert Burton and Kosheila S. Pillay as well as D&S staff member Fendi Edip who joined in the run, they were elated that everything went without a hitch.

They injected some fun by donning party masks, while Mathew and his mother, Astella Hew, set the pace by being the first in the group to cross the finishing line.

The weekly training at Kiara Park in Taman Tun Dr Ismail (TTDI), Kuala Lumpur, had paid off for the foursome. The successful run boosted their confidence and they have set their sights on competing in other sports events. Green is more than happy to train them and hopes more of their peers from the transition home called “Options For Supported Living” will take part.

Options, which is open from Wednesday to Sunday, is filled with laughter, warmth and merry chatter whenever these young adults gather together.

Hope abounds

The seeds of love and hope sown by parents, caregivers and friends, have undoubtely borne fruit at Options.

“I like being here because I have friends and I can learn to live independently,” says Charmaine Chan, a bubbly 20-year-old.

Initiated in 2006 by D&S with the view of enabling young adults with learning disabilities to take short breaks from their family home even as their parents learn to let go of them, the concept of supported living is gaining ground.

“Supported living is about the learning disabled having a safe, decent home of their own with support from people who care for and respect them. This project serves as a transition towards planning for life in the future,” explains D&S executive director Mettilda John who oversees Options with help from her staff and volunteers from Monash University.

In the five-room double-storey link house along Pinggir Zaba in TTDI, the humdrum of every day life is celebrated. Here, the adults learn to live, play, plan meals, shop for groceries, cook, bake, take public transport and do household chores.

It is all in the spirit of seeking an independent and meaningful life within the community. They are also learning to care for pets with the adoption of two cats named Pinky and Brainy.

“It looks like Pinky and Brainy are made for supported living,” jokes Mettilda. “The participants at Options love them to bits. Those without the capacity for speech often make a beeline for the cats, and spend time stroking the felines and playing with them.

“All we want is an ordinary house in an ordinary neighbourhood where the participants can do ordinary day-to-day stuff. Options is not about having a highly structured programme; it is more about learning through living an ordinary life like the rest of us,” stresses Mettilda.

As parents age, they have to learn to let go of their special needs children and give them the opportunity to make choices and grow independently, she adds. “Options provides families with an avenue to let go of their children or siblings in a secure environment.”

When the project first started, there were only five people. Over the years, as more parents caught on the idea, the number has risen to 15. Now there is a waiting list.

For parents like Wendy Cheong, she is thankful that Options has given her some personal space when her son, Cheong Choong Jian, 18, goes there for sleepovers.

A home-maker, Wendy has her hands full caring for her bedridden father-in-law. In the last three years, she has taken on the additional responsibility of caring for Choong Jian after he became wheelchair-bound following a diagnosis of peripheral neuropathy, a condition in which nerves outside of the brain and spinal cord – peripheral nerves – have been damaged.

The condition can produce pain, loss of sensation and muscle control.

But both son and mother are keeping positive, and with the support of D&S and friends in Options, Choong Jian continues to enjoy his cooking sessions.

“My son and I look forward to Saturdays. He gets to hang out with his friends at Options while I take a break and go window shopping,” says Wendy.

She believes supported living has helped Choong Jian gain confidence to connect with people. Before he came to Options three years ago, Wendy says her son would keep to himself when they had visitors at home. Now he is more sociable.

Looking ahead

Wendy is heartened that all efforts have been made to ensure her son is able to move about in his wheelchair while at Options. “I’m glad he has a place where he can go to for friendship and support,” she adds.

Special education teacher Sarah Toh believes it is never too early for parents with special needs children to plan for their independence. Her daughter, Samantha Ramasamy, who was diagnosed with Kabuki Syndrome, is only 15 but she is already exposing her to the concept of supported living. Although Samantha has another two years before she qualifies as a member of Options, Sarah sends her there on Saturdays to get a feel of the place.

For Chin Keat Lai, 50, Options has opened up a whole new world. She had led a sheltered life, being cared for by her mother in Ipoh, Perak. But with the passing of her mother, she came to Kuala Lumpur to stay with her sister. Initially her family was unsure if she could cope in Options. But she surprised them by insisting on having sleepovers and participating in their activities. And she has been faithfully attending Options since March.

Mettilda, whose sister, Julie, also participates in supported living, finds it gratifying to see how the group has grown in terms of fostering friendships, taking on responsibilities and having a sense of belonging.

“There are lots of opportunities for choice-making and problem-solving when they come to Options,” she notes.

But as with all things, it costs money to make the project viable and sustainable. For now, all participating families pay a nominal sum towards the subsidised rent. All this is made possible through one of the parents who bought the house to ensure there will always be a place for the group to go to.

Seeing the happy faces of the participants and the strong bonds they have forged with one another gives Mettilda and the respective families the strength to keep championing the rights of the learning disabled.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to

For enquiries of services and support groups, call Malaysian Care (03 90582102) or Dignity & Services (03-77255569). E-mail:

ONE VOICE: June 2010

Parents urgently need support services

One Voice

MY youngest son was born 23 years ago with a learning disability. During those pre-Internet days, our main source of information was the doctors, especially my gynaecologist.

Call it maternal instinct, but I felt something was not quite right with my baby. I voiced my concern to my gynaecologist when I took my newborn for the first post-natal check-up two weeks after delivery.

I asked the doctor why my baby’s eyes were so small, and they were always teary and filled with mucus. To this day I can still remember his comment: “Oh, he has Chink eyes, that is why they are like slits and he must be ‘heaty,’ you need to give him more water.”

Later, we discovered he had blocked tear ducts when we took him to the ophthalmologist. It was really tough trying to pin a baby down to force his eyes open to clear his tear ducts. We could not sedate him because he was too young. At the end of the session, the female ophthalmologist and I were in tears.

What was I doing before that?

I was constantly cleaning his eyes, wiping away the mucus, experimenting with his diet.

Well-meaning family and friends recommended less heaty milk powders, cooling drinks, and herbal remedies for bathing, washing, and consuming.

During the first year of raising William, I had never felt so alone.

He was not taking to breastfeeding, and he was constantly crying. In the end I gave up and bottle-fed him. Yet he was not drinking well. There was always milk left over. I thought he had fallen asleep on the bottle. Looking back now, perhaps he just got tired of sucking because he had poor muscle tone, a common feature of babies born with chromosomal disorders.

Back then it was a constant experiment for me. Was the teat too hard? I changed to a softer one. It didn’t work. Was the hole too small? I made it bigger, but my baby started choking, so

I had to make a series of graded holes to find the one he was most comfortable with. Some mothers advised me to tickle his chin so he would not fall asleep on the bottle. That helped a little. Others told me to feed him in a certain position. I tried everything I knew to find the perfect feeding position, but there was none.

Feeding time during the day was not too bad. It was the night feeds that exhausted both of us. Each feed took half an hour at the least, and even then he finished only half the bottle.

Initially I kept the other half in a warmer, and tried to feed him half hour later. By the time he finished the bottle, it was only a short respite for me because he would be restless within an hour, and it was time to change his nappies. Cloth nappies were the norm then.

That was the routine – naps, cries, feeds, nappy change, water – for the first six months.

“Some babies are more fretful,” “he is not feeding well, that is why he is not growing,” or “you have a difficult baby.” These were some of the comments I received when I asked around.

In those days, we did not have the Internet, so a Google search was unheard of.

Sleep deprivation does strange things to one; I searched for advice everywhere. Even the best paediatricians in the Klang Valley said there was nothing wrong with him.

I was gripped by loneliness and helplessness. Twenty years ago, the doctor was always right.

“When the doctor said there is nothing wrong with your son, why are you looking for problems?” That was the feedback I got from family members when I told them I felt something was not quite right with my boy. I was plagued by doubts: Was I paranoid? Maybe I was not doing a good job of looking after this baby who was always crying, restless, and a little “floppy”.

When I took him to see a general practitioner for flu one day, the doctor told me: “Your child has Mongoloid features. I think you should see a paediatrician.”

But I had already seen three paediatricians, and all of them told me there was nothing wrong with my child.

The GP recommended a paediatrician he knew, and this time I was hopeful of an answer.

I saw the paediatrician and he confirmed that my child had “special needs”. However, he was not able to offer any guidance or direction. All he could say was to take the child home and treat him with lots of tender, loving care. I knew then that I was not just being paranoid. It was time to move forward. Of course, the journey and search for the next stage is another long story.

What I wanted to share is that the early years of infancy are crucial years for special babies and their families.

I wonder what is available for new parents today? Do they still go through this constant search for answers and resources? There is a great need for services and facilities for infants with disabilities. The Government must step in to take up this responsibility.

Based on various statistics and computations, we already know the expected number of potential needs. Last year 500,000 births were registered. Even if just 1% of this number has special needs, that would be 5,000 infants and families in need of support.

Is the Health Ministry and the Ministry of Women, Family and Community Development working together to provide emotional, medical and interventional support for this group in question?

If we look at the current budgetary practice in public service, there is a lag of at least two to four years before the service can be provided to this group. Why? Correct me if I am wrong but the normal practice is, when there is a need for a particular service and that need has been assessed, the procedure is to file an application to start a service for this group. If the application is approved, the request will be included in the next budget allocation.

So instead of us constantly chasing services and funds that would come too late to serve this particular need, we need a paradigm shift to ensure that such services are integral to the maternal care and childcare provided today. And this should be readily accessible to new parents anywhere in the country.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to

For enquiries of services and support groups, call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: