Trying to live an ordinary life7 July 2010
By PANG HIN YUE
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.
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.
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.
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 firstname.lastname@example.org.
For enquiries of services and support groups, call Malaysian Care (03 90582102) or Dignity & Services (03-77255569). E-mail: email@example.com.