Down but never out

PHOTO: Down but never out

MALAYSIA - When Elizabeth Perera tells you she has been in the dumps, it takes a brave soul to refute that. After all, fighting hardship and stereotype is second nature to this hardened battler.

Elizabeth left her job as a dealer at a highlands resort after marriage and moved to Singapore because her husband was working there. But when it came time to deliver her first child in 1987, she returned to her parent's house in Klang, Selangor.

For her, childbirth was a mixture of joy, relief and a rush of confusion .

"I wasn't sure what to expect. But when my mum walked in, she felt that the baby looked different. When the nurses were trying to feed her, she choked and turned blue and nearly died," Elizabeth recalls.

But this new mother was determined to pull through. A week after Marie Anne's birth, she returned to the hospital for a routine check-up, hoping for some answers.

"I asked the doctor what was wrong because everybody was asking me strange questions. All he said was, 'Nothing, she's just a little different.'"

For a few months, despite feeling lost, Elizabeth did whatever she could for the baby. The going was all the tougher for lack of support from her spouse.

"He said: 'It's because of you that our child is born like this.' That hit me quite badly. From then on, my focus was all on my daughter and giving her the best possible life," she says.

After getting over "the mourning phase", she picked herself up and started to assess her options. With minimal financial help and a lack of information on Marie Anne's condition, she decided to enrol her at Wisma Harapan in Kuala Lumpur, a school for children with autism and Down's syndrome.

"We were very lucky because at that time, a clinical psychologist, Robert Deller, had come from Britain to start an early intervention programme at the school. Marie Anne, who was about nine months old then, became was one of the participants.

"These kids at the school were born with floppy muscles and they tended to grab items rather than pick them up with two fingers. They couldn't really hold pencils or pens. So they had to be taught.

"Under the programme, they learnt this by starting to pick up items such as marbles, before moving on to tiny pepper grains. It was a very slow process and everything they did required guidance and a lot of patience."

Coming to terms with having to do things alone was one thing; she needed money to feed her child. After months of calls and visits to the court and lawyer's office, she obtained a monthly maintenance of RM300 (S$120) from her ex-husband. However, he stopped paying after awhile, she says.

By then, she had found a job, but going out to work meant another round of new "lessons" for Marie Anne. "I had to prepare her so that she would know I wouldn't be by her side."

Elizabeth, 60, currently works for an organisation called Magic (the Malaysian Association of Guardians for the Intellectually Challenged), in Petaling Jaya, Selangor.

Marie Anne, meanwhile, has completed training stints with Westin Hotel and Holiday Inn and hopes to secure a job soon. The 24-year-old lass has a passion for baking and is obsessed with the reality television series, The Biggest Loser.

"I love watching television," she says. "When I have time, I also like to bake. I make carrot cakes and chocolate cakes and everyone eats them."

After the struggle to give Marie Anne a solid education, Elizabeth had to battle not one but two new obstacles. The first was a diagnosis about a year ago that she had breast cancer. The lump was removed and she has radically changed her diet in order not to feed the cancer cells.

Not long after that, Marie Anne was found to have a fibroid in her womb. "She needed an operation to remove her uterus, which was very daunting, so I had to prepare her both physically and mentally.

Basically, it has been one obstacle after another for the pair. "Nowadays, I don't ask 'Why me?' anymore," Elizabeth says. "I'm proud to say that I have come thus far and retained my sanity."

She is prouder still of her daughter. "I honestly think she is capable of living on her own. But it is not something that happened overnight.

"A lot of parents with special children are in denial. I've seen parents who did not have any form of early intervention for their kids. They don't realise that there is help for these kids. You need to put in the time to set patterns and give them routines so that they can learn as they grow older.

"One day, I am not going to be around, so I had to make sure that Marie Anne is capable of taking care of herself, at the very least. In that sense, I am confident that she has learnt a lot, such as brushing her teeth, bathing herself and eating on her own.

"All these little things that we take for granted are important skills that she needs to learn," says Elizabeth. "Even simple tasks like sitting and eating, had to be guided."

For example, she used to put her baby in a baby chair with a bowl and spoon and stand behind her. She would then hold her hand, get her to scoop the food and and bring it to her mouth.

"They learn through repetition. It takes months and years, so the one thing I've learned very well is patience.

"I used to make wooden puzzles and flash cards. If I wanted to teach Marie Anne the colour red, I would use the flash cards for a couple of weeks before she was able to identify the colour.

"I would take her into the room and for 10 to 15 minutes, I would make her do a puzzle or exercise. Once she was done, she could go out and do whatever she liked. Then I would bring her back in and repeat the whole thing.

"Marie Anne would cry and get upset but I made her sit there and finish it because that was the only way for her to learn. Every step of the way, I kept telling myself that no one was going to do all this for her, not even her teachers.

"I also told myself, 'I'm not going to let go of this child. I am going to prove to the doctors, my ex-husband and everyone else that she can make it,'" adds Elizabeth.

For this mother-daughter tag team, getting knocked down may be a common feeling, but staying down is never an option.