Man, 77, with 5 Down syndrome children can't afford to retire

SINGAPORE - His daughter's eyes lit up and she clapped her hands as he placed colourful kueh on her plate during teatime.

Mr Zakaria Abdul had returned home with an assortment of treats for his five children after knocking off from work.

But Ms Shahidah Zakaria is no child, although she is the youngest of five children. She's 44 years old and she has Down syndrome.

Her brothers, who are aged from 46 to 55, were also born with the genetic disorder.

A gynaecologist said that since all five children have Down syndrome, it could be the inherited form of the disorder, which is more rare.

Mr Zakaria, 77, has been caring for his children with the help of his neighbours, after his wife, a homemaker, died in 2000 from complications due to diabetes. She was 69.

The neighbours - Mr Rugiman Supaat, 59, and his wife, Madam Tuminah Salim, 60, and Mr Aziz Ali, 60 - visit Mr Zakaria's three-room flat in Tampines every weekday morning.

They help to clean the flat and feed the children. This has been the arrangement for more than 10years, but the neighbours are now worried about the future of the five children.

Mr Zakaria suffered a heart attack last month, his third in two years. But he is still holding a job, earning about $2,000 a month as a freelance surveyor. He gets about two assignments a week.

He moved from another block four years ago to be closer to Mr Rugiman and Mr Aziz.

When The New Paper met Mr Zakaria in his flat last Thursday, a day after he was discharged from a four-day stay at Changi General Hospital, he moved slowly and his hands shook frequently.

He said his hands have been like this since he had a hernia operation last year.

Mr Zakaria said he is financially stable. The flat is fully paid for and he has no problem paying the bills as long as he's working.

He said in a soft voice: "I cannot afford to retire. I have to continue to work to provide for my children.

"But now I am worried, I am old, how long more do I have? What will happen to my children if I kick the bucket?"

Helpful neighbours

The family home is spartan but clean, thanks to their helpful neighbours.

"The five children have their own little quirks and personalities," said Mr Rugiman, who is known as "An" to them. His wife, Madam Tuminah, is known as "Na".

"They are fans of Ramli Sarip (a Singaporean singer) and P. Ramlee (a famous Malaysian actor). They will sing along, though they are really just making sounds."

All five siblings have trouble expressing themselves with words. So they communicate with sign language and a few Malay words they know.

"Sometimes, they will dance along too. It's a joy to watch them," Mr Rugiman said with a hearty laugh.

When TNP visited the flat with Mr Rugiman on two afternoons, Ms Shahidah and two brothers, Mr Shariff, 52, and Mr Akbar, 51, greeted us enthusiastically, offering handshakes and cold drinks.

Time for professional help?

Time for professional help?

They hugged and kissed Mr Rugiman, despite just seeing him a few hours earlier when he brought them lunch his wife had cooked.

But on one afternoon, it was not all smiles and laughter. The eldest son, Mr Hassan, 55, walked in and out of the bathroom with just a towel on, shouting incoherently.

The fourth son, Mr Rijal, 47, was sulking because he also wanted to use the toilet.

Mr Rugiman thinks that it may be time for Mr Zakaria to get professional help for his children.

"Two of them, the eldest and the fourth, take turns to use the toilet, and they spend hours inside each time. I don't know what they are doing inside," he said.

"The eldest son and the daughter are also problematic. When their father was in the hospital, they kept screaming at night, disturbing the neighbours."

Mr Shariff, Mr Akbar and Mr Rijal attended a Movement for the Intellectually Disabled school, but stopped after it was moved from Tampines to Margaret Drive in the late 1980s.

Responding to TNP's queries, a Ministry of Community Development, Youth and Sports (MCYS) spokesman said that Mr Zakaria and his family had been referred to MCYS for assistance in January 2010 and July last year.

"Mr Zakaria had indicated to our staff he was being supported by his family and was able to manage," the spokesman said.

"Nevertheless, he was linked up with community support services and informed of help resources.'

The spokesman added: "NE CDC (North East Community Development Council), together with Tampines West grassroots and SBL (Singapore Buddhist Lodge) Vision Family Service Centre had visited MrZakaria on Monday and would be working with MCYS and relevant agencies to admit the mentally disabled children into homes."

Will

Mr Zakaria wrote a will six years ago, appointing Mr Aziz as executor of his estate.

"I thank God for them. I'm really grateful for their help. But they are getting old too, " he said. The Rugimans, who have three children and six grandchildren, are retired, and Mr Aziz, a bachelor, is able to visit the family in the morning as he works the night shift.

Mr Rugiman said: "I help them because I feel great sympathy towards them. Other people help by giving money. But I help by giving them my heart."

During TNP's second visit, Mr Zakaria and his friends were discussing plans for the children should anything happen to him.

Asked if he ever felt tired of taking care of the five children, the soft-spoken man shook his head and said: "No."

Was there any moment when he felt like giving up? Mr Zakaria shook his head again.

"Honestly, no," he said quietly. "They are all my children. Because of me, they came to this world."

It is hard to imagine the children's lives without him. Mr Zakaria said: "Before I leave the flat every day, Shahidah will remind me to buy her snacks. And she will also tell me, 'Please come back.'"

For more than 50 years, he has always returned home. He's worried that he might not be able to keep this promise for much longer.

Older mum, higher risk

DOWN syndrome is a genetic condition which occurs universally across race and gender in about one in 800 births, according to the Down Syndrome Association of Singapore (DSA).

Gynaecologist Christopher Ng said the most common cause of Down syndrome is related to the mother's age - the older the mother, the higher the risk.

"It is due to an error during cell division which results in an extra 21st chromosome that leads to Down syndrome," he said.

"But in this case, since all five children have Down syndrome, it could be the inherited form of Down syndrome, which is rarer.

Defective gene

"Although a person with the defective gene may appear physically normal, he or she has a greater risk of producing a child with an extra 21st chromosome."

The DSA said that early and accurate diagnosis with appropriate treatment and follow-up allows people with Down syndrome to live a healthy and longer life in the same manner as it would allow people without it.

The DSA offers services for both adults and children.

The Adult Enhancement Programme is targeted at persons with intellectual disabilities who have graduated from special schools at the age of 18.

It aims to help them become more independent and productive in life.

The Mental Capacity Act

Parents of intellectually disabled children can appoint caregivers to take over the role of looking after the children if the parents die or become mentally incapacitated.

These caregivers, to be known as "deputies", will have to be vetted by the court, under the Mental Capacity Act.

The Act, which took effect on March 1, 2010, aims to give Singaporeans a say over who will look after them if they lose their mind to dementia, illnesses oraccidents.

In both cases, the guardians will be allowed to make decisions concerning the day-to-day welfare, medical, money and property matters of their charges.

But guardians will be barred from taking decisions such as making or revoking a Central Provident Fund nomination, or an Advanced Medical Directive.

From April 1 last year to March 31 this year, there were 225 court orders appointing 344 deputies. Eleven per cent of these cases involved developmental psychiatric disorders.


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