Tutong parents ask for help to meet simple needs of a special girl

Nadathul smiles for the camera. The girl, suffering from autism, had stopped going to school since last year as she had been getting seizures. Picture: BT/Yusri Adanan
Eleven-year-old Nadathul Umur tries to reach for the lens of the camera when The Brunei Times
visited her family's house in Tanjong Maya, Tutong on Friday. Pictures: BT/ Yusri Adanan

Rachel Thien

TUTONG

Monday, November 8, 2010

AT first glance, pretty-faced Nadathul Umur is like any other 11-year-old girl, bubbly and with a smile on her face as if she doesn't have a care in the world.

But Nadathul is not your ordinary 11-year-old, she does not go to school as she is a special child afflicted with "high stage of autism". She cannot speak and cannot even take care of herself.

Despite her disorder, the young girl can count herself lucky as she is surrounded by a loving family.

Nadathul's mother, 43-year-old Lina Tangah, who is a full-time housewife, spends her days taking care of her autistic daughter.

Lina told The Brunei Times that Nadathul could only murmur and make sounds. "We do not know when she wants to eat or when she needs to go to the toilet. That's why she has to wear around two to three disposable diapers a day."

The family is not well-off but always make sure that Nadathul's needs are met, particularly her supplies of disposable adult diapers.

Life is not a walk in the park for Lina and her husband Osman Hj Sabli Umur, 48.

Lina said her family of six has been surviving on her husband's monthly $850 pension from the Royal Brunei Armed Forces for the past year, until recently.

"My husband was without a job for more than a year, but he recently managed to get a part-time job in Belait, where he is earning about $400 a month," she said, adding they had to depend on their parents for extra financial support before he got his part-time job.

However, when her husband receives his pension at the beginning of the month, Lina said they had to pay $375 for their monthly car loan, about $100 for electricity and water bills, $90 for three of their children's school allowance, $200 for petrol and the rest on food.

To make ends meet, "we limit how much food we buy with the remaining money because our daughter (Nadathul)'s priorities and needs come first. We have to buy her Milo, soya bean because these are her favourite drinks and three boxes of pampers," she explained.

Lina said they currently spend about $50 a month on buying Nadathul's diapers.

"All of my daughter's needs are my family's priority, so my husband works hard for it. Although it is hard for us, we prioritise her needs. Sometimes, we have to sacrifice the needs and wants of our other three children, such as clothes."

She added, "Sometimes we even have to limit the number of fish we buy for our household, because we have to take care of Nadathul's needs."

Lina said her other three children, 15, 16 and 18 years of age, were "understanding towards their financial situation", and their sister's condition and did not ask for things from her and her husband.

"When they know we do not have enough money, they will not ask us," she said.

When The Brunei Times visited their residence yesterday, Nadathul was full of smiles but did not speak a word. Only a few sounds were uttered when she got excited that visitors were present.

The mother of four said she would be grateful if a special needs education teacher could come over to their house to educate Nadathul on a daily basis for an hour or two.

Nadathul used to attend the Binturan Primary School, however, her mother said she had stopped going since last year as she had been getting seizures and disliked being at school.

Since then, the family would try and send her to Kaca twice a week, but even taking her there was a struggle.

She explained she would love for her daughter to go to the Society for the Management of Autism Related Issues in Training, Education and Resources (Smarter) Centre, but they did not have transportation to send Nadathul as they only had one car which her husband uses to commute to work.

"If someone is willing to come here and send Nadathul to Smarter, then that will also be great," she said.

"Of course I want my daughter to go to school, but it is difficult because she does not want to go anymore. Every parent wants the best for their child, and I want Nadathul to be independent and take care of herself one day. Without education, how can she take care of herself?" Lina added.

Lina hoped the public could ease their burden by helping to purchase diapers and her favourite drinks for Nadathul. "All we want is help from anyone to buy our daughter's needs. We are not forcing anyone, but if the help comes in, then it will be great."

"Sometimes, the Tutong hospital gives us disposable diapers once a month, or once in three months. I am thankful to the hospital, alhamdullilah, even though we do not receive it consistently," she said. The family of six stay in a bungalow in Tanjong Maya, Tutong.

courtesy of---The Brunei Times