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Mum of disabled girl sought help after turning violent
Sat, Nov 27, 2010
The New Paper

By Amanda Yong

HER daughter, suffering from spinal muscular dystrophy, was not paying attention despite her efforts to teach her.

Already emotionally brittle at that time, Madam Vanessa Goh, 43, got increasingly infuriated about having to care for her little girl.

The homemaker became so angry that she slapped her daughter with the book she had been writing in.

"When I saw the pencil marks on her face, I realised I had gone too far," she said.

"It was a wake-up call for me. I felt so bad. It was such a monstrous act."

She added: "Seeing my daughter defenceless and crying, it dawned on me that something was not right and I started asking myself what had become of me."

Sought help

That incident, which happened a few years ago, led Madam Goh to seek professional help.

She called helplines to speak to counsellors and saw a psychiatrist who diagnosed her as suffering from depression.

With medication and learning how to safeguard her emotional health, she has since come out of that dark period of her life when stress, anxiety and an intense feeling of loneliness plunged her into a deep abyss.

But life with a special needs child is still not easy, she said. Especially not when you are the sole caregiver and a full-time one.

Madam Goh's daughter, Sharmaine, who is now 11, has a disease that affects the motor neurons of her spinal cord and brain stem, leading to weakness and inability to use her muscles.

She is wheelchair-bound as she is unable to walk or even crawl. She also needs help for simple tasks like feeding herself and changing clothes and her diapers as her arms are weak.

While Sharmaine has never been tested, Madam Goh believes her child has low IQ as her maturity level appears lower than that of an average child of the same age.

"She's still stuck on Barney (the dinosaur) when other children her age are into Hannah Montana," Madam Goh said.

"Sometimes, when you ask her something, she'll reply with something else... whatever's on her mind."

Sharmaine went to a special needs school until 2006 when she had to undergo a tracheostomy, in which a tube is surgically inserted through an opening made in her neck.

The weak muscles in her chest cavity meant that she could not cough out phlegm, which accumulated to the extent that she could not breathe.

Since the operation, Sharmaine has required the use of a breathing aid, a machine that she has to take along with her wherever she goes, Madam Goh said.

It was also at that time that Madam Goh quit her customer service job to care for her child full-time.

Her husband, 45, is a salesman, and Sharmaine is their only child.

While Madam Goh never went through any formal training to learn how to care for a special needs child, she picked up tips from the teachers at Sharmaine's school.

"For example, the teachers would advise which foods are more suitable for her and which are not, what to do if she chokes, and what gadgets can help," she said.

Would training have helped her?

Yes, Madam Goh says.

Targeted training

"But only if the training is targeted specifically for parents of children with that particular special need, in our case, it's spinal muscular dystrophy," she said.

At that time, she also received emotional and mental support from parents of other students whom she met at her daughter's school.

But even now, there are still times when the daily stresses of caring for her child drives her near the edge.

"It's a 24-7, 365-day kind of job and it can be very lonely. People don't understand unless they're in that position and because I'm the mother, they expect it of me," she said.

Madam Goh has never considered hiring a maid to care for her child even though it would free her to work and would be financially more prudent for the family.

"I don't know how much time I have with her so I want to treasure it," she said.

"I also don't know if someone else will know what to do in an emergency and I can't blame them if they don't... I cannot live with that kind of regret."

She added: "I don't know if I'm the best person to take care of Sharmaine, but I know I love her the most."

 

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