Last Hour

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In New Horizons, with the 'aunties'

Me: I think I'm about to experience what you all feel as a working mother.
Aunties: (Start telling me how they rush to juggle between work and housework)
Me: Let me go slow, ok?


While I was jotting down the list of household chores

Cousin: Wah! You need to jot down what to do?
Mum: That's because she has never had that kind of responsibilty before.

Cousin: No need to sweep the floor everyday. Just 2 or 3 times a week.
Me: Haha. For mummy, it's likely to be 2 to 3 times a day.


When my brother was taking breaks in between watering plants

Brother: (Sighing underneath the fan) Why mummy got so many plants?


SMS received in response to my previous blog

Friend: Home alone eh? Wife training course perhaps.
Me: I'll remember to mention this course the next time I want to market myself.

Home Alone....With My Brother

Secret Shame

A friend highlighted to me an article in the STAR today. In his own words, it is "very touching and true of life". When someone highlight something to me, it's usually about special people. I flipped to the page. As usual, I'm right.

Stories For My Mother is one of my favourite columns for it touches many life issues. Today, it's not any different. The writer has pointed out an issue that might not be familiar to us, but very real in every sense.

An aunt whispered : "Your brother has a hole in the heart and there is something wrong with his brain. Don't tell anyone! The doctor said he is this way because your mother had taken some medicine for skin rashes while she was pregnant."

Another said : "Your mother had done something wrong in her past life, so she is punished with a bad baby." In their eyes, my father was merely a side observer in Noo-Noo's birth.

Noo-Noo brought shame on the family, especially the elders. I felt ashamed too because I was his sister. My motehr was even more ashamed because she was his mother. And that was how it worked in the 1960s and 1970s in Ipoh.

It is not only the 1960s and 197os. The stigma still exists today. In case you are wondering what's wrong with Noo-Noo, he was a Down syndrome child.

I had participated in conducting a survey of parents' awareness of their children's disability 3 years ago. From this, I had found some shocking revelation, not different from what the writer has related in this article. A mother with a Down syndrome told me that she believed it was something she has done in her past life that caused her to give birth to such a child. I heard that another mother was blamed for her 'bad eggs' by her mother-in-law. This sounds like a plot you would get in a Chinese costume drama.

The similarity in both cases with the article is that the father remained the silent observer. Women were blamed when they could not give birth to male babies during times when people had no knowledge that it's men who contribute the Y chromosome. This stigma has since been removed. But it's not the case with special babies. Mothers are blamed with the extra chromosone. I'm not saying that fathers are responsible for this. Neither parents are to be blamed. True, it is congenital, related to genetics. It is also an accident of nature. The initial reaction is to find what causes this. It is not brain injury. It is not caused by taking certain medicines during pregnancy. Most importantly, it is not the caused by either parents.

In the late afternoon, my younger brother would play badminton, fly kites or play tops with other boys in the neighbourhood. Other girls sometimes joined them or stood by to cheer the winners.

But not me. I had to carry Noo-Noo on my hip and watched from behind the curtain in the living room because no one should know about Noo-Noo.

It is estimated that there are 29 403 people with Down syndrome in Malaysia. How many have you seen? Where are they? Perhaps their families have the same thought as the writer - no one should know.

My parents sent him to a Down syndrome's school miles away from our home for several weeks. During one visit, they saw the caretakers beating the children for peeing, and splashing bath water on them as if they were washing dogs on the street. "So we took him home", my mother wrote.

The situation now may not be as grim as this. However, I did visit a place where they take care of adults with mental retardation, 3 years ago. I saw with my very own eyes how these people were chained to chairs. I passed by a room with a boy locked in it. The room smelled of urine stench. The caretakers' justification for this was, "We are understaffed." There were 3 staff taking care of more than 20 adults. Some of them had to be chained for they had a history of running amok. Before we pass judgment on the caretakers, let us ponder about where else these people can go. Their parents have passed their responsibility to these caretakers; most not caring to come and visit their children. I don't agree with the way but did the community do anything to change this?

Currently, there are no government schools in Malaysia which offer special education. These children will have to enrol themselves in an inclusive school (normal school where there is a section for special education). Early intervention programme (for children 0-6 years old) is only available in a section of the school for the hearing impaired. Usually, the teachers teach whatever they like to. There is no specific syllabus or curriculum. No wonder, the government acknowledged that NGOs are taking the lead in special education.

There is a law that makes compulsory every child with mental disability to receive education. I repeat; there is a law, with no enforcement. Many children are still not attending schools. There can be a few reasons for this, namely:
1) Lack of enforcement
2) The school is is too far away
3) Believes that special children can't learn anyway

Years later, I came home to find that Noo-Noo's mind had deteriorated. He lay on the sofa and stared at the ceiling all day long due to the lack of interaction.

During my absence, he was left at home alone when my family went to work and to school. Everyone was too busy to interact with him when they came home.

Everyone, whether they have mental disability or not, needs stimulation of the mind. Without stimulation, a person's mind would deteriorate. Families usually withdraw interaction since these people are slow in learning and have limited vocabulary. This situation is not helping especially when people Down syndrome inevitably develope Alzheimer's disease after the age of 35.

In my clinical settings, I have also come across many parents who "throw" their children to the professionals or go shopping for professionals. What's the difference? The former depends on the professionals to do something with their children. The latter changes from one professional to another when they don't see any improvement.

The similarities? Both do not do anything with their children. The best therapist for these children are not the professionals, but the parents themselves. Professionals are there to guide and advise but parents are the best language fascilitators. This is because children respond best to their parents. Children with the most incredibile improvement are those with parents who spend a lot of time with them. This might mean that one of the parents have stay home full time - quitting their job. This is a tough choice. How many are willing to make such sacrifice? Few but the result will be most rewarding.

This article does not provoke new issues, but I am glad that they have come into public light. I believe awareness and education is the first step to correction.