disability should be embrace

What It Means To Be A Parent Of A Special Needs Child

I am a mother of three daughters. Raising a child is a challenge, be it boys or girls. In 2003, God gave me this challenge a hundred-fold when I became pregnant with my second daughter Emma-Noelle. This will be the first of many parts on raising Emma.

In 2003, a total of 132,655 persons with disability1 were registered in Malaysia. 8,670 persons with disability were in Sarawak, the state where I live. They are categorically identified according to their special needs such as physical, cognitive or life-threatening illness. Of the 132,655 individuals, 57, 483 were categorized under the ‘learning disability’.

My 14- year old Emma-Noelle was one of those 57,483.

Emma was born with a third copy of the chromosome 21. A genetic disorder that the medical world now confirmed to happen by chance, her disorder is medically identified as Trisomy 21. Or to many, it is known as Down Syndrome.

Emma was identified to have a genetic disorder during gestation. At 8-weeks’ gestation, the gynecologist I was seeing detected something unusual in her ultrasound. Both her father and I were in our 30s. She was our second child.

All the things you had probably read on having a child born with DS – older parents etc, seems to be inaccurate. We were both stunned. How could we not?

Within minutes of diagnosing her (using the ultrasound machine), the gynecologist suggested that I terminate my pregnancy. He spoke of it so casually, as though it was an everyday occurrence. I was in shock. More by his attitude than the discovery.

That afternoon I walked out of his office and never came back.

Because of her genetic disorder, Emma’s facial features is prominently different compared to her sisters’. But living in a multi-racial community as Malaysia is, her facial differences – slanty eyes, small mouth – is not noticeable to those who do not know her.

Character-wise, Emma is the most loving and giving person I know.

Mentally, Emma is considered mild or high functioning Down Syndrome. That means she can do what you and I can, albeit needing more practice and much patience from people like you and me.

Raising a child with any disorder or special needs is both a blessing and a challenge. A challenge because of the obvious.

Like, at the age of 2-years, her paediatrician recommended an MRI heart scan. Why? Because her genetic disorder is notorious for hole-in-the-heart. With numerous hospital stays during those 24-months of her life, I took it as one of the many challenges to come.

Thankfully, Emma was confirmed to be free of the heart problem.

But raising her is also a blessing. I had never known joy until I see Emma overcome challenges that many of her peers may take for granted. Things like, getting up and walk. At 2, Emma was still scooting around on her butt. And when she do try to get on her feet, we would be on guard for fear she would fall over due to the weak muscles in her legs.

There is a saying that goes “God don’t give you challenges unless He know you can handle it.”

When we became aware of Emma’s disorder, I told myself I will take up God’s challenge and give her as normal a life as her elder sister’s.

So from the very beginning, I sought assistance and spoke openly of my special needs child.

When Emma was born, I visited PIBAKAT (Organization for Parents with Special Children). The wonderful staff of this NGO helped me in getting Emma registered with the welfare department, in setting up Emma’s monthly medical check-up at the Kuching General Hospital and in accepting her into their early intervention program.

I was also fortunate to know of Tadika Sang Kancil. Where I had negative responses to Emma’s after-school care, the teachers of Tadika sang Kancil Batu Lintang branch were welcoming and accepting.

At age seven, the age when children should be getting formal education, I enrolled Emma into PERKATA (Association for the Welfare of Intellectually Disabled Children) Special School, a school were individuals with disability are taught life skills as well as academic knowledge.

Emma still attends PERKATA now. And she loves it there.

Through PERKATA and with the patience, love and guidance of her teachers, she learnt the alphabets and numerals, learnt how to spell her name, spell ‘mommy’, ‘daddy’ and other simple words.

Because of her high functioning disability (ironic I know but how else can I describe it?), Emma regularly accompanies her teacher to the supermarket to purchase groceries for their cooking class.

She is also assigned as the main person to deliver notes, exercises and books from the classroom to the office. And now that she is older, she is being taught gardening.

Having Emma has changed my life.

It taught me that having a special needs child means diminishing any perception I have on how it is to raise a child. And that something else should be the main thing to make it a success. Both for parents and society.

And that something is love and understanding.

So I may have it tough these 14 years, but in so many ways also, I am constantly aware of the blessings that comes my way.

1Social Welfare Dept, Malaysia/Registration of People with Special Needs according to States 2002-2007


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