KUCHING: As a lecturer, Ng Kui Choo had wanted to raise high-achieving children while pursuing her doctoral studies at the same time. She had drawn up grand plans for her three children as it was her ideal number.
However, a fourth child was born in 1998, and her whole world crumbled. The youngest daughter had Down syndrome, and all the well-laid plans went out the window.
“It was unplanned but when I found out that I was pregnant again, I was excited. We thought there is always room for another doctor, lawyer or engineer,” she recalled.
“The doctor didn’t mention anything. It was my husband who noticed the words “Down syndrome” in the baby’s file.” Later, a pediatrician confirmed that her youngest child had Down syndrome.
“We were stunned. I broke into tears,” she said. The doctor said the child would not be able to read, write or count. “I am a lecturer, who has educated so many children but I can’t teach my own child? That was what came into my mind at that time.”
This was over two decades ago, when people were not well-informed about Down syndrome.
Ng said she was in tears almost every day until a doctor suggested that she join a parent support group to get together with other families who have children with special needs.
Since then, she has been serving the Society for Parents of Children with Special Needs (Pibakat) as the secretary, working with the committee members to initiate programmes and activities to help and support such children and their families.
Apart from her day job, she spends a lot of time with Pibakat so as to make a difference to the lives of Down syndrome children and young adults.
It has been a long and tough journey but her daughter Tan Yii Ping was the reason she kept going.
For her, nothing is more rewarding than seeing the joy and hope on the faces of parents when their children make progress, such as saying their first word after undergoing the early intervention programme.
Social stigma and discrimination
Ng, a senior lecture with Universiti Teknologi Mara in Sarawak, said she has received her fair share of social stigma and discrimination for having a Down syndrome child.
“I used to be very defensive whenever people took a second look at my child. Now, I would tell them my child has Down syndrome and I am proud of her,” she said.
She said there were several incidents where some pregnant women would avoid getting close with her daughter although the syndrome is not a contagious disease.
“They would avoid making eye contact and say things like ‘don’t go near her’.
“My daughter was rejected by a local preschool. She was also not invited to a neighbour’s birthday while her elder siblings were asked to join.”
Ng’s daughter could not attend preschool until she was seven and was taken in by the special school of the Association for the Welfare of Intellectually Disabled Children (Perkata) where she studied for 10 years.
“It was sad. Some parents and their Down syndrome children are still experiencing such treatment. I believe inclusiveness is the key to breaking down barriers or reducing the stigma. “I hope children with special needs can be included in mainstream schools. We need to let them interact, learn and play with regularly-developing children,” she said.
Advice for parents with Down syndrome children
Her advice to other parents of Down syndrome children? They should not be overprotective.
“Don’t hide them. Feel proud of them and don’t cushion their falls as they are tougher than you think,” she added. “Let them fall and feel the pain. Let them learn from their mistakes. This is how we protect our children, not by keeping them at home or hiding them away, worried that people might hurt them.
“It is never going to be easy to raise a Down syndrome child, but you are not alone,” she said, adding that parents should not be reluctant to seek help and support.
Ng also said parents with Down syndrome children should not compare their babies to others. Instead, they should start listing their every little accomplishment.
She said her daughter only took her first step when she was four due to muscle weakness but that was a great milestone.
She admitted she too had lost her temper and yelled at her child for being slow. “There are times I forget that she is a child with special needs … it makes me feel like a failed mother despite trying my best. I feel guilty but we just have to move on.”
Feeling thankful that it was her
“Twenty-three years ago, I kept wondering why I had a Down syndrome child. Years later, I was thankful it was me.”
Ng said she wouldn’t have got to know all the wonderful people who had helped her along the way, and would not have understood the real meaning of success if not for her child.
“I might have even continued to view those with special needs with a warped pair of lenses. I didn’t get to do my PhD, but all these life lessons have had a greater impact,” she added.
She said two of her children are now doctors and one has become a lawyer and they all love their youngest sister. “I am grateful that a Down syndrome child came into my life. Everything is worthwhile,” she said.
World Down Syndrome Day on March 21 is a global awareness day has been observed by the United Nations since 2012. Down syndrom is caused by the triplication (trisomy) of the 21st chromosome in human beings, thus the choice of the date.