Loving and living with a child with Down Syndrome

 

Eddy and Evangelyn are sharing their personal story in conjunction with World Down Syndrome Day yesterday. (Eddy Aziz & Evangelyn Willibrord pic)

KUALA LUMPUR: It’s the school holidays, and the two children have been awake since 8am. They are sitting on the living room floor, playing with various toys.

“Elias! What colour is this?” the girl asks the boy, pointing at the yellow part of a squiggly toy.

The boy does not respond immediately. Intead, he stares at the toy until prompted by their mother, who gives him a hint.

When he finally says “yellow”, the girl claps her hands in excitement and exclaims: “Good job, Elias!”

This is the endearing dynamic between nine-year-old Elisha and her five-year-old brother, who has Down Syndrome. The chromosomal disorder – which affects a person’s physical features, intellect, and physical development – occurs in approximately one of 700 pregnancies.

Their parents, Evangelyn Willibrord and Eddy Aziz, shared that Elisha had been unaware of her brother’s condition until recently.

“It was very easy for us to explain and tell her the difference [between herself and her brother]. And she doesn’t mind it,” Willibrord, 48, told FMT.

She said Elisha exhibits maturity far beyond her age. “She loves being his teacher [and is] always playing with him. For every little thing he achieves, she is his cheerleader.”

Elisha also enjoys sharing stories about her brother with fellow classmates at school. “She tells her friends about it. Like, ‘I have a Down Syndrome brother. He likes to do this and that’.”

Elisha and Elias have a strong relationship despite his requiring more attention owing to his condition. (Eddy Aziz & Evangelyn Willibrord pic)

According to consultant developmental paediatrician Dr Rajini Sarvananthan, positive sibling relationships can be helpful in the development of a child with Down Syndrome.

“Their self-esteem is higher, so they are also more likely to perform better in all aspects of daily life,” she told FMT.

A pair of siblings, she said, can be good role models to each other, which may in turn lead to increased empathy, positive social behaviour, and improved emotional regulation in both.

“Children learn a lot from watching each other, and if a child with Down Syndrome has brothers or sisters, there are more opportunities for him or her to observe and imitate [learning skills].”

Playing together can also enhance cognitive, motor, and social communication ability.

“We often see how siblings can make therapy interventions fun, and involving their Down Syndrome sibling motivates them to perform those skills,” Rajini added.

Independence days

Although adulthood for Elias is a far way off, his parents are hopeful he will be able to gain some level of independence before then.

For example, they would like for him to be able to go to work and return home safely without causing any undue stress to his sister.

For Eddy, raising Elias has taught him how to be humble and grateful. (Eddy Aziz & Evangelyn Willibrord pic)

“We’re grateful [she] is so supportive, and in fact, more protective than us,” Eddy said. “We’re lucky to have her understanding.

“But we don’t want to burden Elisha with taking care of him [when we’re no longer around]. She needs her own life, too.”

For that reason, the couple has been trying to expose Elias as much as possible to the outside world by taking him to the nearby gymnasium where he can interact with other children.

“The gymnasts there make him flip and hang around. [Doing all that] gives him some self-confidence as well as the opportunity to mingle with other children,” Eddy said, adding that there is no difference between Elias and his playmates as they carry out the same activities.

Life lessons

While the last five years of raising Elias have been emotionally and physically difficult, Willibrord said it has taught her and her husband plenty of life lessons.

“Initially, you’re just running around for your own personal goals, for more wealth and prosperity, but [raising Elias] has actually let you see what life is all about,” she said in reflection.

This journey has made them more humble and grateful, especially since Elias was born prematurely and later required surgery after a hole in his heart was discovered when he was a year old.

“Sometimes you just need to take a step back and smell the roses. Elias taught us that.”

All Mum and Dad hope is for little Elias to have a happy and independent life as an adult. (Eddy Aziz & Evangelyn Willibrord pic)

Finally, Willibrord has some words of wisdom she wishes to impart to both new and long-time parents of a Down Syndrome child.

“If you are overwhelmed by all the doctor’s appointments, the therapy sessions, the constant mean things being said by other people… just know that it will all go away,” she said.

“You should always be proud of what you have achieved, and all the little milestones your child has achieved, too. Celebrate it all.” - FMT