Hope, worry & sacrifice: S’porean parents share what it’s like to bring up a child with autism
Passers-by would stare disdainfully when their son had a public meltdown.
Trips to the shopping malls used to be a chore for seven-year-old Nabil Rifqi’s family.
Whenever they visited one, Nabil would break away from his family and begin to either run around aimlessly, wail, roll around the floor, or a combination of all three.
To defuse the situation as quickly as possible, his parents would coax him so he wouldn’t cause a bigger scene.
However, passers-by would still stare disdainfully, probably thinking he was just another naughty child.
But Nabil wasn’t acting out for attention or being mischievous.
What his parents didn’t know was that Nabil was experiencing an autism meltdown, as he had yet to be diagnosed then.
What is autism?
Autism spectrum disorder (ASD) is a lifelong developmental disability that affects a person’s ability to “make sense of the world and relate with others”.
Symptoms vary from person to person, but people on the spectrum can face social communication difficulties and/or restricted and repetitive behaviours such as:
- Making/maintaining eye contact
- Expressing emotions
- Expressing themselves non-verbally
- Fear of crowds
- Gauging personal space
- Ritualistic behaviours
- Extreme interests in specific topics
- Need for unvarying daily routine
- Resistance to change
Nabil’s parents, 37-year-old Nadzifah Zainal and 39-year-old Muhammad Hilmee, first noticed signs of ASD in Nabil when he was four years old.
He had delayed speech and displayed behaviours like avoiding eye contact.
His mother shared:
“We received some feedback from his preschool teachers and noticed that he gets very fidgety and does irregular things like knocking his head against the wall.”
“Why me? Why our family?”
As a pair of concerned parents, both of them brought Nabil to see a child psychologist and after describing his behaviour, he was diagnosed with ASD.
Upon hearing his diagnosis, Nadzifah had a cocktail of negative emotions.
“I was very sad and disappointed, I asked myself: Why me? Why our family?”
At that time, she was also reminded of a particular visit with her gynaecologist.
When Nadzifah was five months pregnant with Nabil, the water level in his head was higher than the normal range.
This also meant that the chances of Nabil being born with Down syndrome were higher.
“They asked us if we wanted to check if he had Down syndrome, and if he did, we had the choice to abort him.”
A month later, the water level in his head went back to normal, much to the family’s relief.
But this memory keeps popping up in her head.
“At the back of my mind, I keep wondering if this particular event could be the cause of him having autism.”
She is aware, however, that the cause of most autism cases cannot be identified.
The “shopping mall problem” was also solved when the psychologist recommended the family to bring him to spacious places like parks and playgrounds.
“We tried that and he just ran freely and happily and we had no worries because he wasn’t disturbing anyone. He just needed space, not crowds.”
After her visit to the child psychologist, Nabil was also recommended to start on the Early Intervention Programme for Infants & Children (EIPIC) as soon as possible.
EIPIC is a programme offered in several institutions in Singapore that provides therapy and educational support services for children who are six and below and have special needs.
The programme aims to overcome a child’s developmental delays to better prepare them for primary school.
While they were glad that there were avenues to help Nabil, this also served to be another obstacle for the family.
Father took a month of unpaid leave
Getting into an early intervention programme meant that the family had to make certain sacrifices.
For one, Nabil’s EIPIC centre required a caregiver to be with the child at all times.
Because of this, Nadzifah had to quit her job as a dental nurse to become a stay-at-home-mother.
Financially, it wasn’t an easy decision for the family as they had to transition from living comfortably with two incomes and now, to survive on just one.
And it was especially difficult for her to leave her career of 17 years as it was a job that she was truly passionate about.
“I love my job but I love my son more, so I had to make this career switch. I also put my hats off to other stay-at-home-mothers out there, it’s a tough job.”
But she wasn’t the only one who made sacrifices.
As she was serving her notice, Hilmee also took a month of unpaid leave so he could follow Nabil for his early intervention sessions.
“The Nabil you see today is different”
The sacrifices made seems to be worth the while as the parents think it has been the “greatest” decision to put Nabil through EIPIC.
After going through the programme, Nabil has learnt to express himself and can start a conversation with others.
Hoewever, Nadzifah also stressed that she knows that any form of early intervention or therapy won’t get rid of his autism, because there is no known cure for it.
For the family, as long as Nabil can improve on himself, that is enough of a milestone.
“The Nabil you see today is different from a few years back. It may seem like a small step, but we can go to shopping centres again, which is a big improvement for all of us.”
While his condition has improved, Nabil still has his meltdowns from time to time.
And when that happens, people tend to stare, which used to make the family more conscious of how he behaved.
But the family is more composed now, because they now know how to alleviate his meltdowns and at the very least, it gives them a chance to educate others about ASD.
“People should mingle with special needs parents and find out what it is like to walk in our shoes.”
The hardest comments to take in, however, comes from their own family.
The family were invited to an outdoor family gathering and as parents of a child on the spectrum, they have their own routine to care for Nabil.
“We know how our children behave, so my husband and I will take turns to eat while the other keeps an eye on Nabil.”
However, during the family gathering, some of the extended family members volunteered to take care of Nabil so his parents could relax for a bit.
While in the care of others, Nabil ran across the main road and stopped right in front of an oncoming taxi.
In the end, the parents had to bear the brunt of their relatives’ comments.
“They said things like: ‘Why don’t you get him a toddler leash? He looks normal what. Why can’t you control your children?’ If that came from an outsider, it’s fine because they don’t know and we can educate them. But it came from family whom I thought knew of his condition, so it was very hurtful.”
Family keeps her sane
However, her loved ones remain to be of utmost importance, as they also happen to be her support system.
One of them, of course, is her husband:
“My husband, he’s the most optimistic and steady person. I tend to overthink but he will always remind me to chill and to take things one step at a time.”
And then there’s her family on her mother’s side, who has always been involved in her children’s upbringing.
“My aunt’s family have always been there for me. Apart from helping me to fetch Nabil home from school and taking care of him while I’m away, my aunt has also given me words of encouragement to keep me going. They are blessed to have these great relatives.”
Acceptance is everything
Nadzifah used to worry for Nabil in the event where she and her husband are no longer around.
Fortunately, her concerns were allayed when Nabil enrolled into Pathlight School, an autism-focused school that teaches mainstream academic curriculum as well as life readiness skills.
“His school teaches him all the basics and daily life skills, so I don’t have to worry as much.”
But she still doesn’t know how society is going to treat him.
“Autism awareness is already there, so now is the time for people to get to know them and accept their differences. They’re not as “mischievous” or “weird” as what people make them to be.”
And she hopes her personal motto would help other parents who are also raising children on the spectrum.
“I keep these three values close to my heart: patience, acceptance and acknowledging that everything happens for a reason.”
Top image courtesy of Nadzifah Zainal