National football captain Hariss Harun and his wife, Syahirah Mohamad, said their parenting journey has been one of trial and error. - ST
SINGAPORE: Eleven-year-old Naufal was splashing about with his younger sister Nadine in their condominium pool, occasionally mimicking the Merlion by spouting water out of his mouth.
A woman, an unfamiliar face, then approached him and told him off. Naufal responded by splashing water at her.
Pulling her brother aside, Nadine, nine, explained to the woman that her brother is autistic, but was met with a terse response: “It doesn’t matter; he shouldn’t be doing that.”
In tears, she headed back home and recounted the incident to their father, national football captain Hariss Harun.
The 34-year-old player posted a video about the Feb 4 incident on Instagram later that day, urging the public to have more empathy for those with autism.
In the video, he said that after apologising to the woman, he told her that he tries his best to inculcate good values and etiquette in Naufal, but at times, this is more difficult for children with special needs.
Nonetheless, he added: “My son deserves to be out there; it is a free world. It is no different for him.
“That is why I am sharing this – to raise awareness for those with special needs. This world is equally theirs as it is ours.”
‘Trial and error’
Situations like the one Hariss shared are one of the biggest fears of parents with special needs children, said Chris Lim, who has two boys with autism.
He recalled a recent incident during the school holidays in March when his younger son Gabriel, 12, went to a mall with his friends.
Gabriel was playing with a ball at a shop when it bounced out the door, setting off alarms. “He freaked out and totally panicked. He wasn’t sure what to do. He cried, he called me right after and I immediately rushed over,” said Lim, 43.
“As a parent with a child with special needs, when instances like this happen, it really scares you,” said the art director at a digital agency.
The journey of raising children on the autism spectrum is one of “trial and error”, Hariss and his wife, Syahirah Mohamad, and Lim told The Straits Times in separate interviews.
For every new phase Naufal enters, his parents have to teach him a new set of skills, like how to socialise with his peers at school.
Naufal will soon be going through puberty, which Syahirah thinks would be the toughest phase to get through.
“He has sensory needs; sometimes he doesn’t like to wear his shirt to bed because he’s sensitive to fabric. What if he’s affected by sweating or having body odour? What if he wants to keep taking showers again and again?”
They will just have to go back to the drawing board to find out what suits him, said Hariss.
Lim and his wife took about a year to prepare their sons to venture out of their home by themselves when they were about 10 years old. This involved taking the boys out to perform day-to-day tasks such as buying groceries, ordering food and taking public transport.
The couple taught the boys by repeating the bus routes and tasks several times, and used notes and cards to help them internalise better. Lastly, the boys were always reminded to phone home if things went awry, such as if they missed their bus stop.
They then loosened the reins and let the boys go about independently while they shadowed them at a distance. When they finally felt comfortable, they allowed their older son, Clarence, now 14, to go out alone when he was 12.
“The younger one then said, ‘Kor kor can, so why can’t I?’ But the first time he went out with his friends, it turned out like this,” said Lim, referring to the incident at the mall.
“Special needs caregiving is a bit of a minefield,” he said. “You try different things; some things work, some things don’t.
“But that’s fine, because as parents, when we can, we let them go and when they need us, we just reassure them, ‘I’m just around the corner. It’s okay’.”
‘A marathon, not a sprint’
“Why me? Why us?” These questions no longer creep up on Hariss and Syahirah as frequently as before.
Now, an emphatic declaration – “I love someone with autism” – is on Syahirah’s Instagram bio. On the platform, she invites questions on parenting and receives a constant barrage of them from fretful parents in return.
“A lot of them are in the (early) stage of denial. They hope that I’ll reply with answers that they want to hear,” she said. “I’ve gone through that – at the time when I wanted to believe that my son is normal.”
To Syahirah, Naufal is shy, loving and a foodie who would make a stellar food blogger, but she knows he is different.
“I have now accepted that the world will always seem odd to him, and he will always seem odd to the world,” she said. “Now, my main focus is to help him thrive while being unique and being his own person.
“When parenting most children, you need to let them fly. But for kids with special needs, you have to stand up for them and be their voice,” she said.
Lim knows the early stages of denial all too well. When he learnt that his sons were autistic, he struggled to accept their diagnosis and blamed himself for it, he said.
“There was a lot of unforgiving and that stopped me from moving forward for a couple of months.”
He now works on a part-time basis at CaringSG, a non-profit organisation that supports caregivers of those with special needs, as the charity’s IT and communications manager.
While pouring his energy into caring for his sons, he learnt that he needed to care for himself, too.
“I always tell myself that as a caregiver, I am with my children for life,” he said. “At the end of the day, I know that they will need me, so I need to take care of myself as I take care of them.
“It’s very important to know that it’s more of a marathon than a sprint, and you have to pace yourself and not burn yourself out over this journey.”
The vision: A society with awareness and empathy
While the majority of the public are understanding, Ms Syahirah noted that the occasional unpleasant run-in with strangers does occur.
She recalled an incident when Naufal repeatedly touched a bicycle that belonged to a young neighbour in their previous condominium.
“He likes to touch things he likes,” she said.
The girl complained to her father, who scolded Naufal. But Naufal, instead of getting scared or running away, continued to touch the bicycle. The girl’s dad then shouted at him, and Ms Syahirah had to race over to deal with the situation.
“I apologised and said my son is a special needs child, but he shouted at me and said, ‘I don’t care! Just teach him some manners’.”
The situation was all too familiar for Denise Phua, Mayor of Central Singapore District and president of the Autism Resource Centre (Singapore). Her son, Tay Jun-Yi, 30, is also autistic.
Phua recalled that he was physically abused by his Chinese teacher when he was four years old as she felt he was “unresponsive” during classes.
In a separate incident, a tall and burly man pushed Tay, who was young at the time and unable to speak, to the floor when he thought the boy was disturbing his dog.
“I think he was not aware nor was he interested... His father and I went home distraught and sad,” Phua said of that episode.
“Jun-Yi is now a big and strong young man and is better able to defend himself,” she added. “But the memories remain even after more than two decades.”
Phua, an MP for Jalan Besar GRC, said she envisions a society where every individual, regardless of ability, is respected, valued and empowered to reach their potential.
This society also embraces inclusivity and empathy, and recognises the right of everyone to have social relationships and community spaces, she added.
Referring to the confrontation between Naufal and the neighbour, she said: “In situations like these, do not be too quick to judge. Do not assume that a child’s behaviour is a result of poor parenting or a lack of discipline – it could be due to the child being different and may not be within their control.
“Show empathy to both the child and the caregiver, and as an extra step, show interest to find out more about others who may be neurodiverse and different.”
Hariss, whose exploits on a football field are well documented but who has remained largely guarded about his family life, said he decided to put out the video because he wanted to educate people.
“I just wanted everyone to be more understanding, and society to be more empathetic and inclusive,” he told ST.
“Whether you have a family member or friend with special needs, we can all always look out for one another.” - The Straits Times/ANN
