Any parent knows plane rides can be a source of anxiety when travelling with children, let alone a dreaded delayed flight.
Politician Khairy Jamaluddin and entrepreneur Nori Abdullah’s flight back from a recent family holiday in Japan saw them stuck in a plane on the tarmac, for four hours. They had their three children with them, and one of them, Timor Abdullah, is autistic. This delay could have proved a problem.
“After an hour in the plane, the air conditioning shuts off. For anybody, not just an autistic kid, it’s uncomfortable. All cramped up in the middle seat. Everyone was panas (hot), and he started ‘stimming’,” Khairy shared.
Stimming is short for ‘self-stimulatory behaviour’, and in a person with autism, stimming usually refers to behaviours that may include hand-flapping, rocking, or the repetition of words and phrases.
When Timor starts stimming, he says ‘Go to the V van, go to bunk bed’ repeatedly.
“The van is my sister’s (Toyota) Alphard, and the bunk bed is where he sleeps. That’s him regulating himself,” he explained.
Others may not understand or feel comfortable seeing someone stimming. For Khairy and Nori however, they look back at that plane experience and Timor’s behaviour with a sense of pride.
“We were so proud of him. There were no meltdowns,” he said.
We knew he was different
Speaking to makchic about parenthood and their journey with Timor, Khairy and Nori said their secondborn taught them a lot about empathy and looking at the world in a different way, through his eyes.
They first suspected Timor was different from other children when he appeared to regress into his own world. Social interaction was a challenge. During his third birthday party, they realised he wanted to play on one slide, and nothing else.
When he was diagnosed as autistic, the pair went through different levels of acceptance. As both their families had members with special needs, Khairy and Nori said they were used to diversity. Khairy’s sister Hana Jamaluddin has a daughter with Down’s syndrome, Aisha.
“We are fortunate that both sides of the family had no issues with denial. We already had a special child, which is a blessing. There’s so much diversity in the family. It’s just that acceptance of all it meant took a while to sink in. In fact, before the official diagnosis we did take him to see a speech therapist first,” Nori said.
Learning a different world
Nori and Khairy read up about autism and decided on an approach for Timor but admitted that this changed as they learned more with time.
“At first, we went with the traditional method – Applied Behavioral Analysis – which is essentially rote. You teach them to behave in a certain way, and to conform to the world. And then we discovered a new world with (author) Barry Prizant, a world where we need to change for them,” Khairy said.
Prizant’s much-lauded book ‘Uniquely Human: A Different Way of Seeing Autism’ gives plenty of advice and details about successful approaches to autism – he offers that these approaches do not aim at ‘fixing’ a person by eliminating symptoms. People should instead, seek to understand the individual’s experience and what is going on behind the behaviour.
The book changed everything for Khairy and Nori.
“It’s all about empathy, trying to understand the world through their perspective,” he said.
Nori said she felt the book’s message about awareness and understanding was so important that she bought many copies to pass them around.
“I don’t think that enough of us share significant things, in a world where many of us certainly over-share the simplest of things that don’t necessarily make any kind of impact. It’s important to share, and I think that’s what led to Khairy deciding to talk about the book publicly and Timor more often.”
When Timor had started stimming on the plane, for example, it was a self-regulating move to calm down.
“Barry makes us understand that what he is doing is no different than us having an internal dialogue to calm yourself. Even for me, as a politician, having to speak in front of so many people for so many years still makes me feel nervous. And I calm myself down,” Khairy said.
“The only difference is I don’t say it out loud and I don’t flail my arms. But it’s the same thing. He doesn’t have that control to calm himself down. So we need to help comfort him, instead of asking him to stop.”
Motherhood
Nori said the biggest challenge so far in being a mum was trying to do her best for the family, for all the children. She also said accepting that she has a child with inherent differences that may have life long special needs, didn’t happen immediately.
“I had initially thought that if I did this or that, there was a clear way to manage autism. And then it took a while to get to be the point that … this is what it might be like forever. There is a way to get the best out of him, but you probably never have to stop doing those things.”
At night, she prepares a visual schedule for Timor for the next day, a sheet with pictures. If she does not do it, he gets antsy. He also needs structure and routine for his days, unlike other children who may like to ‘do nothing’ on some free and easy days.
Nori and Khairy also discovered that surprises are not great at all, such as celebrating his birthday at a place he already liked. “But because we turned it into a birthday celebration, he was like ‘What are you doing to my horse-riding therapy place, this is not what it is about!’” she said.
Small steps
But with the challenges come the sweetness, and there have been many special memories with Timor. Khairy remembers the time he finally managed to cycle on two wheels – “Small steps are giant leaps for him.”
As he is hyperlexic, which means he has an obsession for alphabets and letters, Timor also taught himself how to read when he was very young. Nori said he may not comprehend what he is reading, but since he figured out phonics, he loves to make shapes of letters that are precise and detailed.
“He did this big word like ‘Wilayah Persekutuan’ and ‘Sayangi Kuala Lumpur,” she said with pride.
“And you open his Minecraft and he has built something so detailed, even something his brother couldn’t do. They showed his work to typical kids and they were like ‘Wow’,” said Khairy.
“It was so nice to hear same age, typical kids go ‘Wow’,” Nori said with a smile.
What they wish was around
Nori and Khairy are doing more than just looking after Timor’s needs, they are helping other autistic children and their families with We Rock The Spectrum Kid’s Gym (WRTS), an inclusive play gymnasium in Ara Damansara they opened in December 2016.
Nori co-owns the gym with Hana and Rahmah Mahmood – Nori’s aunt. Khairy stumbled upon WRTS during a family holiday in Los Angeles in 2015 and enjoyed the gym very much with his two older sons. He broached the idea of a gym like that in Malaysia with Nori.
WRTS recently launched a programme called ‘Therapy Through Play’, featuring fun and friendly sessions for children with special needs. Crucially, the sessions will also include the sensory integration and occupational therapy these children require, and at half the price of what parents would usually pay.
Accessible, affordable therapy
“We want to make therapy more accessible to everyone. We have all the equipment in the gym, the things that therapists use. They are great for motor skills and sensory development for any child and it is super fun,” said Nori.
Her secondborn, she said, did not have a good sense of his own limbs. He needed a certain amount of exercise every single day. Children with sensory development issues need to have activities that support whatever their particular issues are, such as working on their sense of balance or being able to deal with noise as examples.
“Timor really needs to work out and sweat it out, otherwise, he will be out of sorts. In the US, you have parents going to the gym, and being their child’s own therapist, it’s the affordable way to get therapy. Anywhere in the world and in KL, if you want to see a therapist, it would be between RM150-300 per session,” Nori said.
For Nori and Khairy, this situation just had to get better for parents of special needs children. Sessions at government hospitals were not as regular as parents would like, private sessions were far too expensive, and these children needed structured play regularly and often.
“We also hope the outcome will be that family and parents play with their children more, just be with their children. Sometimes we go through this and need this too. Other typical parents can go out and play bola with their kid. I can’t do that with my kid, so how do we have a fun time together?” she said.
Parenting all boys
And what’s it like parenting three boys? From discussing cases of sexual harassment with the entire family at the dinner table, to making sure they are aware about differences and diversity, Nori and Khairy say their boys are growing up with a healthy respect for women.
“(Toxic masculinity) is not a problem in this household. The dominant figures are all female – my mother, my sisters, Nori, Aisha. We do have many conversations about respect,” Khairy said.
Nori said it was also important for them to talk about kindness and compassion, particularly as the family had children who had special needs.
The family has a routine – an early family dinner at around 6pm – which both say benefits all the children.
“It’s great for everyone. Even when Khairy is busy and needs to go for a dinner-time event, everybody can touch base during this time. We sit and talk to each other.
“So recently (the adults) did talk about what happened in BFM, for example, and the children asked, ‘What’s this about?’ There’s a way to tell the kids the truth, keep to the facts of something, but at their level. You don’t have to dismiss a subject,” Nori said.
“We said this is harassment, something not nice happened. We don’t shield them from the adult conversations,” adds Khairy.
Got it all made?
When we put it to Khairy and Nori that they seem to have it all figured out – family routines and values – both put on faces that are equals parts amused and horrified, shaking their heads.
“If you don’t second guess yourself as parents, you’re not doing a good job. Am I doing anything I can? Am I doing everything right? There are a lot of things I have missed out, but we try our best,” Khairy said.
At this point, their youngest, Raif comes in with the iPad and everyone laughs.
Screentime is a challenge for their household. Particularly for their youngest, who they say is often glued to the device.
“We didn’t really have that issue with Number 1 and Number 2, but with Number 3 we hit that busy time … so there was that interim when we said ‘Okay lah, just for this short while’. And now we haven’t been able to go back successfully, it’s rough!” Nori admitted.
And both also acknowledge that they both have anxieties about parenthood, just like any other parent.
What Nori & KJ worry about
Nori said she always has anxieties about what kind of human beings she is raising, but that she also finds joy in discovering things about her children.
An example was Jibreil’s teacher telling her that he is a nice and compassionate kid who gets along with everybody including the autistic kids at school.
“And what we want for Timor is essentially what we want for all our children and I think, in a nutshell, what many parents want – independence and a meaningful, happy life.”
As for Khairy, he said his anxieties as a father were different for each child. For Timor, he worried about independence for his son.
Father and sons
He took a breath before talking about his son Jibreil. The firstborn, also known as Cougar, had popped in unexpectedly during the interview to tell makchic: “Can I say something? My father is a great father.”
Khairy later shared: “I don’t say this in a conceited manner, but it’s difficult for him to have me as a father.”
“I don’t want him to think that my public life and achievements will overshadow him for the rest of his life. I don’t want him to think, ‘Oh I have to be like him.’ He doesn’t have to be. He might see me as someone he aspires to be like.”
Khairy said Jibreil told his school principal “Actually I’m happy he is no longer a minister” after the General Election where Barisan Nasional lost to Pakatan Harapan.
“Maybe it was a spending-time (with me) thing, but you know, maybe he doesn’t want life to be defined that way. And I was happy he said that. He didn’t tell us that, but I understood. My anxiety for him is that I want him to be his own man. He’s the eldest – I don’t want him to think that he has to be anxious that he doesn’t become me,” Khairy said.
For Raif? “My anxiety is I hope he doesn’t become addicted to the iPad,” he jests.
On a serious note, Khairy said he too found great joy in parenting, such as seeing Jibreil growing up with kindness.
“When it comes to Timor, joy is small steps, such as him being able to write something unprompted about how he feels, or to greet someone.”
“And joy for Raif is when he puts down his iPad!”
By Laych Koh
Photos are from Khairy and Nori’s personal collection.
