Having the right facilities and access to therapies can mean a world of difference to children with autism. Meera Murugesan meets a father who will go the distance for his autistic child
WHEN faced with a problem, most of us will do our best to overcome it. Mohd Dzulkaedah Zaharuddin is no different but unlike the average person, he doesn’t just want to improve a situation that affects his family but all others like him.
When his only son, Dzarif Naufal, was diagnosed with autism, the father of three threw himself into understanding the condition and finding ways to help his son.
It was during this process that he realised how big a struggle it was for underprivileged families with autistic children to provide the same level of care.
Early intervention therapy is very expensive and poor families can’t afford such facilities even though it’s crucial for children with autism.
Determined to make a difference, Mohd Dzulkaedah, a programme manager at Sime Darby Property, decided to participate in the Berlin Marathon 2017 Run for Autism to raise funds for The National Autism Society of Malaysia (NASOM).
He hopes to raise RM25,000 for a fund that will enable underprivileged children with non or low verbal skills to have early speech therapy intervention.
The fund will be administered by NASOM which will also identify deserving recipients.
MAKING A DIFFERENCE
“As middle-class parents, my wife and I can afford certain facilities for our son but for underprivileged families, this can be a huge burden.”
Occupational therapy can cost RM150 an hour. Speech therapy is even more expensive at around RM200 an hour. To see results, parents have to commit to twice-a-week sessions or even more.
For poor families, this is something they cannot even contemplate.
“But without this therapy, the children get left behind and their potential remains unlocked.
With Dzarif, Mohd Dzulkaedah and his wife first became concerned when their child was not hitting his milestones like other children.
Having raised two other children, both girls, aged 10 and 12, they knew something was not right.
Their concerns led them to specialists who performed a range of tests and eventually diagnosed Dzarif with mild to moderate autism.
Although shocked by the diagnosis, they refused to dwell on what had caused their son’s condition or whether they could have prevented it in any way.
Mohd Dzulkaedah says the reasons for autism are still being studied and even experts can’t point to any particular contributing factors.
Having been advised on the importance of early intervention, he and his wife ensured that Dzarif had access to the right care and therapy.
Dzarif eventually progressed to the point where he was accepted into a mainstream kindergarten.
In July, the four-year-old switched to an integrated kindergarten nearer his home which caters to both regular kids and children with special needs.
At this new place, Dzarif receives more intensive therapy for his condition and his parents are seeing even more progress.
“In a mainstream kindergarten, he will always be in the lower end. At this new place, he gets a specialised approach catered to his needs and he’s showing a lot of improvement.”
Dzarif has started to say more words even though he still can’t string them together in a sentence. He is also becoming more independent.
During the family’s recent Hari Raya break, many relatives commented on the improvements in Dzarif.
For Mohd Dzulkaedah, this is even more reason to continue his commitment to help other children through the Berlin Marathon.
HEALTHY WITH A CAUSE
He says sports and fitness have always been part of his life right from his schooldays. But it was in college that he developed a love for outdoor activities.
“It became a form of therapy to help me balance my life,” he adds.
He has tried his hand at futsal and bowling but running became a passion when he was working with his former employer, Air Asia.
He was part of the airline’s running team and he quickly realised how liberating it was to run.
These days, he carries his running shoes with him everywhere and never misses an opportunity to go for a run, even when he’s on holiday or on a working trip.
“I always set aside at least 30 minutes in the morning for a run. It’s very therapeutic. You leave your stress behind. By the time you reach your destination, you’re fresh and ready to start the day.”
He adds that running is the most efficient and the cheapest workout as one doesn’t need a gym membership or expensive equipment.
“Just a pair of running shoes and the world is yours.”
But he also believes in “running with a purpose” or “running for a cause” and hopes other runners will do something similar to his endeavour.
“We have many running communities in Malaysia so let’s all run for a purpose, contribute back to society while doing something we love.”
He adds that research in the United States has also shown that running is one of the best therapy for children with autism because it mobilises all their skills.
He hopes that one day runners could pair up with NASOM kids and take them on guided or supervised short runs.
“I believe children with autism are beautiful human beings. We need to help them step out of their world to be fully appreciated.”
A place where all are welcome
SOCIALISATION is a crucial skill for children with autism but often, facilities that enable these children to interact with others their age in an environment that is healthy and inclusive are limited.
But We Rock The Spectrum (WRTS) Kid’s Gym in Ara Damansara, Petaling Jaya is showing that it can be done.
It has created an environment where all children get the chance to do what kids do best – play, learn and grow.
“We welcome everyone, which is why our tagline is Finally a Place Where You Never Have to Say I’m Sorry. What that means is you never have to say sorry for being different,” says Nori Tun Abdullah, an owner of the gym.
Nori explains that 10 years ago, the rate of autism in Malaysia was estimated at one in 625 children but today, most people believe the actual figure is not far off from the United States where one in 68 children have autism.
More and more Malaysians today know of families coping with autism. However, during family outings, these parents often have to split up their children because they can’t find a place that caters to the whole family.
In some cases, the special needs child can't do the same activities as his other siblings, or sometimes they do have common interests but only children who are considered normal can be accommodated at a particular facility.
Certain environments are also unsuitable for special children.
For example, children with sensory developmental issues may find the loud music or flashing lights at certain play gyms too overwhelming and staff may not be trained to understand and manage behaviors which are common among children with special needs.
A SAFE HAVEN
WRTS not only trains its staff to handle different types of children but it even has a “calming room” where children can go if things get overwhelming, or if a child gets overstimulated for whatever reason.
It's a quiet space where lighting is controlled, where the child can find a comfortable corner, use calming toys and take a break.
More than 50 per cent of the children using WRTS regulary have special needs. Many of them have autism and some Down’s Syndrome. Others are slow learners or have cerebral palsy.
“A gym like ours is fun for the whole family and at the same time provides therapy-like benefits through play.”
The gym offers dance classes to kids of all abilities and also runs school holiday camps for all children but it is the special play equipment at its centre which particularly assists children with disabilities.
For example, the Zip Line helps to build upper extremity strength, muscle endurance and enhances the ability to integrate and tolerate movement.
It also gives self-confidence as children challenge themselves to hold on long enough to make it to the other end.
The Bolster Swing is also popular because it’s something many children can sit on and use together.
There are even children who come to the gym to use the equipment for structured occupational therapy.
At the gym, children with autism are welcome even if they have behavioral difficulties.
Nori says using equipment like the swings often keeps them calm and subsequently supports sensory regulation.
“When a person is calm and happy, they are more inclined towards interaction and engagement.”
This is especially important because one of the common challenges for people on the autism spectrum is socio-communication skills.
They have a tough time communicating and interacting with people but having a safe, non-threatening environment where they are welcome and where other children are also around helps them cope better with these difficulties.
Nori says children learn from other children and many studies have shown that inclusion is important to help kids with autism grow and develop.