Parents of autistic children admit that the challenges are daunting and often isolating as the children can have outbursts, meltdowns and intense needs.
FEATURE
Firas is a five-year-old boy who loves motorcycle rides. He even has his very own bright blue helmet which he puts on with flourish before going on his daily evening adventure with a family friend. And like most children, Firas loves sodas – grape and sarsaparilla are his favourites, toys and cartoons – pretty much things the average child likes.
But Firas isn’t quite like the rest. Although nothing about his outward appearance gives anything away, the good-looking and affectionate five-year-old is autistic.
His parents, Mazlin and Ghazaime, both doctors by profession, said that while things are a little more manageable now, finding a suitable learning centre for their son was quite a challenge.
“A friend of ours also has an autistic child who was put in the same class as children with Down’s Syndrome.
“We have heard about the government-run centres but after taking a closer look at them, we found their facilities wanting. It was difficult in the sense that we didn’t know where to go and who to ask for help so my husband and I just went ahead and did a Google search which led us to The Early Autism Project [EAP],” said Mazlin.
When asked about what’s the biggest difference they see in Firas after time spent at the centre, her reply was an uplifting, “Oh wow!”
“Firas joined EAP last November and in that time, he went from not being able to construct a sentence to now being able to tell us what he wants. The biggest plus point is that he’s now toilet trained. We tried to do it by reading up as much as we possibly could – we even had one of our other children show him how to do it, but it didn’t work.
“We knew it was frustrating for him not to be able to understand what it is that we were trying to teach him.
“I’m sure parents of autistic children can relate to this when I say that we have to constantly remind ourselves that our child is not retarded and that they do want to get things right, but just don’t know how,” added Ghazaime.
Daunting challenge
Other parents of children with autism, whom we spoke to, admitted that the challenges are daunting and often isolating as the children can have outbursts, meltdowns and intense needs. But they say their children are also vital, loving parts of their lives.
Autism’s effects vary widely. It’s a spectrum – not a single disorder – which impairs communication and social skills. While there is no cure, autism treatments and early interventions have been found to help.
“It can be overwhelming,” said Mary Lee, a single mother to a nine-year-old autistic child.
“Once you get a diagnosis, you can’t be a parent, you have to be a case manager, an education specialist. You’ve got to figure out the medical system. The level of stress is terrifying. Malaysia doesn’t have the system to support the parents. The services are not there to match the needs,” she added.
Manika Devi stated it bluntly when she said that raising a special-needs child and a family while juggling work can be overwhelming.
“Once in a while you get that feeling like, ‘I just want to die.’ It’s hard. There’s anger and a lot of emotions you go through. But when you sit down and calmly think, you realise that’s not the solution,” she said.
Helen Foong learned that her eldest son, Jonah, had autism when he was two years old. She didn’t tell her family about it for three years.
“It was just very, very hard and to be honest, I was embarrassed because everyone in my family, including my other nieces and nephews, are high-achievers,” she said.
Helen said that the Asian culture is all about perfection.
“You have to be the best, be super smart. Parents want to be able to say their child, ‘does math, he’s the top of the class, he’s gifted and intelligent.’ And when you have a child who will never be these things, or possess these skills, as a parent you feel like a failure and yes, there have been times when I have unfairly resented my child,” she said.
Hopeful and optimistic
This is something that Mazlin and Ghazaime echo when they shared that there was a time when they wondered if somehow, Faris’ autism could have been prevented during the pregnancy.
“We would go over these details, asking ourselves if there was an illness, or did something go wrong somewhere. But when you look at the bigger picture and when you find out more about autism, you realise that there’s no way to know what causes it,” said Ghazaime.
In Helen’s case, she recalled hearing the misconceptions about autism and cultural issues from her and her husband’s family.
Although they now know about his condition, they still question why the boy couldn’t recite his ABCs and commented that Helen had worked too much during her pregnancy.
The cost of treating and teaching an autistic child can be phenomenal, running into the thousands at certain centres. Manika’s husband travels frequently for business to be able to pay for their son’s therapies, making their marriage a long-distance one.
Her youngest son, who doesn’t have autism, clamours for her attention. On top of that, she said, she has exhausting telephone battles with an insurance company to get the treatments covered.
At some point during the interview, Manika breaks down to cry, too.
It is also overwhelming to see how Mazlin and Ghazaime react to the question of being asked what is their biggest fear or concern for Firas.
Mazlin’s eyes well up and Ghazamie looks at her, takes a deep breath and proffered, “We think about how he’s going to cope or how he’s going to fend for himself after we’re gone.
“But we remain hopeful and optimistic in that he’s learning and that it will get better with time.”
Small steps, big progress
For Helen, things are getting better between her and Jonah. In her son’s brightly decorated room, Helen walks to the closet, pulls out a sweater and shared: “A few months after Jonah was born, I travelled to the United States and purchased a sweater with a big orange P for Princeton on the front.
“The day I dressed him in the sweater, I remember thinking, what will he be when he grows up. Our friends and relatives wondered aloud asking what college? We had no idea that he was autistic then of course,” she said before calling for her son.
Jonah comes bounding into his room and Helen holds up the sweater, now long outgrown. “What letter?” she asked her son, pointing to that big P.
“Orrwange,” said Jonah. Behind his glasses, both pupils slid into the corners of his eyes. “What letter?”
She asked again, not pointing this time. Jonah can focus only on one thing at a time, whether that something is big, or orange, or the letter P.
“Orrwange. Oh-ange.” A shake of his shoulders and Jonah turned his head toward the sweater. “Orrrrrrr–P. Is P.”
“Good job!” Helen claps and kisses his cheek. With a resolute “Go pay! Down-stairs!” he bounded off.
As Jonah left, Helen folded the the little sweater and stowed it away, saying, “How can that not give me hope?”
It is a glorious sunny afternoon and as Manika watched her son play by the condominium pool, she said he is something of a free spirit now.
It was only eight months ago that he would cower from any unfamiliar sounds, but today, he runs around singing along to his favourite Bollywood songs.
He never masks his affection for his therapists or his family, getting hugs and tickles. He relishes the joys in life, said Manika, and his squeals from splashing in the water is testimony to this.
When he utters new vocabulary words, Manika and her husband cry with joy. Their son is making progress.
