Disclaimer: In Real Life is a platform for everyday people to share their experiences and voices. All articles are personal stories and do not necessarily echo In Real Life’s sentiments.
In December 2023, the tragic case of a murdered autistic boy brought to the public’s attention how children with autism are often the most vulnerable members of society. This story is shared by the mother of a child with autism and how she finally found him a place in Malaysia where he truly belonged:
When my son, Zain, was diagnosed with Level 3 low-functioning autism (LFA) at two, it marked the beginning of a significant challenge in my life.
LFA is associated with the most severe forms of autism. It impacts both children and adults, and most individuals will never be fully independent for the rest of their lives.
Unfortunately, a year after his diagnosis, Zain’s father passed away, and I became Zain’s sole caregiver.
I asked myself, “Will he ever live a normal life?”
Juggling a full-time job and tending to Zain’s needs became my daily tightrope walk.
At that time, Zain was non-verbal and prone to severe temper tantrums, which are now more accurately known as autistic meltdowns. This meant that he required a high level of care.
For the first 15 years of his life, he was unable to feed himself and relied on diapers for daily living. It was only when he turned 16 that he initiated toilet training. Even then, he would occasionally wet himself.
I hired nannies to take care of him, but due to his meltdowns, no one stayed for more than a few months. During his episodes, he would constantly bite them or pull their hair.
With this intense pressure to find someone to watch over him, there was always a dark cloud hanging over my head. The questions,
“Who can I trust to take care of my son if I am gone?”
“Will he ever experience the sweetness of success or the bitterness of failure?”
and “Will he ever live a normal life?” lingered in my mind.
At the playground, my son was bullied and isolated
This was especially true when I saw how my son is treated in society. Whenever I am with him, people cast strange glances our way.
Sometimes, they even try to sidestep him, as if he’s an unwelcome shadow. When he sits next to them on the train, they would get up and leave, leaving an uncomfortable void behind them.
Once, I brought Zain to the playground; he saw this group of boys playing catch with the ball and joined them. However, every time the ball was dropped, they would ask Zain to pick it up for them. Zain, being his unassuming self, would do so without question.
Eventually, they started throwing it further and further, nowhere close to anyone, and Zain would retrieve it each time while they laughed at him.
It was like an unfortunate game of emotional distance, the ball becoming a symbol of isolation, with each toss echoing the exclusion Zain must have felt.
At one point, they threw it across the street; he didn’t realize there were cars passing by, and he ran to get it, barely avoiding being hit by a car.
Since then, I’ve decided not to take him to the park.
I found a boarding school for neurodivergent children in Ipoh
As time went by and more news of autistic children getting bullied, abused, or even murdered surfaced, my mind started racing like a hamster wheel with dark thoughts.
Then, one day, I received a call from my friend, and it felt like the answer to my prayers. She told me about a special needs center in Ipoh, almost like a boarding school for neurodivergent individuals.
I faced the toughest decision of sending him to the center. As much as I wanted him by my side, I knew I needed the help of people who knew how to teach him the skills to live a more independent life.
So I sent him to the school, where they’ve taught him essential living and communication skills.
To my relief, the center has been a key that has unlocked doors to having the same teenage experiences as his peers. It has allowed him to participate in recreational activities, such as going to the beach, playing sports, and making genuine connections with other children with autism.
Recently, he caught dengue and fell under the weather. I took him to the hospital and sat by his side while he recovered. To my surprise, the staff from the school took turns visiting him, like guardian angels tending to his well-being.
It was at that moment I realized that if something happened to me, Zain would be in good hands, sheltered under the wings of care.
Like a butterfly coming out of its cocoon, he is on the road to independent living. The anxiety that weighed on me is slowly diminishing, swapped with a comforting sense of hope.
What do you think of this story?
Let us know in the comments!
Submit your story to hello@inreallife.my and you may be featured on In Real Life Malaysia.
Read also: I’m A Malaysian Woman Living With Autism – Here’s My Story
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