In Malaysia, parenting is already a full-time job. For both parents who are working, their children normally will be either taken care of by their grand-parents, relatives, friends or sent to day-care centres.
But for parents of persons with disabilities (PwDs), it is a role that comes with deeper emotions, heavier responsibilities, and many hidden battles that outsiders rarely see and also cannot understand.
f you are a parent of a PwD, chances are you have asked yourself questions like: “Am I doing enough?”, “Why does my child behave this way?”, and “What will happen to my child when I die?”
These questions are not signs of weakness. They are signs of parental love.
The Hidden Emotional Journey Of Parents Of PwDs
Psychologically, parents of PwDs often experience a cycle of shock, denial, guilt, anger, grief, and finally acceptance. This cycle does not happen once, it repeats itself at every new stage of the child’s life: diagnosis, early intervention and pre-school, school, transition out of school, and adulthood.
Many Malaysian parents also carry an extra burden, namely comparison. Our society is highly academically focused. Report cards, UPSR (before it was abolished), PT3, SPM – everything feels like a scoreboard.
For parents of children with attention deficit hyperactivity disorder (ADHD), autism or learning disabilities, children who are blind or visually impaired, deaf or hearing impaired, with rare diseases, are physically disabled, or with multiple disabilities, this environment can feel toxic and crushing.
As an experienced Malaysian doctor and mother of four children with ADHD, Dr Haseanti Hussein shared her experiences recently in the chatgroup for the National Family Support Group for Children and People with Special Needs: “One of the hardest things to accept is that you cannot put high expectations on your child/children with disabilities. Society is obsessed with academics, and this is toxic for us.”
Acceptance, however, does not mean giving up. It means redefining success.
You Are Not Alone, The Numbers Matter
According to data published by the Department of Statistics, only about 805,000 people are officially registered as PwDs, roughly 2.3 per cent of Malaysia’s population of 34 million as of December 31, 2024.
Yet, the World Health Organization (WHO) has estimated that around 16 per cent of any country’s population lives with some form of disability. This gap tells us one important thing: many PwDs are invisible to the system, and their voices are unheard.
If we include their immediate family members (assuming each PwD has two immediate family members), whose support is directly affected, this community represents about half of Malaysian society. This 50 per cent does not mean everyone has a disability, but it shows how many lives are affected.
Why does this matter? Because data drives policy. Budget allocations, school support, therapy services, and even urban planning depend on numbers.
Without registration, our children are simply not taken into account in the planning as they are inadequately represented. Dr Haseanti has strongly advocated for Orang Kurang Upaya (OKU) registration, even for children who are coping well in mainstream schools.
The OKU card is not a label of shame, but a tool for protection, access, and future planning; covering medical benefits, educational assistance, and social support, if parents are no longer around.
In simple terms, registration is love expressed as preparation.
Parenting Is Not About Perfection
One of the worst emotional traps parents can fall into is self-blame. When a child has meltdowns, emotional outbursts, or behavioural challenges, parents often internalise it as their failure.
As many Malaysian parents have openly shared in peer support groups, even the most patient parent will lose their patience sometimes. Anger, exhaustion, and tears are all part of the journey.
Psychologically, what children with disabilities need most is emotional regulation support, not punishment driven by anger. Clear boundaries, consistent consequences, and intentional rewards work better than shouting or physical punishments.
As one parent wisely said: “It’s okay to be not okay. But what you do about it makes the difference.”
Back To Basics: What Really Helps
Across Malaysia, parents are rediscovering something powerful, namely simple, back-to-basic strategies. These include:
- Physical play at playgrounds and parks.
- Sensory activities like sand, grass, climbing, and crawling.
- Household chores to build independence.
- Consistent routines for sleep and meals.
Medical professionals and therapists often remind parents that movement helps regulate emotions. Play is not a reward; it is a need.
Diet and sleep also matter. Many Malaysian doctors advise reducing excessive sugar, ensuring enough drinking, and prioritising at least eght hours of sleep for children.
These are not miracle cures, but they create stability, and stability helps with behaviour. Medication, therapy, diet, sports, and emotional support are not either-or choices, but work best together, depending on each child. No two children are the same.
Redefining Success
One inspiring Malaysian example is Dr. Haseanti’s own children. Despite ADHD and learning challenges, all four are in mainstream schools.
Her eldest daughter is exploring animation, art, and music, while her eldest son in is a digital music composer.
Her twins are still exploring their potential in high school and attending mainstream classes with other normal teenagers. Their success did not come from forcing them into society’s mould, but from understanding their strengths.
Success for children with disabilities is not always straight A’s. Sometimes it is:
- Being able to cook a simple meal.
- Managing emotions better than last year.
- Communicating needs clearly.
- Living independently one day.
These wins matter. As parents we celebrate them.
The Power Of Community
Perhaps the most important psychological lifeline for parents is community. Support groups, whether on WhatsApp, Telegram, or physical meetups, give parents a safe space to say, “I’m tired,” without judgement.
Talking to people who have been there and done that reduces isolation and burnout. As one parent shared: “People without children with disabilities cannot fully understand our pain. But together, we can advocate for our children’s future.”
Advocacy starts at home, grows in the community, and eventually reaches policymakers.
A Message To Parents Of PwDs
Here is a message that parents of PwDs need to hear — you are not weak, and you are not failing. You are doing one of the hardest jobs any parent can do.
Your child does not need a perfect parent, only one who is present, informed, and full of love. Love your child as they are. Prepare for their future bravely. And remember, you are not alone.
In Malaysia, change may be slow, but it begins with parents who refuse to stay silent, who register their children, who speak up, and who support one another. It has been proven by parents that I have connected with in the United States, the Netherlands, New Zealand, and Taiwan.
For parents who wish to advocate better for their children, remember; data is power, community is strength, and love, when paired with action, creates real change.
The source of this article is from more than 300 messages exchanged on January 19, 2026 when Alvin Teoh introduced Dr Haseanti Hussein to the National Family Support Group for Children and People with Special Needs chatgroup. Besides being a mother to four children with ADHD, Dr Haseanti is also a medical doctor, a PhD holder and a public health expert in Malaysia, a certified professional medical, health trainer, and a bullying survivor.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
