Behind Every PwD is a Parent Who Never Gives Up
Sharing by a group of parents of children with disabilities in Malaysia
In Malaysia, parenting is already a full-time job. For working parents, children are usually cared for by grandparents, relatives, friends, or sent to day-care centres. But for parents of persons with disabilities (PwDs), parenting comes with deeper emotions, heavier responsibilities, and many hidden battles that outsiders rarely see — and often cannot understand. If you are a parent of a PwD reading this, chances are you have asked yourself questions like:
“Am I doing enough?”
“Why does my child behave this way?”
“What will happen to my child when I die?”
These questions are not signs of weakness. They are signs of 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 only once; it repeats at every new stage of the child’s life — diagnosis, early intervention and pre-school, school years, transition out of school, and adulthood.
Many Malaysian parents also carry an extra burden: comparison. Our society is highly academic-focused. Report cards, UPSR (before it was abolished), PT3, and SPM — everything feels like a scoreboard. For parents of children with ADHD, autism, learning disabilities, blind and visual impairment, deaf or hearing impairment, rare diseases, physical disabilities, or multiple disabilities, this environment can feel toxic and crushing. As one experienced Malaysian doctor and mother of four children with ADHD, Dr. Haseanti Hussein from Kuching, Sarawak, shared recently in the chat group of The National Family Support Group for Children and People with Special Needs; “One of the hardest things to accept is that you cannot place expectations too high on 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 in December 2025 by the Department of Statistics Malaysia (DOSM), only about 805,000 people are officially registered as OKU (Orang Kurang Upaya / PwDs), roughly 2.3% of Malaysia’s population of 34 million as of 31 December 2024 closing. Yet the World Health Organization (WHO) estimates that around 16% of any population lives with some form of disability. This gap tells us one important thing: many PwDs are invisible in the system, and their voices are unheard. If we include their immediate family members (assuming each PwD has only two immediate family members whose lives are directly affected), this community represents nearly half of Malaysian society. This does not mean everyone has a disability, but it shows how many lives are impacted.
Why does this matter? Because data drives policy. Budget allocation, school support, therapy services, and even urban planning depend on numbers. Without registration, our children are simply not taken into account because they are underrepresented. Dr. Haseanti strongly advocates OKU registration, even for children who are coping well in mainstream schools. The OKU card is not a label of shame. It is 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 biggest emotional traps parents fall into is self-blame. When a child has meltdowns, emotional outbursts, or behavioural challenges, parents often internalise these moments as personal failure. But as many Malaysian parents share openly in peer support groups, even the most patient parent will lose control sometimes. Anger, exhaustion, and crying alone in the bathroom are 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 far better than shouting or physical punishment. As one parent wisely said: “It’s okay to not be okay. But what you do about it makes the difference.”
Back to Basics – What Really Helps
Across Malaysia, parents are rediscovering the power of simple, back-to-basic strategies, such as:
- 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 intake, ensuring adequate hydration (we live in a hot, tropical country), and prioritising at least eight hours of sleep for children. These are not miracle solutions, but they create stability—and stability supports better behaviour. Medication, therapy, diet, sports, and emotional support are not “either-or” choices. They 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 attended mainstream schools. Her eldest daughter is exploring animation, art, and music, while her eldest son is an international digital music composer. Her twins are still discovering their potential in high school and attend mainstream classes alongside peers without disabilities. 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:
- Cooking 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 through physical meetups—give parents a safe space to say, “I’m tired,” without judgment. Speaking to people who have “been there” reduces isolation and burnout. As one parent shared honestly: “People without children with disabilities may never fully understand our pain. But together, we can advocate for our children’s future.”
Advocacy starts at home, grows within the community, and eventually reaches policymakers.
A Message to Parents of PwDs
Parents of PwDs need to remember this: 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 children 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. This has been proven in many countries I have connected with, such as the United States, the Netherlands, New Zealand, and Taiwan. For parents who wish to advocate better for their children, remember this: data is power, community is strength, and love — when paired with action — creates real change.
By Alvin Teoh
Parent of a PwD in Malaysia
This article is based on more than 300+ messages exchanged on 19 January 2026, when Alvin Teoh introduced a remarkable mother, Dr. Haseanti Hussein, to The National Family Support Group for Children and People with Special Needs chat group. In addition to being a mother of four children with ADHD, Dr. Haseanti is a medical doctor, PhD holder, public health expert in Malaysia, certified professional medical and health trainer in Asia, and a survivor of bullying.
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Behind Every PwD Is A Parent Who Never Gives Up — Alvin Teoh by Codeblue
