07/05/2026

THURSDAY | MAY 7, 2026

10

COMMENT by Alvin Teoh

To parents of children with disabilities: You are not alone

I N Malaysia, parenting is already a full-time job. For working parents, children are often cared for by grandparents, relatives or friends or are sent to day-care centres. But for parents of persons with disabilities (PWD), it is a role marked by deeper emotions, heavier responsibilities and many hidden battles that outsiders rarely see or understand. If you are a parent of PWD, you may have often asked yourself questions like: “Am I doing enough?”, “Why does my child behave this way?” or “What will happen to my child when I die?” These questions are not signs of weakness; they are signs of love. Hidden emotional journey Psychologically, parents of PWD 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 – from diagnosis and early intervention to pre-school, schooling, the transition out of school and adulthood. Many parents also carry an extra burden – comparison. Our society is highly academically focused. Everything feels like a scoreboard. For parents of children with ADHD, autism or learning disabilities, as well as those who are blind or visually impaired, deaf or hearing-impaired, living with rare diseases, physically disabled or with multiple disabilities, this environment can feel toxic and crushing. As one doctor and mother of four children with ADHD, Dr Haseanti Hussein from Kuching, Sarawak, recently shared in The National Family Support Group for Children and People with Special Needs chat group: “One of the hardest things to accept is that you cannot have high expectations of your child with disabilities. Society is obsessed with academics, and this is toxic for us.” Acceptance, however, does not mean giving up. It means redefining success. According to data published in December 2025 by the Department of Statistics Malaysia, only about 805,000 people are officially registered as OKU ( orang kurang upaya ), representing roughly 2.3% of Malaysia’s population of 34 million as at Dec 31, 2024. Yet, the World Health Organisation estimates that around 16% of any

Back to basics Parents are rediscovering something powerful – simple, back-to-basics strategies. These include: 0 physical play at playgrounds and parks; 0 sensory activities with sand and grass, as well as climbing and crawling; 0 household chores to build independence; and 0 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 doctors advise reducing excessive sugar intake, ensuring adequate hydration (especially in a hot, tropical country) and prioritising eight hours of sleep for children. These will not create miracles but they provide stability – and stability helps shape behaviour. Medication, therapy, diet, sports and emotional support are not either-or choices. They work best together. Redefining success One inspiring example is Haseanti’s children. Despite ADHD and learning challenges, all four have been in mainstream schools. The eldest daughter is exploring animation, art and music, while the eldest son is an international digital music composer. Her twins are still exploring their potential in high school while attending mainstream classes alongside other teenagers without disabilities. Their success did not come from forcing them into society’s mould but from understanding their strengths. Success does not always mean straight As; it is found in simple, everyday achievements such as: 0 being able to cook a simple meal; 0 managing emotions better; 0 communicating needs clearly; or

population lives with some form of disability. This gap tells us one crucial thing: Many PWD are invisible in the system and their voices go unheard. If we include their immediate family members (assuming each PWD has at least two family members whose lives are directly affected), this community represents about half of Malaysian society. This 50% 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 not taken into account in planning as they remain underrepresented. Haseanti strongly advocates for 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. It provides 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 as failures. But as many parents openly share in peer support groups, even the most patient parent will lose control at times. Psychologically, what children with disabilities need most is support in emotional regulation, not punishment driven by anger. Clear boundaries, consistent consequences and intentional rewards are better than shouting or physical punishment. As one parent said, “It is okay to be not okay. But what you do about it makes the difference.”

0 living independently, one day at a time. These wins matter. As parents, we should celebrate them. The strength of community support The most important psychological lifeline for parents is the community. Support groups, whether on WhatsApp, Telegram or in physical meet-ups, give parents a safe space to say, “I’m tired”, without judgement. Talking to others who have “been there and done that” helps reduce 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 begins at home, grows within the community and eventually reaches policymakers. Message to parents of PWD Parents of PWD need to remember: 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. This has been proven in many countries, including the United States, Netherlands, New Zealand and Taiwan. For parents who wish to advocate more effectively for their children, remember: data is power, community is strength and love, and when paired with action, creates real change.

“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.

Alvin Teoh is a parent of a disabled child. Comments: letters@thesundaily.com