Sharifah Rahmah: A mother's story of love, advocacy, and raising children with special needs

SHAH ALAM - A stay-at-home mom recently opened up about the unique challenges she faces while raising children with disabilities (PwD), including managing mental health, accessing social support, and requiring substantial financial resources.

In the serene yet demanding world of stay-at-home mothers raising children with disabilities, each day presents a unique set of challenges that go beyond conventional parenting.

From helming complex healthcare needs to seeking essential social support, these mothers often find themselves at the nexus of caregiving and advocacy.

One of the most daunting aspects of this journey is the relentless demand for substantial financial resources.

Beyond routine expenses, the costs associated with specialised therapies, adaptive equipment, and medical interventions can strain budgets.

Sharifah Rahmah, a 36-year-old stay-at-home mom with three children, two of whom have disabilities, described the beginning of her journey as particularly daunting.

She discovered abnormalities in her eldest son at just three months old.

“The situation was made more complex by the distance between my husband and me, as we were in a long-distance relationship (LDR) due to the nature of his work that required him to be away.

“Balancing my children's needs made it impossible to maintain a career.

"If I had more financial resources, perhaps the situation would have been different, as raising special needs children requires substantial financial backing, especially because Early Intervention Programme (EIP) therapies can be costly.

“Thankfully, Allah has blessed me with strong social support, living close to my in-laws who are always there for me through thick and thin.

"My siblings often visit on weekends to lend a hand,” she told Sinar Daily recently.

Despite her limited financial resources, Sharifah continually seeks alternatives to support her children's development.

“Each of my children has a unique medical history: my eldest has Moderate Autism Spectrum Disorder, my middle child was born prematurely at 32 weeks with Duodenal Atresia and my youngest has Moderate Down's Syndrome, Moderate PDA (a heart condition leading to heart failures), mild hearing loss and eye cataracts.

“Several of them have undergone surgeries, and all require therapies due to developmental delays. I am grateful to Allah for easing our burdens, despite enduring some unbearable incidents,” she added.

Sharifah said that her children are progressing well through occupational therapy sessions, physiotherapy sessions, online speech therapy classes, swimming lessons, regular schooling, and Iqra' classes.

“Thanks to Allah, their improvements are noticeable.

“Despite their varying cognitive abilities, they share a strong bond, showing no discrimination among themselves. Their love, concern, and empathy are genuine, and they take care of each other remarkably well.

“I am pleasantly surprised by how the elder brothers assist in caring for their youngest sibling; changing diapers, feeding formula, and ensuring his safety. Their love for each other is truly priceless,” she said.

Sharifah also mentioned that the government has provided various facilities for PwD, including occupational therapy, physiotherapy, speech therapy, psychological counseling, as well as PDK (Community Rehabilitation Progammes) and PPKI (Special Education Integrated Programme), although these resources are limited.

“To further enhance children's development and milestones, some parents opt to enroll their children in private classes. Additionally, certain government programs offer allowances under specific terms and conditions.

“Non-governmental organisations (NGOs) such as Down Syndrome Association of Malaysia (PDSM) and Kiwanis Down Syndrome Foundation (KDSF) cater to individuals with Down's Syndrome, while National Autism Society of Malaysia (Nasom) focuses on autism-related programs.

“My hope is for future governments to establish facilities like residential programs with medical support and create work opportunities with allowances for high-functioning individuals with disabilities.

“For those with lower functioning abilities, specialised facilities such as hospice care may be more suitable and beneficial,” she said.