Parenting a child with disabilities

Xavier and MWS staff
Xavier and MWS staff

Like countless young girls, Steph Low dreamed of marriage, children and a blissful family life. During her twenties, she thought she had the life she envisioned … until things took an unexpected turn with the arrival of her second child, Xavier.

Xavier was diagnosed with severe autism, attention deficit hyperactivity disorder (ADHD) and epilepsy. Steph recalled how different Xavier was from other kids.

“At nine months, we observed Xavier struggling to sit up, unlike other children his age. The doctor diagnosed him with developmental delay. His first word, ‘Mama’, came after a long wait, leading us to initially believe it was a speech delay until we learnt he had special needs,” Steph, 49, explained.

Then came the seizures. Xavier’s seizures began at the tender age of 18 months old, with hospital visits getting more frequent as his condition worsened over time.

Taking toll

In 2011, Xavier suffered a sudden seizure in school that caused him to fall and suffer a hairline fracture in his skull. Worried about his safety, Steph decided to withdraw him from school and care for him full-time.

“It was an incredibly challenging time for my family. My husband and I lost our jobs. We had to borrow money to cover Xavier’s medical fees and our living expenses,” Steph recalled.

Young Xavier
Young Xavier

Unknowingly, Steph devoted so much of herself to caring for Xavier that she inadvertently neglected her two daughters, now 24 and 11.

“I was under immense emotional stress trying to manage Xavier’s condition, and that had the biggest impact on my eldest daughter. I sent her to live with my mother for six years, but she felt abandoned, like I had chosen Xavier over her,” shared Steph. To this day, the weight of her past neglect continues to cast a long shadow over their family dynamics.

For two decades, Steph had been Xavier’s primary caregiver, juggling this responsibility with work and other family commitments.

Then in February 2023, after Xavier’s discharge from the ICU for a severe lung infection, Steph found herself struggling to care for him at home as he became bed-bound and required tube-feeding and maximum assistance in his daily living.

“I couldn’t manage Xavier on my own. He kept pulling out his feeding tube, and I didn’t have the strength to reinsert it myself. Relying on clinic staff wasn’t sustainable due to the charges,” explained Steph. “Also, my son was growing taller, and I couldn’t hold him for extended periods.”

It was then that Steph decided to seek help. Today, Xavier receives round-the-clock care by a multi-disciplinary team in a safe environment at MWS Bethany Nursing Home – Choa Chu Kang.

A new lease of life

In the Nursing Home, Xavier, now 22, takes part in activities like music therapy and games to improve his social and physical well-being.

“Seeing Xavier being engaged meaningfully and taken care of, I feel a sense of relief and can now focus on my other children. I can now help my youngest daughter with homework and volunteer at her school,” shared Steph. “I can also concentrate better at work, and feel less stressed.”

Xavier (in bed), Steph and Xavier's younger sister
Xavier (in bed), Steph and Xavier's younger sister

Financially, Steph’s household income only allows the family to support themselves and their two schooling daughters. They have no other income to pay for Xavier’s nursing fees. Hence, the family is very grateful for Wesley Methodist Church’s sponsorship, which has greatly eased their financial strain.

“As a full-time caregiver, I had to make sacrifices that brought numerous challenges to my family,” said Steph. “With MWS’ help, I can now able to focus on securing a better future for my family.”

With just $1 a day, you can help someone get out of the poverty cycle

According to a 2020 study*, 1 in 8 households in Singapore cannot cover their basic living needs. Many families, like Steph’s, face complex challenges that perpetuate a cycle of poverty. These include financial distress, fractured relationships and health issues. They require ongoing support and holistic interventions to break free from this cycle. Your gift of $1 a day can empower these families to make gradual progress towards a brighter future.

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* Definitions and Measurements of Poverty 2020, Irene Y.H Ng, Dept of Social Work (NUS, 2020)

By the MWS Communications Team. / Photo courtesy of MWS