Families are often the first pillars of support for children with disabilities (CWDs). As with any child, the way that parents treat their children when they are young will have a lasting impact on their futures. Since parents often also know their children best, they are usually the strongest supporter of doing whatever it takes for their children to reach their fullest potential.
Levelfield principal consultant Judy Wee has seen how parental support is crucial, in her personal experience and her work. Also a senior manager from Muscular Dystrophy Association Singapore (MDAS), Judy supports children with muscular dystrophy and related conditions on matters in and out of school. Her nephew David was born with quadriplegic cerebral palsy, which means he is unable to walk, stand, or talk. “When he was first born, initially [his parents] thought that he was intellectually disabled because he was non-verbal,” said Judy.
However, his parents soon realised that their son was not intellectually disabled. He was able to respond appropriately to them. Since he could not speak, they taught him simple sign language and how to write letters with his fingers. Soon he learned to spell words on a communicator, which is always hooked onto his chair, and from which he has since been inseparable.
“[It] was very important, to be able to say something, to read, to spell. Because if you can’t spell you can’t even communicate. However severe [the disability], if a kid is already non-verbal, the important thing is to make them be able to communicate. Teach them languages. These are the very kids that need the most attention.”
While David was initially placed in a special school for a few years, his parents moved him to a mainstream neighbourhood primary school that was willing to accept him, “as a kid”. Since he had no academic qualifications from his years in the special school, he had to start afresh.
“Fortunately for him, he was able to spell, he was able to use a communicator to speak. He did Primary 1 in six months, Primary 2 in six months, and then Primary 3,” said Judy.
Government and organizational support for families
In Singapore, support for people with disabilities (PWDs) and their caregivers and families are addressed by a variety of partially government-funded organisations known as voluntary welfare organisations (VWOs). There are also special schools for children with cerebral palsy, hearing or visual impairment, and autism spectrum disorder. Mainstream government schools may accept children with disabilities at their own discretion. This usually happens if the student is largely independent or they are able to arrange the aid they need – for example, to transfer to use the toilet, an adjustable table, or communication or writing aids.
Additional financial support is usually available through contact with the organisation catering to a specific disability. Looking for this support also depends on the will and availability of parents of CWDs. “There’s no one to guide the parents. Parents don’t know what’s out there for them, and they’re just relying on what they know. And sometimes I think parents who are ill-informed get the raw deal,” said Judy.
Sherena Loh, executive director of MDAS, acknowledges the burden on parents of CWDs to find a school that is the best fit for them. Parents also need to be able to afford assistive or communicative devices, and actively look for ways to ensure that their children can live independently for their own future.
“[You need to] speak, and dare to fight. Family support is important, but let the child grow by letting them immerse into society and experience challenges. If the child is sheltered, they don’t see a need to shape their lives; to have a life and a future.”
Parents are just the first step in creating the right environment for children with disabilities to learn in their best way. Institutional support is just as important: special schools may need to consider modifying or adapting their curricula, while mainstream schools may need to be more accepting and supportive of CWDs who can cope with their curricula.
Ultimately, it’s about finding the right combination for each child. “Kids, when given the opportunity, can shine,” said Judy.
This article is a part of our #AbleFamilies campaign in Singapore. Stay tuned for real life stories, advice and experiences from people who believe in and represent the potential of all kids. By now empowering the thousands of kids with disabilities in Singapore and supporting their parents and caregivers, we strengthen the next generation of citizens to promote a more inclusive Singapore.
