Boy with rare speech disorder becomes a recluse to avoid misunderstandings

Many children can pick up speech effortlessly, but not for Emmanuel.

The 15-year-old struggled with articulation.

Emmanuel was born prematurely at 32 weeks and faced multiple medical conditions, which affected his communication, cognitive and motor skills.

Ms Janice Tay told The New Paper that she observed a delay in her son's speech and motor skills as he grew up.

"It was a moment of emotionally overwhelming reaction, a mix of relief, sadness and uncertainty," said the 45-year-old in recounting the time she received the diagnosis of her son's medical condition.

Ms Tay had taken Emmanuel to countless doctors and specialists in search of an answer. She received a mix of responses, with some of them dismissing her concerns.

A developmental paediatrician recommended a range of assessments which included speech and occupational therapy, early intervention programmes and social skills training.

Emmanuel was eventually diagnosed with apraxia, dyspraxia and global developmental delay (GDD).

Apraxia, a rare speech disorder affecting two in 1,000 children, caused Emmanuel to struggle with articulation and the formation of each sound had to be explained at length to him.

"It was disheartening and frustrating. After moving on to a new sound, he would forget the sounds he had previously learnt," Ms Tay recalled.

The struggle with speech gave Emmanuel anxiety and made him a target for bullies in a mainstream setting, causing him to become a recluse. He was very worried about causing misunderstandings when communicating with others.

"Our experience with Emmanuel's early education and therapy options showed that a one-size-fits-all approach simply didn't work for children with developmental challenges," said Ms Tay, adding that the "lack of personalised support" hampered his progress.

"Despite our efforts to help Emmanuel adapt to mainstream settings, the rigid structures and limited understanding of his needs resulted in increased anxiety and isolation."

In 2017, Ms Tay started Bridging The Gap, an early intervention centre.

"The decision to leave my career in finance wasn't made in a single moment. It was a gradual, deeply personal realisation that my son needed me more than my career did," she explained.

Ms Tay aims to provide a "nurturing and structured environment" where children with developmental needs can receive the individualised support they require to thrive.

"Beyond therapy, I wanted to create a community where families could find guidance, reassurance and the right tools to help their children succeed. My ultimate goal is to ensure that no child or parent will have to navigate this journey alone."

While Ms Tay acknowledges that Singapore has made progress in supporting individuals with special needs, she believes there are still key gaps to address.

These include improving access to and affordability of early intervention, as well as raising societal awareness and fostering inclusion to reduce stigma and create a more supportive community.

"Every child deserves the opportunity to learn, grow and thrive."