From diagnosis to mainstream school: Two parents share their care-giving journey for their child with special needs

Parents such as Mr Glen Tan and Ms Flora Ong go through stages from discovery and grief to acceptance when supporting their children, but they don’t journey alone. There are resources available to support families like theirs, such as medical and Allied Health professionals, educators and fellow caregivers.

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“I felt misunderstood, and that my daughter’s situation was not understood.”

Mr Glen Tan is father to Charis, a child with autism. He shares the challenges he and his family faced in understanding and supporting her needs. Despite the struggles in his caregiving journey, he remains positive and dedicated to her learning and growth. 

Mr Tan with his wife and three daughters. Charis is his eldest child, the first from the right.

 

As educators, Mr Glen Tan and his wife Ming Hui knew something was amiss.

Their daughter Charis was a cheerful and healthy little girl, who met all her developmental milestones at her check-ups. But she would also display some symptoms of autism, such as melting down in crowded places and being sensitive to loud noises, says Mr Tan.

Feeling worried, they started to read up about her behaviours and find ways to help her. They also spoke to early childhood professionals and worked with her pre-school teachers to better understand her needs at school and at home.

“We felt that it was important for us to put support strategies in place and made sure the strategies were consistently carried out,” says Mr Tan.

With each move, they felt more prepared to handle the challenges of raising a child with special needs, but no matter how steady they felt, there would be moments that catch them offguard.

Once when they were travelling, Mr Tan had taken Charis to use the toilet for the handicapped. An elderly lady saw them and chided them for using the facility when they were “not disabled”. He woke up to how his daughter’s condition was a reality to him but an invisible one to the public.

It adds to the challenges of being parents to a child with autism, but over the years, the Tans have learned to appreciate the journey for the “sights and sighs” along the way. 

 

Entering the school years

When Charis turned 6, they decided to to seek professional assessment and recommendation because she was going to primary school soon. She saw a psychologist at the Child Development Unit in NUH, and was diagnosed with Autism Spectrum Disorder after a series of tests and consultations. 

“Strangely enough, we were quite relieved to receive a diagnosis because we were now able to share the report to let the school know her condition and the areas that she needs support in,” Mr Tan says.

With the psychologist’s recommendation, the Tans got in touch with school personnel to find out more about their school’s mission and values, and support for students like Charis. They carefully considered Charis’ strengths, interests and areas of needs, and whether she would be able to cope with the mainstream curriculum and setting.

When they made their choice and settled in, Mr Tan was greatly appreciative of the school’s Special Educational Needs (SEN) Officer who helped made transition into the primary school a smooth process. “The SEN Officer was really a godsend, experienced and very supportive,” he says.

Besides the SEN Officer, the Tans also communicated regularly with Charis’ school counsellor and teachers to share observations of her strengths and challenges, discuss the support she requires, and the progress she has made over time. Support would include establishing routines at home and in school, being mindful of her sensory triggers, and use of visual and verbal prompts. Currently, Charis, who is nine, is in Primary Four and enjoys her days in school.

Music is one of Charis’ interests and she learnt to make music on her own using a software.

 

‘We often feel we haven’t done enough’

While Charis often requires additional attention, the Tans make sure to spend quality individual time with her younger siblings, and also emphasise on self-care. “Only when you have looked after yourself well then you will be able to look after your children well,” Mr Tan reflects.

Mental self-care is equally important. “As parents, we often feel we haven’t done enough, no matter how much we have done or how much of ourselves we have given. It’s important that we don’t let ourselves be stricken by guilt over what we have not done and focus more on how what we are doing is helping our children.”

Mr Tan encourages parents to join support groups because he believes that “parents of children with special educational needs should not walk the journey alone”.

His hopes for Charis? To be independent, have good, lifelong friends, and be able to pursue her strengths and interests in music and dance. He firmly believes the need to “focus on the strengths and make the weaknesses irrelevant”.

“Remember that our children, just like us, are on a journey. They have their own milestones and their own moments which will be different from others, so don’t compare them with others.” 

While he is cognisant of the challenges that Charis and the family will continue to face at different stages in life, he wishes to “celebrate the positive moments and not harp on the negative ones”. “Celebrate when they reach their milestones and enjoy the journey!”

 

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“We attributed it to him being lazy, still young and didn’t think much about it.”

As a parent of a child with dyslexia, Flora Ong recalls the turning point when she discovered her child Guang Hong’s strong passion and aptitude for art. Together with his school, she supported his artistic pursuits as he went on to achieve numerous accolades and awards in recognition of his talent. 

Guang Hong (centre, in National Service uniform) with his mother Ms Ong as well as his father, sister and grandmother at his Passing Out Parade (POP) to celebrate the completion of his Basic Military Training (BMT).

 

Flora Ong first noticed that her son Guang Hong was different when he was in preschool. He was not able to read and spell as well as the other children, and in primary school, he struggled with his studies.

He also showed poor handwriting, frequently misplaced his belongings, and said little by way of sharing his thoughts and feelings. All this affected his self-confidence and in making friends.

“We attributed it to him being lazy,” says Ms Ong of her initial response to Guang Hong’s performance. “We thought he was still young and didn’t think much about it.”

His class tests and examinations became a useful checkpoint as to how he was faring – from his results, Ms Ong knew he needed help. She followed up with his teachers on how to help him in his learning, and worked with the school’s Special Educational Needs (SEN) Officer to look into his well-being.

Though he showed some improvement, he was still not coping well. On their advice, she sent Guang Hong for psychological assessment, and he was diagnosed with dyslexia. 

 

Dealing with guilt and frustration

Like all parents, Ms Ong hoped for Guang Hong to uncover his potential no matter what his weaknesses might be.

The moment would come through his CCA, when Guang Hong joined the school’s Art Club at Primary Four. Through its activities, he discovered his love and talent for Art. His Art teacher would teach him various ways to express himself through his drawings and encouraged him to pursue his interest. Since then, Guang Hong grew in esteem and found his voice through his art pieces.

“The turning point was when his Form Teacher, who was also his Art Teacher, encouraged him to take part in art events, which boosted his confidence further,” says Ms Ong.

Some of Guang Hong’s artworks. His efforts have nabbed him awards and even a scholarship.

 

At the same time, Ms Ong admits that she had hoped for Guang Hong to do well academically, and felt grief and guilt after his dyslexia diagnosis. She became frustrated when Guang Hong continued to have difficulties with his studies despite everyone’s effort and support. She was also skeptical about Art as a viable avenue of education.

“I was caught in this grief cycle, and I didn’t think he was able to make it… I thought it was him not making an effort.”

His teachers and SEN officer saw her struggle and sought to convince her otherwise. They worked hard with him on his portfolio, even as they worked with her on supporting him with his schoolwork and motivational self-talk.

What Ms Ong saw in Guang Hong gradually change her mind towards art and she became his fervent supporter of his flourishing passion. Eventually, he enrolled into the School of The Arts (SOTA) through Direct School Admission, and received numerous awards and scholarships at SOTA and LASALLE College of the Arts. As his self-confidence grew, he worked on his health and fitness, and took on more physical challenges and leadership roles when he enrolled for National Service (NS). Two years later, to Ms Ong’s great joy, he was recognised with top awards for NS men: the Republic of Singapore Airforce (RSAF) Best Serviceman of the year 2020 and National Serviceman of the year 2021 award in the Singapore Armed Forces (SAF).  

 

Empathetic understanding, respectful communication

Through the journey with her son, Flora learnt the importance of empathetic understanding and how this can be achieved through respectful communication. “Every child has the potential to learn and succeed,” notes Ms Ong, who feels she learned this firsthand with her child.

She appreciates the many honest conversations she had with Guang Hong, his teachers, SEN Officer and the community around them which helped her better understand her son, as well as the goals and success that he eventually defined for himself.  Now she doesn’t see problems, she says; instead, she sees that “they just learn differently” and “we should reframe mindsets towards special needs learning as an opportunity rather than a challenge”. 

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