Angela Wong, (not her real name) noticed there was something not quite right with her son very early on. As a toddler, Ming was unusually energetic, slept very little and could never sit still. Even after two years in kindergarten, he could not remember the first few letters of the alphabet and would write numbers backwards. She pointed out her observations to his kindergarten teacher, who dismissed her concerns.

A gynaecologist well-versed in early childhood education, Wong suspected her son may be hyperactive. Her suspicion was confirmed when the preschooler was diagnosed at a private child assessment centre with attention deficit hyperactivity disorder (ADHD) and language delay.

Ming’s name was added to a long waiting list for government-funded speech and occupational therapy. However, by the time he was scheduled to begin the sessions, one year later, his time in kindergarten would almost be at an end, meaning he would no longer qualify for preschool rehabilitation services.

Many parents of children with special needs in the government education system face the same dilemma. The average waiting time for subvented preschool rehabilitation services in the 2014/15 school year was just over 19½ months, compared to 10½ months in 2009/10. After kindergarten, the wait increases. By the time the children are in primary school, they find themselves in one queue after another through various procedures, from identification and diagnosis to receiving training and educational support.

Aware that the most rapid development of a child’s brain occurs before the age of five, Wong decided to skip the waiting list. She took her son to see a private occupational therapist, who helped him enhance his vestibular system, to improve his sense of balance and spatial orientation. She also enrolled him in language classes with a focus on creative writing.

Her efforts have borne fruit. Despite his learning difficulties, Ming kept up with the average standard of children in primary school. But the progress wasn’t cheap. The family had spent more than HK$8,000 (US$1,000) a month for more than four years on educational and medical expenses for Ming, and Wong quit her job to become a full-time mother.

Hoping to receive government assistance, Wong urged the primary school to refer Ming for a new assessment – since any evaluation made before primary education is deemed invalid. Her request was rejected by the school as being unnecessary. “As a parent, I did a lot to help my child catch up, but that doesn’t mean he no longer has special needs,” says Wong, who was upset by the school’s inaction. “Does he have to be at the bottom of the class to qualify for assessment?”

In the end, Wong paid HK$8,000 for a diagnosis at a private practice. There, the occupational therapist suggested taking Ming to see a psychiatrist. At a public hospital, this would entail a three-year wait. So Wong once again resorted to private care. The medication prescribed by the psychiatrist significantly improved Ming’s ability to concentrate and helped his grades, but it was also a big drain on the family’s finances.

Although government schools receive a grant for each student with special needs under a three-tier funding model, Wong says: “I honestly don’t know where the money is going.” The only government assistance Ming receives is a 30-minute group speech therapy session every six weeks.

To address the special education needs of Hong Kong children, the Social Welfare Department launched a pilot scheme for on-site preschool habilitation services in 2015, which cut the 6,000-plus waiting list by almost a half.

This July, Chief Executive Carrie Lam Cheng Yuet-ngor announced new measures to be implemented in the current school year, such as introducing the role of a special educational needs coordinator in primary and secondary schools, and increasing the teacher-to-class ratio. Yet these efforts are a drop in the ocean, critics say.

Legislator Fernando Cheung Chiu-hung, chairman of the Legislative Council’s subcommittee on integrated education, says even though the Education Bureau has listed five principles for integrated education – including early intervention, a whole-school approach and homeschool cooperation – it is all talk. “I don’t see the bureau’s commitment to making the system better for students with special needs,” says Cheung.

In 2015, Cheung proposed establishing a legal mandate for an individualised education programme (IEP) for each special needs student. “Each student has their own unique needs, so our approach has to be multidisciplinary. IEP is a very useful mechanism because it helps engage each stakeholder – parents, schools, teachers – so everyone is well aware of the student’s condition and what they need to do to help the student,” says Cheung. But his proposal met with strong resistance from the government.

With little support from government and schools, parents are turning to one another for help. Grace Ng Chau-mei searched high and low for resources to help her severely autistic son, and ultimately came to the conclusion that: “Nothing is more essential than parental education. As parents, we are our children’s best teachers.”

Now superintendent of the Louis Program Training Centre in Hong Kong, Ng is sharing her experience with younger mothers. Through a three-week curriculum, the programme guides parents of special needs children on how to develop an integrated IEP – one they can implement at home. The course costs HK$2,980 for one parent or HK$5,689 for both, while subsidies are offered to poorer families. When the three-week programme ends, support groups are on hand for parents to seek advice and encouragement from others who have been in the same situation.

Jessica Wu Kit-man is one of them. She joined the programme a little over five years ago when her twin boys were 2½ years old. The elder twin, Yeung Ho-chun, was diagnosed with developmental delay, while the younger boy, Yeung Ho-kit, had autism.

Ho-chun is now in Form Three at a mainstream school, where he is doing fine; whereas Ho-kit is studying at a school for children with mild intellectual disabilities. “I am really grateful because I know very well that, if not for our efforts, their condition would be much worse,” says Wu, who witnessed the effectiveness of early intervention.

Wu took her twins to any activity she thought could be helpful – skipping to improving their gross motor skills, sensory integration and speech therapy sessions – she even converted a space in their home into a sensory room so the two brothers could play on a daily basis.

“It was difficult in the very beginning, because we couldn’t immediately see the results,” Wu admits. But successes such as those of Grace Ng kept her going

Just as remarkable as the improvement in her sons’ behaviour and cognitive skills is Wu’s positive attitude. She shows no signs of weariness despite the challenges, and she attributes this to the reassurances she has received along her parenting journey.

Wu recalls a particular episode at church when Ho-kit’s Sunday school teacher called after her at the end of the class. She immediately panicked, because complaints from teachers are not unusual for parents of special needs children. But to her surprise, the teacher had a complement – she had noticed Ho-kit was gifted at music.

“I cried and thanked her for seeing the good in him,” says Wu. “Because teachers could easily find many faults in him, but instead, she was able to notice his flair for music, even in such a large class.”

Positive attitudes do not come easily, given how taxing caring for children with special needs can be. For Wong, it took a close shave with death to allow her to let go of the frustration that had overcome her during the first few years of motherhood.

“I was really troubled. I didn’t understand why, even after pouring my heart into teaching my son, he was still not as good as other children,” Wong says.

Her exasperation persisted until she was diagnosed with breast cancer three years ago. “I didn’t have any unhealthy habits, and it is quite rare for women my age to have breast cancer. So I think it had something to do with my mounting stress and grievance.”

Battling the disease was not easy but it inspired a change of heart in Wong, who has since altered her parenting approach. The homework battle with her son has been delegated to her husband, and rather than constantly trying to correct Ming’s behaviour, she gives him more freedom and space. But the most important factor is derived from a single change of mind – accepting her son for who he is.

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