Boy's legacy helps others with speech impairments

PUBLISHED : Sunday, 05 October, 2008, 12:00am
UPDATED : Sunday, 05 October, 2008, 12:00am

The couple is surrounded by piles of colourful toys inside a small office in Tsim Sha Tsui. Sitting on two miniature chairs designed for young children, Raymond Wong Ka-ling, 53, and his wife, Viola Wong, 50, look anything but uncomfortable.

The small chairs and brightly coloured toys belonged to their son, Benjamin, who was born with Down's syndrome and died six years ago at the age of five. His death was an accident, which neither parent can bring themselves to talk about.

Now his playthings belong to a charitable organisation providing professional speech therapy to children and teenagers with communication difficulties.

Mr and Mrs Wong set up the organisation and named it Benji's Centre in memory of their beloved son.

The birth of a child is almost always a blessing. Benji's birth was an even greater joy for Mrs Wong: the couple had been trying to have children for a long time and she was 38 when she became pregnant.

Benji was born in December 1996. The fact that he had Down's syndrome made little difference to the joy the couple felt, though they knew the future would be more difficult than they had expected.

Benjamin Wong had to stay in hospital for 11 months during the first 17 months of his life. Meanwhile, the couple's living patterns changed dramatically. Whenever they went overseas on business, the first thing they looked for was a local telephone directory.

'Whenever we went outside for business trips, we read the telephone directory looking for suppliers of educational toys for special-needs children,' said Mrs Wong. 'We wanted to get suitable toys for Benji. It is so expensive to get these toys in Hong Kong.'

Children with Down's syndrome suffer from delayed speech development. They have difficulty expressing themselves or understanding others without proper training and therapy.

According to data provided by the Department of Health, there were 2,400 new cases last year involving speech and language delay or disorder.

The cause might be cognitive delays, impaired hearing, visual impairment or social or emotional disorders. It could also be part of other developmental problems and disorders, such as mental retardation or autism, or purely a language or speech problem.

The Hospital Authority, the Department of Health, the Education Department and some subvented organisations such as the Heep Hong Society and Hong Kong Caritas offer speech therapy. But the waiting times are generally considered to be too long.

The Department of Health provides speech therapy assessment, review and interim support for children with developmental disorders or language problems. About 5,000 appointments were made last year.

'It will usually take half a year to wait for the assessment, and then another two to three years waiting for therapy,' said Janet Ng Ho-yee, chairwoman of the Hong Kong Association of Speech Therapists.

'Many parents decide to turn to private sessions before the government service is available.'

But at a cost of HK$400 to HK$600 for each 45-minute session, it is not a cheap option for many parents as the process is long.

The Wongs, however, had the means to try every avenue. Mrs Wong remembers phoning the Watchdog Early Learning and Development Centre nearly every day to get Benji a place to have therapy and training.

At the same time, they paid for private speech therapy sessions.

'It was HK$1,600 for 45 minutes 101/2 years ago. It was not cheap. I posted a 'zero consumption' note in my room. I just wanted to save all the money for my son,' said Mrs Wong.

'I even called some relatives to give me their unwanted clothes. That was embarrassing,' she said.

Embarrassing or not, she saved more than HK$10 million for her son during his life to cover tuition and medical fees.

One therapy session per week was not enough. 'We thought this was not enough, so I went to study speech therapy part-time at night for six months, and my husband went to study the same subject part-time for three months,' said Mrs Wong.

Given Benji's progress, the couple strongly believes in speech therapy.

'Benji's English was very good and he could express himself well. This was very important as he became more confident when he could communicate with others,' Mr Wong said.

'I remember the way he held his classmate's face and said 'Look at me W-A-L-K' to correct his classmate's pronunciation,' Mrs Wong said, smiling with tears in her eyes.

The pair were happy to see their son making progress.

Then one terrible day, he left them.

The couple's living patterns had to change again. Having saved plenty of money for their son's needs, they decided to spend it helping children who faced similar problems.

At first, they thought of donating to non-governmental organisations that worked in the same area. But after some reflection, and knowing the amount of money and time parents had to spend organising speech therapy for their children, they decided Benji's money would be better spent on a centre for that purpose.

In 2004, the Wongs set up Benji's Centre with the aim of helping lower-income families, in particular.

'Time is very precious for these kids. It is important to let them have speech therapy as soon as possible,' Mr Wong said.

'Therapy is much more effective when the kids are aged between zero and six, which is the prime time of learning. However, many kids have been wasting time waiting for the service.'

Sixty per cent of the centre's clients, most of whom are from families on the Social Security Assistance Scheme, have their fees remitted, while for other low-income families, the fee is about half that charged by private-sector organisations.

'Now we are serving 100 kids, but there are still 88 kids on the waiting list,' said Mrs Wong. 'Speech therapy is a time-consuming process; some kids will only speak one or two sentences after coming for nearly two years.

'One of our therapists tries to teach a kid to say the Chinese word for wardrobe, but she cannot comprehend the word at all. When our staff paid a home visit to her family later, we realised the girl does not have a wardrobe in her home. So she has no concept at all.'

Such examples illustrate why it is even harder for lower-income families to cope with having a child with communication problems.

After Benji's death, the Wongs started up a successful chocolate business, with part of the profits also going to the centre.

'We hope there is going to be a clinical psychologist stationed in our centre, as we believe the parents of these children also need support and counselling,' said Mrs Wong.

Practitioners of the profession agreed the centre could help fill gaps in the present service.

'Owing to limited resources, it is inevitable that these needy children have a long wait for the service. Consider our centre as an example,' said Stella Wong Wai-mui, executive director of the Watchdog Early Learning and Development Centre. 'These kids have to wait at least nine months to a year.

'Having this privately run charitable organisation could save the waiting time.'