by Aqilah Teo
These words, dear Reader, resonated with me.
To me, they meant “equal rights and opportunities”.
I remember how my mother had often mused that Jan’s public transport fare concession had been snatched away from him since when he was twelve. Not only did he have no school to return to, there was to be no more movies and student discounts of any kind. My brother was no longer recognised as a child deserving what any other regular boy or girl did.
We would have had to fight for my brother to have what regular children were entitled to. It would have to be yet another battle. If metaphors could be taken literally, my home would be an armoury and arsenal rolled into one. King Arthur would have been envious.
With my background in early childhood education, I am familiar with the United Nations’ “Conventions of the Rights of the Child”. Jan was being denied a lot of those rights, and he was not the only one.
It led me to the question: Are not special needs children and people in this country Singaporeans too?
Denise gave me the answer.
Yes, they are.
I shall tell you about the Education Village that Denise visited in Darlington, England, some years ago. It was then that a new idea was being tried out, with three schools housed together: a mainstream primary school, a mainstream secondary school and a special school for students not able to follow the mainstream curriculum.
This gave all the students the chance to interact with one another during breaks and in the school halls they shared. Denise even saw some older students helping disabled peers in a therapy room during their free period.
That is the dream. It is not about having to create awareness at the eleventh hour, but about having children and young people growing up together, and in the process, understanding and accepting others who are different.
But the eleventh hour is still not too late.
There is a thick chalk line dividing those in the community who are abled, and those with special needs. It is a line that is difficult to rub away, but it is not impossible.
Denise has been working away at that chalk line with a colossal eraser. And she is waiting for the big water hoses to arrive as well.
The 3rd Step
The lady is trying her utmost with the help of her staff and fellow volunteers.
Whatever that is humanly possible, as my father likes to say in response to everything. I am fond of joking with my mother, ‘As far as I know, I am still human. If I wake up one day and find out I’m not anymore, I’ll be sure to let you know.’
Well, I am sure that if Denise were to wake up one day and find that she could do the tasks of a hundred men, ninety-nine people would suddenly find that they are free to go on a leisure cruise.
She strongly believes that just as special needs families ask for remedies, families themselves are important ingredients in these medicinal concoctions.
In 1999, when her son was diagnosed at the age of three, Denise picked up her shoes and began volunteering at the Autism Resource Centre. What she saw back then was a simple educational programme that was not enough to meet the needs of children on the wide and varied autism spectrum. This propelled her and a group of volunteers to start Pathlight School in 2004 for those who could manage the mainstream curriculum but require special support.
Pathlight was the first autism-focused school in Singapore, and was to be the first of three such schools in Singapore, followed by Singapore Autism School (renamed Eden School when Denise and team moved in to help) and the St Andrew’s Autism School.
The good-humoured lady said at our meeting, half-laughing, ‘Of course, everyone complains. I complain. We all complain. There is no harm in complaining together. But do let us work and act together as well.’
I have mentioned that I find the word “improvement” to be a tricky one when it comes to special needs provisions.
Denise too talks about the gaps that exist, the needs that are still unfulfilled. She knows better than anyone that the journey is far from over. Despite the struggles of so many, what we have now is not enough. It would be unfair to Jan for me to say otherwise.
But this does not diminish the phenomenal things people like Denise and her team have achieved. Because of them, hope is being fortified, brick by brick, cent by cent, step by step. Their years of backbreaking toil and labour have resulted in the thriving systems, programmes and schools that now stand under their care. It is their Great Wall of China.
Hence I can say that the standard has been set by Denise and her team. They have lighted a path, shown a way. There can be no talk of having no example in Singapore to follow and build upon.
Today, Denise is a jolly mother, spokesperson and advocate. But she retains the skills and savvy honed during her stint in the corporate world, and taps on them to run these organisations like professional entities.
She supervises not only Pathlight and Eden Schools, but also ARC and AAS which operate early intervention centres, the Eden Centre for Adults and a large regional training centre, equipping hundreds of teachers and professionals in autism education. She manages it much as a professional juggler would. Sometimes she does this standing on a plank balancing on a rolling cylinder. And sometimes people suggest to her that she should light her juggling pins on fire to make it all the more interesting.
To this mother, these children deserve nothing less than the best.
All that effort and heartwork calls out to you the moment you step into the Pathlight School grounds.
The 4th Step
I arrived at the Pathlight Ang Mo Kio Campus 1 on the day of the meeting. Within ten minutes of entering the school, I was goggling like a child in a candy emporium.
It is a place of beauty, to rival the best of mainstream primary and secondary schools, even junior colleges. Children were in lovely uniforms, transitioning between classes, having breaks in the cafeteria, having Physical Education lessons. The school has an elegant bookshop, wonderful open grounds and proud buildings, housing happy learning children.
The cafeteria was a delightful place, with the chatter and laughter of the children and the voices of teachers. It also looked like one of those chic, professionally decorated cafes where hipsters lounge about drinking fancy caffeine beverages. There was no ruckus with all the activity. You could not have called the sounds around you noise. It was nothing less than music.
That was where we met Denise. She came flying over to us with her notes and books and pens and enthusiasm. We exchanged greetings, and she told us about the workings of the cafeteria. The stalls are manned by autism youths, graduates who had received job coaching. Sometimes teachers or supervisors peep in to see that they are doing alright, but they run the stalls mostly by themselves.
I do not know how to run a stall. These children probably have a better sense of how to run a business. I am not joking.
And I remember the little details. We had soy milk from one of the stalls. It was delicious. It reminded me of the time Jan cooked rice and mixed an assortment of miscellaneous beverages in the kitchen without my mother’s knowledge, with messy but unexpectedly edible results.
I remember doing or saying nothing much for the first few minutes; I kept on staring at my surroundings. I had landed right in Denise’s Wonderland. Dear Reader, you ought to meet at least one person like her in a lifetime.
Students at Pathlight are able to manage mainstream schooling to a large extent. They are then taught and groomed to be ready for regular society. The school enchants them with self-esteem and confidence. The aim is for these children to grow up with all the access to further education, employment and the social world that regular children have.
Pathlight School is not an exclusive, private school for the rich and famous, with parents who wear diamonds and smoke imported cigars; a great number of the students come from needy backgrounds. The enrolment is now over seven hundred, with another hundred children in ARC’s Early Intervention Programme which is also based in the same facility.
Hundreds of smiling autistic children. It is a fact no one can argue with.
The 5th Step
Denise and her team are trying their utmost to meet the demands of the special needs community. According to the ARC, two hundred and sixteen new cases of autism are being diagnosed every year.
I was introduced to some members of Denise’s team. There was Patricia Cheng, Vice Principal of Eden School. She has a background in psychology and more than twenty years in the field. Paula Teo is Senior Manager of AAS’ early intervention programmes and adults’ services. Stephenie Khoo heads ARC’s Early Intervention Programme as Principal, overseeing the diagnosis, therapy programmes for the two- to six-year-old groups.
But never mind titles. It was clear Patricia (whom everyone affectionately called “Pat”), Paula and Stephenie were passionate about the field, the children and youths and about helping. No one sings their tales of heroism, nor asks for their autographs, but they keep ploughing ahead like a steam train. (I say a steam train. They do not yet have enough means for a bullet train. But theirs is a very determined steam train which deserves shiny new wheels and tracks and the finest fuel.)
Another personage I met was one of the students, a boy named Desmond, who was spending his break time in the cafeteria. He approached us and asked us if he could tell us a joke. (Denise fondly called him their resident comedian.)
He asked, ‘Why is the dog afraid to go out into the sun?’
‘Because he’s afraid of a sunburn?’ one of us guessed.
After a few more dubious answers from us, Desmond responded with a triumphant, ‘Because he’ll turn into a hotdog!’
I chuckled politely because I was in public.
At home later that evening, I remembered the joke and our collective expressions as we tried to solve the riddle, and laughed myself to tears. I was laughing so hard my parents ran to check on me, thinking I had had an accident and was hollering for help.
The 6th Step
Denise and her team would do whatever they can for a special needs individual, whether it was a student or an alumnus, to be trained and find work.
She said, ‘ARC is starting a new Employability and Employment Centre this year. The government is also rolling out more help for those with special needs in 2012. There are the new extra benefits that will be given to employers who hire special needs employees.’ She went on to explain what it was all about.
For instance, the Special Employment Credit will be granted to employers who hire Special Education school graduates. Employers will get a credit of sixteen per cent of these employee’s salaries. The Workfare Income Supplement Scheme will also be extended to all working graduates from Special Education Schools. These schemes have big and complicated names, but it simply means more special needs students will be able to have jobs and earn money.
Denise added that employers might be willing to employ special needs workers. But the latter might not be ready for outside employment, and the challenge is to prepare them for working life.
‘Even if they are not ready for the companies outside, as long as the individual is ready to work, we can try to give them a job at either Pathlight or Eden. It can be anything they want and are able to do,’ she said with spirit. ‘If they can wash windows, I could set them to wash as many windows in our facilities as they liked. That would be their job. If they know how to man food stalls, they could work in our cafeteria. Even if it was something simple like sifting flour or preparing ingredients for cooking, we would employ them to do that with proper pay. As long as the person is trained and willing to work, they make the choices and the possibilities are endless. That is what we believe.’
Denise then brought us to meet with twenty-four-year-old Amin Junri.
‘He has the most amazing work ethics,’ she beamed. ‘He’s a wonderful worker, and honest and focused. He would be there in the cafeteria during school holidays, working away even when no one else was around. I was watching over him once from behind the steering wheel of my car; I was sneaking as I had not wanted him to catch me looking out for him. He is an extremely hard worker.’
When we met Amin, he was working in the school kitchen. His colleague was not in that day, so he was covering duties by doing the washing.
Denise showed us the task card that he carried with him.
‘They all have one,’ she explained. ‘It’s meant to help with their structure, and routine. They know what to do and when.’
She introduced us to the tall young man, and we said hello.
‘And what do you normally do, Amin?’ Denise prompted.
‘I work at the stall,’ he replied proudly.
‘And what do you do there? Can you flip pancakes?’ she asked.
‘I can flip pancakes, and I prepare food, and I man the stall,’ Amin smiled.
“That’s very good, isn’t it?’ said Denise. ‘Do you like working here?’
‘Yes,’ he said, with a huge grin.
After that brief meeting, we shook hands and thanked him and took our leave.
I recall that look of absolute pride on Amin’s face. He was proud of his job, and proud to be working. He loved his working environment and regarded his work and workplace with joy. I do not think he has blue Mondays. One wonders how many regular working people can claim the same.
The 7th Step
We spoke too about Eden School. It is a special school, but more. It caters to youths up to eighteen years old and aims to be a vocational school of choice for those with autism for whom mainstream curriculum is not suitable. It is a place where special children and youths are taught not only job skills but about daily living, people and life itself.
‘Do you know the story of the Garden of Eden?’ asked Denise.
‘Yes, yes I do,’ said I.
‘That is what we wanted our centre to be – a Garden of Eden for the students and trainees,’ she said.
Paula, who runs the Eden Centre for Adults, a day activity centre for individuals with autism older than eighteen years, mentioned that both the Centre for Adults and Eden School are now close to full enrolment capacity. I think they are trying to make it grow as fast and as well as they can, but there are challenges to be addressed; the main one is insufficient trained manpower to operate these services.
‘Eden could hardly exist without Pathlight,’ Paula said. ‘Denise set the stage for Eden to be built when Pathlight was established. Now we share resources, and adopt models and frameworks that work in Pathlight itself, for Eden.’
Denise was very emphatic about what is still needed.
‘It is about scaling, duplicating the service models so more can benefit. And we need more people with rigour,’ she said. ‘We need people who do not set low expectations, and who recognise the urgency to fulfill them. Without a sense of urgency, things get overlooked and are forgotten about. That’s why so many are still left without services.’
Denise also encourages educators and principals, anyone who is important enough to make a decision, to be open to the idea of mainstreaming children who are ready. They are all citizens of this country, like any of us regular people and deserve to be treated as such.
I daresay Jan, for instance, is as patriotic as the next person. He is very fond of our transportation system, and has probably seen more of the country than many of his regular peers.
The day we have Pathlight- and Eden-like schools and adult centres spread cross-country will be the day that Denise’s dream, and the dream of so many others, comes true.
I do not know about other games of chess, but this one is far from over. It has only begun.
Lanterns of hope are lit. Many more will yet be.
Jan
If folks were to ask my family what Jan is doing now, it would be a very bland sort of answer. One would think, or hope, for a happy ending to this story. If I were writing fiction, I might say Jan has turned the tables against the odds and gone on to become a world famous composer in Europe, and people gather from all over
the world to hear his latest works. I could also tell of how he has become a renowned painter who travels the world, and paints fantastic scenes and people that he comes across, and sells his paintings for millions of dollars. He might also be a prodigal chef whose fantastic culinary inventions are sought by royalty. But I am not writing fiction.
This book does not have a real ending. Ours is a story that rolls on, as do the stories of many others. Jan remains at home with us. We aim to make him happy, and the family bobs up and down like a ship on the seas. We can never tell what will happen next, but one does hope for the good things.
Jan is currently recovering from another phase where he refused to leave home at all. He had, literally, not stepped out the front door for nearly two years, not even to go out for a walk to the shops or to have dinner outside which he had liked so much. (I might perhaps have wished a little too hard for him to stay home with family.)
Through a series of unexpected events, he is once again enjoying outings now. It may not seem like very much but we celebrated.
On cranky days, Jan might protest loudly whenever anyone in the family is talking, so we have a lot of unfinished conversations lying about the house. Those are the unimportant ones; the important ones have to be carried out in installments. (It can be quite off-putting when you have reached an exciting point in a story you really want to tell and then suddenly a grumpy roar bests your voice. You try to edge in another two or three words but, met with ever more grumpy roars, you give up.)
Jan plays his video games and his favourite music. He has his good days, and days that are not so good. He has the luxury of choosing between night and day; when he tires of being a diurnal creature, he will become a nocturnal one. It is not too much of a luxury for the rest of the family, especially my mother, as the clocks in the house seem to spin their hands every which way. So my mother could be busy cooking at three in the morning or deep asleep at one o’clock in the afternoon.