Ordinary Stories in an Extraordinary World

by Aqilah Teo

  My mum would go, ‘Look Jan, a bird flying!’ or ‘Look at that cat!’ or ‘See how green the trees are!’ And Jan would look and observe.

  My brother can make for quite the diligent scholar when he is in the mood. Jan likes books and stories, and I think he would be a great reader if he could. He is also bilingual – he speaks two languages and even understands some Japanese. This last is a mystery as I have never taught it to him.

  I recall this gangly youth, one of Jan’s former schoolmates, who could not speak and and would stay very still. You could not know anything about him just by watching him sitting ever so silently by himself. Sometimes, in the school van, he would venture to lay his head on his mother’s lap, solemn and unmoved by anything. I had remarked about this to my mother.

  ‘Sometimes he is quiet,’ said she. ‘But his mother said that he can have the most fantastic meltdowns, all elbows and knees on the floor. That is not all. He can also cook very well.’

  ‘Cook?’

  ‘His father is a chef,’ my mother explained. ‘He taught Wei Hong how to cook.’

  ‘Wei Hong can cook by himself?’ I was amazed.

  ‘He can prepare simple dishes,’ said my mother. ‘And he is still learning. He likes to learn to cook. It is the only thing that he ever shows any interest in.’

  Teach Jan, my mother would tell me, teach him anything you like. But I always draw a blank. I suppose I am used to thinking of him as my teacher and not the other way round, as there are many fantastic things he comes up with. What is more, Jan is bossy. He would rather teach than be taught.

  ‘Just try,’ my mother would say. ‘There are stories of people with autism who draw and paint, and have their work sold for millions of dollars. That would be something. If he does not make millions of dollars, learning something new would at least make him happy.’

  I had taught Jan how to rollerblade years ago. It would actually be unfair for me to take much credit. He had gotten up on the in-line skates by himself and I had barely spoken two words before he was skating all over the place with glee.

  I had less success teaching him to ride a bicycle. He had been offended when the bicycle would not cooperate with him, refusing to stand upright while he was trying to get on it. Jan had also taken a bad fall once on his training bicycle, which brought the curtains down on that idea for good.

  My most recent venture was trying to teach him to play the keyboard. Jan used to own a toy one when he was younger, and had spent much time tinkering away on it. It is an interesting project as I can play neither keyboards nor pianos. But we managed by following the preset musical arrangements, with the aid of the little screen showing you which keys to hit to play a tune.

  Jan loves music very much and he liked the idea. After some time, however, I thought he had lost interest. One night, I awoke to tinkling sounds. It was Jan, poking at the keyboard and playing “Twinkle Twinkle Little Star”.

  The 7th Step

  One somehow always took for granted that Jan knew things. He often seemed to know things he had not been taught.

  Jan once managed to wriggle his way into the driver’s seat of the family car, a gleam in his eyes. My father had gone out to fetch something. The little hero had managed to settle himself and was already reaching for the belt buckle before we hauled him to the backseat.

  One knew he could not drive for two reasons:

  1) It would have been illegal.

  2) We would not have let him.

  Also, his feet could not reach the accelerator. Other than these points, if anyone had asked me then if I thought Jan would be able to manoeuvre the car out of the car park, I would have given a matter-of-fact yes.

  I never realised how much I did not teach Jan until I became a preschool teacher. I also realised that Jan himself had never stopped making the effort to learn whenever he got the chance to. There, he taught me another lesson.

  The 8th Step

  The older generation grouse about how modern city children think that supermarkets lay eggs, that the little ones are afraid of living animals and have never seen a farm. Show a child a real live cow, tell him in an untactful way that milk comes from it, and he will probably refuse to drink it ever again.

  Here is more unfortunate proof that I had not been as much of a teacher to Jan as I should have.

  Jan has always loved eating chicken meat. When he was younger, however, his knowledge of the bird constituted seeing its cooked leg on a plate, preferably with some sort of sauce. I suppose he might have thought that chicken drumsticks have always existed that way.

  The fateful day came when my mother decided, with great fanfare, to cook chicken rice at home. A couple of whole chickens were brought in, and after undergoing her secret processes of boiling stock and marinating and steaming, they were hooked on a rack over the kitchen sink to drip.

  It so happens that the entrance to our kitchen directly faces the sink, and so on that day the lifeless, hanging chickens were the first sight to greet anyone walking in.

  My brother had just finished breakfast and was happily making his way to the kitchen sink to wash his hands, when he balked at the doorway and stared. And stared. After a moment’s silence, he elicited a mighty yell and scrambled helter-skelter towards the safety of the bedrooms, greasy hands and all.

  Little Jan thought he had seen monsters.

  Nowadays, I am a great advocate for exposing preschoolers to the natural world.

  The 9th Step

  There are programmes in place to help special needs students find their niche here in Singapore, but it is not enough. There are long waiting lists, underpaid teachers, stranded children. Too many out there are being neglected, and it is ultimately up to the family to dig and scrape and hunt for places for their children.

  In preschool, the younger special children are being left in the care of regular teachers who already have a class of up to twenty-five to manage.

  Early Childhood teachers are overwhelmed and overtaxed. It is not that they love the special needs child in their class any less, but with twenty-four other children to see to, it is not an easy undertaking. A child who can, by himself, take up the attention that ten children demand will weigh heavily on any teacher’s shoulders.

  There is also the matter of parental denial.

  Some preschool teachers get frustrated with parents who refuse to acknowledge the fact that their child needs help. These parents make up stories about how the child behaves at home, give excuses about the child’s behaviour in school, and do everything to avoid clinical assessments because, somewhere inside, they dread listening to what the physicians will have to say. The child then does not get the help that he or she should be getting.

  ‘It is a cruel thing to do,’ someone once said.

  “It” is the blotting out of the parents’ hopes and dreams for their child. A mother who has carried her child lovingly for nine months, then raised it with so much love and care, suddenly finds that everything she thought she knew about her child has been turned upside down. The family’s whole world is changed.

  There is also the social impact. Accepting the disorder would mean they would have to deal with the stigma and having to answer to relatives and the world at large. The glare of the truth is too painful and blinding, and so they turn their eyes away. It would, perhaps, not be fair to blame them.

  I certainly have no right to judge the choices these parents make, neither as a sister nor as a preschool professional. I do think, however, that my mother’s opinion should count for something. My parents accepted Jan for who he is.

  ‘What is more important to these parents?’ she said. ‘Their own emotions, or their child’s life and health?’

  It is discouraging to know that even those who have accepted the fact have to struggle to find a place for their children here. There is a cry issuing from these people but it is a subdued one; it can hardly be heard over the hustle and bustle of the normal world. After some time, there is no one left with a voice t
o cry out, and folks quietly swallow the damage unto themselves.

  Special education teachers too are taken for granted by most. Special education schools are scraping for manpower, resources, funds, even premises. Special education teachers are also not paid their true work’s worth.

  Personally I think the teachers are worth their weight in gold. No one can afford to pay them in gold, but sometimes parents and relatives do bring them gifts, like pineapple tarts. The truth, however, remains that they are unsung heroes, and the bards of today prefer to sing other songs.

  Jan’s spoken requests to go back to school have lessened these days.

  Chapter 8

  It Even Has Its Own Day

  The 1st Step

  It would be nice to celebrate World Autism Awareness Day.

  The third annual World Autism Awareness Day (WAAD) was marked on 2 April, 2010.

  WAAD was proclaimed by a resolution passed by the United Nations General Assembly in 2007. Autism is one of only three health issues to be recognised by the UN with its own “day”.

  Autism Speaks1, the world’s biggest science and advocacy organisation for autism founded by Bob and Suzanne Wright, highlighted the third annual WAAD with a host of events worldwide, running from 31 March through April.

  Yoko Ono Lennon is Autism Speaks’ first Global Autism Ambassador. (Coincidentally, Jan is a fan of the Beatles.)

  Also, in accordance with the “Light It Up Blue: Shine a Light on Autism campaign”2, structures and landmarks around the world were lit up on the eve of WAAD. These included the Empire State Building and Radio City Music Hall in New York, the Kingdom Tower in Riyadh, Saudi Arabia, Hungary’s Parliament Building and the Bell Tower in Perth, Australia.

  I have imagined the Esplanade, the Istana, the Merlion and the Singapore Flyer lit up in blue on WAAD. It is an enchanting thought.

  Dignitaries and public figures from the Dominican Republic, Belgium and the European Council had also recorded public service announcements for World Autism Awareness Day in 2010.

  One can access on the WAAD website3, among other things, autism information in Arabic, Chinese, English, French, Greek, Hebrew, Hindi, Korean, Russian and Spanish. (Imagining people with autism all over the world speaking all these languages and more is a stupendous thought.)

  Events took place worldwide, such as mass walks, mass meetings and get-togethers to raise awareness. There were, too, performances and rallies, and light-ups and exhibitions among many others. The countries that took part in 2010 were Ghana, Uruguay, Brunei, India, France, Vietnam, Japan, Argentina, Australia, Bermuda, Bangladesh, Malaysia, Greece, Hungary, Bangladesh, Ireland, Australia, the United States, Jamaica, Bahrain, Nigeria, New Zealand, Pakistan, Malta, Mexico, Philippines, Scotland, Taiwan, Slovakia, Spain, United Kingdom, United Arab Emirates, South Africa, Canada and Cameroon.

  World Autism Awareness Day shines a spotlight on autism. Autism is something that touches people worldwide. It happens, of course, right here at home too. WAAD activities help to enhance public knowledge, awareness and sensitivity to autism. It lets people know the importance of early diagnosis and early intervention.

  With more knowledge and information reaching people, it would be easier for individuals with autism to find their place among their non-autistic counterparts.

  One can hope.

  The 2nd Step

  In an article4 posted on the Singapore socio-political website The Online Citizen on 26 April 2011, a father of a child with autism called for more local recognition for World Autism Awareness Day, and more support for those with autism in general. He penned that parents and Voluntary Welfare Organisations, without stronger governmental support, do not have enough resources to manage the challenges that autism presents.

  ‘Autism affects 1 in 105 children every year,’ wrote the father. ‘With Singapore’s population at 5 million, there are probably 47,000 individuals with autistic conditions. It is not easy to appreciate the challenges faced by autistic people when they look so “normal”.’

  I knew what he meant. It is this “looking normal” business that makes some folks misunderstand autistic individuals so easily.

  ‘This fellow looks like one of us,’ they say. ‘Why is he doing such silly things? It does not add up.’

  The father also wrote, ‘Every autistic individual should be given the best chance to become independent and productive in this country.’

  As with Jan’s case, I suppose, this father has seen so much potential for these individuals with autism that is simply left to fade away.

  This father appealed for more to be done for those on the spectrum. He highlighted the deficiencies of current developmental screening standards for children suspected to have autism, the lack of comprehensive schooling plans for autistic individuals, and how resources are stretched too thinly.

  He lamented the lack of homes and facilities to care for autistic adults who no longer have families to depend upon, of low autism awareness among employers, and the lack of laws to protect those with autism from discrimination in their daily lives.

  This father was a lone voice in crying out what so many others affected by autism have felt and thought.

  He also entreated Singapore to sign the United Nations’ Convention on the Rights of Persons with Disabilities. (The Ministry of Youth, Community Development and Sports has since stated that Singapore will sign this sometime in 2012.) And here I was, only longing to see our landmarks lighted up in blue to celebrate World Autism Awareness Day.

  ‘Embrace diversity. Include autism,’ he concluded. ‘Singapore can change. It can start by truly embracing diversity, and including autism in this endeavour. Perhaps, leadership should be demonstrated by the Prime Minister’s Office.’

  I do not know much about politics. I am glad I do not have to run a country, as it is not the easiest thing to do. I do not know what I would ask the Prime Minister if I were to meet with him to talk about autism. I would have to think long and hard about the things I would tell him, because there are too many stories.

  Imagine myself going to meet the Prime Minister with a grumpy Jan tagging along.

  He would kindly ask us to have a seat and then ask me what Jan would like to have. I would tell him, “Milo, sir. He likes Milo. Oh, and also chocolate chip and peanut butter cookies.”

  ‘So what can I do for Jan?’ he would ask, sitting down himself as we wait for the biscuits.

  ‘I don’t know, sir.’ I would sigh, gesturing to Jan. ‘What would you do with him?’

  He would think about it for a while, then say, ‘Does Jan feel like talking today?’

  ‘I don’t know, sir. He doesn’t seem to be in the mood. The Milo might help.’

  The Prime Minister would nod. ‘Then you tell me all about Jan.’

  And I do so. I do not tell him of the things he should do with the other ministers, as I do not know how. I simply tell him about Jan.

  Perhaps that alone would be a big start.

  Notes

  1. www.autismspeaks.org

  2. www.lightitupblue.org

  3. www.worldautismawarenessday.org

  4. http://theonlinecitizen.com/2011/04/call-for-inter-ministerial-effort-to-tackle-autism-issues/

  Chapter 9

  Go The Distance

  The 1st Step

  It began when I was chatting with some friends.

  Many people wish to travel and see the world. One often hears of female friends and acquaintances titivating themselves before taking off as flight attendants, to do just that. I had been musing about it for some time. Then somehow the topic weaved itself into a conversation we were having.

  ‘One day, I want to see the world,’ said I.

  ‘One day, we will,’ said one of my friends. ‘Europe, Africa, New Zealand. And we’ll drive cars all over their roads.’

  ‘Imagine that,’ said I.

  ‘We’ll make a list of places we want to see,’ said another friend. ‘And plan how we’ll get lost in foreign
lands.’

  ‘We’ll get guides,’ someone replied.

  ‘Oh, don’t worry about getting lost. If you continue walking in a straight line long enough, you’re bound to come across a working telephone, and the worst you’ll end up is right back where you started.’

  ‘We get lost in our own country.’

  ‘You can’t get lost in Singapore.’

  ‘How sure are you about that?’ I asked. ‘Have you really tried exploring Singapore?’

  We all looked at one another.

  Right then, a notion latched itself onto my brain and would not let go.

  Then, seven or eight years ago, I was in my teens, and dispirited after having just let go of my formal education for the third or fourth time. Money troubles were abound and I had nowhere to go – it felt as if I were a prisoner in a gaol. One day, things in my sight got too dim a shade of grey, and the air in the house seemed not quite enough to go around.

  I impulsively grabbed five things: my bus farecard, a small bundle of five-cent coins, a bottle of water, this massive dinosaur of a floppy-disk camera that belonged to my father, and my brother, although my brother is not a thing.

  The 2nd Step

  I did not know where we were going. I just knew that I wanted to walk and take pictures. Most importantly, walking and taking pictures would not cost money. All the money I had with me was the five-cent coins in case our bus farecards ran out of credit.

  I did not know where to go and had never ventured out randomly like that before. My determination, however, led me to bring Jan to seek high adventure in the neighbourhood park across the street. As we walked, I took pictures of things so familiar to us, yet to which I had never really paid any attention before.

  I took a photo of the obscure park fountain, carved out of stone like the head of a fish, which never spouted any water. I clicked my camera at a dirt trail amidst the grass growing on the side of the hill. People often scuttled down that trail, preferring to descend that way to the shops rather than wend their way a little further to the stairs on the other side.