by Aqilah Teo
When we take the time to reason with him, he is more likely to obey rules or instructions. When we raise our voices, well, he simply rebels.
Jan had once gotten so fed up with getting scolded that whenever he heard the word “naughty”, he would cover his ears and start acting up. He still is particularly sensitive about this word, so it has become taboo in the house.
I have heard first-hand accounts about special needs individuals getting locked up in police cells because they could not produce their identification on the street, or for other problems they ran into in public. Some of the families involved had been uneducated and had not known what to do or whom to turn to. They could only look on helplessly.
This is partly the reason why, having had my own education upset before, I am bent on continuing it. I learn to read and write and speak, so that my voice can be heard. It is for those children and their families, and it is for Jan.
The 15th Step
Having autism in the family does not quite mean we are the centre of attention, with relatives cooing over and coddling Jan.
They did fuss over him for about three years, I suppose, before their infatuation ceased. Jan was an astonishingly round infant and a very charming toddler. One of his endearing traits was that for all the straight hair on his head, there had been an uneven row of fluffy curls at the nape of his little head. This became his heralding feature, and nearly everyone he met simply had to poke or tickle him.
Families are funny things. Some families stay together as if bonded with clotted glue. They hoist each other over tall fences, reach down to pull one another out of pits and snares, share the last biscuit amongst themselves. (Those tales are always nice to hear.)
Others see their kin fall into a pit, with a hungry snake close by watching in glee, and they instantly hurtle in the opposite direction as fast as they can.
‘Help!’ shouts the fallen brother.
‘The snake will eat him too quickly,’ the others say to one another. ‘We must run faster.’
And so they do.
Perhaps one cannot blame them too much. Getting gobbled up by a hungry snake can be a scary thing.
It was too difficult to try and be a part of Jan’s life. Aunts and uncles, great-aunts and great-uncles, cousins and other kinsfolk – they left. Of our grandparents, Jan and I have only one surviving grandfather. He has something of a radical personality, and Jan does not quite agree with his digestion. It is no surprise as many things do not agree with his digestion, like yoghurt.
It is a pity. From what one hears of my late grandmothers, they would have figured out a way to be a big part of Jan’s plans and ours.
As for our living relations, they found that Jan’s path was not really where they wanted to venture. They had other roads to walk. My parents and I are too busy chasing Jan down his to pursue them. So we part like travellers at crossroads on the highway, holding our cloth-bags over our shoulders and bidding one another ‘fare thee well’. One or two chose paths that cross ours more frequently. As for the others, our roads do not cross at all. Occasionally, we hear news of them through passing minstrels.
One beloved aunt who had loved Jan like her own is no longer with us. We have now only one uncle and his wife who, with their three small children, have chosen to walk alongside us. There are large bumps and wide potholes, but they are courageous people.
Any other few allies our family might have are unrelated by blood. Blood may be thicker than water but we cannot brush our teeth with it. (That would be for vampires, if vampires brushed their teeth.)
An uncle of mine was once kind enough to say to my mother, ‘You are blessed and fortunate to have him as your son. With his condition, he walks the earth free from vice and wrongdoing. You will not have to worry for him in that sense.’
We greatly appreciated his words. We need to hear these things once in a while. It helps to remember that I am face to face with a blessed and special child when Jan has just turned the contents of my book cabinet inside out. (I am very serious about this.)
This uncle’s own toddler had nearly been diagnosed as a special needs child. My cousin Anna had been a typhoon of a tot with an alarmingly short attention span. She did not sound out words till she was about three or four years old. Anna looked no one in the face and was either unwilling or unable to interact well with others. I do not know if she even asked for food when she was hungry. Her parents had all but resigned themselves to the fact she was a special child.
She got better somehow. I am not quite sure what happened, as I had not been able to observe her closely at the time. All I knew was that one day, we got news of her talking and being able to stay seated where she was supposed to. Anna is now doing well in secondary school.
‘Jan can be better too,’ my determined aunt had said.
She encouraged us to follow what they did with my cousin. Not in a bossy kind of way, but with a gentle, sincere wish that Jan would be bestowed a miracle as well.
They had done all kinds of spiritual things. We did spiritual things for Jan too. But perhaps my family has a different lot of miracles in our bag. The most important part in doing spiritual things is having faith.
It made me wonder about the notion of fixing autism. It is not as though a person can simply pop a tablet to make autism go away. Just imagine such a thing.
‘Have him take two pills three times a day after food,’ the clever doctor would say. ‘It will stop the autism. Just let me know if he develops a rash.’
Autism is not a disease. Regular folks squash individuals with autism into places meant for common folks. It is like trying to cram lumps of dough into a jar filled with square biscuits. The dough can be forced into different shapes, but too much of it in the jar and the biscuits would break. Their sharp edges too would stick in the dough.
I know there are groups out there cheerleading for what they call “neurodiversity”. Neurodiversity is a bit like racial tolerance, only it is not about skin colours but different types of minds and brains.
Perhaps those who cannot tolerate autism would be called, not racists, but “mindists”. That is because they mind a lot of things.
These advocates of neurodiversity say that people with different minds should be treated equally. They declare they should be allowed equal opportunities at work and in education, and in their social lives. Autistic individuals should have the right not to be treated as if they are sick. They take offense at the idea that some folks are looking for ways to “remedy” them.
I do not really know what to think about “cures”. Perhaps I do not really like it. Jan has always been Jan. Autism is just a part of him. Now, if we just upped and took a chunk of him away, made it vanish, what would my brother be? He may not be Jan anymore. He may even lose his liking for lasagna.
One supposes the idea of “curing” means that the autistic person would end up “normal”. If Jan should end up as normal as the racists or mindists, I would not be in such a hurry to cure him.
I have not involved myself much with these neurodiversity movements. They certainly have the right to campaign, and I probably would have joined them if things had been slightly different.
It would be difficult for for me to argue for Jan to be treated like a completely regular person, yet at the same time ask for him to be excused from National Service or search for a special school or sheltered training centre with room to enrol him. This question is a puzzle box I have not yet solved. I have kept it on my shelf to look at, but will probably not open it for some time yet.
Still, would we opt for an “autism cure” for Jan, if one existed? Our father says there is no point in worrying about things that are not there. He thinks it is a waste of time.
Mother is a little more keen though. She might not mind a little something that can help, unless it involved taking Jan’s brain out, sloshing it in pickled herring juice and dipping it in tears of newt before putting it back in.
‘I would not ask for him to be a rocket scie
ntist,’ she says (although I think he is closer to being a rocket scientist as he is now than if he were a regular boy). ‘I would be happy if he could just mind his toileting. And be able to tell us a little more about what bothers him sometimes.’
There is also the question of marriage. It seems the best thing one can do to be normal is to get married. There are stories of individuals with autism who get married, of course. They live happily ever after, even more so than regular people sometimes. My parents do not take the idea of Jan getting married seriously at all.
I do not harbour big fancy ideas about my brother’s marriage prospects. It is, however, quite nice to entertain fleeting thoughts of having nieces and nephews.
Jan is still such a baby. Perhaps, if there is time for it, we shall come back to such thoughts later on.
Chapter 2
The Policemen Were Blue,
The Doctors Were White
The 1st Step
After graduating from Balestier Special School at the age of twelve, Jan began to grow depressed. It was difficult to find a new place for his continued education and training. He missed school terribly, and after two or three years, he fell into a pit of melancholia. He refused to eat or drink or sleep, and would get constant fevers. Even medication did not help.
He had been asking to go for a holiday too. We had run into bad times so there was not money for that. I suppose Jan really wanted a breath of fresh air. He would listen, over and over, to the old songs my father used to play on our past family trips, and he grew increasingly miserable at home.
It was nearly impossible to make Jan understand why we could not grant his most fervent wishes; he got it into his head that we simply did not care to. He first began to give vent to his frustration and grief by throwing our things away.
The family noticed things going missing around the house. When we asked Jan about them – my parents and I had had a sneaky suspicion, because it was either him or little goblins – he made us understand that he had thrown some out with the rubbish, and dropped others down the bathroom drainholes. Jan also managed, twice, to smuggle the family house keys from drawers or bags, slip out the front door and cast them down the refuse chute.
The family tightened security around the house. With literally no other openings, Jan turned to the windows. That marked the beginning of the incidents with the police.
The family only confirmed that Jan was indeed throwing things out the window the second time he did so. We had not been sure the first time, when my father’s mobile phone disappeared all of a sudden. My mobile phone went missing next. We asked my brother about it and he confessed. I went down to the ground floor and saw the remains of my handphone lying where it had smashed onto the pavement.
The family got to work boarding up, sealing and installing double-grilles on all the windows, along with any other crevice that we thought Jan might manage to get a teaspoon through.
It was not enough. With his illness and unhappiness about staying idle at home, Jan grew weaker but angrier and more resourceful as well. He could not understand the changes that had happened around him, changes that he found disturbing. My brother went around pale and sickly, with a light in his eyes that was too bright.
The next year, Jan managed to pry open some window louvres near the kitchen ceiling which had had their metal frames rusted shut. Out went bottles of ketchup and some eggs.
Witnesses called the police. Father was at work. I remember my mother and I meeting the policemen at the front door.
My mother was upset and very much grieved. It did not help that a few of the officers did not seem aware that they were dealing with an autism family. I doubt some of them even knew what autism was. They were rude and aggressive.
I was not feeling particularly intelligent nor in a good mood that day, as I had a bad cold and had forced myself out of bed.
Still, I was determined that they were not going to touch Jan. I remember talking a whole lot. Most of it probably did not make much sense but I kept on talking anyway.
The officers began calling down senior officers who in turn called in their superior. The policemen were angry and we were angry. It took lots more talking to one or two superior officers who were sensible to reason before this was finally recognised for what it was – a special case. After long whispered debates and stern instructions from their superiors, the policemen began acting more kindly.
The police took down our statements, did a house check, and gave us reminders and warnings, and their consolations in turn. My mother and I cooperated with all the standard operating procedures. The matter was settled and no one laid a hand on Jan.
I lost my voice for a while after that.
Jan’s condition worsened till one day, he ran away from home. He simply dug out my parents’ house keys from their stash, opened the front door and took off while we were asleep.
When the family discovered what had happened, we began the Janhunt. My elder uncle’s family happened to be visiting from Malaysia – it was a Sunday – and they joined us.
My parents sought the help of the very same policemen who had handled my brother’s case previously. The officers sent out a mass alert to other posts and stations, then searched for Jan as for their own lost son. The station inspector leading the search climbed the stairs to all eleven storeys of our block in search of Jan. My hat will always come off to them.
We looked everywhere we thought my brother might be capable of getting to. The thing everyone had to remember was that, ill or not, my brother was still a very resourceful fugitive.
I found it difficult to stay put in the middle of the chaos, and to simply sit by and wait for news. I took off on my own, leaving my father, uncle and the police to rove the neighbourhood in their vehicles, and my mother to the care of my aunt.
Time seemed to pass by in a haze, as I was under the influence of a fever. I retraced the steps and pathways Jan and I usually took through the neighbourhood. (My imagination had unhelpfully conjured up images of everything I did not want to happen. One thing that struck me, oddly enough, was the knowledge that my brother was not reckless when crossing roads.)
I am not sure why my family had trouble calling acquaintances for help. Perhaps because it was a Sunday and everyone was occupied. I recall that a couple of my childhood friends – we had known each other for nearly fifteen years by then – were out of town. I stopped at a public bench and sat down, feeling like a little girl at the crowded carnival fair who has lost her parents, holding an oversized teddy bear. Except I did not have a teddy bear with me. I began to cry.
An hour or so into the search, my mother called me on my mobile phone. They had found Jan. He had apparently managed to hail a cab and gotten the driver to take him to Simei (he has some favourite shops there). The kindly driver had not been able to get anything other than “Simei” out of my brother. Realising that something was amiss, he had delivered the boy to the police station in Simei.
My father and uncle went ahead to where Jan was. A police car was sent over to pick my mother and myself up. We stopped at a housing block in Simei.
There, a great struggle was taking place. Jan was sprawled on the ground, resisting all attempts to move him. When it became clear that it did not matter the number of men, that they would not be able to take him home if he did not want to go, the station inspector told his men to clear the place.
The station inspector managed my brother alone. He acted with great presence of mind, politely but firmly turning away curious passersby who stopped to watch, and at the same time trying to assuage a furious Jan. This officer, that day, earned my utmost respect for life.
The grown-ups had called for a private ambulance to pick Jan up and sedate him, when my brother decided he was tired of it all and asked to go home. So the ambulance call was cancelled and the police escorted us back.
Jan seemed tired and thoughtful when he reached home. He washed, then sat down to dinner without fuss. I suddenly remembered I had a fever – it
had started behaving badly for being ignored – and so I went to bed.
The 2nd Step
Jan got better and the days passed quietly after that. Two years later, however, he grew ill again with fevers and pains. He began refusing all food and drink and stayed in bed, not moving at all and turning quite blue in the face. He also began reacting badly to the different kinds of medication.
With his ill health, Jan once again got aggrieved, though he showed no outward signs of aggression. He again began asking to go for a vacation and to go back to school. Neither of his requests could be met and he plunged deeper into a depressed silence.
It is never easy to get Jan to see a doctor. The family was preparing to call in an ambulance, and bracing for the struggle that was to come in getting him to the hospital.
Before we managed to do that, Jan contrived one morning, while the family was still asleep, to wrench away part of the metal netting and grille-work from the windows in the balcony. He then threw cutlery out the windows.
Imagine our shock when the police came and knocked down our door. I am not mistaking the preposition. They knocked down our door. They later explained that when they had knocked at our door, there had been no answer.
Seeing no one around except my brother, they went after him. Maybe someone yelled, ‘Get him, men!’ before they pounced on him. I do not know. I did not see anything until the ruckus jolted me awake and out of bed, and I bolted to the dining hall. Eight officers were pinning my brother to the floor and cuffing him, as if they had just caught a dangerous criminal.
Some onlookers said to my family, ‘Throwing things out the window, it’s very dangerous.’
Of course it was dangerous.
The first reaction everyone had was, ‘Did anyone get hurt?’ Thankfully, no one had.