by Aqilah Teo
The sensible staff nurse who answered the call laughed when she heard that. She said that there was no such thing, and to tell whomever had insisted we put Jan in IMH to give her a call, and she would put the person right.
Jan was special needs, not an individual with mental health issues. The hospital could only ward him as a patient and then he would be discharged as normal, she explained kindly.
I have heard of another autistic child who is warded whenever he gets fractious. However, in this child’s case, under hospital care, his parents are able to persuade him to take his medication by slipping it into fruit or ice-cream. Getting him warded him for a few days seems enough to get his derailed routine back on track.
For my brother, it is a futile plot. Jan pays heightened attention to whatever he consumes. We have attempted similar ruses many times. All our attempts concluded with him giving us a look that clearly said, ‘Nice try.’
Jan now receives a monthly injection if he refuses to take his oral medication. It is alright if he sticks to his pill timetable, but once he starts using them for carrom-like games, we have to call in the cavalry.
Once, a nurse was scheduled to make a home visit to give Jan the injection.
‘A nurse?’ I asked my mother. ‘Singular?’
This last question could have gone two ways. I had meant that it was a nurse as opposed to a more reassuring group of nurses, but it would also have taken a very singular nurse to successfully get the deed done alone.
‘They said they will send him first and if things don’t work out, he’ll go back to report to the hospital. Then they’ll see what they can do next,’ my mother said with a shrug.
‘But they have Jan’s records,’ I said. ‘Really? One nurse?’
My mother was hopeful. ‘Maybe he can persuade your brother to cooperate.’
‘Maybe,’ I conceded.
Jan still loathes needles and injections with a single-minded passion, but there have been occasions when he relented after days of reasoning, cajoling, fake threats and bribery. He reluctantly allowed the medical people to poke him with needles to draw blood samples, inject medicine, set him up with intravenous drips, and so forth.
He would always have his favourite stuffed cushion with him, and would sit very bravely holding my hand till the entire business was over. We were always very proud of him.
‘Has Jan been told that he’s going to have an injection today?’
I asked my mother.
‘No, we haven’t told him anything,’ came the answer.
I started to laugh.
‘That’s not going to work,’ I said, still chuckling. ‘Mum, you know he doesn’t like surprises and he’s definitely not going to like this one, and it’s too late to start apologising to him now. Sorry, but I’m going to sleep.’
Which was what I did. When I woke from my nap, my mother told me that the nurse had come and gone, and my brother had gotten away scot-free without any injections whatsoever. Jan was smugly eating his lunch. My father and I had another good laugh.
Chapter 4
A Memento A Day
The 1st Step
Jan has grown to be very attached to home and family. He is not fond, for instance, of me leaving the house at all. He is resigned to the idea of me going for work and school, and when I go out with friends, it is alright with him as long as I bring him back something.
Whenever I travel now or stop at a friend’s place for a day or two, I would draw him a calendar marking the days I would be gone and highlighting the day I would return home. He would unwillingly relent, after listening to my routine recital of sundry promises of souvenirs and peering suspiciously at the calendar.
Souvenirs are very important. It is custom that when I leave the house, I must return with a souvenir. It does not have to be much, perhaps a small biscuit packet or a can drink. It lets Jan know that I have not forgotten him.
Woe betide the unmindful sister who forgets. Once, my father went out with a reminder that he had already prepared Jan’s meals, and that I was only to get lunch for my mother and myself if we were not cooking.
When I got home, I placed the packed lunches on the dining table and returned to my room. Some time later, I emerged only to find out that Jan had apparently been saddened to tears by the heartbreaking sight of only two sets of lunch. He had even sniffled and hiccoughed.
‘He thinks you forgot him,’ said my mother.
‘Because of one missing food box? And what about all the other things I got him, don’t they count?’ I joked.
Still, I had done the unthinkable. I had not even gotten him a drink in a can. He had not sobbed like that for years. Now I do not dare leave his order out of any menu.
Chapter 5
From Strength To Strength
The 1st Step
It is sad to see and hear people judging and punishing those with special needs in their lives. I know of people passing judgement upon parents, children, families – those who face the challenges of special needs from day to day. My own family is certainly not excluded.
These people blame everything from past sins (if they believe in reincarnation) to more recent sins (if they do not). They speculate on the cause – everything from karma to retribution to drain-rotten luck.
Sometimes one wonders if they would not stoop to tarring and feathering special individuals, if not for laws against such.
Perhaps it makes them feel superior when they say and do these things. Or perhaps it makes for a nourishing dose of gossip. I have not spent sufficient time investigating their psychology to come up with a concrete answer.
There is not a total loss of hope. Taking autism for example, there are people who are more aware of it because of the media. They have watched Hollywood’s Rain Man and Mercury Rising, both Korea and Japan’s versions of the film Marathon, or read English author Mark Haddon’s The Curious Incident of the Dog in The Night-Time and autistic local author Eric Y Chen’s Mirror Mind, among others.
Perhaps it will, in the end, be the media that will act as the catalyst for folks to understand and cheer on real-life special protagonists.
The 2nd Step
So where do we go from here? Everyone asks questions like ‘Who will look after the children when the parents are no longer with them?’ and ‘What is going to happen to them?’ One can only do what is humanly possible. One too can have faith.
Once, we were sitting at the entrance hall of my brother’s school awaiting dismissal time. My mother had gotten into a conversation with a lady whose daughter was a Down’s Syndrome child with multiple handicaps. She was beautiful, a tiny delicate thing about three years old. As they spoke, I watched the mother shed quiet tears.
My mother took her hand and said, ‘The best we can do is give the children as much love as we can, for as long as they are here with us on this earth. That is the best we can do, and no one could ask more of you.’
Another family we met at one of the special education centres had a son who was four or five years older than Jan. He had low-functioning autism. The boy was big and burly, much larger than his mother, and sat in a chair staring blankly. From time to time, he would scream for seemingly no reason. His screams were ear-piercing.
His mother was a stout, handsome, well-dressed lady sporting a large diamond on her finger. But her face was worn and her eyes vacant and dull. She held limply onto her only child’s hand, telling my mother that she had not dared to try for another.
My mother, in a thoughtful mood, had once said to me, ‘Take the tallest, largest, toughest, strongest tree there is, and twenty men to try and shake it with their hands. The tree will not budge at first. It is such a proud and strong tree. But if the men continue to try and shake it, hour after hour, day after day, for weeks, months, years, even a tree like that will one day give way, its once-strong roots loosed from the ground.’
Chapter 6
How One Is Declared
Unfit For Duty
The 1st Step
> National Service.
Almost every male denizen in our fair land has to undergo this rite of passage. Local literature, media and coffeeshop raconteurs have all had a hand in welding it into the foundation of our culture. Indeed, it has a sub-culture of its own. No one with a Singaporean identity of any kind is unfamiliar with its folkways.
Still, I was surprised when my brother got the summons a few months short of his eighteenth birthday.
The family was at home one afternoon when my father handed me the letter and my brother’s documents. He asked if I could do him a favour and call up the relevant people as he was busy.
For a fleeting moment, I envisaged my brother enlisting. It could end in no other way than him bossing his sergeant around.
I could either be annoyed or amused at the fact that my brother had gotten the summons at all. At that point I was much more inclined to see it in a comedic light. So I carried on entertaining the waggish idea.
We would have to remind the officers to seal, lock or install grilles on all the windows. They would also have to take especial care to keep their keys with them wherever they go, because my brother has a talent for making keys vanish. He also has a knack of locking the doors involved before he does (my family is constantly replacing doorknobs in the household; it has become something of a regular monthly expense). Oh, and they would too have to be informed that he prefers eating with a pair of kitchen scissors and a fork.
Just imagine.
Oh, also, Mr Officer Person, Sir, we think you had better mind his toiletries. He has a habit of squeezing whole bottles and tubes of soap and toothpaste down the drain for the heck of it. You might also want to rethink putting a rifle in his hands. He will accept it very happily, of course. He would not have any trouble dismantling it, either, with his experience in dismantling a lot of things at home. He would probably follow up by dismantling the rest of the company’s rifles.
Last but not least, we do want him back at the end of his service. You see, everyone who has minded him in his life has always grown so attached to him they wanted to bring him home, and teared because they missed him. You probably would too, but we can’t let you have him just the same.
My father’s voice brought my attention back to the letter.
‘Do they really want him?’ I asked, amused. ‘He would get more exercise that way.’
‘Why don’t you call them and see?’ joked Dad, setting the documents down on my desk.
‘Wouldn’t they have his record?’ I asked, feeling slightly incredulous as I looked over the letter.
‘I suppose they can’t check each and every person’s record,’ my father said.
‘Oh, can’t they?’ I responded, drawing out a pen as my father explained whom to contact.
‘Okay, leave it to me; I’ll settle it,’ I said, sorting the documents in order. My father thanked me and left the study.
My family has done this many times, making calls and visits to explain, ‘Oh no, he can’t’ or ‘No, he won’t’ and ‘This is why.’ I used to loathe it, but as time passed, I suppose I got used to the business. Getting used to it does not make it fun, though, and so when I picked up the phone, I knew what I was once again in for.
There was ringing, and a click, and then a man’s voice.
‘Yes, hello,’ I said. ‘It’s this. My brother has been given notice to turn up for National Service and - ’
‘How old is your brother?’ the man interrupted.
‘He’s seventeen,’ I said.
‘And has he been called down to register this coming June?’ he continued.
‘Yes, but you see - ’
‘Then that’s good. That’s right.’
‘Yes, but you see, the thing is he’s autistic. He won’t be able to attend National Service. We’d like to find out how we’re supposed to go about having him exempted.’
‘What? What? No, there’s no such thing, that’s impossible. Everyone has to attend National Service, there’s no excuse.’
I had to pause for a few moments before speaking into the receiver again.
‘My brother is autistic,’ I said emphatically. ‘He can’t attend NS unless you’d like to have him. Do you know what autism is?’
‘Autism? Is he sick? We can only exempt him if he’s sick. How long has he been autistic for?’ he inquired, as if I had told him that my brother had just caught the flu.
‘For as long as he can remember,’ I said. ‘I beg your pardon, I said he was autistic, not sick.’
‘He’s not sick?’
‘He’s not sick,’ I affirmed. ‘He has autism. It’s a condition. He won’t be able to do NS.’
‘Has he been checked by our doctors? You’ll need to have them certify him unfit for NS,’ said the person. ‘If they say officially that he won’t be able to do NS, only then can he be excused.’
‘Alright,’ I said, playing along. ‘How do we get the doctors to certify that he’s autistic and so unfit for NS?’
‘Don’t you have a medical appointment? You need to have a medical appointment. You’ll need to bring him down to this address and let the doctors check him very thoroughly to make sure he’s autistic,’ said the person.
I was tempted to say, ‘Don’t worry, I don’t think he’s faking it.’ Instead I said, ‘We don’t have an appointment.’
‘You’ll need to speak to another person to arrange it,’ he said. ‘I’ll have that person call you back.’
‘Yes, do that please. Thank you.’ And then I hung up the phone and took lots of deep breaths.
It was good fortune that the next call was from a nice, sensible lady who understood the situation in two sentences.
She said that all we had to do was send them a letter from Jan’s old school stating that he was once a student there, and that was it. I thanked her, and put down the phone.
I supposed I was not going to have to remind the army officers-in-charge to secure Jan’s barrack door after lights out, in case he woke up in the middle of the night and decided he would like to go on an adventure.
When the comedy wanes, however, I find myself always wishing to raise the level of autism awareness in Singapore to a whole new level.
Chapter 7
I Want To Go To School
The 1st Step
Two years ago, I decided to become a preschool teacher and have been in the line since. In the the Early Childhood field, one encounters special needs children of different types and backgrounds. I did think it would make for excellent research, as well as a choice opportunity for a hands-on approach to child psychology, regular or irregular. It makes for food for thought, and makes me reflect on my own memories.
I once observed a child, a boy who had just turned two. The others around him were beginning to babble half-formed words, form dubious habits and exhibit personal quirks. But he remained as he had been for months, passive and apathetic, and with a tendency to run out open doors. A moment came when I realised that Yu Jin never made any eye contact with anyone. I instinctively began to watch him more closely from then on.
Yu Jin never responded to being called by name. Some had put it down to him being too used to nicknames at home. But he never responded to any kind of communication unless he was picked up bodily. Yu Jin only ever showed a single emotion – a sort of wayward distress when physically stopped from doing something he wanted to. Unlike his peers, he was never seen to imitate others’ actions.
He also seemed not to recognise food as things to eat. He would pour them out of their vessels or crumble them in his hands, not out of mischief, but more out of what seemed like indifference.
Observing him became a thoughtful, melancholic affair for me; there was something about him that was familiar. It reminded me strongly of certain scenes from my childhood.
I kept my growing suspicions to myself, but was drawn to monitor him closely. I would note down details, like his disinterest in the playground and his peers.
I also wrote down the day and date of
the first time I ever saw him laugh. We had gone outdoors one morning and he had clapped his hands against a metal pillar, producing a clanging sound. His peers soon joined him in the activity with great glee – they enjoyed almost anything that made a clamour – and as they were all hammering the pillar and laughing together, for a moment it seemed as though Yu Jin was playing with his friends.
Soon after, Yu Jin developed the habits of running in circles and twirling himself round and round.
Along with my growing conviction about Yu Jin’s condition was a lingering thought that his family had no idea. They thought he was behaving like a regular toddler. I cannot help but wonder, if I had been able to observe my brother discriminately during his first years, would I have been able to tell that he was different?
Early childhood educators are always reminded that we are not qualified to give a diagnosis in such situations. What we do is make our observations and give our recommendations. Sooner or later, someone will have to talk to Yu Jin’s parents and recommend that he be brought for assessment. His parents will ask why.
It will not be easy to answer.
At the Rainbow Centre website, under the “Frequently Asked Questions” section, one can see the question: “Can my child ever live a normal life?” No one can give a set answer.
It is not as though any proper-minded person will start belting the song Que Sera, Sera in great hearty tones. The best anyone can give is advice. And so Rainbow Centre.org advises parents to send their child for early intervention, as it can “make all the difference”.
I do not advertise my brother’s autism, because people would then ask questions. These questions, as I have mentioned, are either difficult or impossible to answer. It takes too much time and thought for a passing conversation. And so I have taken the time and thought to answer the many questions here instead, which is the more canny thing to do.
