by Aqilah Teo
I have not myself worked as a Special Education teacher. It is not that the thought has never crossed my mind. But I do not think that I have enough fortitude to tend both to Jan at home and then to the children at the special school. One must definitely have marvellous masses of physical energy and emotional reserve. I am just not sure how marvellous or how massive.
Seeing as how I have taught preschool, while at the same time tending to Jan at home, it is possible I just might have the savvy to pull it off. However it is not worth the gamble for me to test my threshold, and risk shortchanging either Jan or other special needs children.
The 2nd Step
My mother has a difficult time stepping into special schools. She gets sad when she sees the children. It is different for a mother; no matter how close I may be to Jan as his sister, Mum is still his mother. There is a whole gamut of emotions the mother of an autistic individual experiences, that words cannot come close to doing justice.
I suppose that I take for granted the beauty and blessings the children possess. When I was younger, I used to weigh whether Jan had gotten the better end of the bargain with his autism. It was not out of jealousy or anything of the like, but a serious, genuine, intellectual consideration. And I made lists about things that Jan could do and I could not, and vice versa.
For instance, Jan did not have to go to regular school. His school had games and nice teachers. To a regular primary schooler like myself with loud, hassled-looking teachers (some of whom looked like they wanted nothing better than to pack their bags in a great hurry and catch the next plane to the other end of the world), this seemed like a big box of chocolate-covered caramel teddy bears wearing chocolate chip cookie berets and tunics made of cotton candy.
I, however, got to play with my friends and cousins, and celebrate birthdays and festivities. Those were fun. It seemed to me at the time that Jan did not really want to do any of those things, and so I thought he could not be having much fun.
Jan could go to bed and wake up whenever he liked, while I had to rise at unearthly hours for school. But I got to keep any pocket money that people gave me, to buy crackers or coloured markers if I wanted them. Jan had his pocket money put away by my parents.
Jan could, without a care, toss his milk bottle aside after drinking his fill, stretch and yawn and be content, and I would be the one to go on a bottle hunt when he wanted it back. (My mother is fond of joking about how I was always very cranky going on these baby bottle hunts, because Jan’s bottles always ended up in the most interesting places.) I, on the other hand, was not allowed to do the same.
Jan could do offbeat things and behave with people any way he liked, if he interacted at all, and there were no adverse consequences. I always had to be proper and polite, and it was a trying task for me. I was never a very sociable child, but still I had to interact with strange grown-ups even if I did not want to.
My parents never made me feel like the second-best child, or took it for granted that I would be alright if left alone simply because I was not special needs. They gave us equal attention.
I suppose it helped that I was fond of Jan; I had probably likened him to a walking teddy bear. And when we made our parents angry, we both got yelled at. I suppose that would seem fair to a child.
In the end, there are many things my mother goes through that I cannot relate to, and so I can walk into a special school with a much livelier gait. Perhaps it is simply naiveté. There are a lot of things to observe and analyse, to cheer on and to admire. These schools were also places that made my brother happy, and as a child I had only positive associations in my mind with them. I still do.
One particular place we brought Jan to, though, affected both my mother and I deeply. It was not quite a school, but a half-day home with training activities. The home also took in those who were mentally ill.
There were other children with autism, but only a few. I did not learn till later that they had low-functioning autism. I was a teenager then and had not come across many such individuals.
The ones that I did meet had always been still, with beautiful but vacant faces. I liked to imagine that these children were reading many secrets of the world we could not see, and that they were too busy deciphering the miracles around them to bother paying attention to us common people.
Even though my mother and I were no strangers to tantrums, Jan having had his share, it was still a punch to the gut to experience for the first time the episodes this particular group of children would have.
Some of them had not outgrown their hyperactiveness. They would run from window to window, screaming. They hit tables with their fists and banged their heads against furniture. They threw themselves about wildly, shouting themselves hoarse. The children hardly took part in the activities at all. They could not. They had superheroes for teachers, but not mind-readers. No one knew what these children were experiencing.
I can only imagine how my mother’s heart must have shattered, watching them. She would have tried to hug and calm every one of them if she could. As for me, I remember my insides feeling wobbly and hollow the first day my mother and I left the institution. This was nothing like I remembered Jan’s other schools to be – bright, cheery, busy. It had been selfish of me, but I thought, what had we gotten Jan into?
The feeling worsened when we walked past one of the holding houses, where the patients were being lined up to be brought someplace. As my mother and I passed them on the footpath, the entire row began reaching out to us with their hands, grappling and moaning. One of them nearly caught hold of my shirt sleeve.
Horror movies use this gimmick to try and scare people, and it is usually funny when the effect does not quite come off. But this was not a movie. This was real. It was very sad and the experience terrified me.
My mother and I had almost wanted to bring Jan home that first day itself. Still, we thought it was better for Jan to be there than idle at home. But after spending a week at the place, Jan began to show signs of regression. He resorted to hitting things and running and screaming, rather than busying himself with something he liked. Jan had begun to imitate the other children at the centre.
We withdrew Jan after that. Jan eventually went back to being himself. The memory of what happened there stays with me. I remind myself of how I had wanted to run from those patients, rather than take their hands in mine. It is good for introspection, and set off ripples of little changes to my principles of right and wrong from then on.
The 3rd Step
A man with an autistic son once told my mother that he would have given a lot just to hear his six-year-old call him “dad”. And there was Jan, able to demand this and that of “Mummy” and “Daddy” and “Jie Jie” with relentless ease.
Some think we are fortunate that Jan is able to do what he does in his daily routines. They think we are fortunate because he likes conversation, and is mostly able to let us know what he wants. He talks. Not like the great orators of ancient Rome, but talk he does. We do not have the heart to tell them of Jan’s bigger and more complicated tantrums and fits, as compared to some of their children. It would accomplish nothing good.
The saying “the grass is always greener on the other side” may apply here, but somehow it feels cruel. My mother wishes Jan could have gone to mainstream schools, that he could be more independent with his toilet needs. She looks on longingly at those with Asperger’s, as they are able to go to school and work with some semblance of normalcy. Then we realised that it is no easier for them than any other children with autism. They are the ones who are the most vulnerable to the whims and slights of common people, and are the ones made to feel like they are the most different of all.
The 4th Step
There are inclusion and integration programmes that provide for the more mildly autistic individuals capable of entering mainstream school.
On 18 June 2010, an online broadcast by ABCNews.com showed an autistic high school graduate named Eric Douglas Duquette from Smithfield, Rhod
e Island. He was the salutatorian and made a speech on his graduation day.
‘It is with great humility and pride that I stand before you as your salutatorian. I started my academic career being diagnosed with a serious learning disability, autism. My parents were told that my prognosis was poor, and that I would end up, probably end up in an institution. They thought differently. Today I stand before you, accepted into every institution of higher learning that I applied to, so I guess in a way the experts were right about the “institution” thing.’
According to the broadcast, Eric was to move on to college to major in biology. He is also reportedly fluent in Spanish. It seems that every day, his parents focused on teaching him ten words for up to eight hours a day, even teaching him sign language as a supplement.
The broadcast presenter described Eric as having been ‘the child who learned emotions with the determination that some of us learn calculus’. Eric Duquette demonstrated the fruits of his learning, too, in what I thought must have been one of the most memorable moments of the speech.
He said, ‘Never underestimate the power of a smile.’ And he smiled at his fellow graduates.
If an autistic person can smile at those different from him, why should regular people not smile at those different from them?
Jan is perhaps not as fortunate as Eric, and there are many others who may not be as fortunate as Jan.
The 5th Step
‘I want to go to school.’
This was what my brother told my parents again and again after he had graduated from MINDS Rainbow Balestier School at twelve.
We are not yet able to send him back to school or for training, as there is no place for him anywhere.
My brother has the potential to achieve so much, yet he is held back by circumstances. This might not be such a different story from that of many regular people. However, in Jan’s case, the most common answer that anyone can offer is the “institution thing”.
Jan is a paradox. This is why it is not easy to answer questions such as “What is your brother like?”, “Is he a high-functioning autistic?” and “Is he dependent?”
Easy questions would be “Is he strong?”, “Does he like going out?” and “Would he get very, very irritated if someone came along and swiped a bite off his lunch, especially if that lunch happened to be freshly baked lasagna?”
The paradox lies in his level of dependence. It sometimes seems as though Jan is perched upon both extreme ends of the spectrum at the same time.
He is highly independent. He can cook rice and prepare his own food – whatever that does not involve cooking at the stove itself – and drink. He plays on the computer and on his gaming system, and operates CD and VCD players to watch movies he likes. He goes beyond having self-help skills; he would fix things at home with a speed that leaves the rest of us goggling. He would do tremendously heartwarming things, like sponging a family member who has a fever or rubbing my mother’s feet if they are sore. Once, he even took it upon himself to tidy my room so that it would be ready for me when I got home from work.
Yet, Jan has problems with his toileting, fusses and grows restless and has tantrums, does not clean up after himself, and cannot do a thing for himself nowadays if his family is not around him.
For the questions people ask about Jan which are not so easy to answer, my parents and I usually take a few moments to try and organise our thoughts before replying. Sometimes we just smile.
Mum once remarked, ‘He looks like such a grown person outside. But once he steps into the house, he looks like a baby again.’
It is something that we had all noticed, and is quite amusing but at the same time quite melancholic.
Something else occurred to my mother.
‘I’ve been looking after a baby for the last nineteen years,’ she said in amazement. ‘People get exhausted looking after babies after one or two. No wonder I’m a little drained.’
Then my mother smiled. It was such a quiet and beautiful smile.
The 6th Step
One of the last things I ever wanted to be was a teacher.
I never liked teaching. Or perhaps I felt I did not have the talent or interest for it. The occasional tutoring stints were fine, but teaching itself to me was about as alien as a blue cow with pink spots and a purple unicorn’s horn.
In my childhood I aspired to be a whole range of things. I was going to be a lawyer, a doctor, a mechanic, a baker, a designer. And one profession that was decidedly not included in this colourful assortment was teaching.
The irony of me teaching kindergarten is that I was expelled from mine. I had gone AWOL one too many times because of poor health. I was probably one of the pioneers to achieve such a feat, but there you have it.
One of my memories from kindergarten was being separated into our mother tongue classes for the first time. I remember my form teacher, a plump, kindly-looking Malay lady, looking at me as I stood still when all the other children were shuffling to their respective classes. I must have looked like a lost sheep, and she asked me if I was not going to go to my class. I then asked her which one. She looked a little bewildered, then went to check her register before informing me that my beloved parents had put me down for Mandarin.
Now, dear Reader, the problem with this was that I had never spoken a word of Mandarin in my short life. The only Mandarin I knew were a few words I had grown used to hearing on Chinese drama serials. I was flabbergasted; it was as if my parents had thrown me into a foreign pit, as though they had put me in a parcel and shipped me off to the Sahara.
Naturally I failed spectacularly in Mandarin class. I was, admittedly, not the most hardworking pupil my teachers had encountered. My memories of the lessons now are hazy at best. I do remember my Mandarin teacher teaching us the Chinese character for “home”, and explaining to us that it looked like a pig under a roof. Thus, a pig under a roof was about the length and breadth of my kindergarten Mandarin education.
I recall the November just before I was to enter primary school. I was barely literate as I had, by then, abandoned my alphabets and numbers for a long time. Somehow, through my parents’ efforts, I managed to regain it all in time for school.
As I had not had much real schooling experience, my mother had to constantly remind me that exams were when children were not allowed to look at what their friends were writing. In my very first examination, I placed second in class and to this day it is one of my mother’s most favourite stories.
After that auspicious beginning, I became a good student without trying. I never really studied in primary school. I had also never known tutors nor tuition, despised assessment books and would only sit down to crack them open, with great reluctance, under threat of punishment.
When the Primary School Leaving Exam drew near, my brother helped me out by throwing all my school books down a drain. My parents fretted but – it was inappropriate of me, of course – I rejoiced.
The rejoicing faded somewhat when, exactly on the Sunday before my first paper, I came down with a nasty case of tonsillitis, flu and swollen eyes. I drank lots of water in a frantic bid for a miracle cure within twenty-four hours before the examinations began.
In truth, I had probably come to take my good grades for granted. Even though I got A-stars and As, my final PSLE aggregate turned out fifteen points short of the numbers that had danced in my daydreams. I sulked for a whole month afterwards.
I recall my Primary Six form mistress, a wonderful, brilliant woman named Agnes, with a stern countenance and eyes that twinkled with good humour. Once, as we were preparing for the examinations, she asked us, ‘Why should you do well for your PSLE?’
The children began giving her precocious answers such as, “It’s for our future” and “So we can get good jobs”.
‘Wrong,’ she scoffed. ‘Don’t talk nonsense, you’re too young to be thinking about getting a job. You’re going to do well for your PSLE so that you can get into a good secondary school.’
And that w
as that.
I did as she said, and got into one of the top ten secondary schools. After that, I went on to one of the top five junior colleges.
One of the results of my education being disrupted and my brother’s autism was that I became fascinated with epistemology and psychology, and the anomalies of the human mind. So even when I was away from formal education, I never left my books and pencils and I never let my dictionary out of my sight. When I began studying Japanese as a third language, one of the words I grew extremely attached to was dokugaku, meaning “self-study”.
Given my past aspirations, and the fact that I had gotten along on my own without teachers for quite some time, I surprised even myself when I became a preschool teacher.
I have been asked, “You teach children. So how do you teach your brother?”
Teaching my brother has never come naturally to me. I knew how to read to him, play with him, and I knew the things he liked and those that made him happy. It had not occurred to me that there was anything else to it.
My mother tutored him like an ordinary child. There were no flash-cards or rhythmic routines. We had not known much about such things then. However Jan responded to her lessons, and so things went well.
As for me, I have never gone, ‘Jan, this is a dog. It goes rarf.’
It is strange. My parents would always point out that as children, Jan was the one more interested in his surroundings. During a car ride, he would press his nose to the window glass and watch the scenery. I would be a dozing heap in a corner of the backseat. He liked watching crowds of busy people, too, whenever he had the chance. Jan loved the hustle and bustle and brisk activity. I, confronted with the same sights, would again fall asleep.
