Jan soon grew to be a round, healthy, happy toddler and no one suspected anything different. He first sat up at six months. His first words were “mam mam” and “meow” at around the same time. He stopped saying anything else after that.
At one year and two months, Jan took his first steps. When he was two and a half years old, still not another word had come out of his mouth. The grown-ups suspected he was either a slow developer, or had tongue tie. Tongue tie happens when the membrane under the tongue is unusually short. It pulls at the tongue, which then cannot move as freely. People with tongue tie have trouble speaking.
Little Jan was brought to see the general practitioner. The doctor said Jan’s tongue was perfectly fine. It could be autism.
At the time, my mother had no idea what autism was or what the word meant, but she knew something was not right. She excused herself from the doctor’s office, went outside and began to weep. Now this really was something, because my mother is not a weepy sort of person.
My parents called doctors, and they called other doctors. My brother was carted all over the place like a wrongly-addressed parcel.
One Dr K B Phua, a gifted and respected paediatrician, arranged for speech therapy sessions for my brother. The therapists said that Jan was “ego-centric”, but they were not able to properly categorise him as autistic. In fact, he did not seem to really fit in any profile at all.
When Jan was three, the speech therapists contacted Balestier Special School. They arranged for assessments and ran him through a gauntlet of tests with cameras and videos and machinery. Jan was also brought to see Dr Vera Bernard-Opitz at the National University of Singapore. But he simply did not fit into any of their programmes. They kindly advised us to bring him home. Knowing my brother’s bossiness, he might have been trying to run a few programmes of his own over there.
All the while, Jan seemed perfectly normal aside from his not talking. He would help my mother with the household chores, like doing the laundry. When we were cooking for a function once, he helped spoon glutinous rice into the cups that were to be served to the guests.
Then out of nowhere, my brother began to show signs of hyperactiveness. I was in primary school at the time. I remember how he would ricochet about the house like a pinball gone loose. ‘First he’s here, suddenly he’s there,’ we used to say. You did not even see him move.
Jan also began to develop habits like hand-swirling and staring at ceilings. He liked anything circular and ran around in circles. Other times, he was just running everywhere. He was a whirlwind packed into a little boy, a human cannonball.
It seemed, too, as if he had to rebel against us every step of the way. If you wanted to get him to walk, he threw himself on the floor; if you picked him up, he would deliberately weaken his knees and let you drag him along; if you wanted to get him to sit down, he would leap up and dash off. When you wanted to stop, he would go; when you said up, he went down; when you said yes, he said no.
He once managed to single-handedly loosen the door frame to one of the bedrooms. I remember coming home from school every day and using a hammer to knock the sides back into place before we got it fixed.
And if there was any need to hold him down, it would look as though the grown-ups were trying to flatten a tiny tornado. Jan would twist and turn and wriggle his way out of their grip with fantastic skill. When he could not, he at least made sure not to go down without a fight.
Jan especially detested going to strange places. Or, at least, he seemed to detest visiting. He put up a spectacular performance one time – the small fearsome feisty thing, all elbows and knees and angry roars, when my father tried to get him out of the car. In the end, he won, and my father had a picnic with him in the car while my mother and I did the visiting.
The psychiatrists said he would outgrow the hyperactiveness. Finally, they made an official diagnosis of his autism. Jan was two and a half.
The 2nd Step
Special schools have long waiting lists. About two years long, to be precise. My brother joined the list when he was nearly three. In the meantime he continued with his speech therapy and visits to the psychologists, developed bronchitis, and spent his time bossing everyone around.
The first time I was allowed to look after him by myself was when I was about ten. Jan was four. Mum had started her traction treatments at the hospital for her pro-lapsed intervertebral disc (PID). This is where the disc or discs that help to hold a person’s spine together gets punctured or torn, and can be really quite painful.
I was very excited at being given the responsibility. I would play with him and make sure that he ate his lunch and did not get into trouble. At showertime, I would wash him very thoroughly and after that proudly report to my parents that he was “squeaky clean”. It was around this time we started calling him Squeaky, and the nickname stuck for the next ten years.
Jan liked showers and baths. He liked soap too, perhaps a little too much. He had seen a children’s soap commercial on television in which the kids submerged themselves in mountains of suds, and decided he was going to do the same. He would sneak into the bathroom and squeeze out bottle after bottle of soap and shampoo until he and the entire bathroom were covered in thick foam and soapy water.
People have said, ‘Why don’t you just
