The 12th Step
I do not know how far one can go for a person like Jan. Some people have been tired out after walking a few steps with him. Others have gone a few miles further down the road before they too hit their limit. Then there are some who, after inevitably winding down, simply rewind their clockwork, get back up on their springs and continue on the journey.
How far one can humanly keep going for a special child is an unknown and incalculable quantity. I only know simple things, one of which is that I can at least try to bring Jan across physical miles.
He loves the sunwalks. My brother loves it all – the sights, sounds and smells, the land and sea, the sun and rain.
I cannot boast of having brought him to the ends of the earth, but he has tasted the salt of sea air, climbed hills, explored hidden corners and deserted potholes, and watched the colours of the sky morph and change. I am glad when he is glad. Perhaps, one day, I indeed will be able to bring him to see the ends of the earth.
Chapter 10
People Who Know Things
I never feel it is fair when people try to explain what autism officially is, but do it in a hurry. They like to sum it up in one or two vague sentences. It can be very misleading. But I suppose there is no helping it. For my part, I shall describe autism in the following notes, in the way I feel best explains the condition overall.
The word “autism” stems from the Greek word autos, meaning “self”.
The most common trait of individuals with autism is that they are unable to relate themselves to people and situations surrounding them. They are mentally and socially isolated from other people, and are mostly alone and self-regulated in their activities. They tend to shut out anything that comes to them from the outside.
There may be certain signs and symptoms that generally appear in a number of individuals with autism, but certainly no two autistic individuals are the same.
There are ongoing debates on what the autistic spectrum disorders are and what they constitute, and many attempts have been made to precisely define autism in the medical and psychological fields. What is certain is that it is not a disease, and that it is a lifelong condition.
I like best what Dr Howard Buten penned in his book Through the Glass Wall. He says that the more we know about autism, the more we realise how much we do not know about it at all, as it is so mysterious and contradictory. One cannot say autistic people are a certain way, because there will always be some who are not. Making blanket statements about their condition would lead to misunderstandings about the autistic community.
The 1st Step: The Knight Leads the Cavalry
Some folks have the idea that I am an authority on autism. I may know certain things about it because of Jan but I cannot claim to know a great deal.
I have been too busy being an autism sibling to become an autism expert. Experts have been trying to figure out the autistic puzzle box. I wanted to hear what they had found out from it.
It had been more than five years since I last set foot in a special education school. I meant to look for Jan’s old teachers again, and the doctors and school aides who had helped him. I felt like a detective.
A Dr Vera Bernard-Opitz, who had been one of the first people to shake Jan by the hand, as it were, is no longer stationed in Singapore. It seems she continues her work overseas, and travels far and wide for her work. I believe she does stop by once in a while.
A certain Dr Sharon Chan who had worked under the Child Guidance Clinic and is considered an authority in the field is, alas, retired. She had helped Jan a lot at one point.
My family had also long lost contact with some of Jan’s favourite teachers from Rainbow School at the Balestier campus. As you can see, this was not such an easy task to undertake. People move about and venture to other things as time passes.
The 2nd Step
My mother remembered the contact of one Ms Fauziah Ahmad, who was Jan’s principal at Balestier.
I had met her once or twice before. I recalled the dignified lady, calm and benevolent, sitting behind her desk in her office. I had seen how she had championed her teachers to create a cheery and busy school, one that gave Jan memories cherished till today.
It did not take long for me to find her. She is now the principal of Rainbow School at the Margaret Drive campus. (Jan’s old school had long moved.) The kindly lady agreed to meet with me.
It was about three in the afternoon when I reached the school. Most of the children were still in class. There were a few small groups from the early session that were being seen off by the teachers onto school buses. The sight of their yellow uniforms was nostalgic. I was reminded of how much Jan had loved his.
I was a little early for the appointment and decided to walk about the school. It gave me a sense of déjà vu; the place felt the same as Jan’s old school. I was glad for that.
Now, if you stepped into a special school, you will not see a charity centre or hospice, with busy nurses in crisp white uniforms. It is, plainly, a school. You will see programme and event notices pinned up on the boards; photos of beaming children with their medals and trophies; artwork on the walls and the stair banisters. There are classrooms and teachers, and groups of children busy learning. There are
