by Aqilah Teo
She reached her floor, gave us a parting smile, and left me bemused.
I do not think I am a good sister. I have disagreements and quarrels with my brother. At times I can be horribly selfish. I am a normal sibling.
Among the siblings of special children I have come into contact with was one David, from the United States. His brother has Asperger’s Syndrome. David was twenty-seven when I spoke with him. His brother was some four years or so younger than him. He had admitted at the time that living with his brother could be very trying, sometimes even embarrassing. He said that even at his age, it was difficult to deal with the fact that his parents paid more attention to his younger brother than to him.
At the time, it had irked me when he said that.
You’re twenty-seven years old, not a child, I had thought. Start growing up.
However, in hindsight, it had been unreasonable of me to think that of him. I was not in his shoes, no matter how similar our situations were. I may have had the advantage of more support from my parents, and in turn am able to pass on that support to my brother.
It was courageous of David to have been so honest. Moreover, despite what he said, I do not think he loved his brother any less.
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 activity rooms like in regular schools, and even a hydrotherapy pool.
There are special chairs for children who need them, and therapy rooms. Still, even regular schools have students in wheelchairs and nurses and counselling rooms. It is not so different after all.
School dismissal time might be the most surprising to outsiders who expect scenes of abnormality. It is all so familiar – the rush of parents and domestic helpers, children queueing up with their classmates, and teachers waving goodbye to their students on school buses.
When it was time for me to meet Ms Fauziah Ahmad, she came out to greet me in the administration office, then led me to her own.
The 3rd Step
Fauziah invited me to have a seat on the sofa set in her office. She asked about Jan, and I told her he was better. Slightly grumpy and refusing to leave home, but he was happy over the little things. She said she was glad.
I rifled through my notes and began by asking how she started working with special needs.
She thought about it. ‘It was something I had always known I wanted to do. Even back in school, I would go out for lots of volunteer work. I’d wanted to tie in that part of my life to my professional one. So when the time came, I jumped at the chance to apply.’
I wondered aloud if she had had any experiences with special needs in her early life that might have influenced her.
‘Well, no, I guess not really,’ she said, looking as though she were trying to recall something. ‘I do have a story to tell though.’
As a young child Fauziah had an uncle, her
mother’s cousin. He played with the rest of the children, but everyone always knew he was different. Scarcely anyone thought about special needs at the time. To them he was just who he was; a little strange, a little different, and that was all. He was never diagnosed. It never even occurred to Fauziah that he was special till she entered the field many years later.
‘I’m not sure how much that affected me when I had learned more and knew better,’ said she, ‘but it might have in some way. It left a mark.’
‘I tell my new teachers all the time. It isn’t about the salary. There is plenty of better-paid work out there. It isn’t even about credit. You honestly hardly get any. It is really about the children, and the want to work with them. Someone has to do it. You have to decide if you are going to be that someone.’
‘You mean having the passion,’ said I, and the good lady nodded.
‘Passion is not an excuse to pass these teachers over for better pay,’ I said. ‘People are being taken advantage of.’
Fauziah smiled and gave a slight rueful shrug. ‘That cannot be argued with. It is something I hope will change.’
I asked her what other advice she gave her teachers.
‘I say to them, you will only know the difference you made when you have experienced it first-hand,’ she replied.
Fauziah told me that teachers get brought in for trials and attachments with the schools. This is to let them find out for themselves if they are really suited for the job.
‘The satisfaction to be had from your successes, no matter how small, is priceless. They would never know it unless they experience it for themselves,’ said she.
‘What happens to these new teachers then?’ I asked.
She explained that the teachers are first brought around the school, and their interactions with the children monitored. Teacher-simulation exercises too are carried out.
More than twenty years ago, she herself was a new, untrained teacher in another special school. The next year, she was offered two places to study in the National Institute of Education – under Education or Special Needs.
She chose Special Needs. Everyone else was telling her to do otherwise. Teaching in a regular school, after all, brings better pay and a lot more benefits. Teachers in regular schools are also regarded highly, and there is status in it. Fauziah said her family was upset with her decision at first.
‘It was challenging to get them to accept the path I had chosen,’ she said. ‘More than once, I had to physically restrain children and went home bruised from the scuffles. My father was so angry. “I’m going to complain to the school!” he said,’ she laughed. ‘And I told him, you can’t really do that. I’m a teacher there, not a student.’
‘It was tough,’ she went on. ‘But I found a way.’
What the excellent lady did was to approach some of her students’ families, and ask for permission to bring the students to visit her home, and let her family members interact with them.
‘The plan worked,’ she said, smiling. ‘My family learned to accept what I was doing, even support it. My father was working near one of the schools I was posted to. He would phone me just to tell me he had seen some of my students.’
‘But do you see?’ she said. ‘My own family had a difficult time at first, accepting the special needs world. What more of the public, who has nothing to do with it at all, and hardly any knowledge of it? It helped me understand why people behave the way they do, sometimes, to special needs children. But there have been some improvements over the years. People are finding out more.’
Fauziah added that she thought it was a matter of empathy rather than sympathy. If one went and saw these children as nothing more than poor little things to be pitied, it gets no one anywhere. What one has to do is empathise with them. But the public rarely shows empathy; it is difficult for them.
‘It is about awareness, is it not?’ I asked. ‘They are not aware.’
‘That is slowly changing,’ she said.
I thought it would be nice if things changed just a little faster. I asked her how she thought we could raise awareness better.
She said, ‘It is interesting. We have students who come in to do a few hours of community service for extra credit points in school. The extra credit is all they think about. What is wonderful about it is the change you see when they leave.’
‘You see in their faces, their mannerisms and words, that it is no longer simply about scoring school points. One day could change their entire mindset, open up their world so much more. They grow up in those few hours, like you would never have thought possible. Some of them keep coming back, later, even when there are no more points to earn.’
The 4th Step
It was a surprise to me when Fauziah said that the school personnel were always a little busier when volunteers came in.
‘I would have thought the opposite. What happens?’ I asked.
‘Well, we have to delegate teachers and staff to oversee them, on top of our regular schedule, so we can be stretched pretty thin,’ she said. ‘But in the end, as you see, it is all worth it.’
The drop of water that starts the ripple, I thought. And we are all waiting to see how far and wide the ripples spread across the pond.
‘We also have corporate people coming in to volunteer for our events, like Sports Day or Children’s Day,’ added Fauziah. ‘Sometimes they offer to organise events for us, with gifts and vouchers for the children to take home.’
‘That sounds superb!’ I declared.
‘It is,’ she agreed. ‘Of course, we have so many things to see to, and there is not enough done still. But we cannot deny that there have been improvements over time. Things were very different in, say, 1984 or 1985.’
For a long time, she said, the schools were the ones seeking people out, trying to get help. Now, staff from MediaCorp, Standard Chartered, Civil Aviation Authority of Singapore and many others are offering sponsorships and getting involved in the activities.
‘Being able to have camps and things for the children help a lot. It is especially useful during the holidays, you see, when the children have nothing else to do,’ she explained. ‘It can sometimes be difficult for their parents. So we stack these events up, one after another, a whole series of things the children can participate in. Then the holidays fly by quite quickly.’
It is sad that some parents might not want their children home for the school holidays, but it might be something that cannot be helped.
‘I realise some parents may not be able to cope with a special child twenty-four hours a day,’ said I. ‘It takes a lot of time and energy and attention.’
‘I suppose we must look at the circumstances,’ said she. ‘Parents still have to go to work. Others may simply not be able to manage emotionally.’
One or two parents even send their children off for the holidays with their domestic helpers. They allow the helpers to return home for the month. This is because the helpers are more able to care for the children. These parents pay for everything and the children fly off with the helpers to Indonesia, or the Philippines and such.
The 5th Step
‘So, what would you recommend for parents who find it difficult to accept their child with autism or other special needs?’ I asked.
‘This is always a tricky question,’ said she. ‘Of course, we have our social workers and counsellors, but it is still a long journey. They have to decide for themselves that they want to take it.’
‘Some are in denial,’ I pointed out. ‘They cannot believe that their child is different.’
‘It is difficult if they are closed up,’ said Fauziah. ‘They experience many emotions. We try to help them reach the acceptance stage. This is a point where they feel encouraged and determined, and decide that they are going to walk the road with their child, to do everything in their power to make things better for their child.’
I asked her if all of them reach that stage eventually.
Fauziah shook her head. ‘Some do
not reach it at all. And you see, the question that comes up is always “Why me? Why my child?” But the way I see it is, “Why not?” It is something that could happen to anyone.’
She knows of a couple who were both special education teachers, and who have a child with Down’s Syndrome.
‘Special Education teachers, for instance, never think it will happen to us, simply because we work in the field. We take it for granted, for some reason,’ she mused. ‘But it does happen, and then the thing to do is accept it and move on.’
When someone cannot move, they cannot improve, said the educator. When parents deny who their children are, it is difficult for teachers or anyone else to talk to them. Communication concerning the child gets disjointed.
And when the grown-ups are uncertain, the child’s progress goes that much slower. There are also some parents who may think they have accepted their child but still push him or her beyond their capabilities, without realising it.
‘What is distressing is the profit-making centres out there, which tell these parents everything they want to hear, simply to make money,’ Fauziah said.
What happens is then these centres manage the children the way the parents think the children should be managed. This can be very different to what the students actually need. These children then regress in their development and skills.
‘Because they get stressed?’ I queried.
‘Yes,’ said she, with a nod. ‘The grown-ups put great amounts of pressure on the children. It does more harm than good. When the children are unable to cope with that pressure, they go back into their shells.’
‘Then, what about parents who truly accept their child’s condition?’ I inquired. ‘Let’s say a new parent with a child with special needs wants advice and aid. However there is still not enough being done to provide for special education needs.’