Ordinary Stories in an Extraordinary World

by Aqilah Teo

  I asked her what she would like to see happen, or be made available in the sphere of special education.

  ‘I have a few glaring thoughts that constantly occur to me,’ she offered. ‘We could do with more facilities. Transportation, for example, for the physically-challenged. Even special schools like us find it so difficult to have adapted vehicles to transport our students on wheelchairs around. The cost is so high and parents cannot afford it.

  Even the public buses that take wheelchairs aboard, it is a new thing, and not widespread. We still have limited accommodations for special needs.’

  The 6th Step

  Fauziah asserted that the quality of available services should face regular assessment according to a set of standards.

  ‘How does that work?’ I asked her.

  ‘Let us take early childhood intervention, for example. This is where the child has been diagnosed, and special needs professionals are taking steps to give help,’ she said. ‘Everyone says this is important.’

  I found out that there are families who cannot afford it. This is partly because of something that is called “means testing”, where it is determined whether a family deserves to receive any financial help to fund early intervention for their child based on monetary criteria.

  ‘These infants and young children require intervention so that they can be developed better. Having the EIPIC [Early Intervention Programme for Infants and Children] centres go through means testing defeats the philosophy of early intervention,’ she said.

  ‘Then, there is the other spectrum of special needs; the older group, as I am sure you know, are often left with fewer and fewer places to turn to. There are places such as the Eden School, St. Andrews, Metta, APSN and MINDS who take older special needs children in, depending on their cognitive levels. For the children with disabilities, there are day activity centres and sheltered workshops, and homes,’ she said. ‘But places are limited.’

  ‘They do seem to be, very much,’ I admitted.

  She went on to talk about the above-18 services which are still lacking. So many children are left with no place to go.

  ‘Of course, we always try for inclusion and integration. Mainstreaming. But it is a fact of life that some will never be able to do that,’ said Fauziah.

  Then she told me a piece of promising news. At Rainbow, they are looking to extend and expand their curriculum for students till eighteen years of age. Graduation would then take place at eighteen years, and not twelve. This is being planned for 2013.

  ‘I am happy to hear that,’ I said with enthusiasm. ‘Jan loved all his years schooling at Rainbow. Other children will be able to benefit a lot from that. I hope very much that it will happen.’

  The 7th Step

  We went on to talk about awareness and publicity.

  ‘Nowadays people are more accepting as we are “pushing” the children out,’ she said. ‘People get to know the children. They create their own publicity.’

  ‘What about media publicity?’ I asked. ‘I mean, I know there are televised charity events and suchlike. But what do you think the media could do to help raise awareness on autism? On special needs in general?’

  ‘This is actually a controversial thing,’ replied Fauziah. ‘We would like our school to be treated as a real school rather than a charity. Of course, we still need the Community Chest and such to raise funds for us. But the children deserve to be recognised as students, real schooling students.’

  ‘How do you mean?’ I asked.

  Fauziah said she would like to see the children be treated the same as students of mainstream schools. Special Education is labelled so decidedly as a social service. Would it not be better to highlight the achievements of the students instead of simply telling people what poor things they are? That way the children could show everyone what they can do. They would feel proud and happy.

  ‘For example, in the Youth Olympic Games last year [2010], some of our students took part in the torch relay,’ Fauziah informed me. ‘Now, if a mainstream school had sent representatives to the Games, the television and newspapers would report such things with pride. Our students deserve that kind of recognition too.’

  ‘Did the media not take much notice at all?’ I asked.

  Sadly, they had not.

  The special needs educators are hoping this will change. Athletes and representatives from special schools are sent for the Special Olympics and the Para-Olympics, and the students win medals just like any other good sportsmen. But they do not get any recognition or cash prizes. In the first place, it is even difficult to get sponsors for them to enter these events.

  The media could tell people more about the children’s successes and talents, the way they do for regular children in other schools. Special needs children deserve attention and the chance to display their gifts just as much. If one simply keeps harping on the notion that these are charity cases, poor underprivileged little creatures, it will be difficult to change people’s mindset.

  I too learned that special needs educators do not like the term “underprivileged”, as it stereotypes the children and labels them.

  ‘All this does not help dissolve the stigma and negative ideas that people already have about “special” children,’ Fauziah said.

  ‘I’m blown away,’ I admitted. ‘I had no idea myself that the children were doing all these things. Olympics!’

  ‘Yes,’ said Fauziah with a smile. ‘It makes everyone in the school proud.’

  ‘They’re busy students, just like in other schools,’ I said.

  ‘Exactly so,’ she said. ‘We have co-curricular activities too, and these have expanded a lot. We have always had swimming and water-based activities. But now there are more, like batik painting, crafting and performance arts. And people have hardly any idea that the children are doing all these marvellous things.’

  I asked, ‘So do you do any of your own publicity?’

  ‘The best way to do that is to bring them out,’ she said.

  ‘Where would you normally bring them?’ I asked.

  She said that they only used to have the students use the school swimming pool, and indeed I remembered how it had been for Jan. Now the children are brought to public pools as well.

  It is all part of what they call “community mobility activities”, in which the students are brought around neighbourhoods. They learn to be independent in different environments and settings. And the neighbourhood community sees this. They get to know the children a little better.

  So I asked if people were accepting towards the students.

  ‘We will always have those that are not,’ she said. ‘But nowadays people are more accepting because we are gently pushing the children out to them, so that it is easier for the children to reach them, and for them to reach the children.’

  ‘Personally I think what most of us wish for,’ said Fauziah, ‘would be for our schools to be seen as an educational institution.

  At the moment, schools and centres are still fragmented. They remain under the care of social welfare and voluntary organisations, and are not looked after like other schools are. Hence it is still difficult for the public to see them as real schools, and to recognise the children as honest-to-goodness students. There is progress – schools have excellent models and frameworks – but it is far from enough.

  ‘Maybe I am biased,’ said I. ‘But I think that there could be so much more that can be done to help special needs children.’

  ‘Well, our schools and students need extra help and resources. At the same time we do operate independently, and with that freedom and flexibility, we produce a lot of good results,’ Fauziah said. ‘But as I have mentioned it is possible to balance it all – independence and having some measure of support like the regular independent schools.’

  The 8th Step

  ‘I think the teachers and therapists get too little credit,’ said I. ‘They are unsung heroes. It hardly seems fair.’

  ‘I cannot say that is unt
rue,’ agreed the good lady. ‘They hardly get any recognition, and their salary is not equal to the changes they make. Yes, I believe that Special Education staff could stand to get a little more acknowledgement for their work. It would do so much good for their morale.’

  The staff will always be there, of course, she said. It is due to them that programmes work. A programme is successful when teachers believe it will be. A lot of it rides on the staff’s conviction. However Special Educators too need the chance to prove themselves equal to such challenges.

  ‘Especially since they are doing one of the most magnificent jobs out there,’ I said.

  I knew it. These special education staff were truly worth their weight in gold, and that it was one of our best-kept secrets.

  ‘Sometimes we lose staff to private institutions, commercial places that pay better,’ she said. ‘It cannot be helped. They try their best, but the salary is not enough. Teachers need to make a living, too.’

  ‘This could be helped,’ I said.

  ‘It is one of the things I feel could be looked into,’ observed Fauziah. ‘Salaries. School fees too. Some special schools charge hefty fees. If we had a standard to base the fees upon, special needs parents can be relieved of heavy school costs. Salaries could also be set at a standard.’

  ‘I agree,’ I said. ‘No matter how much people like to avoid the subject, money is still a question everyone asks. Whether directly, or quietly to themselves.’

  The 9th Step

  I flipped through my notes, then I remembered something.

  ‘Did anything happen on World Autism Awareness Day 2011?’ I asked. ‘There was no news about it. Nothing happened in 2010, I think.’

  Fauziah nodded. ‘We did have some events on World Autism Awareness Day this year [2011]. There was a seminar and a carnival. We held a collaboration with the National University of Singapore DUKE medical students.’

  ‘It was not publicised, though, was it?’ I asked.

  She shook her head. ‘It was, but maybe not enough.’

  ‘I suppose it is a start,’ I said. ‘Well... one last question. If volunteers wanted to come in, all they would have to do is call the school?’

  ‘Yes,’ smiled Fauziah. ‘They could also approach us directly. We do have a volunteer coordinator.’

  ‘Things will continue to change.’ I ended the interview on a buoyant note, rising from my seat and gathering my notebooks.

  ‘They will,’ said Fauziah.

  I shook her hand and thanked her again for having me, before taking my leave.

  Outside the administration office, it was the usual busy scene – the children gathered in the front hall, waiting to be taken home. It was a Friday evening, and I hoped they would have a good weekend.

  The 10th Step: The Rook in the Castle

  There were still more questions I wanted to ask. I met with an expert whom I shall refer to as the Doctor.

  It is not easy to become an expert. Part of the process requires one to obtain pieces of shiny paper with ornate curly fonts, preserved inside attractive frames. The rest of it is time, memory, and skill.

  The Doctor told me he started out as a clinical psychologist in hospitals. He spent time in clinics and private practice, and had had the experience of helping autism parents before. Somewhere along the way, he became intrigued enough to dive right into the field of autism. He has been in it for fourteen years now, working both in his hometown and abroad, teaching and lecturing, training teachers at the National Institute of Education (NIE), and conducting research.

  As the Doctor himself summed up, he had been ‘here and there’.

  The 11th Step

  I asked him how he taught teachers.

  He first informed me that all Ministry of Education teachers are required to have a bit of special needs knowledge, not just Special Education teachers.

  ‘It is a must,’ said he. ‘The training is not as detailed, however. It is a hundred hours of basic training in NIE. If the teachers decide to specialise, then that is a different thing altogether.’

  The Doctor said that besides teaching specialised teachers, he also trains those who are to be special needs support staff (including Special Needs Officers) in mainstream schools. All special education teachers must earn a diploma from NIE before they can teach.

  ‘They have to be empowered to support Special Education,’ said the Doctor. ‘We equip them with skills, aim to shift mindsets and attitudes, cast away misconceptions. You get to explore how differently mainstream teachers and special education teachers feel towards children too.’

  An mental image sprang to mind; I saw teachers trainees being popped into a big, machine like an efficient, fantastical car-wash, where they are doused and sanitised and polished and armoured, and then dispensed sparkling in full gear and girdle.

  ‘Do these teachers get help with their lessons?’ I asked.

  Apparently, the teachers prepare their own lesson plans. By then they are equipped to do so. However the curriculum may be different from school to school. In some places, teachers are largely left to their own devices. In others, they may have a range of resources at their disposal.

  The 12th Step

  ‘What do you look out for in your teachers?’ I enquired. ‘What do they need to have before entering the profession?’

  ‘Two things,’ said the Doctor. ‘They must have the Heart, and the Skills.’

  He said teachers should have the Heart to support students with special needs. They themselves must want to do it. And that is not as simple as it sounds. And of course Heart, in itself, is not enough. They must have the content knowledge right at the tips of their fingers, ready to summon whatever information they need at any time.

  It would also be good if they have had experience. It is important that they are well-versed in child management and human development, and they must hone the skill of assessing their charges correctly.

  ‘It is what I like to call “heartware” versus “software”,’ declared the Doctor. ‘The ethical and attitudinal components, and the skills and resources.’

  I asked if teachers were expected to provide their own resources.

  ‘I really could not say,’ he replied. ‘It depends on the school funds. One needs money for equipment and teaching material.’ He looked thoughtful, then sighed. ‘Truth be told, the diploma takes one academic year. It is rushed through as best we can. It is so much to cram in so little time.’

  Next I spoke with the Doctor about what fixes could be made in the realm of autism education. He told me about the improvements in the field over the years.

  Here is what I thought. Certainly there is improvement. I do not think anything has had a choice in that, as time forges on. Even mops and brooms have seen improvement. I have a green self-wringing mop with an extendable handle at home, which is probably more than what the moppers of old could dream of. Surely there could be more than just improvement.

  One is probably a little prickly when it comes to the word “improvement”.

  The 13th Step

  I decided to ask the Doctor a crafty question.

  I asked, craftily, ‘But is the rate of improvement up to standard? There are far too many holes in the system not patched and which should have been. What about yourself? What would you like to see happen for the autism world?’

  ‘We are probably somewhat behind compared to other countries. What I would like to see here are more options for those in their post-school years,’ answered the Doctor promptly.

  Coincidentally, he told me, of late, he had been talking to parents with autism children aged eighteen and above. He wanted to find out what their aspirations were, what they sought for their children and so on. It was a piece of research that he was carrying out.

  ‘As it turns out,’ he observed, ‘many of them are stuck with no place to go.’

  Hear, hear and huzzah, said a voice inside me.

  ‘We have well enough resources for early intervention,’ went on the
Doctor. ‘But there is not much left for them to do after they graduate.’

  ‘We need more supported employment, sheltered workshops, support organisations for parents and families. Support for autism in the early years is high, but decreases as the child grows up. In the end, many autism individuals have nowhere to go after they finish school.’

  Aha, thought I. Just what the doctor ordered.

  The Doctor went on to talk about the misconception that autism individuals who are past the schooling age do not need any more education. He felt there should be further provisions. This is something that is experienced even in other developed countries, but in Singapore it is somewhat more acute.

  ‘Any examples of what they are doing elsewhere?’ I asked him.

  ‘In the United States, there is a programme called CAP – Community Assistance Program,’ explained the Doctor. ‘How it works is that the worker visits the family’s home to spend time with the autism individual, going out, engaging him in recreational activities. There is respite for the family. We forget too easily that living with and taking care of an individual with autism can be very tiring.’

  ‘So you have worked with them in the States before,’ said I.

  The Doctor nodded. ‘Six years ago I taught Sunday school to young men with Autism Spectrum Disorder (ASD).’

  He further explained that we need proven models of support. These will help distinguish those who can benefit from competitive employment, and those who need sheltered employment in their adult life.

  ‘Of course, we will need to be careful of the systems we import,’ the Doctor reminded me. ‘We must be mindful of the differences in culture. Asian parents, for instance, might prefer to have their autistic family members stay at home with them.’

  He also spoke of job coaching for autism individuals. They need to be aided to learn to find and stay in the right jobs. The goal would be to try and expand their employment options as much as possible, perhaps even in career advancement. The Doctor said that this is still an emerging thing here.