Career? Not by choice!

When Sophie was diagnosed with a visual impairment, there was no one here in Singapore who could help me. I struggled so much trying to learn how to help her. Thank goodness for Gillian from Melbourne who came to our rescue.
Taking Sophie all the way to Australia for specialized assessments was costly for the family. But we had no choice. There was no one here who could do it. Those supposedly in the field of visual impairments were not even aware of any specialized assessments for such children.
It was the suggestion of Gillian that I took on the challenge to become specialized in teaching and supporting children with visual impairments myself. Desperately wanting to know what to do for my own child, I invested all my savings, and not to mention my time, and the time spent away from my family to pursue the masters programme.
Contrary to what many people think, it was not my intention to carve a career out of this for myself. It wasn’t to be a money-making venture.
When I graduated, I thought it would be great if I could share my knowledge and experience with others. So I volunteered my services. No one took me seriously. I wasn’t given the opportunity to work with the children I could help. Others just want me to tell them what to do to help the children.
When people started asking me for specialized services, I asked for a nominal fee. Some we’re grateful for the affordability in my fees, but many were appalled that I was charging at all. “I thought you do this as a volunteer?” Sure, but someone has to pay for my transport and time away from my family.
No, I do NOT want to do this for life. From the very start, I had requested that others be trained I this same area as I am. I do not want to be the ONLY one!
No one has heeded my call for training more teachers for children with visual impairments, and it seems that I am still the only one around. My services are highly sought. But this is not what I wanted, or want.
I only want to advocate for such services to be available to all children with visual impairments here in Singapore! I do not want to make it a career for myself. That would have been too convenient!
I despair at not being able to spend more time with my own children. I have made it clear. We will need to have someone else trained in 3 years or less. This is not my career choice.

Exclusively Inclusive Singapore?

PM Lee outlined his vision for an inclusive society in Singapore in Parliament. He claims that “no child will be left behind”. But some children will.

He is concerned with social stratification, where the big divide between the ‘haves’ and ‘have-nots’ has grown even wider. No children should therefore be denied the opportunity to an equal education because of lack finances. He, would ensure that. He also wants to make sure our elderly are included in society, that they may age with dignity. With our population ageing at a rapid rate, it is crucial that we also provide for those who have looked after us while we were still struggling in our diapers!

But, he stopped short at that. A portion of society, has been ignored, overlooked, and totally written off from Singapore’s society! Persons with disabilities. To say that they have been ‘swept under the carpet’ would be an understatement, for singly, they may be quite insignificant and even negligible, but collectively, that would have been a really huge bulge under the carpet that cannot be ignored.

In short, this group of people have been literally obliterated and cease to exist in our social equation!

To cater to the needs of the financially-challenged group is a “no-brainer” (PM’s own words, before he became a PM). Just pump in the dollars and cents, and have the children work for it themselves. To look after the needs of the elderly is a social responsibility in line with Asian principles of ‘piety’ and ‘respect for our elders’. And with our rapidly ageing population, something has to be done.

But to address the needs of those with disabilities, it is a long term commitment and dedication. To really accept these people into our lives calls for a total change of mindset, a paradigm shift of what constitutes a human being, and tolerance.

There is much economic returns in supporting children from low-income families – to turn the void deck kid to a Nobel prize winner! As for the elderly, everyone will have to take that route at some point in their lives, so it does make economic sense in that way.

What about disabilities? Not all will benefit from the services and facilities for the disabled. And chances of getting a Nobel winner from the group? practically zilch. Why bother?

“What is an inclusive society? It’s one where everyone benefits from the progress of the nation, where everyone has a say, a stake, and a sense of belonging. It’s one where everyone aspires to do better through their own efforts and feels that he or she has a real chance to move on. Why is this important?

“First, fundamentally, we are one Singapore family. Then it’s a reflection of what we are and our values, how we see ourselves, how we want others to see us. it’s also a practical matter because if we are inclusive and we work together, we stand together and succeed. but if not, we fall apart and we fail.”

It sounds good, promising and uplifting. Until you read the rest of the speech, and then you realise that there are just some people who are not and probably will not be admitted into the Singapore family. Outcasts.

Every time I hear a child with disabilities recite the Singapore Pledge alongside his non-disabled peer, I feel a sense of guilt and remorse. And every year when I watch the National Day Parade, I think about how we are misleading this group of people, pulling the wool over their eyes!

They recite the pledge with pride and sincerity, and revel in our Nation’s birthday celebrations. I don’t think they have in any one moment not considered themselves as Singaporeans. They believe themselves to be part of the Singapore family. What devastation to learn that they have never really been considered a part of Singapore! To be disowned and turned out by the people you have learned to call family.

This is the saddest day of my life!

What you have and what you want

Nobody denies that children with disabilities must have varied experiences and given opportunities to discover their potential. It is the ‘how’ it is done that sometimes crosses the line of what is available and what is demanded.

Having a disability does not put one in the position to demand life’s extras. It is unfortunate for one to have a disability, but it should not be used to generate pity and sympathy, to get advantages and benefits out of it. And the public should be sensitive enough to realise and understand that a disability is not the same as being helpless and pitiful. In fact, many people with disabilities are self-sufficient, independent and have pride. They do not need pity and lesser still, hand-outs and freebies.

Unfortunately, this way of thinking is rife in our society, still. The public view people with disabilities with much pity, and also some people with disabilities feel they are entitled to life’s extras, just because they have a disability.

Take for example, music lessons. Many people with varied forms of disabilities would undoubtedly benefit from exposure to music, be it music therapy, or the study of music itself. And there are even more people without an obvious disability who could also benefit from musical experiences. But it is the former that gets all the ‘perks’, usually in the form of free lessons.

I see many children who could definitely benefit from some form of musical experience, but they do not receive any because the family truly is unable to afford such ‘luxuries’. So they continue with life, without that very dimension that could help them get on, academically, socially, emotionally, and developmentally. And I see children with disabilities, getting free music lessons, even though their families are quite financially capable of paying for such services. On top of that, there are families who actually demand such free services, and complain when they do not receive any. This, I cannot fathom.

Since when, is having a disability equated entitlements and benefits? Why are people so willing to offer ‘freebies’ to those with a disability, yet turn away others who could clearly benefit from their services, and who can hardly afford them in the first place?

I believe, regardless of abilities (and disabilities), economic forces do determine the availability of services and resources. If a child from a poor family has no opportunity to learn music even though the child could benefit from such a programme, why should a child with a disability be readily given such a service at no cost, even though it is not beyond the family’s means to pay for such services? Not all people without disabilities get the best experiences and exposures in life, why should those with disabilities be different?

Worse, many of these recipients of such ‘free’ services are not very appreciative either – commenting on the ‘poor’ level of services they are receiving, or that what they are given is ‘not enough’. They have also come to expect that all services given should be made ‘free’, at no cost!

I find this trend worrying. Young children with disabilities may grow up with a very wrong idea of what charity means. They may grow up thinking that just because they have a disability, they are entitled to ‘freebies’, and won’t even bother to work for anything they want. I don’t think this is the way our society should be moving.

My proposal: for those who are truly unable to afford the full cost of service, a token amount should still be paid. I don’t believe everything should be given, if the appreciation is not really there. I find that some people with disabilities are fighting NOT for equal opportunities, but an unequal one, as long as it is in THEIR favour.

Changes to come?

The meeting with the Minister was both enlightening as well as disturbing.

It was heartening to know that he is aware of the current state of things – that all is not well in the field of care for the visually impaired here. And to know that he is willing to take action to remedy the situation.

It was great news to hear that there are positive steps being taken to improve the state of education for children with visual impairments. But herein lies the unsettling bit.

I believe the Minister and all his policy makers at the meeting do not have a complete grasp of the complexity of the educational needs of children with visual impairments. They tend to compare that to rehabilitation for adults with visual impairments, and align services along such lines. I was interrupted in my attempt to state the differences, and to explain educational needs. Do they not want to hear me out, or they believe they know it all? Well, from the CV of all at the table, I am a “nobody”.

Another worrying comment made by the Minister: that we are seeing fewer and fewer children with visual impairments and multiple disabilities because of medical advancements (emphasis is mine). How more wrong can he be? Research abound showing the rising incidence of children with multiple disabilities, including visual impairments, precisely because of advancements in medical science, in particular, pre-natal care! CVI is on the rise and can account for as much as 40% of children diagnosed with a visual impairment. I believe, visual impairments here still only refer to that affecting the eye and perhaps the optic nerves. Those of cerebral or brain origin have not been considered at all. I think we need work here to create awareness.

As we begin to plan for services for people with visual impairments here, I fear the emphasis is moving towards general low vision care. The presentation by Dr Chiang a post-doctoral fellow here, specialising in low vision care is especially worrying. The emphasis on generic low vision care overlooks several important aspects of support for visual impairments:

1. support and services for children are essentially different from that for adults with low vision;

2. educational support and services for children are not the same as rehabilitation for adults;

3. emphasizing on low vision care would sideline the support and services for those with little functional vision (considered ‘blind’ here);

4. emphasis on clinical low vision care does not seem to include children or even adults with CVI;

5. not enough is mentioned about early intervention for infants and young children.

My priority now, as our team meets in a couple of weeks, is to reiterate the need for specialised educational services for children, beyond the typical rehabilitation services, as well as to ensure there is sufficient services for those with CVI, and planning to include early intervention as well.

I will not fight a separate battle, that is too troublesome, tiring, and it means starting from scratch. If the group is going ahead with their plans for general low vision care, I will hitch on the side for specialised services for children. I have and will not waver from my original intent.

Braille in 2 months!

Sophie did it! She learned Grade 2 English Braille in just 2 months! I did it in 8.

Of course, there was that ‘motivator’ involved – a rather expensive one. She wanted an iPhone, and I wanted her to learn her Braille. We struck a ‘deal’ in late October. The deal was: She finishes all 12 books of “I Do Like It” braille and learn all the Grade 2 Braille codes, and she can get an iPhone.

I must admit I was a little doubtful initially, and thought I need not part with my dear $$$. Was I surprised! She was all out to get that iPhone. Even practised reading in the night, before she goes to sleep. She wakes up early (good heavens, it’s the holidays girl!) and we have Braille EVERYDAY for 2 months!!!

I was a little tired after 5 weeks, but seeing her enthusiasm, I couldn’t disappoint her. We persevered. I really admire her perseverance at it, and wished it could be translated to her school work too. Well, we must not ask for the moon and the sun, when we just got the mountains!

So, will she continue reading and writing Braille now that it is all over? I wouldn’t count on it. But I know that when the time comes, she’d be prepared!

That is an achievement for 2010, and we managed to do it before the year ends. Now, let’s aim for the O&M…

Another O&M Achievement

Sophie achieved another feat today!

Having tasted the joys of taking public transport on her own to school, her next target: to come home on her own by bus. This is a little trickier than going to school on her own.

To get to school, Sophie only needed to get on the right bus (which I will be there to tell her), ride all the way to the interchange (everyone gets off, and so does she), catch a feeder bus to school (just follow girls in the same school uniform to the bus stop), and get off at the right stop (the very first stop). How difficult is that?

Coming home, Sophie needs to know where to catch her bus at the interchange, and when to get off the bus (the right stop nearest our home). To prepare her, we have taken bus rides home a couple of times. While on the bus, I will describe to her all the important landmarks she is passing, and explain how the bus route is the reverse of the route to school. On nearing home, she needs to know roughly where she is, and I taught her to feel the turns of the bus to know her orientation as well.

Today, was the “test”. It is a saturday morning, so there won’t be too many people. She doesn’t have a full bag to carry to and from school, so it won’t be too tiring for her. She’s on her own.

She called me as she was leaving school, so that I could gauge when she should be arriving home (in case…). Before I knew it, the door bell rang, and Sophie’s home!

She made it! She made it! She made it!

I am so proud of her.

What to say?

This exchange took place between a mother and her 5 year-old son one morning.The boy was recently diagnosed with a visual impairment.

 

Mum: Hey, remember you have an eye appointment next week.

Boy: Yay, eye appointment. I like Dr L (his ophthalmologist)

Mum: You do? (turning to look at him) Why?

Boy: Because my eyes are not fixed yet.

Mum: What do you mean your eyes are “not fixed yet”?

Boy: It’s still so blurry.

Mum: And you want Dr L to “fix” it for you?

Boy: Yah (matter-of-factly)

Mum: (heaved a sigh) You know dear, your eyes can’t really be fixed.

Boy: Why not?

Mum: Well… because your eyes are very special… they are different. They will always be blurry.

Boy: Can’t the doctor operate?

Mum: I’m afraid not now…

Boy: When I am an adult?

Mum: Maybe… hopefully…

Boy: Then why are we going to see Dr L?

Mum: Well… to make sure there is nothing else wrong with your eyes.

Boy: (silent)

Mum: You okay? Are you upset?

Boy: Nope.

(silence)

Boy: (sitting up on the bed) C’mon let’s go have breakfast. I’m hungry!

Denial… or Not

After my earlier entry on ‘Denial’, I chanced upon an article re-looking at this topic. It proposed another way of looking at parental reactions, which if re-considered differently, isn’t denial at all, but a belief in the best for their child. It is about not surrendering all hope, and having high expectations.

Looking at it this way, I can certainly identify with it. When people tell me Sophie will not be able to cope in a mainstream school because of her disability, I did not accept that. In fact, I fought hard to put her in a mainstream school. She is still in the mainstream school system after 6 years. And she will remain. Perhaps I was regarded as being in denial when I refused to accept the notion that my daughter is destined to be in a special school.

Then again, when music teachers who refused to teach Sophie claims she can never play the violin because of her disability, I did not abandon my search for someone who will teach her. She’s scored distinctions in her practical exams!

When her school teachers expressed doubts about Sophie roller-blading and canoeing, I did not budge, and insisted that she be allowed to participate.

Was I viewed as being in denial when I refused to accept the advice of these ‘professionals’? Perhaps, but I believe as a mother, I knew better. Let me share another story of another family.

SK is an eleven year old boy with visual impairment and ASD in a special school. He is non-verbal, not very communicative, and does not have any social interaction skills. The mother was told her son is unable to learn Braille because he is unable to communicate and does not know how to follow instruction. Nevertheless, the mother is still keen to have her son exposed to braille and requested that I make Braille labels of the alphabet on one of his toy with the letters of the alphabet. I obliged.

I don’t think I can teach SK braille the way I would teach other children with visual impairments; but there is no reason why I should deny SK every opportunity to know braille. In any case, I believe that even if SK will never get to learn literary braille for academic pursuits, he can still learn some functional braille for independent living later on.

Teachers in the special school feel the mother is unrealistic and probably ‘in denial’ in persisting in getting her son to learn braille. I don’t think so.

I guess as teachers and professionals, we should step back and assess our prejudices and impose our ‘professional opinion’ on parents. Not all refusal to accept suggestions should be viewed as a ‘denial’, and professionals should perhaps be open enough to re-consider the parents’ wishes.

Looking back, had I merely accepted these ‘professional opinion’ about my child’s abilities and dis-abilities, Sophie would be living a very different life now. One that is a lot more cloistered, with little variety, and perhaps not terribly exciting either. Imagine, she would not be able to play the violin, learn to roller-blade, have friends in mainstream schools, go on play dates, and probably a million other things we now take for granted! 

 

Denial

This topic of parental denial was brought up by one of the teachers at the sharing session with teachers at NIE on Monday. How to help parents when they are in denial?

That’s a tough question that I sometimes encounter with parents I work with, and I do not have any answers here. What I would like to share however, is my own personal journey through denial to acceptance. There’s no right or wrong way to accept the fact that your child has a disability. While some parents may share similar experiences, our journeys are unique and individual. It may not even be typical. So if you are doing any psychology research on this topic, do not take my personal experience as typical or the norm.

When we first suspected Sophie had some visual problems, it probably occurred to me that a visual impairment might be possible. However, I was quick to brush it aside and refuse to think about it. Even when after more tests pointed to the inevitable, I hung on to the hope that it would be something else not discovered yet!

I had bizarre explanations for her poor vision. And every time the thought of a possible visual impairment flashed across my mind, I banished the thought with extreme guilt and sunk into depression. I was in deep denial. I was hoping that by not acknowledging it and not confronting it, it will go away. Well, it did not.

So why did I do that? I knew at the back of my mind that there was no running away from it. Still, I chose not to ‘see’ it. How could I possibly have ‘wished it away’?

Looking at it now, retrospectively, I think I understand my feelings, my thoughts and my state of emotions then. It was a very difficult period I was going through. And visual impairment being a very low incidence disability, I had no one to talk to, and no one who could share my experience. I was afraid.

Sure, there are always well-meaning relatives and friends who have stood by us all these years; but it is not the same. They do not fully understand what I or my family are going through. They can offer some comfort, and perhaps a listening ear. But there is always that distance and gap between our understanding, perception and experience. It is not the same.

My fear was not irrational. I do not know what to do. As a mother, I am supposed to give my best to my child, but I can’t because I do not know what her needs are, and what to do! And there was no one I could turn to for advice and help. I was alone, and very very scared. And at the same time, I felt I could not openly express my feelings. Nobody would understand. And besides, I did not want my daughter to feel the way I do. I want her to be positive, and to continue to love and enjoy life. I was basically living two separate lives, and that was tearing me apart.

What do I feel could be of help to me then? Someone whom I could talk to, someone who actually shares my experience, and who would then probably have an idea of what I was going through. And also, someone who can point me in the right direction, as to how to help my child. I really wished I had that kind of support then.

It is from my own personal experience of helplessness and hopelessness that I want to address these two issues. I have help start a parents’ support group for parents of children with visual impairments. Then, as a trained qualified teacher of students with visual impairments, I hope to help parents understand their role in their child’s life. I want to be able to guide them, and to show them what can be done to address their children’s needs.

I don’t think I can do away with denial by parents; but I hope to shorten the process of grieving and denial. I want to help parents and their children get back up on their feet again. I want to be able to share their joys and sorrows of raising a child with visual impairment. But most of all, I want to give them hope!

What’s the Big Deal?

Someone wrote to me, saying that I worry too much. Yes, I admit I am a worry-wort. But then, I ask myself, can I not worry?

It is all about having qualified teachers for students with visual impairments (again). I have invested a lot of time, effort and money to get myself trained, so that I can give Sophie the best. Something comparable to what her peers in countries like the US, UK, Australia, New Zealand, etc. would be receiving.

As mentioned before, many tell us we are lucky. I am able to provide for Sophie, and she is getting the best. So WHY am I still so worried?

Since Sophie’s diagnosis, I was concerned about the lack of proper qualified educational services for students with visual impairments in Singapore. I enquired about training such teachers, or at least the intent to train such teachers. It is because after some years of waiting, nothing was done, that I decided that I had to do it myself. I can’t wait, Sophie can’t wait.

Having finally completed the entire programme, I am still pushing for teacher-training in this area. I am not talking about training teacher aids or para-professionals in this area (like SNOs and AED(LBS)) like what the MOE has been doing. I am talking about specialist teachers for children with visual impairments. I am still arguing for this need, despite being trained in this area myself.

People think I am mad, say I am mad, and tell me I am mad. ‘What’s the big deal? You can help Sophie, and help our kids as well. At least there’s one of you around!’

That’s precisely the point! There is ONE of me around. Only ONE! I can’t guarantee I won’t suddenly drop dead in the next hour, or the next day, or the next year (you get the idea). Then what? We go back to nothing? I didn’t work so hard to have nothing.

When I am gone, and if Sophie is still in school, who is going to address her needs? As it is, we get a whole lot of bumbling baffoons making bizarre decisions for students with visual impairments here! And Sophie will be at their mercy!

So there you are! Once again my selfish reasons for doing things. I am never satisfied. But deep down inside, this is a very real fear. No one shares my nightmare of such an eventuality. Everyone thinks everything is alright. No one sees the horrific implications of bad decisions by well-meaning people around.

I am worried, very worried.