What’s so wrong about my son?

I guess most of us today know what the word "disabled" means.

However, understanding it from a parent's point of view, or someone who has the condition, is often a totally different kettle of fish.

Here's an eye-opening email I received recently from a mother of a seven-year-old boy with a disability.

I shall call her "RY" because she wishes to remain anonymous.    

"KT – not his real name – is my 'non-verbal' and 'non-walker' special-needs son whom I love more than anything else in this world," began RY.

"Because I do, I take him out with me all the time, whether to the grocer's for a quick grab of items, or to the mall for lunch or dinner."

She then went on to explain how disability affects her son.

KT wears a special type of shoe called an "ankle foot orthosis", or better known as "AFO". He has to wear it every time he goes out.  

KT sits in a special bigger-than-normal stroller. That's because RY is no longer able to carry his usual customised wheelchair in and out of the car boot because of back problems.

His hands also have to be tied up with a nappy.

This is to deter the young lad from “punching” the cheeks, forehead and lips repeatedly until they bleed or turn blue black.

KT does this because of his sensory problem. He does not understand or realise that he is inflicting injury or pain on himself.

All his fingers need to be stuck together with pore tapes in order to prevent him from hurting himself further.

"Nobody – just nobody – would understand and appreciate the amount of effort and time I have put in to desensitise KT's odd sensory problems by learning the techniques from attending workshops and consulting scores of specialists and therapists," RY said in exasperation.

"I've had people walk up to me to ask me why 'I don't just reason with KT or teach him that it is wrong to box himself in his face. They find it hard to accept that my son simply doesn't understand what he is doing.

"On top of that, he also has a list of medical conditions which include his inability to understand logic. He also needs to be cared for 24/7 by a caregiver."

To make matters worse, RY said she is sometimes confronted by strangers who think she is abusing her son for tying him up.

"Instead of getting angry, I always make it a point to explain KT's special circumstances for those who care enough to listen."

Fortunately, such encounters have failed to deter KT from getting out of his house with mummy. Being out with RY is when he is happiest.

He never fails to start singing, or sometimes even screaming for joy.

"It's actually KT's way of expressing his happiness and trying to communicate with others around him through non-verbal means," RY explained.

While there are those who are supportive of mum and son by offering them a nod or a smile, unfortunately, that doesn't always happen.

There are those who either just don't get it – or simply are adamant about trying to understand persons who are born different and their caregivers.    

Once, while RY and KT were out for lunch, they encountered a middle-aged man seated next to them. He kept staring coldly at KT.

However, our hero who was in a jovial mood, kept smiling and waving at the man and even started to "chat him up".

RY leaned forward towards the man to explain that KT was trying to be friendly with him.

He had a horrific look on the face when he noticed KT's bandaged fingers and bound hands.

Despite RY explaining the whole situation to him, the man continued to stare at KT.

And in spite of KT behaving the same way to some of the other passers-by, the man continued to fix his gaze at KT – as if he was an alien who had just landed from outer space.

Then, just as KT and mum were about to leave, the man suddenly asked, "Is it something you ate, or did wrong during pregnancy that made your son an 'aborigine' and 'shouting and acting like a monkey'?"

RY was dumbfounded. She was also furious at the man's remarks.

But just as he was about to leave, she managed a response.

"Look, my son never asked to be born this way. He is multi-disabled, and a non-verbal and non-walking person who is merely trying his best to communicate in the only way he knows how to.

"He is a very beautiful boy – and it's so sad that you can't see it. If you would allow yourself to see him with an unbiased view, you would realise that too!

"I was stunned beyond words – and very hurt – by what he told me, without even a flinch on his face.

"But then again, I had learnt a very powerful lesson that day. It was a precious insight into what real blindness and human ugliness was all about.

"Rather than to discourage me, it made me more determined about going out more often and being seen with KT.

"People with disabilities like my beautiful son have every right to be seen in public just like others.

"So what if special kids 'sing, shout, cry and dance' in public? They are just being themselves!

"And when you think about it, what's so wrong about that!?" said RY who lives in Petaling Jaya, Selangor. – January 12, 2015.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.