FROM the time I gave birth to my son with special needs, I’ve been told to never be ashamed of bringing him out in public. He can’t help being the way he is; he didn’t ask to be born that way.
Indeed I’ve never been ashamed of him. On the contrary. He has enriched our lives. He brought out the tiger mum in me and together, we have fought the odds.
But before we became a strong pair, we had to wade through all sorts of challenges before finding the roads that suited us.
However, as a young and inexperienced first-time mother at that time more than two decades ago, I listened to everyone and did nearly everything I was told.
I wanted the best for my son and I was determined to do anything and everything for him. There was a lot of good advice given but now in hindsight, I realise that not everything was realistic, practical or suited our needs. It was a journey we had to take and learn from.
In the early days, I brought my son Omar to almost every birthday party he was invited to. We went everywhere like any other normal young family would, including holidays abroad.
We struggled like many families did — baby bags with food, drink and diapers, strollers, extra clothes, the works. We also struggled with Omar’s medications and seizures (when he was a baby until he was 2 years old), and then later with his physical disabilities.
What I learnt through the years was that for many illnesses, there are certain triggers that could cause a person to have a reaction, some more intense than others.
For example, some episodes of asthma, epilepsy, migraine and even indigestion can be triggered by situations and/or elements surrounding that person. Not everyone reacts to the same triggers in the same way but there are some general things that we learnt to avoid through experience.
LEARNING ALL THE TIME
For Omar, we learnt that he doesn’t do well with loud noises, food that’s highly processed and sugary, and places with flashing/strobing lights, which include television and certain rooms with skylight and fan.
This means that cinemas are a no-go for him. So too are malls, especially during festive seasons when the DJs like to blare out music at insane levels.
Omar doesn’t just have epilepsy. He suffers from multiple syndromes that also include autism and cerebral palsy. So with his physical and mental challenges, coping with external stimuli can be difficult for him — and us.
There have been occasions when we’ve taken him to the mall for casual outings. He loved the music in the background and the general festive feel of everything. He also loved the different smells wafting from bakeries and perfume shops as he angled his head this way and that, inhaling deeply and chirping happy sounds.
However, when the music got too loud, Omar would instantly turn into a different person. He’d scream and cover his ears; he’d struggle and slide off his wheelchair, writhing on the ground as though in pain.
All this would happen so fast but would be dramatic enough to draw a crowd, some offering to help. But the more hands there were to carry and help him back into his wheelchair, the more he’d struggle and lose his temper. He didn’t want to be handled and people didn’t want to see him rolling on the floor.
He’d get frantic and others got stressed. It was much easier to physically manage him when he was younger. But as a big, strapping adult, you’d need a few people to help, provided they know how.
OUR PLEASURE, THEIR PAIN
The same is true when we travel, especially in airplanes. When he gets to the point where he can’t be reasoned with, the plane ride can be a nightmare. Not just for him but also for all of us, including other passengers. It would not be fair to everyone concerned. Add other factors like pooping or vomiting; it’s a classic case of “everyone can cry”.
Through the years of trials and errors, we’ve found Omar to be a creature of habit — happiest when he can keep to his routines and see familiar faces in familiar places. It doesn’t really make a difference to him if he travels to discover new places for holidays.
As for shopping malls and certain functions, we can’t tell the DJ to turn down the music so that it’s not at an ear-shattering level. They get offended when they can’t play their music at rock concert volumes.
So we can’t really use our own yardstick to measure what’s enjoyable for our special child. Our pleasure can be their pain.
I remember relating all these incidents to my late father once and he replied: “It’s not always kindness to bring your child out in public. Who are you trying to please?”
Putri Juneita Johari volunteers for the Special Children Society of Ampang. You can reach her at juneitajohari@yahoo.com