BEING just as joyful but it can also be especially hard when you’re entering unchartered grounds with not many references to go by.
The tricky part to all this is to explain to your other children why your special needs child requires more attention. As parents, we try to love them all equally, but the reality is that nothing is created equal.
What matters is the realisation that equality comes from the fact that you’re aware of this and that you do your best so that all your children feel loved and don’t feel neglected or left out.
My first-born, Omar, is physically and mentally-challenged. His problem was detected just two days after he was born. Despite surgery, medications and all sorts of treatments, he would be dependent for even the most basic care for the rest of his life. He certainly could’ve been worse and we’re grateful that he’s not.
Before the other children were born, we could totally focus on him because he was our only child then. We didn’t have to explain or update too many people. But when Omar’s younger brothers and sister came along, we had to explain to them his condition and why he was the way he was. Omar had no speech, walked with a limp and couldn’t do much for himself.
It was initially somewhat easier with my second-born because they were closer in age and even went to the same nursery school until I found one that catered for toddlers with special needs.
As the younger siblings got older and could ask more questions, I was put on my toes when they demanded quick, logical answers. They weren’t just curious; they wanted to understand the situation. The first thing I realised was that you should explain to them in the best and simplest manner so they can process the information.
OMAR'S STORY
Call the situation by its name and don’t resort to baby-talk for it. Observe their reaction to the words you use. Do they frown or do their expressions go blank because they’ve not understood a word of it? I realise that certain explanations and words should be age-appropriate. You’d be surprised at the capacity of young minds to understand most of it.
I told my children all they needed to know about their eldest brother. I call it the Omar story — from the time I was pregnant with him, to the time he was born and what we’d done to help him. I also told them that Omar was diagnosed with a severe form of epilepsy called West Syndrome plus other complications like cerebral palsy and autism.
Of course they asked questions; some I didn’t have answers for at that moment. I’ve been stumped on numerous occasions by such questions and would say, “I haven’t thought of that” or “I never saw it that way”.
When I did have some answers for those questions some days or weeks later, I’d approach them with: “Remember you asked me the other day about…” We’d always be frank with each other. I’ve always made it a point to have some one-on-one time with each of my children and we’d talk about anything. We’d go out together — for walks, shopping or meals.
I’d even take them to the centre where Omar goes to — the place where he learns by following the programme designed for him. It’s also where he has friends and is cared for by many. There’s nothing better than for his siblings to see him in action. It brings to mind that saying, “a picture paints a thousand words”.
BETTER UNDERSTANDING
Seeing Omar in his environment allowed them to understand more. The things I’d been telling them all these years suddenly started falling into place as they gained a better understanding.
While I share Omar’s life with them, Omar can’t always join them for their events. They understand that and don’t begrudge him. They know they should still fulfill their destinies and pursue their dreams. If they wanted to help their big brother, this responsibility would have to be their choice.
It wasn’t always so simple or wonderful. Sibling rivalry exists, no matter the condition of your child or the family dynamics. They fight and even say the most horrible things to each other out of anger and frustration. When everything cools down, they hug and apologise (must teach them that!). They actually do love each other.
However, whenever there were issues that couldn’t be ironed out at home, we sought mediation from family and friends, failing which we’d seek out professional counselors.
What have the years revealed? After more than two decades, I see that the bond between siblings can grow stronger as they get older because they feel loved, understood and secure in the family.
Putri Juneita Johari volunteers for the Special Children Society of Ampang (SCSOA).
She can be reached at juneitajohari@yahoo.com.