Never give up on your special child
IWAS at the hospital for my son Omar’s follow-up check-up recently when someone tapped me on my shoulder and said, “Hello aunty!” I turned around and instantly recognised her as the girl who used to come to our centre for children with special needs.
Anne (not her real name) had always been a cheerful and happy child. When she grew older and became more independent, her parents decided that she no longer needed to go to the centre.
Her “education” was enough and it was time for her to help at home and maybe even get a job to help support the family.
Anne was categorised as a “slow learner” and couldn’t continue in the normal school setting. So she was trained in living skills, and basic reading and writing. She’s someone I’d term as “highly functional” and could do things for herself.
What I didn’t expect was for her to be her mother’s caregiver. I thought she was there at the neurology clinic for her own check-up. It turned out that her mother had suffered a stroke the year before and needed medical treatment.
So Anne brings her mother to the hospital by taxi, leads her limping mum to the respective rooms, collects the medication and goes home. I’ve bumped into them several times in the last few years and always marvelled at how the tables have turned.
ROLE REVERSAL
This isn’t the first time I’ve met children with special needs who have grown up to be their parents’ caregiver.
In the three decades that I’ve been a caregiver and worked with people with special needs, I’ve seen how parents give their all for their child, struggling with their disabilities and never giving up despite the odds.
Nothing was ever too much — the long hours, the incredible journeys and ridiculous locations, as well as the tools and contraptions needed to improve their abilities.
Many parents of children with special needs would be familiar with torch light flash therapy and eye patches to strengthen the weaker eye, pulleys for baby-sized weights to strengthen certain weak muscles, standing frames to train the legs for weight-bearing, audio books to teach songs, words, phrases, numbers and counting, and even treks in the house for creeping and crawling movements to improve patterning for the brain.
We put our child through the rigours. The child sometimes cries with exhaustion, protesting and forever threatening to go on strike. Parents seem heartless and insist that training goes on. We cannot stop. We cannot give up. Okay, so maybe we can take a short break and do something fun — but we get back on track.
Teaching special children new tasks and skills take longer than it would for ordinary children. Some eventually get it, but others take what seems like forever.
Fast forward 20 years of doing this. I met with some friends and they told me that they’re so glad that they were tough in the early years because their child learnt what needed to be learnt and could care for themselves. Not only that, they’re able to help around the house. Some even have jobs and earn a decent amount, which adds to their sense of worth and self-esteem.
The best part of it all, these parents tell me, is that this special child is at home with them. Not leaving the house to lead their own lives isn’t an issue because that’s certainly a better option than having to send them to a facility cared for by strangers.
Additionally, it’s because of this child that some parents don’t really suffer from the empty nest syndrome when their other children leave.
Certainly parents miss having all their children at home with them. Such parting is sweet sorrow; one that clenches the heart as you watch them grow up and take their place as useful citizens of the world.
That process of letting go is difficult, and we as parents would do well to remember that it will happen at some point. That’s why we need to prepare ourselves for it by having a strong circle of friends and doing activities we enjoy after retirement.
Some of my friends tell me when the house is quiet and there’s just the two of them at home, it’s comforting to have this child bring you a drink and remind you to take your medications. He or she may not be able to do the more complicated tasks, but having someone to look out for you is certainly comforting.
Not all special children blossom into independent adults due to their disabilities. Some would forever be in your care and need assistance for everything. But there are those who blossom because you never gave up on them. All those years you’ve put into your special child haven’t gone to waste. You have found kindness returned.