Fri | Sep 25, 2020

Autism: A journey of hope – Part 1

Published:Wednesday | September 2, 2020 | 12:25 AMDanielle R. Neil/Contributor

Imagine you’re watching your favourite TV show and someone, maybe your husband or your kid, unknowingly aware of how tuned in you are to the cliffhanger of the highly scripted reality show or home makeover reveal, takes the remote and changes the channel. Then, imagine that they just keep flipping through channels, never landing on one that ever seems to suit your interest or theirs, for that matter. Inattentive and impulsive behaviour. Well, that’s what attention deficit hyperactive disorder sort of looks like. Believe me, I know.

Once, I heard a mom describe the experience of her child not following her commands or responding to instructions thus – like having her car stuck in the neutral gear and flooring the gas pedal, but the car just wouldn’t go. If you’re a parent of a child with autism, then this would sound all too familiar.

CHALLENGES

Sometimes children with autism or ‘on the spectrum’ experience things on different levels. They may have challenges with social skills, repetitive behaviours and communication. They are all unique. Here’s one way to put it: While precisely trying to steady your hand to pencil in your eyebrows, you never, ever seem to get the two to look the same. That’s autism. Each child has their own strengths and challenges, which is why it is called autism spectrum disorder.

But here’s the fascinating thing about autism; even though we know so much about it, there’s a lot that we still aren’t sure of. Science has taken leaps and bounds to try and help us understand autism more, but we still don’t quite know everything. So much so that we curse it, and yet we can’t seem to get enough of it.

I say that to say, even though it may feel like an uphill climb, we can try to do as much as we can by learning as we start on that journey, because there is something that we do know. I’m guided by what many experts in this knowledge area say resoundingly, that the number one thing is early intervention. Which, simply put, means getting the information you need so you can make an informed decision on how to give your kid the best chance for success. That doesn’t mean that you’re going to get everything right. The most experienced driver will tell you that they have put the car in neutral, expecting a forward or backward movement. In the end, it’s the driver who understands the vehicle, who knows what type of gas it takes, when the breaks start squeaking, when it’s time to change the battery, or when to take it in for servicing.

You see, some cars even come with a warning light – an early indicator of sorts. It tells you that something may possibly need to be checked. As parents, we too realise when we first begin to have concerns about our child’s development. Something triggered you to believe that there needed to be an inspection to determine what the source or issue may be.

Only then can we start to unbox the complicated matrix of what needs to be done. As parents, we are the expert on our children. We know the routines of their lives that we so carefully curated, what triggers they respond to, and the ways to comfort them when they are in distress. It’s all part of the experience; one that comes with beautiful and chaotic moments, but, in the end, it’s a journey filled with enjoyment and pleasure. The best adventures are the ones you take when you know where you’re going and when you have a road map that will help you along the way.

Danielle R. Neil is a project manager at One of A Kind Kids Ja, an integrated programme for children with special needs.