The day my life changed

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In amongst the day to days of life as usual, we all have the odd date that gets hardwired into our memory banks. The days when something out of the ordinary happened, a bolt that breaks up the trudge of routine and stands-up screaming “you’ll never forget me!”. Life changing, hopefully life making, sometimes life breaking - the days that come to define us.

Mine is April 4, 2006. A little over nine years ago, but as fresh as yesterday. I will never forget it. The day I took Jaq, my beautiful two year old boy, to the doctor.

Jaq had always been a ‘challenging’ baby. Not in the way that all babies thunder in to shake up your life. He was certainly that - but more too. Something I couldn’t put my finger on at the time; just something that didn’t feel quite right. He would sometimes be totally engrossed in an activity, then seem suddenly detached as if there was nothing but empty space around him. Sometimes he would scream uncontrollably for hours on end, but shudder away from any attempts to comfort him. Other times, he would cling to me as if fearing he would fall off the edge of a cliff if he let go.

April 4 2006 was the day I learned Jaq has autism. I had found myself in the office of a developmental and behavioral doctor. A few weeks earlier, at Jaq’s two year check up, the pediatrician had explained that Jaq didn’t seem to be meeting the milestones like a typical child, and we should look into why that might be.

I remember feeling totally overwhelmed by the news. I had almost no understanding of autism; wasn’t that something very serious? And no idea why Jaq had it, or what to do to deal with it. And I felt guilty. Had I done something wrong? Had I not protected him from something? Was this all my fault?

In today’s world of hyper information at your fingers, it seems odd to recall that when I went looking for answers, they were hard to find. Today there’s a huge autism ‘family’ that stretches right around the world - parents, carers, teachers, doctors, psychologists…. and autistic people, all pulling together to better understand autism. In the last decade we’ve learned so much about autism. People are properly diagnosed, and early. We might be shocked by the numbers - it’s estimated that 1-2 people in every 1,000 worldwide have some sort of autism; but it’s a sign of progress that we know this. And we’re learning all the time what therapies work, and how to modify teaching and learning practices to suit individual needs.

But back on April 4 2006, I knew none of this. Slowly I learned. I learned about the science of it all - how autism isn’t one thing, but a spectrum with a myriad of moving parts. How everyone’s autism is unique to them - in the same way we’re all made up of shades of intelligence, ambition, shyness, humour, so too is it impossible to bucket autism into a neat single lump. I learned what worked for Jaq -  the vacuum cleaner running next to his bouncy seat; or his big brother doing a funny ‘Sponge Bob’ dance. I have no idea why those things worked, but they did.

And I’ve also learned that, despite the conversations around autism being largely rooted in medical terms, we shouldn’t see it as condition to be cured. Sure, there are things that people with autism can do to improve their lives - but isn’t that the same for everyone? Don’t we all want to be a bit more determined, a bit cleverer, more confident, better to cope with what life throws at us? Aren’t we all striving to be better versions of us; and happier!

As Jaq’s grown older, we’ve used clinical assessments to inform the best therapeutic and educational interventions. These have been absolutely crucial for Jaq. Like any education of a child done well, it’s given him the start in life he needs. Jaq’s ten years old now. He’s in a mainstream school, and is considered ‘high-functioning’. That’s the official take. I consider him as my gorgeous little man - always trying his best, sometimes getting it right, sometimes getting it wrong, but always making progress.

If Jaq had been born years earlier, odds are he wouldn’t be any of those things. Education may have brushed him to one side, classing him as unable, lazy, troublesome. And that is the power of education. That when it makes progress, so do people.

April 4 2006 - a life making day.

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Get in touch with Gwen on twitter - @HRGwen

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