Scrolling through Facebook pictures a friend had uploaded, there was one with her latest vintage find, another on a rare date night and then one that stopped me dead in my tracks.
Familiar hot tears blurred my eyes and I slammed the laptop shut. It was a shot of my friend’s little boy, aged a year younger than my son Rory, beaming as he mastered his older sister’s scooter. You won’t understand why the image provoked such a visceral reaction – unless, like me, you’re the parent of a child with what is referred to as ‘additional needs’ or, in Rory’s case, autism. Of course I’d heard of Autistic Spectrum Disorder before my husband Geoff and I were told our gorgeous little boy has the lifelong condition, but I had no idea really of what it was or what a diagnosis meant.
Now, some 18 months down the track, I know the sensory issues that are part and parcel of ASD mean that Rory can find looking into a camera lens or making eye contact with another person excruciatingly difficult. That his diet is restricted, meaning that on some days the only way to get any fruit or veg inside him is to resort to baby food pouches he was eating as a four-month-old. That when he feels threatened in a crowded space with too much noise he will let out a high-pitched scream and root himself to the spot as we try to coax him to somewhere he feels safer.
And I’ve also realised just how much I’ve changed as a parent. Rory is now coming up to four, but he was just two when he was diagnosed and that moment will forever be burned on my brain. Deep down I’d suspected, even anticipated, this moment for months, but it still felt like I’d been punched in the gut. From that day on, everything I thought I knew as a mum changed – and the hopes and dreams I’d once held for our beautiful boy’s future were now things I simply didn’t know if he’d ever be able to achieve. Would he make friends at school? Would he one day fall in love? Would he be able to travel the world or even live alone? Some people say you grieve for the child you thought you were going to have when they’re diagnosed with autism, and while I understand the sentiment, it’s never sat easily with me. I wouldn’t change a single thing about Rory, not one solitary blond hair on his head, because while his autism is inextricably linked with who he is, I firmly believe that it doesn’t have to define him.
There’s a saying that goes: ‘If you’ve met one person with autism, you’ve met one person with autism’, and that’s certainly true of Rory. In some ways he’s not what many people would consider to be autistic. He’s quite social (when he wants to be), very tactile and seeks out more cuddles and kisses than his elder sister Immy did at his age, but he can be very challenging and that in turn challenges me as a parent. On the days he clings to me on the school run, because he can’t cope with the noise and proximity of too many people and cars, I sometimes find it exhausting. When he freaks out and I see the disapproving glances of people who see only a ‘badly behaved child’, it makes me want to scream. And, try as I might not to, in moments when I compare him to other children and realise all the opportunities he will miss out on, it actually physically hurts.
It also means that social media has become as much of a curse as a blessing to me, because while I’m now a member of some amazing online support groups, just seeing pictures of other children can reduce me to floods of tears. And then of course there’s the guilt. At wishing sometimes that things could be different, at not being able to stop worrying about the future, at the bonesapping exhaustion that precedes yet another phone call to a health worker or the local council. Rory’s ASD has also added immeasurable amounts of stress to mine and Geoff ’s relationship, and means that we aren’t always able to give Immy as much time as we’d like – but it’s also enriched our family in so many ways. Rory still only has a couple of dozen words and some days struggles to tell me what snack he’d like – but when he masters the use of a new word we all celebrate. We almost expect Rory to be the odd one out, but this year he was invited to a handful of birthday parties and that felt amazing. His relationship with his sister is truly beautiful and utterly accepting and makes us realise how remarkable both our kids are. And because his diagnosis came early, he’s had the opportunity to attend an amazing specialist pre-school and is coming on in leaps and bounds.
Yes, Rory’s condition has changed how our future looks as a family, but even if he never fully masters language or leaves school without any formal qualifications, who gets to say what’s ‘normal’ or what a fulfilled life should consist of? Our unique, eccentric, happy little boy teaches us every single day that there’s nothing worse in life than being boring and for that I’ll forever be grateful
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