Most of you who know me, know that my son Connor is autistic. A few years ago after we first received our diagnosis for him, I wrote an essay for university, sharing an insight on what it felt like to raise an autistic child.
Three years later, we have seen so many changes in our little boy, he has grown up into a capable, loving, intelligent little boy. I’d like for you all to read our story so far.
I always knew Connor was special. Right from the moment he was born. His little head raised itself on his tiny neck and stared at me as if we were long lost soldiers fighting on opposite sides of a war. He had recognised himself in me and I in him. From then on, we were connected.
I lived my life for my small son, watching him grow and explore the world around him, watching him come into his own personality, and realise his own strengths. He was courageous, fearless even. He met every milestone early, rushing headlong through his first 18 months as if he couldn’t wait to get to the next stage, to grow up. Then one day without warning, it all just stopped. His achievements fell away as if they were nothing more than a dream I once dreamt. No longer could he stare into my eyes. Any attempt to catch his gaze would end up with me in tears wondering why he no longer looked at me. Every photo was a blur as he pulled away, shying away from that personal contact with me and the world. He lost his words. It sounds like such a silly thing to say but once he had charmed us with his babbling vocabulary, now he was reduced to grunting, pointing and throwing tantrums. The tantrums. He would bash his soft little head against the wall, the floor, the kitchen cupboards, anything, including me. It broke my heart to see my little boy disappearing.
Then began the doctor’s visits. GP’s who said there was nothing wrong with him, he was only 18 months old, he’s a boy, he’s misbehaving. Any excuse to dismiss what I was observing. How can you tell a stranger that your little boy is no longer there? That you watch him fade away one day at a time? That when you looked into his eyes, the emerging person you once knew no longer lived there? It pushed me to breaking point, but also pushed me to become a better mother. Perseverance led to a referral to a paediatrician and so we met Heidi. It was a bad day. Connor was at his worst and I was terrified and trying not to show it, the only clue to the anxiousness I was feeling was my inability to sit still. Pacing the waiting room while watching my husband trying to keep Connor contained was difficult. He was screaming and throwing himself on the floor but I comforted myself with the thought that Heidi needed to see him at his worst to diagnose him.
The interview was pure torture. Heidi asked pages and pages of questions, all designed to show her how bad a mother I was, or so it felt. One exercise saw me calling out Connor’s name to see how long it took him to respond. 22 times actually. I called him 22 times before he finally turned around and acknowledged me, and when he did, it was minutes after the final failed attempt. I knew it was bad but those two hours gave me a look into a world I wasn’t sure I wanted to be a part of. It was traumatic for me but for Connor, it was just a chance to play with new toys, to destroy a new room. Two weeks later we found ourselves back in that waiting room, this time without Connor. The room felt too hot and my hands didn’t want to stay still in my lap.
‘Connor is autistic.’
These words will forever haunt me. My beautiful boy, autistic. He’ll never have a job, he’ll never leave home, he’ll never have friends and he’ll never marry. These are the thoughts rushing through my head but most of all, how can I support him through this? How can I guide him through life when I no longer have the correct manual?
I remember one day I took Connor to the park. It was about two weeks after his diagnosis, I was still getting used to the idea, still in the shock bubble. A young girl, maybe two years of age came waddling over to us, a big grin on her little face. She put out her hand to Connor, expectantly. He looked at her hand, not her face, and just kept staring. He had no idea what to do, no idea what the right response was. Instead, he picked up a handful of crisp autumn leaves and threw them in the air, squealing as they fell to the ground. The girl waddled away. At the time this encounter nearly broke my heart but perspective made me see that my little boy was marvelling at the way the leaves felt in his hand and the way they spun through the wavering autumn light as they floated back to the ground. Autism is seeing the world differently. It means you’re different, not less.
We had tried Connor in daycare before, it didn’t go well. The teachers, while liking him well enough, didn’t know what to do with him. They stuck him in a corner with an ABC book and left him there for hours. I was working full time but they would call me after an hour and say they couldn’t control him, come and get him, he’s disrupting the other kids. I would sneak in like a thief, trying to make Connor leave when all he wanted to do was stay. He couldn’t participate with the other kids and wouldn’t do what everyone else did. He didn’t fit in and it was never as clear as when I overheard a small boy speaking about Connor one morning as we entered the back yard.
‘There’s Connor. We don’t like him ‘cos he kicks over the blocks. Let’s not play with him.’
Another moment that will stay etched in my memory forever. But Connor didn’t hear, or if he did, he didn’t seem to care. He sailed past, intent on banging the wooden spoons on the pots hung on a wire frame in the yard. It was only my heart that broke. After his diagnosis, we enrolled him into an autistic specific school where all the kids were diagnosed with autism. I knew it was the right place for him when I saw all the kids had bare feet and many of them were lining up cars, shoes and hats in long lines. He finally fit in. He was one of the group. I cried. He didn’t. It was magical.
Kids can be cruel, sometimes without meaning to, but adults are worse. Those who should know better often don’t. I’m often met with hostile faces and arrested conversation when I mention my son is autistic. I used to tell people, almost apologetically that he was autistic, usually after he’d pushed another child, or started screaming and couldn’t stop. I eventually stopped organising play dates, the awkwardness that I felt, the judgement from other mothers made it not worth putting myself through that. Eventually, once he started responding to treatment I found the courage to tell people and plough through the silence listing his wonderful achievements. Maybe it was my unabashed pride or the way I wouldn’t accept my child as less than theirs, but people starting responding to us. We received play date invites, other kids wanted to play with my son.
Coming to terms with a disability has been difficult. He gets stared at a lot in the supermarket when he covers his ears and screams as the loud speaker goes off. Or on the road when he must count and jump every white line on the zebra crossing. Or how when he says hello and someone doesn’t say it back, it breaks his heart. Connor is special. He can count to 100, do maths, knows what a 10-sided shape is called and can recite the alphabet backwards. He is an extraordinary person with a wonderful outlook on life. He also struggles with the basics of playing with his friends, of knowing what to do when handed a baby doll and a bottle, or a bucket in a sand pit. But every day, my little boy shows me strength and courage beyond anything I had imagined. He has shown me a new way to view the world, a different way.