This morning I was beginning my day with a happy little moment alone, leaning over the railing at work, gazing out over the suburbs and inhaling the fresh spring air. Up the hill came two figures; one familiar and one not so familiar. It was Jeremy*, who I have worked with several times before. He’s 1o. He likes ice cream, he likes to use a chewy necklace and he also likes to make popcorn and he loves the cool tactile sensation when he runs his hands through loose flour. He loves the Wiggles. He loves to sing. He enjoys learning on iPads and playing with visually stimulating toys. Like many kids who have autism, he finds it hard to adjust to changing routine (like vacation care) and dislikes noisy, crowded environments (like drop-off time at vacation care). Depending on his mood, he can also be oppositional and merely dislike being told to do something, which brings out instant resistance, even though he may not immediately know why he’s saying “no”. Sometimes he just needs more time to process what has been said in order to comply. But one thing I always delight in watching Jeremy do, even when I’m not assigned to him for the day; I love to watch him daydream. He likes to be outside, singing his happy singsong birdcalls and listening to the sunshine.
Jeremy was accompanied by his mother, who I hadn’t met until today. She was patiently guiding (wrestling) him up the footpath to our service, her face a mixture of saintly patience and relief to be so close to some respite. I instantly admired her.
I saw that Jeremy was giving his mum a hard time, so I called out, “Oh hi Jeremy! I’m so glad you’re coming with us today!”
Mum looked up at me, immediately relieved that a worker was attempting to take over the emotional load. Jeremy brightened at the sound of my voice and walked freely up the ramp. Jeremy’s Mum seemed to spend the entire walk up the long ramp trying to get over the fact that someone was expressing excitement at the prospect of spending the day with her son. After a short conversation about his chewy necklace we went inside, where I briefed her on the day’s planned activities.
“….oh. Fishing, you say?”
“Yes. We’re going to spend a lovely day on the wharf. It’ll be good!”
“I’m so sorry to ask this, but is it going to be next to a large expanse of water?”
“Yes, there will. But it’s ok…. we – “
“Oh Jeremy isn’t safe around water. If he sees the water, he just GOES for it. There’s no stopping him. He just goes straight for it.”
“I’m sorry. I’m just really worried. He doesn’t understand.”
“That’s okay. We will work something out. He’ll still have a great day.”
“Sorry. You probably think I’m completely neurotic, now.”
“Not at all. You just sound like a concerned mum.”
“Oh god, you are so gracious.”
“No, no. You go and have a good day. We’ve got him.”
At that point, my own charge began poking someone and annoying them so I had to dash off to deal with that situation. But that conversation has stayed with me ever since. It’s not the first time I’ve had a conversation with a parent of a child on the spectrum who peppers entire conversations with apologies for their child’s behaviours, their higher level of care needs and their differences in interacting with NT children in public spaces. This time, she even apologised for being concerned about a real risk to her child’s safety.
I’m so sad about this; that our society has trained parents of children with differing ability to feel they have to apologise by default. And I’m here telling you, Jeremy’s Mum, you have nothing to be sorry for. I wish my guys had stopped poking each other just another 60 seconds, so I’d had time to take her aside to tell her I that I can see the loving relationship she has with her son, in their squishy kisses goodbye, in her worry for him, even in the case file notes where she outlines the things he likes and how to manage his behaviour and understand his feelings and communications. I can even see the expense she has gone to, paying for Sydney’s very best specialists in autism, hearing loss and acquired brain injury. There’s nothing she and her husband won’t do for their son and she wants the very best for him. That isn’t something to apologise for, but to be proud of. In any parent/child relationship. If anything, she’s a parent that other parents should be inspired by. And if a worker isn’t enthusiastic about caring for Jeremy for the day, then maybe they should rethink their job. Because anything less than excitement and enthusiasm isn’t good enough.
Autism is what it is, and our children are all different in their own weird, wonderful ways. We deal with those differences together, as a society. Never apologise. Until there are standardised communication boards in every Australian park, until there is a quiet zone in every shopping centre for overstimulated distressed children, it’s us who owe you the apology.