What are we doing wrong? It’s a common cry from parents like us about our screaming children. Particularly around the time of diagnosis. A blurry, murky time that seems a world away from where we as a family are now. When computing and comprehending the facts is what I needed to do; but in actual fact I was doing anything but. Getting Isaac to do the simplest of tasks was too taxing for us and too demanding for him. Questioning our parenting skills was the obvious, but ultimately futile, place to look for an answer.
Compounding our parenting crisis at this harrowing junction in our lives were people’s misconceptions that Isaac was misbehaving. Isaac may have been at a hot house of a nursery, but they struggled when he was in a boiling rage. One of these rages was often triggered by something as small as whether he would be starting the day upstairs or in the garden (you’d be told on arrival every day). And so it was on this particular day in early 2011, in the narrow corridors of a neat townhouse, with the steady stream of over achieving three year olds orderly walking in, Isaac collapsed, back arched, yelling, with arms flailing, desperate to let me know he didn’t want to go upstairs. Which was where his class was starting that day.
My hold of him rapidly turned into restraint, especially as he was adding hitting and scratching to his repertoire. Meaning other parents disapproving glances were now not just towards Isaac, and implicitly me, but now explicitly me as well; I can’t control my child, and when I do, I do it forcefully. On this fairly horrific occasion, when Isaac’s tear-fuelled plea to explain his despair didn’t work, he forcefully threw himself at me like a wild wrestler, in the cross fire knocking over a little girl. The stare a mother gave me that day will stay with me forever; a look of confused shock that a little boy could be so repulsive and his father so wretched.
When I eventually managed to calm him and deposit his disorientated little self with his teacher, he commenced laps of the classroom chanting train sounds and seeking stimulation for his eyes. Marginalised from the other children sitting well behaved on the floor. Marooned in his own world of repetitive behaviour; his only way of coping and de-stressing from the hell he’d clearly been through.
I walked out of the nursery. Before, completely out of character, breaking down.
It was days after diagnosis. When, as I’ve said, we were still hesitant of the label, trying to come to terms with our new life, learning a little, scrabbling round in the dark a lot. Yet the nursery (who had no experience of autism) were looking to us to lead the way. As I wiped away my tears, I was jolted into action. I had to confront the tutting parents and reticent nursery staff: Isaac has autism, these transitions, this behaviour, he struggles with it, please understand. Starting with a determined effort to solve this morning problem. How can such a trivial thing like whether he’s upstairs or outside cause so much uproar. Neither I nor Isaac knew which way to turn. But we both needed to find out.
Serendipitously we had a parents’ session with nurses who specialise with autism that very day. The first of many with extraordinary professionals who would educate and cajole, strengthening our resolve. Little step by little step. Having wept and then wondered, I was in a heightened state. Searching for sympathy, empathy and answers. I actually got all those, it feeling like a momentous first foray into living with autism. And what illustrates this best, is that I was given a simple, quick solution to the problem that had made me so upset. When the nurse told me it, I wanted to hug him and not let go. He’d found what I’d been blindly seeking for. It was an answer that was like the ABC of autism. A brilliant preface to our own new story that was just beginning.
Isaac needed to know whether he went upstairs in the morning, or in the garden. It was that simple. If we didn’t plan his day for him, he would. And it wasn’t just speech difficulties that meant this structuring, this absolute desire to stave of change would be internalised. Isaac’s default is to forever lay down his own temporal foundations. Piece together his roadmap. His routine. So every morning, Isaac would be formulating his day. With every little episode being set in cognitive stone the minute he conceived it. It perfectly explained why whether he would be going upstairs or in the garden felt like a game of roulette for me – it genuinely was.
Nearly two years down the line, preparation is his and our lifeblood. The pulse that keeps our lives beating to some sort of rhythm. His progress with speech helps, but without consistent commentary from him (about what the day entails) and confirmation from us, things become hopeless.
The nurse’s conclusion was a seminal moment for me. A moment when I understood that sometimes the world has to adapt for autism. The Nursery needed to make allowances and let Isaac always do one or the other. So there was no ambiguity; he’d know where he’d be starting the day. Emboldened, I spoke to the nursery who maybe a little anxiously agreed that we’d tell Isaac he could go outside every day. Which he did, and there was never a highly visible, tortuous breakdown in the glare of other parents again. By taking one unknown from Isaac away, we’d erased the unimpressed and uncomfortable looks of parents for this one very public part of the day. We’d not educated the parents really, just not given them a reason to judge. One step as a time, I felt.
It was ever so small, barely a microcosm of one aspect of autism, but by dealing with it effectively, as parents just starting on this life long, daunting journey, we’d absolutely done the right thing.