Not knowing which way to turn

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.

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10 thoughts on “Not knowing which way to turn”

  1. My boy is now 13 and in a mainstream school – one of his teacher described him recently as the boy with the beautiful mind and he does, even though he can't tie his own shoe laces and routine rules his life, where change is a catastrophe. I remember the day they said your son has a form of autism and I thought I was being sucked into a black void. But nearly 8 years on the shock has receded a bit and the life long quest of helping others to understand about autism in order that they will accept my beautiful son into their normal world continues. Keep writing about autism and thank you for sharing your experience

  2. I remember you sharing that experience at the parents session and it was a bit of a light bulb moment for how I look at autism too. Looking forward to your next post'

  3. I work in a mainstream school and we have quite a few autistic children on our role., including a couple in the sixth form. Ones just gone to uni to study music. They are all very different – with their own set of skills, and quirks. Usually it is a case of taking the time to get to know them and building your relationship slowly. We make allowances sometimes, sometimes we have to do things differently, but then we'd do that for all oh students. Time patience and acceptance are key it seems. Difficult in todays competitive educational world but well worth it on the end.

  4. I remember taken my son to wetherspoons for lunch and boy I wish I hadn't. My son couldn't wait for his food,he was screaming and crying and running off,my husband and I felt like the whole pub was starring at us. I just wanted to run out but food had been ordered. We didn't shout at him which I suspect others thought we should be doing but he didn't understand why his food wasn't there and why his straw was missing from his carton of drink because its always there. It was all too much for him but we held him,soothed him with nice calm talking and when his food came,he changed into an angel until his chicken nuggets were eaten lol then it all started againn but i refused to give a reason to onlookers,I refused to give them a reason not to judge,they shouldn't be on the first place. But I completely understand how it feels. The body heating up etc . I have decided to take him to family pubs etc which have a play areas,something to keep him occupied whilst waiting for his famous chicken nuggets. Lesson learned:)

    Btw your blogs are very helpful and I just hope one day my husband will read blogs etc by other fathers as I do think it would be good for him but he shrugs it off,he's quite quiet about it all but I know we all deal with things in different ways. I just hope he doesn't feel alonem

  5. Sorry for the delay, I've only just seen this. Thanks for sharing about taking your son out to eat; I can totally relate to it, the difficulties, people staring. And I'm glad you've found family friendly pubs to go to. I hope your husband doesn't feel alone too – we do all deal with things in different ways.

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