Showing posts with label autistic children. Show all posts
Showing posts with label autistic children. Show all posts

Thursday, 5 October 2017

Unspeakable

How can you grieve without language? It was a question we had to deal with even as we prepared to emigrate while Mageld was dying in April 2014.

We learned from the start that there was no point hiding things from the children. On the day she was diagnosed, 18 months earlier, Adam clung to her ferociously as she dropped him off at the school gates. She hadn't told him about the appointment, but he sensed an imbalance in his world. When she lost her hair to chemotherapy, Euan went through a routine of trying on her headscarves and rubbing her head when he came home in the afternoon. And when she learned the cancer was killing her, she sat down with them at the kitchen table and told them she couldn't be there for them in the future. 'But you're here now, mum,' Adam replied evenly.

When Euan started school he was assigned a play counsellor. She laid out games on the floor, gave him paper and crayons and tried to connect with him using the game as a prop. Euan scarcely responded. The language barrier, the strange surroundings and the unfamiliar routine left him emotionally paralysed. After a few weeks she delivered her report in which she said that he had little idea why he was in the Netherlands or where his mother was now. 'I asked him where she was and he said: “In the hospital”.' Yet we had made a point of taking the boys with us on every step of the journey, up to and including her death, and I couldn't recognise the description in the report with the boy who had clung to me at his mother's funeral and cried with anguish as the coffin retreated behind the curtain. Only now do I realise how Euan furled into himself in the months after Magteld died, as impenetrable as an armadillo in its shell.

To the outside world the boys seemed entirely unaffected by their mother's absence. A counsellor said to me: 'As long as they're not showing any signs of distress, don't worry.' If these words were meant to reassure me, they failed. It was inconceivable that they were unaffected by such a rupture in their lives, and the fact that they were unable to display or discuss it left me frustrated, alienated and anxious. The one time I managed to raise the subject at the dinner table Adam replied flatly: 'She died, and we don't want to talk about it any more.' Unable to tolerate my distress, Adam shut it out, sometimes literally: if he caught me sobbing he left the room and closed the door. We were like a dysfunctional version of the three monkeys: see no grief, hear no grief, speak no grief.


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Three years later it remains a largely unspoken trauma, an absence of an absence. My efforts to incorporate anniversaries and memorials into our routine have fallen on stony ground. Pictures of her hang in every room, almost invisible. I feel as if I am carrying the burden of memory alone, though sometimes, if I'm lucky, I can goad them into recalling a favourite film or a place we visited together. At a castle in Sweden two years ago Adam reminded me how we had stayed in a castle with Magteld a few years earlier – a wretchedly cold, wet weekend during our last winter in Scotland that was nevertheless full of warmth and hope. A breakthrough of sorts came when Euan's carer managed to coax a few snippets of memory out of him, in the borrowed language that he uses to communicate: 'Euan is worried about his family. His mother is in the hospital. And that's how he is very very upset about his mother.' It was the first time that he expressed his feelings, even indirectly. But it was not so much a chink of light as the blur of the sun behind the clouds. Without language the grieving process is silent and turgid, like a solo pilgrimage.

Monday, 4 September 2017

Extreme displacement

A little over three years ago our family underwent a violent change in circumstances. Magteld died, at the age of 38, from breast cancer, leaving the three of us who remained bereft and bewildered. To make things even more challenging, we had just emigrated to the Netherlands. Her long-cherished dream of returning, and mine of starting a new life in her country, was twisted out of shape in the last months when she was told her cancer had returned. We had sold our house by then and it was too late to pull back, so we pressed ahead like an Atlantic rower trying to outrun a storm. Magteld lived for just seven more weeks in her native land.

I am going to close this blog shortly. Euan turned 14 earlier this year and is at the point in life where his need for privacy outweighs my need to write about his progress. But before that I want to look at what we've learned about autism in the most exacting of circumstances. We've been tested by grief, by isolation, by the barriers of language and bureaucracy, and we've survived. I sometimes even dare to think we're thriving.

Looking back I sometimes wonder what on earth we were thinking of. It was like attempting to recite the complete works of Shakespeare from memory while trekking to the South Pole on crutches. The boys had to adjust to living in a new place, with new schools where the lessons were given in their other language. The country they called home and the one they visited would swap places and remould their identities. And at the same time a day was coming when they would no longer have a mother and look for guidance and stability from a father who was grappling with his own overpowering grief. We would go from being a cross-cultural family of four to an expat family of three, and so cross not one border, but two.


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How did we set about making sure that the boys were not left displaced and traumatised by this conflation of extreme events? They depended, and still depend, on routine and familiarity to orient themselves. They struggle to communicate, so how would they cope with switching language. And from my point of view the crucial thing was to find a way of recognising when they were in trouble, since both of them find it daunting and difficult to communicate their emotions. The solutions I found, and the lessons I learned in the process, will be the focus of the next few blog posts.

Friday, 19 August 2011

Cause, consequence

Adam comes down for breakfast, smiling and bright as a button. He remembers something in his bedroom and dashes back up the stairs. Half a minute later I find him on the floor, distraught, face red and eyes swollen with tears.

I ask him what’s wrong. He points to a mug half-filled with water on the floor. “I didn’t drink my water.” Every night before he goes to sleep Adam drinks a mug of water in bed. It’s the last phase in a well-established night routine. Last night he must have been too tired to drink it, so it sat on the floor all night and when he woke up he must have knocked it over. Half the water is in the mug and the other half is seeping into the carpet in a neat ring.

“Do you want to drink your water, Adam?”

“Nooo! It needs to fill up!”

I go downstairs, fill the mug to the brim and tell him to come down and drink it.

“No! I can’t!” This is his standard response when he doesn’t know what to do. So I take the mug back up and put it on the radiator. This is no good either. He picks it up and puts it on the floor, on the exact spot beside his bed where it was before.

“Do you want to drink it now, Adam?”

“No,” he says and skips down the stairs to resume breakfast. The mug sits there until he’s left for school.

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A few weeks earlier we’re in the Ikea cafe, having meatballs and chips for lunch. It’s going well until Magteld filches one of the chips from my plate and pops it in her mouth. Euan is incensed. “You have to put the chip back!” he screams. She puts one of her own chips on my plate. But substituting a different chip isn’t what he means. He reaches into her mouth and tries to excavate the one that’s disappeared down her throat. No amount of explaining will convince him it can’t be done. He won’t give up until the plates are cleared and we’ve moved on from the table.

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We all remember those incidents when a favourite toy was damaged beyond repair and we still took it to our parents to fix, but these two incidents magnify that desire to undo mistakes to the point of intransigence. Adam didn’t want the water: he just wanted things to be put right. Euan was enraged by his mum’s refusal to undigest a chip. Do autistic children have more trouble than others understanding that sometimes there’s no going back, that not all loose threads can be re-ravelled?