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.

The final problem

There are two conversations you don't look forward to having with your children. I reckon I'm going to be having one of them with Euan quite soon. It's not because of the subject matter: that's just a fact of growing up that's been inevitable since the day he was born. The discomfort stems from recognising that I'm going to have to set the ball rolling, because there's no way he's going to.

It's not the sex talk. That's still a few years away, thankfully. This concerns that other great Freudian elephant: death. Until a few months ago I wasn't sure Euan would ever get a grasp of the idea. He was too locked away in his world of Lego and teddies to register much of an interest in the fundamental ideas of being. Also, his concept of time seemed limited to what was measurable. For the last 18 months he has had a calendar on the kitchen wall which he changes daily; he looks forward to Christmas, Hallowe'en or his next birthday; but he's never spoken in terms of years or months or even weeks.

A few weeks ago, though, at the breakfast table, he played back what must have been a dialogue from school. 'What does die mean, Euan?' he asked himself. 'Die means you're gone'. He said it quite matter-of-factly, as children often do. At around the same time a few other things had changed. His new-found obsession with Star Wars has brought guns into his life, triggering the phase that most boys go through of running about the house pretending to shoot people. He knows that when you shoot someone with your outstretched fingers, you ‘kill’ them. As a parent I don't have a problem with this, since I reason that you can't hide the nastier side of life for ever, and if children have to learn about guns and death, the fictional realm is a better place for it than the street corner. Finally, we’ve been listening to audiobooks in the car, and among them is Jacqueline Wilson's The Cat Mummy, which deals with the death of a pet and the death of a parent as engagingly and sincerely as anything I’ve found in children's fiction.

Back in that glorious time before I had children, when I still knew how I was going to bring them up, I assumed these issues would resolve themselves in the classic liberal fashion. Your children ask you questions and you answer them, without hiding the truth, but in a way they understood. But it turns out this doesn’t work with Euan, because he’s utterly incurious about the world around him. If he doesn’t understand something he ignores it. If it’s explained to him he accepts it without fear or question. But there's no way of forcing the initiative on him. This can be an advantage: he has little interest, for example, in going off-piste on the internet. But when it comes to the big questions like sex and death, it raises all kinds of dilemmas. Since I can’t wait for him to give me the signal, when do I tell him, and how, and how much? And, crucially, how will he apply this new knowledge? As I navigate between the parental polarities of protecting my children and liberating them through knowledge, autism is like a giant squid clinging to the rudder. I can’t shake it off, but somehow I have to deal with it. And perhaps my biggest fear is that when we do have that precious conversation, it’ll ask more questions of me than him.