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.

Sunday, 2 April 2017

Mudstones

Ah yes, I remember the milestones. The joy of sharing the early ones: smiling, chuckling, rolling over, crawling. Then came others that didn't go so well: listening, toilet training, talking. Talking, especially. Other parents would puff up with pride as they repeated their child's first words, followed by their first sentences, and then all the cute things they said as they experimented with language, while ours stubbornly refused to progress. Frustration gave way to anguish, stoked by false reassurances from well-meaning friends and relatives, until finally we heard the words we dreaded at first but ultimately craved: 'your son is autistic'.

When your baby is born childhood stretches ahead of you like a floodlit yellow brick road, lined with solid white milestones: here is talking, here is walking, here is hitting the swing ball in the back garden. In the distance you can make out university, the first pay cheque and the wedding where you get to make a tenderly triumphant speech. All parents find out sooner or later that this straight and narrow path is an illusion. The advantage those of us with autistic children have is that we find out much sooner. The knowledge that we will have to cut our own way through the thicket, in semi-darkness and with the ever-present danger of low-hanging branches, can be daunting and overwhelming. But once your eyes adjust it takes on the character of an adventure. And the deeper you go, the more you come to appreciate the beauty of the trees and the sense of pride, when you look back and see the path you have created. It may not be particularly straight or well paved, but it's indelibly yours, and it exists mainly because you kept hacking away.

I know people who still believe they're on the yellow brick road, even when their children are in their teens. They see David's B minus for an essay as a minor catastrophe, or go into convulsions if Lydia fails the entrance exam for Cambridge and must confront the horror of three years at Keele. I don't envy them. I pity them for being so blinded by the bright lights on the straight road that they live in constant fear that even the smallest deviation will send them over a precipice. When the reality is an uncharted forest that seems intimidating in the beginning, but through exploration becomes challenging, fascinating and rewarding.

In place of the milestones, I've created my own mudstones. Here are some of them: making it through a restaurant meal without anybody staring and tutting; eating vegetables that have been cut in the wrong shape; first phone call (age 12). And a few still in progress: tying shoelaces (age 13); losing the red mark on his forehead that comes from bashing it with his fist in frustration or excitement (I promised three years ago to take him out for cake when he achieves this one); telling me how much they miss their mum.


There was a time when I grew angry and resentful when other parents started up about their children clocking up the milestones (“He's so advanced! He was walking at 11 months.” – as if it could make the crucial difference one day in a job interview). These days I tend to nod and smile, and hope for their sake that the shock, when it comes, isn't too devastating. Most of us leave the straight path sooner or later, and it's often then that we discover the truth about ourselves. The unexamined life, as Socrates supposedly said, isn't worth living. Autism is a life of examinations, in every sense.