winning too

It is so damp and grey that I light the candles before we eat. The steady drip, drip, drip of the rain is the soundtrack to the evening. We light the fire and set up a board game in the sitting room. The boys choose Trivial Pursuit. It's the family edition which makes it easier for their diverse age ranges and Mide and I play as a team. It sounds relatively simple to play a game together but for us it's not. Autism makes it hard to understand turn taking, it makes the unpredictability of the role of the dice agony, it makes not knowing the answer to a question tricky to acknowledge and guessing the answer just plain awful. However having said all that Mide managed well and actually enjoyed it! So much work, patience, understanding has gone in to getting him to this place ~ the first time he has played a family game with us all the way through to the end without having a tantrum or leaving the room in anger. Also, he happened to win. And slowly I feel that we are winning too.

funny ha, ha

The other evening Mide remembered a book that his teacher was reading to the class in school. Luckily we had it at home (Mr. Stink by David Walliams) so he spent an enjoyable hour before bed reading out all the funny bits he liked from it. Having a sense of humour is something so intrinsically human that we barely think about it. People with autism are sometimes regarded as having no sense of humour or as not being able to understand or tell jokes. In Mide's case this is not true - he enjoys jokes, word-play and puns and he definitely gets the humour in books like Mr. Stink and cartoon strips like Calvin and Hobbes. Indeed, it also helps us as parents to have a sense of humour when dealing with situations that might otherwise make us furious or cry (or both). On more than one occasion we've used silliness and joking to diffuse tension or reduce his anxiety. Of course, that said, it doesn't always work...

Calvin and Hobbes

reading

Not for the first time I have wintered well due to books. We have far more than we read, to be honest. But it's such a comfort to have a bookcase full with ones that are dear friends and others that are not yet known to me. I have just finished Thin Paths by Julia Blackburn. It's a lyrical meandering tale of life in the mountains of Northern Italy, part reflection on life, part nature writing, part travel writing. The tales of village life are captured beautifully and simply, although what is being recounted (hardship, poverty and atrocities of the second world war) is not easy reading. I'd first come across Julia Blackburn on Radio 4 reading Murmurations of Love, Grief and Starlings, her poem of loss written after the death of her husband, Herman. Thin Paths makes her life with him come alive and shows that our paths intersect and weave alongside others' paths, creating beauty even in the simplest of lives lived. 

I am always trying to understand our son's autism. I want to understand his brain, how he thinks, how he processes information. Of course I can't do this anymore than I can with my other boys, or my husband, but there is always that hope that somehow by reading all that I can about autism I will get in there. I read a lot, ranging from the serious, academic stuff to the practical advice giving blogs. In the beginning after receiving the diagnosis that changed our lives forever I did an enormous amount of reading as though words, explanations and theories would somehow soothe and calm me. In fact it did the opposite. I quickly became overwhelmed by all the information when all I wanted was to fix things. There is no 'fixing' this but there is understanding and now I choose much more carefully what I read. Oliver Sacks' book An Anthropologist on Mars is a series of essays about people with different neurological conditions (including autism) and opens a door into that wonderful thing - the brain - and the complicated beauty of life.

Which brings me to Gratitude. Not 50 pages long here are four short essays written by Sacks as  he faced illness, old age and death. Sometimes I find comfort when I'm not looking for it. And here it is, on the last page... "And now, weak, short of breath, my once firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual but on what is meant by living a good and worthwhile life - achieving a sense of peace within oneself."

light, dark

Rooftops caught in evening light. Last week we ate out at our favourite local restaurant after a difficult day (autism is a tough task master). And, just for a few minutes, the sun gilds the chimney pots and weather vane of the town and from our vantage point we get to enjoy it.

Sunrise. I am out walking early. This time of the morning brings me peace. Just the dogs and birds for company. I love the contrast between light and shadow. Bright, dark. Good days, not-so-good days. All parts of the same story.

Parenting is a tough gig. The difficult times are there when you wake and when you go to sleep. Likewise the good times, it has to be said, but they are the easy days. It's the hard days that make you wonder at yourself and I wish, wish, WISH I hadn't lost the instruction booklet that tells you how to do it properly.