Grieving for a life which might have been

I haven’t written much about L’s family – she is the youngest of three, an older brother and a twin sister. Her brother J, is nearly 18 and he has Aspergers Syndrome. I could have described him a different way, as a tall, handsome young man, who has an extraordinary talent in a particular field, who has a number of interests that he pursues passionately to the exclusion of all else, who can be kind and thoughtful but often lacks the basic empathy to think about others in any meaningful way, whose temper can be truly terrifying and can damage anything and anyone In his path during a rage and yet who still keeps precious soft toys close to home when he sleeps. Our lives have been dominated by this form of autism – his father from whom I separated many years ago shows many similar traits, as does K, L’s twin sister, although a formal assessment showed she should not be diagnosed. At its worst, the behaviour manifested is similar to domestic abuse, terrifying rages, which are blamed on the victim not the perpetrator followed by self loathing and apologies. Those with Aspergers struggle with basic social skills – asking someone the time or being served in a shop, organising yourself and being on time, keeping track of possessions but most of all, understanding the impact of your behaviour on others.

But J is a wonderful person in many ways and we rightly want to treat people equally regardless of any disability. However those with Aspergers will always struggle in a neurotypical world, where conforming is highly prized over individual quirkiness. I remember how my heart sank when J started reception and I advised the teaching staff of coping strategies, how J would be happiest on his own with a book if showing signs of stress. “At school”, stated the Headteacher, “children have to learn to do the same things at the same time as everyone else.”. Of course it didn’t work, J grew fearful of school and was constantly in trouble, essentially for not understanding the rules everyone else seemed to know. “The problem with J”, said his teacher one day, “is that once he has started something, he has to complete it and does not like being moved to something else”. My remarks that I worked with people who had seemingly never learned this useful skill were ignored.

My experience as a parent of a child with a learning disability is that it is like an unending but mild bereavement – while J is healthy and gifted, I know his life will always be more difficult principally because of the world around him. I want my child to lead a happy and fulfilled life and know that it will be difficult if not impossible. He is handsome and funny, but has never had a girlfriend or a significant best friend. Others marvel at his talent, but he really sometimes just wants people to laugh at his jokes. He will probably never hold down a steady job, especially of it involves working with others. He struggles with managing small amounts of money, with household tasks and the rest of the world confuses him on a daily basis. I love him so much, but if I am honest, I long for him to have some normality, to feel less isolated and to feel he has a place in this world. I have no idea if he will be able to live independently in the future and I worry constantly about this. L and I have sometimes joked that she will look after him – she feels much the same as I do and has always tried to look after him, another responsibility she bears. I wonder if this has caused her illness – her inability to control the world around her and the behaviour of her brother may have led her to an eating disorder.

And now I feel the same way about L, a sense of grief for what we have lost. In a home life which could so often be challenging, I have frequently tried to introduce order and to keep us united through food. Routines of big family meals, often with their father invited, to restore some calm and to remind ourselves of who we are as a family. As well as regular family meals, each occasion has been marked in some way by food, Christmas, New Year, birthdays, exam success, always marked by food. New neighbours welcomed by cakes, cold weather combated by casseroles, warm weather celebrated by barbecues, picnics.. And at the centre always, L and I, planning recipes, thinking about what to feed the people invited, how to decorate the house – how to show our family and friends, Look, we love you, we care about you, we made food to show it so we could eat together and share this special time. That has now gone, it seems, every occasion seems dominated by anorexia, the gnawing anxiety of whether L will eat, whether she will make herself sick afterwards. I view her reading recipe books with suspicion and worry. She still makes cakes but never eats them, any planning of food involves careful negotiation about what she might eat and I refuse to allow her to sit eating salad while we eat something different. Today as I prepared dinner for tonight, I felt a real sense of loss for what we once had. No longer looking forward to getting the family together at the end of the weekend, but worrying about L and whether this meal will be an ordeal. I want our old life back, in my head I feel like the spoilt teenager, wanting to stamp my foot and bemoan how unfair it is. It is no longer a meal, a time together, but a collection of calories to be consumed. Or not. On the surface it looks the same, but we all know that it is a completely different world now.

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