BETWEEN A ROCK AND A HARD PLACE… by Anne Sutcliffe
I’m standing in a stranger’s lounge, apologising for the fact that my 13 year old daughter has just eaten half her favourite houseplant. My kind hostess looks bemused, as well she might, since she’s also just witnessed Jenny drinking the contents of their garden bird bath. And this is the girl who’s breakfasted on three weetabix and an Evian bottle.
Having autism isn’t a problem for Jenny, since her disability is so severe, she doesn’t realise she’s different. It’s just a problem for those around her – us, her family – who have to go into major explaining-and-apologising mode ten times a day, and form some sort of order out of the chaos and mayhem.
Back home again, and the evidence that Jenny came back from boarding school for her Easter holiday yesterday is all around me. The padlocks are back on the bedroom doors again, and the washing machine and tumble dryer are once more whirring away continuously. Weetabix sludge is splayed across the fan heater, the toilet roll is a sodden pap in the bath, and my husband is a stranger again. For the next two weeks, car rides being one of Jenny’s obsessions, either he or I will be almost permanently ferrying her about in the car, going literally nowhere. At Christmas, she destroyed the Christmas tree within 24 hours of being home, and I don’t just mean unravelling the lights and the tinsel, but eating the baubles and the smaller decorations, which meant not just a snow of polystyrene on the carpet, but vomiting in the night. She destroyed my glasses case while my back was turned for a minute, not just pulling out the lining, but ripping apart the metal clasps. And an incident of this sort will be occurring every few minutes when she’s home.
But when I’m able to look beyond the chaos, I can see that having Jenny – just as she is – has strengthened us as a family, even though it’s put us through a lot. Her two brothers and sister have had to live with the constant threat of favourite toys and lovingly made models being torn or chewed to bits, and with the fact that we don’t have the freedom to do things other families take for granted – cinemas, for example, are pretty well a no-go area. But on the other hand, they - like siblings of disabled children in other families - have an independence of mind and a sensitivity to other people’s problems that is well beyond their years.
And I’ve toughened up. I used to be the sort of person who’d apologise if someone stepped on my foot. Standing up to my boss about being expected to work through my lunch hours once gave me a week of sleepless nights. But having to fight for help from government authorities means that you quickly learn a degree of bravado and determination; if you don’t, you’re nowhere. I now know the sky’s not going to fall in because a few education officials grumble about me not being able to take no for an answer.
It was in an attempt to make sense of all of this – not just the chaos or the struggles with authorities but the ways in which having Jenny has made us who we are as a family – that I decided to put it all down in a novel, called “A Rock and a Hard Place”. Hollie, the autistic daughter is very much Jenny as she was seven or eight, but otherwise all the characters are invented, though the parents’ struggles with autism are real enough, mostly ours and those of a few friends. Because I love novels with vibrant sub-plots that are resolved in an exciting climax, I put in a few of those for good measure. There’s a large-scale hunt for a lost child that leads directly to the solving of a 200 year old mystery concerning another lost child; there’s a modern-day hermit, an extramarital dalliance and a woman with a death sentence who rediscovers hope. A couple of weeks ago I realised a 40 year old dream when I held a real novel, written by me (and published by the Autism-Asperger Publishing Company) in my hands.
But what I still haven’t been able to make sense of – even after 13 years - is what goes on in Jenny’s head. We try to draw her into our world, but she prefers to be in her world, where she’s alone but almost never lonely. I think she views us as robots provided to service her needs. She’s fond of these robots in her way, but they can be alarmingly unpredictable; they tend to make these loud incomprehensible noises when she dashes round the house at 2am, putting all the lights on, or fills the bath ten times a day, then slops great waves over the side.
Occasionally I still find myself looking round for miracle cures. When she was tiny, I believed that somehow, somewhere, there must be a key – a therapy, or a medicine or a vitamin supplement – that would unlock her world and enable her to come out. We were convinced that inside that fortress there was a real Jenny longing to escape, and we have spent unbelievable amounts of time, energy and money (£40,000 to date) chasing this dream. We now know that although she can be helped to improve, there are no miracle cures.
I’ve realised a 40 year old dream, but I also have a 13 year old dream, the same dream that we all have for our children, that Jenny will ultimately realise her full potential, whatever that is. Okay, she won’t ever go to Oxford or play on the Centre Court at Wimbledon, or even climb on to the school stage to receive a golden certificate. But we’ll be just as proud if she speaks her name or learns now to ask for the toilet. We’ll get there.
© Anne Sutcliffe 2006.
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