Tuesday, May 02, 2006

Column, May 2, 2006

I'VE always hated those stories of suicidal parents who choose to take their children with them when they kill themselves.
It seems to me the supreme act of cruelty. Fine, if you cannot take this life any longer, then free yourself of it, but to deny your children their chance of one is despicable.
That was my reaction when, recently, there was news that Alison Davies threw herself and her son, Ryan, off the Humber bridge.
It was only after that initial, awful, story though, the details emerged of Ryan's autism - fragile X syndrome - and the strain that it had put on her and her family. A strain that she apparently could no longer cope with and was not prepared to leave her family to deal with when she was gone. Her last message in a 999-call, was to tell her family not to worry.
So it's not as simple as a solitary act of cruelty by a deranged parent. It makes you wonder what parents who have such children go through and how much support they actually get.
And then, a few days later, a message arrived from a parent in just such a situation. She was moved by Alison Davies's story, to write in order to give some insight into the dreadful strain parents coping with an autistic child can find themselves enduring.
This is her story:
"Our son has autism.
I've admitted this a thousand of times, and by now the word itself holds no more terrors for me. When he was first diagnosed, the word seemed to reverberate in my head in multicolour glory whenever I sat down. It governed every conversation, made friends eyes glaze over in boredom, brought chats on the phone to a grinding halt. In short, it was taking over our life as a family.
There is no quick fix for autism. You can go down the path of checking for food allergies and introducing supplements to the diet until the cows come home. Some people do get some success, but the cases of miraculous improvement are sadly few and far between. And many of these supplements are expensive. Side effects can make a normally placid child hyperactive.
There is only one course you can take to ensure a better future for your child. You can begin fighting. On the way, you will develop the hide of a rhinoceros and the deviousness of a politician. Diagnosis needs to be as early as possible.
We were lucky: a caring health visitor spotted the signs while on a routine visit to a sibling, - just one of a few people to whom we owe an immense debt of gratitude. When you get over the shock, you begin asking what needs to be done.
You automatically turn to the supposed experts around you, and hopefully a school placement will be made for your child. Being of what I have to admit is a singularly pig-headed nature, we refused what we were offered, and now at least we are not amongst the desperate parents still fighting to get any form of one-to-one help for their children.
Diagnosis magically opens up several doors, not least of which are the various benefits to which you are entitled if you have a disabled child. But that is not to say that life has been plain sailing.
Autism is not an obvious physical ailment. Children I know who have the condition are invariably extremely good-looking. You will know IF a child with autism looks you directly in the eye. There is an innocence and trust there at every age that you normally only see in very young children.
Sadly, poor eye contact is one of the first signs of the condition A child with autism can blend into a crowd, until you suddenly realise that people are giving you funny glances. They are not used to behaviour - a sudden squeal, hand-clenching, funny walk, inordinate interest in somebody else's business - which you see every day of your life.
Apart for one occasion when I must admit I flipped at the crass remarks of a teenager, I have relied on my rhinoceros hide. Once again, we are lucky. The odd behaviour I have just described is minor to say the least when compared to what some families go through.
Picture this scenario : the child comes home from school on Friday, the hatches are battened down, and the family disappear until Monday morning. That is during school term. Many families take the option of leaving their autistic child in residential care during school holidays, torn apart by their love for the child and the need for a relatively normal family life for any other children and to preserve their own sanity.
There is official help available, - from Education, Social Services or charitable organisations. When you can get it. Social Services suffer from staff shortages, due as I understand from staff falling ill through strain at work. (I nod and tut in sympathy, while the thought races through my head : have they ever tried living with a child who has even moderate disabilities?) Education will take you through the mill as you teeter from initial gratitude to downright distrust.
And why is it that everyone in authority seems to think that they know your child's needs better than you? In the end, however well-meaning outside agencies might be, they cannot possibly be there for you all the time. Responsibility ultimately falls to you.
I have been moved to write this because of the tragic story of Alison Davies and her son, Ryan. I could have written more or less the same thing 4½ years ago with the case of Helen Rogan and her son. Both these mothers were in despair because they were let down by the very people who should be helping them."

You read that, and you begin to understand what drove Alison Davies to that bridge that awful day.

THE flags in Welshpool do no go up and down like yo-yos we are told.
This was the reason given for failing to have it fly at half-mast when local soldier, Lance Corporal Paul Thomas, died in Iraq in 2004.
So his parents are understandably looking askance at an honour heaped upon then man who helped make that decision, town clerk Ken Fletcher, who is to have his name included in the mayoral roll of honour on his retirement after 40 years' service.
This is not to denigrate those who slog in the trenches of local government, and whose efforts deserve recognition - 40 years is a long time to be dealing with councillors. But it hardly compares to giving your life for your country, no matter how much some people might disagree with the reasons we went to war in the first place.
If clerks get their name in gilt letters for evermore, then a fallen soldier deserves his home town's flag to be lowered as a mark of respect.

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