Wednesday, 31 December 2008

2009 still here

I am still here and willing to blog (if not time -caring obligations and all that), though hats off to the Twitterer who managed to twitter from a plane crash (find your own link). Think there is some point to be made that it is easier to Twitter from a plane crash than it is to Care and Blog.

New Year's Eve, I am the unpaid care for my 17/18 year old Autistic son. So much for having a life, education, employment of my own according to the spirit of various Acts of Parliament. I am home, babysitting an 18 year old.

Sorry, but while many dedicated and long-standing parliamentarians have fought hard to create a legislative and cultural spirit about looking after carers so that they can look after the utterly more vulnerable, I fear another huge effort is necessary to make a reality of carers well-being as law depends on people on the ground testing it.

The story that caught my attention over the last few weeks is that of the 5-year-old Autistic boy who drowned in a swimming pool in France. Sure young children often get caught up in accidents of this kind. But his Autism was surely a contributing factor. His mother lost sight of him for a second.

A friend of mine once entrusted with the care of my similarly aged Autistic son returned from a trip out with him only to declare that they were unqualified to be THAT vigilant on his behalf and that how was it humanly possible to safeguard a child like him in such a normal envirnoment. Autism is characterised by a lack of awareness of danger. My son is almost 18 and I kid not, Tesco's car park is a life and death situation.

I have spent the last decade-plus being THAT vigilant. Autism isn't terminal but it could well be. If it hadn't been for the support of the much maligned 'traditional' respite services ensuring my being able to be vigilant he would not be alive today.

If there is any test of 'caringness' -both parties are failing.

While billions are poured into the financial system -I contend we have no option - the opposite is tantamount to saying 'stop the world I want to get off' - we seem to have lost sight of what wealth creation was for. It has become a thing in itself.

How many nights respite care can be purchased for the price of a designer handbag or a Smythson product.

Here in the north of England this would buy a complete night off for a family caring for a severely disabled child.

Happy New year!


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