Monday, 24 August 2009

So Anyway, The Screaming Has Stopped.

Well, life with Sarah is something of a roller coaster ride, I probably said that in a tweet sometime over the weekend. She had been pretty easy to get along with for several weeks now, no real meltdowns or tantrums, and the screaming when things don't go her way seems to have disappeared completely.
The screaming thing came as a surprise to us, she had never done it as a child and it didn't start until she was turned 21 years old! We had a couple of years of it and worked out that it was just attention seeking and that she had seen the technique used to great effect by a fellow service user at the day centre and thought she would give it a go. It was very effective and always got our immediate attention! It has taken a couple of years, but we have cracked that one, albeit with the use of inappropriate television shows, but she has worked out that there is a risk of screaming bringing her the wrong sort of attention.
She has her own television which she has complete control over. We have no influence over what she chooses to watch, and she chooses to watch Sky 2, don't ask! She is fascinated by those awful late night police reality whatever programmes, Night Cops and Road Wars in particular. I was absolutely horrified when I realized she was watching these, she had been telling me about a police show she had been watching and I stupidly thought it was those endless cops and robbers drama series that litter the late night TV. She doesn't actually watch the television in the conventional way. The TV is on, so is the computer with iTunes playing, and always with the iPhoto screen saver on showing the entire family photo album dating back to 1985 going round and round and she will be listening to her iPod. Fortunately, she never really took to the radio. Whilst all this is going on she will be sitting in her arm chair or on her bed counting, organising and reorganising her collection of paperclips and safety pins, only glancing once in a while at the TV or iMac Screen.
Yet somehow she has learned to identify the difference between drama and documentary. Drama in the form of your average TV output of soap opera, comedy. whatever, she doesn't follow at all, and couldn't tell you what is on or what is happening, somehow she knows it is not real, so takes no notice. But Night Cops caught her attention and she worked out that these were not actors playing parts, but real people doing bad things and having bad things happen to them when they got caught by the boys in blue.
Now, don't get me wrong, we don't live in a desperately deprived or depraved area, but Friday nights can get a bit lively, and Sarah and I were making our way home from a trip to the cinema which meant going through town early one Friday evening recently, and some Night Cop style action was going down. To Sarah's horror, in broad daylight! It was a bit of an altercation between two women about the same age as Sarah which involved a fair amount of screaming and shouting. Police were on the scene and we didn't hang around so I don't know the outcome for them, but the outcome for me was brilliant, as Sarah had seen for herself the consequences of 'bad behaviour' i.e. big burly police people arrive and lots of ordinary people stop and stare. We have had no screaming and shouting since.
I am know there are far better and much more correct ways to deal with displays of inappropriate behaviour, but this chance encounter with reality, as opposed to TV worked and has not resulted in any apparent fear of the police which I was a little concerned about, in fact she has stopped talking about them at all, which is good, because I was running out of appropriate responses and was in danger of reverting to my default position on the police which has its roots somewhere in the late 60's early 70's and is probably best not discussed!
So, a win as far as it goes, but another thing always comes up eventually, and last week it appeared in the form of tears, real tears, the sort that break your heart, and the last thing she wants is a hug, which is of course all you can think of doing. Something has got to her, I have no way of working out what it is, I just have to stay alert for the time being and make note of possible triggers and employ distraction strategies.
Fortunately, as a household, we've got an awesome sense of humour, and despite autism, Sarah has this same trait, so some well placed words, or unfortunately, a pratt fall will have her dissolving into laughter. This will probably be coming and going for a couple of months, and I don't think we will get to the bottom of it, but we will get bloody good at diffusing situations by dragging the humour out of the corners of our minds we may not have visited for a while. If there is one thing Sarah is really really good at, it is keeping us on our toes. Just when you think you've turned a corner with her, you find yourself getting flung the other way and going downhill incredibly fast followed by the inevitable slow climb up again before turning another way around another corner, looking at another horizon. It really is a roller coaster.
Fortunately, my experience of roller coasters has always left me unable to stop laughing (possibly a little hysterically sometimes!) and then just plain exhilarated. So it's time to take a deep breath and see where it takes us this time. Wherever it takes us, we're going to learn something new and that can't be bad. Autism is one hell of an adventure....

Wednesday, 12 August 2009

Hash Tags, Twitter And The NHS.

Ok, so upfront I should say, I'm not to fond of hash tags ..##.. I don't like the look of them and, truth be told, they're not easy to find on my keyboard, it involves a key tapping pattern that occurs for no other purpose than to produce a hash tag, it is the only symbol I use out of a bunch that are to be found under the top row of keys if you press down the big key between Ctrl and Alt on the left hand side, which on our Logitech wireless keyboard appears to think it starts Windows, we use a Mac so it doesn't, and it also says Alt option, but I only use it with 3 for #. Here's the whole row `¡€#¢∞§¶•ªº–≠ not being an expert at typing, I haven't a clue where I would use most of those or what they might be called.

Almost he only time I use # is #followfriday on Twitter. Personally, I think #unfollowmefriday would be more appropriate as I seem to loose more followers on a Friday than any other day of the week, but since I can never work out who the deserters are I figure they weren't that important. I have a hardcore group of twittermates who seem to have always been there who have become strangely important to me, and seem to be a bunch of good people, I wouldn't like to loose any of them, but all those life coaches from California and inspirational speakers from New York and Chicago, well, I figure they are the ones who disappear when their Twitter Apps automatically unfollow all who don't follow them back, which seems like a colossal waste of time to me, since it was probably some other App which followed me in the first place!

Now hash tags are popular on Twitter, and very useful too, identifying searches and trending topics and giving me quick clues as to which tweets to ignore and which to take notice of. Of course there is the novelty value of seeing something daft becoming a trending topic, but that is wearing a bit thin now. Some have been very important and influential on an international scale, such as the recent elections in Iran, then there was the European Parliament and local council elections here in the UK back in June with the hash tag I used myself quite a lot #stoptheBNP and variations along that theme. These thing have influence, and if they only bring something to the attention of folk who may not otherwise have been aware, they are doing some good.

Now anybody that know me knows that I was brought up to be a good socialist. Not a popular label now I know, but whichever way round you put it, that is what I am. My political heroes are all on the left, try as I might I can see nothing of worth in the conservative party, the thought of them forming any sort of government honestly fills me with horror. This is not the time to go into explanations, it is just the way I see things based on experience. So I found the latest hash tag on Twitter which I noticed yesterday quite intriguing, #welovetheNHS. Wow! since I hear nothing but moans a grumbles about the NHS and its failures this one came as quite a surprise, so I looked into it. I found Daniel Hannan MEP on Fox news in a programme called Freedom Watch, here is the url if you feel the need to see it, for your own sanity I would advise against.. you will have to copy and paste, I'm not clever enough to turn it into a conventional click on it link!

Mr Hannan is basically placing the blame for all that he feels is wrong with Britain today at the feet of the NHS. He did say some nice things about the staff, but if you follow his reasoning he would have to otherwise the conservatives wouldn't have a hope in the next election! Now I am only speaking from personal experience, but without the NHS I don't think I would have survived childhood, In fact I doubt I would have survived my birth way back in 1951, without the help of the NHS. My mother certainly would not have survived. In 1985 history repeated itself and without the NHS my daughter and I would probably not be here. Ten years later my mother was being helped and encouraged by the staff of the Royal Marsden through her last few months. These things are priceless. Surly in a civilized society health care is a right, not a privilege. We pay taxes and we pay national insurance, we have to and it is only right that we do, this is what pays for a National Health Service and without a healthy nation what the hell is there? Even the most Conservative of Capitalists must be able to see that without a healthy work force your profits are going to suffer and heaven forbid your shareholders not having enough coming in to pay for their own private health care!

I only used the hash tag once and seem to have upset someone with it, I'm guessing a supporter of Daniel Hannan. Of course there are things wrong with the NHS, too many highly paid managers to mention one, and yes I know there are many other issues which need to be addressed. I can't get the support I need for my autistic daughter because there are not enough psychologists available, also at the moment for me to attend an out patients appointment for a long standing health problem the hospital is so far away I have to take three separate buses to get there, but you take the rough with the smooth, and you are grateful for what you get. But just imagine, if all the money that goes to the private insurers (and their shareholders) were to go into caring for the sick, things would be different. I do not believe that there is room for conventional profit making in health care. You make your profits from luxuries, not necessities, but like I said at the beginning of all this, I was brought up to be a good socialist. There is only a limited number of people I am going to see eye to eye with. Fortunately a lot of them are on Twitter, for which I am eternally grateful!

If you got this far, thanks for sticking with it to the end. There is a lot more I could say, but to be honest I don't want to. I've said what I needed to say, though it took me a while to get to the nub of it, if I ever did! But Nye Bevan, for all his faults, will remain one of my heroes because without him we wouldn't be saying.. #welovetheNHS...