An All Round Challenging Week.

I am the first to admit I know little about computers. I left school age 15 in 1966 when the only computer I was really aware of was ERNIE, who failed to choose my Premium Bond number every month, and as far as I know has continued with that failure to this day. To my untrained eye, ERNIE was a collection of metal cabinets with huge reel to reel tapes in the top in a room the approximate size of a church hall, only cleaner and lighter. It seemed to be constantly monitored by men wearing spectacles and white coats with pockets full of pens carrying clipboards, looking quizzically at flashing lights and the bits of paper it spat out every now and then. I remember seeing a short film about it in the News Theatre at Waterloo station with my dad when I was about 8 years old, I remember wondering how they started it up and how they stopped it.

We didn't actually have electricity in our house until 1960, there was nothing in my childhood home that you switched on. the only thing that run on electricity was a huge valve radio which was powered from two heavy glass accumulator batteries which my mother used to carry to a garage once a week to be topped up with acid and recharged. We had gas light downstairs, candle light or a torch upstairs, no hot water so no bathroom, a huge sink and a small gas cooker in the scullery, a small range in the kitchen which ran on coal and had a tiny oven that made the finest rice pudding in the world, and a permanently boiling kettle on top. There was a fireplace in the front room, but we only really used that room at Christmas and new year and if the kitchen was being redecorated, which happened every two or three years. The rest of the house was unheated unless there was snow on the ground or my grandfather was having one of his turns, which I now know was actually malaria picked up during ww1 in Egypt or Galipoli, on these occasions there was a wonderfully smelly oil heater placed on the landing, just to keep the chill off.

You are probably wondering about the WC, it was behind a door reached by opening the backdoor and turning sharp right in a little porch area, so it wasn't strictly outside! But this little room had its very own tiny oil heater which was tucked at the back of the porcelain, and you are going to love this, underneath the bench seat (piece of wood with a hole in it!) which crossed the width of the room. It was a comfy, cozy pace to be in the depths of winter! Regarding plumbing, we had one tap over a huge stone sink in the scullery. So the gas pipes downstairs and the one water pipe that serviced the sink and the cistern in the WC, of necessity downstairs, was all the plumbing in the house, and of course no electricity so no wiring!

So what is this all about, what is it leading up to you will be asking yourself, well last week was fraught with difficulties all due to mechanical/technical difficulties and total breakdowns in all sorts of ways. Technical problems started early in the week when Sarah asked for some of the photographs she had seen going round on a screen saver, simple enough, her computer is not connected to the Internet or any other device in the house come to that, so memory stick in computer and 'which ones do you want Sarah?' we raid the photo library. Sarah gets bored and restless fairly quickly so we stop at about 30 pics. 'Shall we put them on your computer now Sarah?' is met with an affirmative so off we go. This job shouldn't take to long, but it did, over an hour with Sarah getting more and more agitated and not a little anti social. The perishing machine kept telling me the start up disk was full and I should throw out some files.

Throw out files!! I was close to throwing out the whole machine, but reason prevailed and it was decided there was probably just a problem with the OS which needed to be addressed, we have various fix it disks, one of them should sort out the problem, hadn't considered that it may make it worse of course, which it did, which resulted in screwdrivers and a gathering of all the bits and pieces of old, dead, dismantled and discarded Macs which were scattered around the house. But I am moving ahead, the jiggery pokery with computers did not start till Sunday.

Tuesday saw small disasters averted.. entered bathroom in time to take the flannel out of the basin which had the cold tap dribbling into it all morning and was about to overflow, this has happened before, it is not pleasant and results in water running down the walls and then if you are unlucky, water dripping from the centre light fitting, a definite worry!

Wednesday was the day the computer problems were identified, leaves blocked the drains outside, and the dishwasher only did a halfhearted job and was cleaned and had salt put in it and is still not quite right as I type.

Thursday saw the electricity go off, all of it. Unfortunately Thursday is the day Sarah stays home, so the wonderful and rare silence that falls after you hear the trip on the fuse box going was broken quite quickly by whining and complaining of husband and daughter. I assumed it was the fault of the kettle, which has also been behaving strangely for a few weeks now. No, it was worse that that, it was the oven. Dead. Nothing. Just a bloody clock telling me the wrong time. The rest of that day was spent trying not to think about ovens.

Friday was alright, thought I would see if there was any life in the oven, to my delight the fan and the light came on and the grill is working, and if I put the setting to grill and oven I have considerable heat in there, downside is I can't tell how hot it is as the little light that tells me when it's up to heat is definitely out and not about to come on again. But it is not unusable until I work out if I can afford to have it fixed, or attempt a bit of DIY. My iBook deciding it wanted nothing to do with the Internet was the worst thing that happened on Friday.

Saturday, was awful. Opened the post to find and invoice from council asking me for £300.00 for "non residential adult social care services 4 weekly invoice - please refer to payment scheme for details" This is the result of the councils "Fairer Charging Policy" Sarah receives Disability Living Allowance and income support, she has no savings and suddenly they want £75.00 a week from her on top of the £40.00 a month they get for respite care. I have to say I was very upset by this as it flies in the face of everything I was told was going to happen, I was expecting a monthly bill of no more than £25.00. Spent the rest of that day trying to work out what we could cut down on/get rid of/forget about etc. By the end of the day I decided that if they thought I was going to pay £300.00 a month they had another think coming and I would be getting militant and only paying what my calculations based on their own figures and guidance came to, which on closer scrutiny means very little indeed! I was in a 'See you in court' frame of mind!

Sunday was the day put aside for the computer marathon. Two little old iMacs, one even older PowerPC, one iBook with dead battery and a reluctance to connect to the Internet. Also one spare hard disk and a variety of RAM chips, a newer and very reliable G3 and a firewire... we can make this work! I won't go into all the gory details or the bad language or the amount of tea and coffee consumed or the desire for a cigarette, a thing I haven't craved for nearly 10 years, but we started at 11.00am, exposed the innards of appropriate machines, moved stuff about and put them together again. Various downloads and updates later by 11.00pm we had two working iMacs, one of which had been certified dead a couple of years ago so a little bonus we has not looked for, iBook still working if connected to the mains but minus a bit of RAM, PowerPC not much good for anything now, so we may have gained a little bit of space.

Almost a whole week of stuff going wrong. I forgot to mention the central heating which hasn't really worked properly since it was put in and is coughing and spluttering in an ominous way again. Yesterday was Monday, nothing went wrong, but had to spend a fretful couple of hours explaining to Sarah that some of the stuff on her computer would look a bit different, particularly iTunes, but she seems to be OK about it now.

You are probably wondering why was I going on about the house I grew up in and my computer ignorance at the beginning of this marathon blog? Well the whole week has bought to mind the simplicity of life in the 1950's. Leaves blocking the outside drains is the only thing that could have gone wrong in my home in the 50's. It was 1960 when my family finally got electricity, why we were so late getting it is another blog, but I think back to those pre electric days and find nothing wrong. I actually enjoy power cuts, I know I can live without it. We have come to be so dependent on it in the home that we arrange our lives around it and when things go wrong it seems like the end of the world. Of course we can't do without it now, we are all too tied in to the Internet, I don't know many people without a computer and I know we would be absolutely lost without ours. I suppose what I'm getting at is look at how far we have come... ERNIE in the 50's and those other huge machines in old black and white newsreels, to me and Bill prating about with bits and pieces of Macs on the kitchen table and making them work, I call that progress. My first job in 1966 was in a GPO telephone exchange on an old PBX horseshoe set up with dolls eyes and jack plugs and dials, in a time when you had to use an operator to make a call outside your area, pre STD, wires everywhere! I never imagined then that I would have a phone smaller than a packet of 20 Embassy king size, that can connect me to anywhere in the world, via the WWW. Actually, I still have a bit of difficulty with that concept.

The other bit of progress is Social Services, I do understand and agree with the Welsh Assembly Governments new Fairer Charging Policy, in the present financial downturn it needs to be put into practice, and believe me, if I had the money they could have it. But it is being administered by local councils whose mindset is still firmly in the 1950's and 1960's, and who's administrative skills are somewhat in doubt and can only be described as draconian. 'We are right, you are wrong.' is tattooed to the inside of their eyelids. I rang them this morning to find out why they were expecting me to pay so much for Sarah's social care and was told they had not looked at the assessment form I had sent them and they would ring me back towards the end of the week with an adjustment, but to hang on to the invoice for £300.00 in case it was correct. Until I hear differently I shall remain in a 'See you in court' frame of mind on that matter....

Ceramics, Pottery Or Mucking About With A Lump Of Clay

I go to a pottery class on a Tuesday evening. I've been going for over five years now, not because I haven't got the hang of it yet, I specialised in ceramic sculpture for my degree, but because I like to keep my hand (and eye) in, and I like the other folk who have come and gone over the time I've been attending. I don't have the space or the equipment needed to work at home, which I would love to do, so this little class is the next best thing although I cant work to the scale I would like and the variety of glazes etc. is a little limiting. So I thought I should say a little something about what I make, and believe me, it is little in all ways. My final piece at college consisted of two curved monoliths, one 5ft tall and the other just short of 7ft. I had to build a kiln outside to fire them, I'd show you a photograph, but I actually cant find any and I have no idea where the objects are now! But here is a picture of some of the very much smaller maquettes I made on the way to the final piece...

And this is a more conventional pot I made while experimenting with glazes, not a great photo, but in reality it has a look of old brass..

Now here are some pictures of the more conventional stuff I've made over the last few years which have pleased me...

And here are some bits and pieces I made for the garden which I quite like...

That's your lot for now, I'll post up some more pictures as I take them or find them, and maybe talk a bit more about it all...

Latest Crisis Now Over, Like The Full Moon.

So, latest crisis with Sarah seems to have been abated, we're still walking on egg shells every now and then, but it doesn't look as if she is going to implode and drag us all into a black hole any time soon, things have definitely improved.

Had her first outing with new carer at the new 2 hour Tuesday evening slot, they went to little local authority run 'leisure lounge', which is just a tiny little gym with a sauna, a steam room, a jacuzzi and little cafe upstairs from the local swimming pool. She was very enthusiastic about it, so was new carer, so that looks like a win win situation!

But getting to this more peaceful place has been a long haul. Added to the crisis created by the unnecessary changes made to Sarah's care package two or three weeks ago, her regular carer suddenly became unavailable which intensified the last few days of her anguish. Put simply, she's been bloody difficult, and the new problem rendered her inclined to throw her weight about, physically as well as metaphorically!

The regular carers absence for an undisclosed time and reason is a bit of a nuisance to say the least, Sarah is very fond of her and has always shied away from anyone taking her place. I thought I had made it clear that it was no good sending someone she doesn't know, she won't go out with them, just cancel the appointment, so to speak. So I'm now more than a little bit concerned about the competence of the service provider. Nobody from there bothered to tell us that the usual carer wouldn't be calling for Sarah. They sent someone neither us nor Sarah had ever met, and she arrived not at the appointed time but two hours earlier, thus, adding insult to injury. Had they bothered to ring up and tell me the usual carer was unavailable and they intended to send someone else there would have been the opportunity to say again don't bother, she won't want to go out with anyone else, don't waste your time, but no, they send the poor woman they are hoping will be taking her out on a Tuesday night, who was to be introduced to Sarah by the current but suddenly unavailable carer whom Sarah trusts.

Needless to say her arrival was not met with whoops of joy from Sarah, in fact, you remember the black hole I was talking about earlier? We were pretty close to it, let me tell you! The poor woman from the service provider was distraught, she was just doing as she was told, what she hadn't been told was that Sarah was autistic and had some specific needs, she'd just been told to turn up and take her out. As I have said before, what do I know.. I'll tell you what I know, incompetence when I see it!

So there we were two Thursdays ago with a very volatile Sarah, and absolutely nothing we could say or do to put things right for her, and again, it was the result of so called professional input! I spent the rest of that afternoon on the telephone making my feeling known to the people who should have known better and warning others that they were in for a rocky ride.

Friday came, Sarah went to day centre in a very nasty frame of mind, and I was actually feeling quite sorry for her Care Manager who was making her way up the valley to have a 'little chat' with Sarah to try and explain things to her at the day centre that afternoon, she has to explain also that the woman who turned up on Thursday is the very woman who will be taking her out on Tuesday evening and she really is a very nice lady, personally, I thought she may have been onto a loser there, I was also hoping the first aid box was well stocked. On the upside, I was thinking that this could actually remind those who need to be reminded that we've not heard from psychology yet, and this would be a good time for a bit of input from that direction.

Either way, all this is happening somewhere else, I'm staying out of it. I had something else to do on Friday, which was a great disappointment to me as it happened, or rather didn't happen, but that is another blog on an entirely different subject which I will come back to later when it starts to make a bit more sense than it does at the moment.

Back to the object of this blog, Sarah's meeting with care manager was not entirely successful but no injuries were inflicted and another meeting with the care manager is set up for Tuesday afternoon with Sarah, 'just to make sure'. What she is making sure of is unclear as Sarah was still not a happy bunny when she got home on Friday evening, although calmer. Sanctions were still in place because of the challenging behavior, so we don't go out over the weekend, which was actually pretty calm, all things considered.

Here is the bit nobody believes, even I have difficulty with it, there was a full moon last weekend, once it started waning Sarah calmed down, this happens every month, she has always been susceptible to going over the top during the second quarter of a waxing moon, her father is the same. Monday she was fine, Tuesday she was a little confused by care manger telling her the same stuff she told her on Friday, but, as I said at the beginning, went off happily with new carer in the evening and they both came back happy. Sarah also says she is happy to go out with new carer on Thursday. So crisis over, lets make the most of the cheerful Sarah until some fool tries to change things again and the blasted moon intervenes!

Hopefully the people that need to know, now really do know that you shouldn't spring surprises on people who can't cope with them, and in conclusion, is there anybody out there who can give me some sort of sensible reason why the moon effects some people and not others, and how the hell is it that I have the misfortune to be spending my life with two people who are most definitely under it's influence....

Thinking Time.

OK, a nightmare couple of weeks, we've had them before, we will have them again. It is the nature of our existence. We live constantly on the edge, not just me or Sarah, or you, but all of us.

The true reality of our existence is the present, the moment we exist in. In truth, none of us know what will happen next. Our lives are a conglomeration of memory and experience, we remember our experiences and work out the most likely course of events into the future. Hence most of us spend our lives doing our level best to avoid the unknown by doing what we always do and by creating strategies to keep ourselves occupied and relatively safe in the hope that existence will continue in a more or less linear progress to who knows where. We tend not to dwell on the uncertainties, life wouldn't be worth living if we did, constantly gazing into an unknown future which our insurance policies remind us is littered with accidents, sickness, acts of war, terrorism, revolution, insurrection and if you are really unlucky a malevolent god, and you really don't want to dwell on those!

We are remarkably good at keeping all the heavy stuff at the back of our minds, we do what we have to do to stay alive and then we embrace society and culture, we throw ourselves into the arts and sciences to educate and amuse and expand our minds. But for all that, I don't believe we can ever completely block out that obstinate little niggle living in the back of our minds with all the horrors, whispering in your ear, saying 'you don't really know what is going to happen in the next moment do you, not really.'

There, three paragraphs in and I haven't used the word, cute little word, quite innocent, very useful and probably our biggest enemy, of course it is not all bad, it is also, apparently, the greatest healer, but we are never entirely happy about it because it goes too fast when we are enjoying ourselves or we are late, and too slow when we are bored or early. Time, some of us don't have enough of it, some of us seem to have it to spare.

Time is the most important concept we have to grapple with, civilization depends upon it. Without some sort of synchronization of time society would not be able to function, we refer to it constantly. There are clocks and time pieces everywhere. So why am I saying all this.... I opened this with the statement that we have had a nightmare couple of weeks, a couple of weeks, a measure of time. Sarah has had her world turned upside down because the times she relies on have been messed about with.

I have this little theory that since time is so important and all encompassing to the neuro typical mind, how much more important it must be, by it's very nature, to the autistic mind. Sarah has many ways of checking the time, several clocks, a watch, the tv, the radio, probably the most reliable is the one in her head, as she seems to be able to tell me the time without reference to any mechanism until after she has told me, just to check. Time beyond hours and minutes, as in days months and years are also well established in Sarah's mind, for instance, she know there is a full moon every 28 days, and she knows that it coinsides with her menstrual cycle, she knows how many days there are in each month, and she knows there is a leap year which gives us an extra day in February every fourth year, so she can still tell you accurately what day you were born on and if you are silly enough to giver her a year she will broadcast your age.

Her transport arrives at 8.50am, if it is more than 10 minutes late, she is distraught, she likes to eat her tea at 5.30pm, if it is late there is hell to pay. I could go on, times and dates which are set and written down are set in concrete, change them at your peril. But she still cannot work out that there is a passage of time that has to be negotiated between say catching bus at say 10.00am and getting to the place where you catch the bus. I have learned now to take 10 minutes from the time to allow for this, but of course you can't do that with everything and that is where some problems arise, though to be fair not always. Woe betide the misguided but well intentioned who like to spring surprises on us, strategies built of time, take time to build. We don't do surprises and the unexpected gets a bit awkward as well.

I believe that Sarah finds herself staring into the abyss of the unknown on every occasion that time lets her down. Her life is ruled by routine, she depends upon routine and most routines are ruled by time. We deal with time, as I said before, we build strategies to avoid disaster but Sarah builds her strategies with time and if her time strategies gets messed about with she has nothing to guide her and she is left in chaos. So it's not really surprising that she plays up a bit on these occasions, not to mention the added insult of pre-menstrual stress, which thankfully has just stopped due to the timely appearance of the full moon.

So there you go, that's my little theory, written quite hastily whilst trying to cook Sunday dinner, which also requires some nifty timing I notice. I suppose I should say that most of my thinking on the nature of time was acquired whilst studying aesthetics in Cardiff several years ago where we were made to read 'Truth and Method' by Hans-Georg Gadamer, which made more sense to me this afternoon than it did when I needed it too all those years ago, and amazingly I knew exactly where to look in it to make sure I wasn't talking complete nonsense, which should please my old philosophy tutor Dr Nicholas Davey, his sojourn slumming it in the art department of UWIC was not entirely wasted, I learned something!

I hope this has made some sort of sense, bit out of practice for this sort of writing.