Who Knows Where The Time Goes...

So it is December again, I'm not a big fan of this time of year. It is too dark for too long and if anything is going to go wrong, it'll do it now. It's only saving grace is the speed times moves at in this lead up to the 'festive season'. I guess it is the shortening daylight hours which make the days seem shorter, I don't really know, but sometime in the beginning of November the days seem to start going past a bit too quickly and before you know it it is New Year. In an act of monumental bad timing I managed to give birth to our first child, Sarah, on the 19th of December 1985. She was delivered by emergency cesarean section so they wouldn't let us out of hospital until New Years Eve, almost a fortnight of hospital food, we almost died of starvation although on the up side, 'matron' was very old school and firmly believed that a bottle of stout a day was in order for new mothers. Who am I to argue!

Sarah will be 24 on Saturday and every year since 1985 we have had to make an extra special effort to get the birthday remembered or even recognised. Each year it has become harder and harder to concentrate on the birthday with Christmas hard on it's heels. Try buying a good birthday card this time of year, and if you really want a challenge try getting a birthday cake that looks half decent, oh yes, then there is the birthday wrapping paper, but that is only part of it. We all know you get presents at Christmas and on your birthday but there is just less than a week between the two events. Sarah was due on the 1st January, and in so many ways this would have been better, the big Christmas hype over and done with.

When I was a kid Christmas always involved my Uncle Jack, Aunt Molly and cousin Christopher arriving for Christmas dinner and going home after the sporting fixtures were over on Boxing day. Christopher and I were roughly the same age except I was born in March, he was born on Boxing day. We were the only children in the family, both of us an only child. They only lived a short walk away, but Christopher never had a birthday party as a child, he never had any of his mates round as they lived in a tiny one bedroom flat on the third floor above a shop on a busy main road, the kitchen was on the landing, the toilet was one flight down and shared with the tenants on that floor. There was no bathroom so of course no hot water, just a big sink on the same landing as the toilet, as far as I was concerned they were light years ahead of us because they had electricity and therefore a television, although all I can remember seeing on it was Popeye! I digress, back to the birthday/Christmas dilemma..

We had the traditional 'sack' of presents from Father Christmas in the morning and a few more in the afternoon with the grown ups after dinner, not much compared to the excesses children receive today, the Rupert Annual was always the best as far as I was concerned and the only other thing that lasted is a teddy bear called Hug Me who survives to this day, in pretty good shape, both eyes intact. Possibly the wisest bear in existence. But Boxing Day was Christopher's day. While the menfolk took themselves off to the pub and then some sort of sporting event, most likely football, the women made sure Christopher had a birthday. There were three of them, all around the same age, my two aunts Moll and Nell, and my mum who was known as Doll. Well those names fix them in time don't they! All three put their lives on hold for the war, Moll was a Land Girl, Nell sewed uniforms and Doll built Spitfires, a formidable force when together and once Boxing Day breakfast was washed up, dried up and put away it was Christopher's Birthday, Christmas was over and done with and there were birthday presents to open, which in our family for some reason were always better than Christmas presents, working on the quality not quantity principle, birthdays were for bicycles and scooters, Christmas was for jigsaw puzzles and fuzzy felt. By the time the football was over and the menfolk were home there was a good spread of turkey sandwiches and a birthday cake and Christmas was gone and forgotten by the time birthday boy was blowing out the candles.

Small point of interest, the names of the menfolk: Grandad was called Jim, my dad was Joe and the three uncles were called Sid, Alf and Jack. Strange that their names do not sound as dated as the women's names.

So anyway, over half a century on, I've got the annual dilemma to deal with... what is she having for Christmas and what should she have on her birthday. Thankfully now the family send her money, that can be divided neatly between the two events, but she has been known to receive one present nicely wrapped with the message 'this is for your birthday and Christmas'. Someone tell me how you explain that to an autistic ten year old! Of course It is always tricky to explain to those who don't know that it is not so much the content of the present as the number of presents opened. We had to make sure the Christmas present haul was the same for both of our kids, and to be honest, we gave up trying to get anything meaningful for Sarah in the end, because as long as she got a calendar, a box of paperclips and some chocolates she was happy, she just needed to know that her sister did not get more than her numerically. They are grown up now so it isn't such a problem, we just make sure Sarah gets a few more to open than the rest of us, but the birthday has to be dealt with first.

I am not very keen on Christmas decorations, I have no desire to light up the house like a beacon, or having the living room looking like Santa's Grotto. I keep it to the minimum. We have a Christmas Tree and a few bits and pieces that come out every year, but they don't see the light of day until the 20th December. At home Christmas does no show it's face until after Sarah's Birthday, What is the point of having birthday cards if there is nowhere to put them because of Christmas cards? And lets face it, the aesthetic of the birthday trappings clash horribly with all the Christmas crap! For the sake of sanity and good taste we'll do them one at a time!

Also, of course, we've got the whole out of routineness of the season, the air of excitement manifest in the giving of cards, and the visits to pantomimes, Christmas concerts, parties and, heaven help us, the Christmas disco. All this has always unsettled Sarah, people you haven't seen since god knows when tend to reappear. Hell! That unsettles me and I'm not autistic! We are currently in the middle of a full scale autistic maelstrom which isn't going to calm down until Christmas is over, we should be used to it by now, but it creeps up on us every year which brings me back to where I started. It is the middle of bloody winter! It is cold, it is damp and it is dark, these things do not make me happy and endless adverts on the television for crap I can't afford and really don't want.. personally I will be glad when it is all over. But time is moving at a pace and in truth, it will soon be New Year, the days will have started to lengthen and we will see spring again, which brings me to title of this post which is the title of a brilliant song which I have had on my mid winter playlist for a few years and would like to share with you. Hope you enjoy it......

Charity Stays At Home.

Last weekend saw the culmination of the annual BBC charity bash better known as Children in Need. For me listening to BBC radio 2, particularly the breakfast show, all last week was an absolute nightmare. Don't get me wrong, I don't object to charitable giving and taking, there is nothing wrong with it at all, I just object to the fact that it has to be done.

In the 21st century we can spend impossible amounts of money sending young men and women to their deaths in foreign wars which a brief look in a history book should tell us cannot be won by anyone, yet we have to act like fools, sit in baths of beans, walk, run, skip or jump impossible distances to raise money for for what should be provided as a right.

I'm just getting this off of my chest, I don't expect anyone to agree and I do not mean any offense, this is just a personal view borne of experience and upbringing. As a child charity was putting money in a tin for Poppy Day, and getting a poppy pinned to your coat. There was another one my Mum always gave to which resulted in a little pink wild rose, I seem to remember it being called a Princess Alexandra Rose and had something to do with nurses but I could have that completely wrong.

Then there were the international appeals for famine relief that pre dated Oxfam. I think it must have been in China because I recall my Mum again, telling me how grateful I should be that I was eating more in one meal than a whole family had to eat in a day in China. I was a fussy eater up till then! As communication improved and the world got smaller we heard about disasters and famines and and got used to the little envelopes coming through the door to be filled for later collection, and soon it was 1985.

Band Aid, Bob Geldof's act of genius. Give people a spectacle and while you are at it remind them how lucky they are, how grateful they should be and how affluent they are compared to the poor people of Ethiopia. Exactly what my Mum did to me 15 years earlier about the poor Chinese. And our acts of benevolence have been 'feeding the world' ever since. I have absolutely no problem with this, helping those who can't help themselves because they are caught up in catastrophes so out of the ordinary in countries unable to cope with disasters, wars and the like is a truly humanitarian action. But what happens with Children in Need is another story.

Terry Wogan's auction for the things that money can't buy, Chris Evan's dine and disco auction on the radio during the week leading up to Friday nights television extravaganza make me cringe. I'll say again, this is personal, their intentions are admirable, the amount of money they raise is phenomenal, but the amounts of money being given by individuals from my point of view is almost obscene, how do so many people have such quantities of cash to give away? Rhetorical question, it's really none of my business, I'm happy that so many people have got so much money to give away, I wish I did! I can't bring myself to watch the television on the night, it is too painful and I can't can't take the emotional roller coaster, I find myself careering between sorrow and anger just thinking about it.

Sorrow and anger because all this broadcast time is raising money for children in need here in the UK, one of the more affluent counties on this planet, where individuals can afford to shell out tens of thousands of pounds to ride in a racing car or have a round of golf with someone famous. Most of the children in need in the UK are in need because of a medical condition, either of their own or of their parents or siblings. They are seriously disadvantaged by an unbalanced society. How does this happen in the 21st century? Another rhetorical question.

We've had a National Health Service for 60 odd years, we've had Social Services of one sort or another for almost as long I think, if you know better tell me, and now of course we have the wonderful Department of Work and Pensions. All three of those institutions are in a position to help, in fact are legally obliged to help and in most cases manage to do so as far as they can. But we are coming out of an enormous global banking cock up which apparently we will all be paying for for years to come so there are financial cuts in all areas. And yet there are still individuals with money to throw away, and we can still afford to wage war in counties we have no business being in.

Anyone who has read my blog before will know that I am a socialist at heart, I probably always will be, it was the way I was brought up. So I have no difficulty in saying that most of the money raised for children in need last week, and will continue to be raised for weeks to come, should really have been raised in taxes to go straight to the National Health Service and Social Services, because it seems to me that the charities and organisations which benefit from Children in Need are doing work that the health and social services should be undertaking themselves. That a charity has to pay for a break for a young carer in a country where a bankers bonus would probably buy that young carer a house is wrong. I am very sad to say we seem to be living in Thatchers dream of no society.

That's it, sorry if I offended anyone, it's just my opinion. I realise that most of the money will have come from ordinary people who are feeling the pinch but feel the need to give and are glad to do so, that is the best part of our nation. I just wish that there was no need for charity to care for children, and adults come to that, who should really be served by a well funded National Health Service, and a Social Services that can deliver a real social service.

Not So Easy To Silence

Figure this is the best way to pass on the quantity of information I received in the email you can see a copy of below. If you can do anything, do it soon, please. (copy and paste the .gov.uk links, just click on the others.)

Not so easy to silence

	Inbox		X

Benefits and Work to me

show details 12:12 (5 hours ago)

You're not so easy to silence

Dear Irene,

With just a few days of consultation left now, Andy Burnham's attempt to 'close down . . . the debate and controversy over disability living allowance' seems to have been only a partial success.

As we explained in our last newsletter, Burnham gave an assurance that DLA for people aged under 65 was not going to form part of the funding for the National Care Service. Like many others, we pointed out that this means that DLA for people aged 65 and over, as well as AA, is still under threat. We urged people not to let this cunningly worded concession succeed in silencing them.

And you certainly didn't.

People have continued to sign the No 10 petition, which is now at number 6 on the Downing Street site with over 20,000 signatures.

http://petitions.number10.gov.uk/AttendanceA/

And posts have continued to pour into the Big Care debate website which now has almost 3,400 submissions.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Many recent posts make it clear that you are aware that assurances have been give about DLA for people aged under 65, but you're still not happy.

In addition, following our revelations in a members only article on the site at the end of last month, many recent posts have been about the fact that the government proposes to send everyone a one-off £20,000 tax bill on their 65th birthday to help cover the cost of the proposed National Care Service.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

The tax will be means-tested, so not everyone will have to pay the full amount. But it can be recovered from your estate after you die, if you own a home or other property. And the tax also won't cover the cost of food and accommodation if you have to go into residential care, only the care itself.

So, you still facing losing your disability benefits at age 65, you'll still get handed a £20,000 tax bill and yet, if you do have to go into residential care for two years, the green paper estimates that you will still have to pay half of the estimated £50,000 cost from your own pocket.

MPs were also not fooled into silence by Burnham's DLA announcement. In a debate on the proposals at the end of last month, Burnham was repeatedly questioned about whether DLA for people aged 65 and over would be used to fund the National Care Service. He repeatedly dodged answering the question.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions

Suspicions about the government's plans have been further fuelled by its refusal to publish promised details of how the new service will be funded.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

A coalition of charities - the Care and Support Alliance - is now set to make a Freedom of Information request to try to obtain the information.

Unfortunately, there is at least one organisation which continues to claim that DLA is now safe. . . Disability Alliance. Until the end of last week their home page still proclaimed 'DLA no longer part of social care plans. See our press release.'

The link has now been removed from their home page, but the press release stating that ". . . the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding" remains. So, Burnham may have succeeded in closing down the debate in one place at least.

For the rest of us, we still have until Friday to make our contribution to the Big Care debate and to sign the petition.

We'll be back next Tuesday with our final email of this campaign and information about how you can stay in touch with what happens next.

Good luck,

Steve Donnison

Please feel free to forward or publish this article.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Welfare Benefits, Or How Hard Do I Have To Work To Deserve Them

If someone had told me 30 years ago that would be relying on welfare benefit to keep body and soul together I would not have believed it. In a civilized nation like ours I always assumed it possible to make a living, if you couldn't find a job you created one. I have been party to creating and selling two reasonably successful businesses and managed to keep my head above water without recourse to the state through all kinds of life's ups and downs. But then 30 years ago I didn't have kids, to be brutally honest, 30 years ago I had no intention of ever having kids.

I always considered myself way too self centered to be any sort of mother, and to be brutally honest again, I never got on with any of the kids that belonged to my friends and went into a blind panic if ever asked to 'watch them for a minute' I was totally confounded by the presentation of the 'latest addition' which had to be coo'ed over and told it looked just like some other member of the family, a resemblance I could never see, when the reality was a red, wrinkly, wriggly, smelly and squawking little thing wrapped in pink or blue to define gender. I could never remember their names, neither were their birthdays engraved on my memory and heaven forbid that one of the little blighters would prefix my name with Auntie! I'm an only child for Christs sakes, there is no way I can be anybodies Auntie!

So there I am in 1985, nice quiet little business just the two of us. Scraping a living together in a craft business, nothing big, just comfortable after the excesses of the 70's, and I find myself pregnant. D'oh! I was 34yrs old and on the pill! How the.... yes well, there you go, Ce la vie, as they say and you have options. Well no, not really, it's a new challenge lets go for it, we had to take this seriously, so we got married, to this day I don't know why, it made no difference at all, but that is another blog for another time.

First child born 19th December 1985 by emergency cesarean section, then wrapped in a pink hospital blanket with the word 'girl' woven in stripes across it, you remember the oddest things don't you, coming out of the anesthetic that blanket was the first thing I saw. Child placed in my arms, I began to focus properly on what was happening, she was looking at me, no, not just looking at me, but searching about in my eyes, I reciprocated, a primitive, even primeval moment, never to be repeated but changing everything. And all my childless friends receded into the shadows.

1987, back on the pill, one child is enough, especially as the one we had was showing distinct signs of being autistic, not that I can get anyone to take me seriously, but that is yet another blog for yet another time, and what do you know... pregnant again. Phoned my Mum with the good news, "Ha, I only had you, you're on your own kid." were her loving words of encouragement and I progressed through the pregnancy with every known form of indigestion and a predisposition towards grumpiness. Determined not to endure another cesarean section, second child born 26th April 1988 in the conventional manner with no serious medical interventions and no pain relief. Another girl, good, not fond of little boys, this one didn't do the primeval soul searching look, this one just looked me straight in the eye and started bawling. I was ecstatically happy when the whole messy business was over, a month later husband had a vasectomy since the pill was proving unreliable, and two children was definitely enough!

Since we had our own business in those days inevitably I worked right up to the last minute with both pregnancies, and was back at some sort of work within a month, and we managed to keep the business running until it became obvious that first child, Sarah was not going to be able to attend and infant school near where we lived and if we stayed where we were the only option would have been a residential school many miles away, since it was clear her autism was severe we decided that sending her away from home at such a young age was not going to happen, we would have lost her had we gone along with that idea. Nothing for it, we had to relocate.

Which is how we ended up in the Cynon Valley, which like all people who have never come across it before, we innocently pronounced Sign On Valley, which we were soon to discover is what you do in the Cynon Valley, not the way you pronounce it. Here is the way the dictionary says it should be pronounced...

cynon is pronounced as k uh n uh n where,

k	is pronounced as		k	in key
uh	is pronounced as		u	in up
n	is pronounced as		n	in no
uh	is pronounced as		u	in up
n	is pronounced as		n	in no

It is really important that you know how to pronounce the name of the place you live in, people who have lived there all there lives really appreciate it! It was one of the most impoverished regions in Europe when we moved here, and was picking up European Union grants and subsidies left, right and centre in an effort to improve, but that is another blog etc. Our business couldn't take the strain of the move, being swindled, bloody Maggie Thatcher and an increasingly difficult 5yr old child who didn't seem to need sleep or food and whose whole vocabulary consisted of one word.. "No". We inevitably went under.

Because Sarah had special needs we had plenty of help from Social Services, As far as children's services go, I cannot fault the Rhondda Cynon Taff council. They have been brilliant with Sarah all through her school life, from 5 right up to 18, 1st couple of years in an observation unit in an ordinary primary school, and then in the local and quite excellent Maesgwyn Special School, which I can never praise highly enough for the care they took over Sarah's education. Sarah managed two years in a special unit within the local college before education was over and Adult services took over, transition is tricky and needs to be handled with care, but that is another blog, actually it is more than a blog, its a hand book, I'll come back to it sometime.

I digress, all the while the kids are at school and because of Sarah's special needs, as a family we were well served by Social Services, and were regularly visited by the welfare benefits department to make sure we were receiving as much help as was available, financial and otherwise. But the girls are no longer children. Hannah has sensibly stayed on in Bath after University, and Sarah will be 24 in December, and as far as we are concerned as a family, looking after Sarah now is harder and more expensive than it was when she was a child, she still doesn't always sleep, and now we have to stop her from eating as opposed to encouraging her to eat, in fact, you could describe her as high maintenance. She is very expensive to run! Sarah is our work, we spend hours arranging things for her, fixing the things she breaks because we cannot afford to replace stuff as frequently as we would like. Sarah is a bit clumsy, so stuff gets dropped or just not used properly and consequently just breaks down, CD's and CD players are doomed as soon as they enter her room, we tend to make a lot of copies and I really have lost count of the number of CD players she has destroyed, three so far this year. Ebay has been a godsend!

So, getting back to welfare benefits, Sarah gets what is due to her, she will never be able to work for a living and unless a miracle happens, she will always be dependent upon the state. I hate that though but there is nothing I can do about it. So while we can, we do what we can for her, and in the process of caring for Sarah for all these years we have put our own lives aside, after all this time both myself and my husband are probably unemployable, we are both in our late 50s, both beginning to feel worn out physically and mentally by the consequences of Sarah's severe autism. We get income support at £77.35 per week to make up the shortfall in the legal minimum amount needed for two people to live each week, the other part being carers allowance of £53.10 per week. We can manage on that, we don't run a car, we never go out as a couple for a meal or to the pub and I honestly cannot remember the last holiday we had, but it was more than 10 years ago. But we are on duty every minute that Sarah is with us. granted she is at the day centre three to four days a week, that amounts to a maximum of 28 hours a week at the day centre, she also gets another 6 hours out with social care workers, but that doesn't always happen.

Lets do the sums, there are 168 hours in a week, up to 34 of these hours Sarah is being cared for by social services so that leaves 134 hours for us to care for her. That means the carers allowance is being paid at a rate of £o.39 per hour (for the two of us). Under the new fairer charging system for social care for those living at home, the local council is currently expecting Sarah to pay £75.00 per week for those 34 hours, very reasonable at 2.20 per hour (if she were to use all those hours up!), trouble is, once she has paid her £75.00 per week as a household with all the usual bills to pay, we are going to have serious problems making ends meet. Of necessity, Sarah pays her share.

You don't hear much about the poverty trap these days, but let me tell you, down here at the bottom end of the welfare benefit handouts, we are in a nasty sharp poverty trap. We have no savings, we have a mortgage to pay, we still have to pay all the usual bills, council tax, water, gas and electric, once these are paid and the other little essentials like telephone, TV, broadband, food etc., so not much left at the end of the month to put towards setting up another business, which is what we would ideally do, because we have to consider what the hell we are going to do if say, the washing machine dies, or, heaven forbid, Sarah's TV finally throws in the towel, and she'll be needing a new bed soon and mattress, these things don't come cheap and we cannot afford them.

I no longer laugh at the make do and mend policy of my parents time, and how I regret the extravagances of our pre children days. In the 70's I worked hard and played hard, I've got nothing to show for it, just memories and the knowledge of the experience, looking back though, I realize now that I did work very hard indeed, almost always a seven day week, but working for yourself meant that if you wanted time off you could arrange it properly and have really good and worthwhile time off. The only difference now is I work seven days a week for 39p an hour, have to claim welfare benefits to get by and can no longer afford time off.

That it, rant over and with any luck, when the postal strike is over I will get a letter from the council telling me that they got it wrong and by using the calculations they identified in their own guidelines to fairer charging, they will see that they should only be charging Sarah £2.50 a week at the most and that £75.00 is pushing their luck! If they insist on that amount I shall be asking for a similar amount (£2.20 an hour) which would bring in £294.80 a week before tax and insurance of course, that's about £15 grand a year. That would do us, it is twice as much as we get at the moment if you include income support, and maybe we could have some recognition of how bloody hard we work for the pittance they seem to think we deserve. Not much chance of that happening! It would cost social services a whole lot more if we decided we could no longer cope and we're handing over responsibility to them, but of course they know that isn't going to happen either.

I'm leaving it there, rant really is over, as far as writing it down goes, it will continue to rumble about in my head for some time though. I'm going to shut up now....

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.

Last Week Was Tricky, This Week Is Going The Same Way...

Oh yes, last week was tricky, Sarah was on the edge all week, mainly due to her service review meeting the Thursday before last. The idea is good, every six months we look at the services Sarah receives and review them. The services she receives were set up four or five years ago now and have never really changed. Efforts are made to tinker with the edges, but nothing of any importance is ever changed, there is no need. Improvements would cost money, there is no money so there is no point in wasting time asking for improvements when you know it is all talk and will come to nothing, especially now that Sarah has to attend the meetings. She listens as we talk about the stuff she does, says yes to everything and retains information about who was there, some of what they said and of course, because it is her speciality, all the dates and times that may be mentioned.

Times and dates are important to Sarah, they form patterns and are part of the structure of her life, numbers in the form of time and dates are constant, they roll around each day or week or month or year, and Sarah has a phenomenal memory, she knows what happened at a time or date and watches out for it happening again, it is all tied up with her routines. Most of her challenging behaviour has its roots in a routine break. She still talks about the loss of the 9.00 o'clock news on BBC1, it was an important part of her evening routine and now it has gone, the fact that she still talks about it is an indicator of how important all this is to her.

This meeting has been called at short notice because of various problems with annual leave, sick leave and maternity leave, so 'can we have the meeting tomorrow?' In a normal week for Sarah she would not be in the day centre on a Thursday. I was told someone had spoken to Sarah and she seemed OK with it, so I said yes. I don't know why it had to be pulled forward, it could have been delayed, it would have been easier all round if it had been, although I'm saying that in retrospect. Sarah was agitated when she got in on Wednesday and by means of bribery (sausage bap in Tesco.) I managed to get her to agree to come with me to the meeting. It wasn't straight forward, believe me.

Attending the meeting are all the people who have input into Sarah's life, so that is her Care Manager, a very nice lady who's background is in nursing, she does all the paper work and telephoning as far as I can tell, she does what a social worker would do, but apparently we don't need one of those. Actually, we do but there are not enough to go around. Then Sarah's team manager in the day centre and the care assistant designated to her, they are two lovely, down to earth, over stretched and over worked ladies. The other regular attendee is a representative of the company that sub-contract from the council as carers, in Sarah's case, someone to take her out of 4 hours on a Thursday afternoon to do something interesting. Worth noting at this point that none of these people have any real knowledge of autism and how to deal with it, but they do have a good basic grounding on dealing with people with learning difficulties, so we're half way there. I should also say it this point that they are all aware of Sarah ability with dates and times, but tend to treat it as a little quirk which is quite handy when you want to learn someones age or be reminded of something. They do not understand how important to Sarah all these little fact are and that they are the fabric of her universe. There are a few others who should be there, are always invited but never turn up and have even stopped sending apologies. The person who is called in to address the more obvious autism problems is the community nurse, another lovely lady who expertise in dealing with autism is more to do with the fact that she has an autistic son than any formal training, but I don't let on that I know that because it would compromise her professional position, She understands the importance of time and dates to Sarah. Sarah has to be there because she is the one receiving the services, and then there is me, the amateur, no proper training, just her mother. I'm there to speak for Sarah.

So we get down to business, yes there have been few problems, there always are, this time to do with staff members who are leaving, moving, retiring or whatever, pretty basic stuff which can be dealt with by just remembering to keep her informed, if she is told what is going on, she's fine, she works it out. She isn't stupid, she's autistic, they tend to forget that. But here comes the bit that has caused Sarah and consequently me and Bill, and the dog, come to that, getting on for two weeks of anguish. The lady from the outside contractors announces that Sarah is down for six hours a week from them... Sarah, her care manager and I are are a bit surprised by this, she currently gets four and she rarely uses all four because if the weather is not up to much for instance, there is not a lot to do in and around Aberdare, so her and her carer go over to Merthyr and wander around Matalan for an hour and then have a MacDonald's and come home, and believe me, if I could stop this I would!! But, this has become one of her routines and it's what she says she wants, so that is what happens. So now we've got another two hours to fill, and we sort of have to because the system works on a use it or loose it basis, don't really want to loose it but would love to be able to do something meaningful with it. So I tentatively suggest we put those two hours to work one evening, and maybe she could go swimming, or go to a gym (and work off the bloody MacDonald's they've been feeding her). Oh how well this was received! The mother had come up with a good idea, everyone agreed it would be a good idea, and Sarah is very enthusiastic, we establish that there is a suitable person available to take Sarah out on a Tuesday evening from 5.00 till 7.00 or there abouts, and the lady who takes her out on a Thursday afternoon will come along with the new carer and introduce her to Sarah and all this will happen on 29th September at 5.00pm. Meeting finished soon after, Sarah had her sausage bap in Tesco and we went home. She went out with her Thursday carer as usual...

Next day she didn't want to go to the day centre, already been there four times that week, I conceded. From a Sarah perspective, it made perfect sense, she's bored stiff there most of the time anyway. We had an uncomfortable weekend, we were all a bit snuffly, not a cold, just sniffles, Sarah stayed home on Monday. Not a good start to the week, Tuesday and Wednesday went alright, no real issues, Thursday could have been better since we didn't get any positive news from her afternoon mooch around the shops carer about the new Tuesday evening carer she was supposed to be introducing to Sarah at 5.00pm on what I am now calling today. In fact she new nothing about it and could not imagine who they could possibly get to do it. Oh joy! we are in for a rocky few days. Sarah's cooperation levels dropped to the minimum and we had a weekend of almost total non-cooperation resulting in the last resort action of sanctions, which causes us more distress than it does Sarah. Anyway, sanctions in place she went off to the day centre yesterday secure in the knowledge that I would be trying to find out what was happening.

9.00am sees me on the phone to the sub-contract carers, they knew nothing about it, and the representative who was at the meeting where it was all agreed is on holiday. Apparently there was nobody else available to speak to.. Hmmm. I'm not surprised, I've had misgivings about this lot since they first appeared on the scene, but there you go, they are the professionals, I'm not. As a point of interest here, as the telephone conversation progressed it became apparent that they didn't even know that Sarah was severely autistic, but there you go, as I say, they are the professionals, not me. Phoned Care manager, Not available for the rest of the day, can I leave a message and she'll call back, and no, there is nobody else available to speak to.. Hmmm. Sarah is not best pleased with the lack of progress when she gets home, but copes well. As the evening goes by she becomes a little more agitated by the situation but copes. She hardly slept last night and focused very hard on the fact that in the meeting she was given a date and a time where something she was looking forward to was going to happen, in effect, a promise was made, and that promise was broken.

This morning she is resigned to the fact that she is not going out this evening, she is not best pleased. She had set up the new structure of her week, based on what she heard and believed at that meeting, and has now got to rearrange her mind to accommodate an unknown. I was the only person in that meeting making notes of times and dates because I know she is autistic and I arrange things taking that into account. I will say it again, she is not stupid, she is autistic. These professionals forgot about the autism, the boxes are ticked, problems can be smoothed out later, but for Sarah these problems are all encompassing, they touch every aspect of her life, but what do I know, I'm just her mother, we've never been apart for more than a week in nearly 24 years, but of course, I've no training in disability and caring. I am not a professional, I know nothing.

At 10.30 this morning I had a phone call from her care manager, saying she was just put the finishing touches to her care plan and copies would be sent to the appropriate people, which includes the sub-contract carers, so that we could make the extra 2 hours a reality, so, only a week late but do-able, and could I just remind her of the day and and time we had put in place for the extra 2 hours! Good job I took notes! Ha! even if I hadn't taken notes Sarah was there and she knew what was said.

Now here comes the spooky bit. The postman knocked on the door about 5 mins after I put the phone down, 120 crocus bulbs, vast amounts of junk mail and an envelope addressed to Sarah from the Community Support Team. It was a letter from her care manager with a copy of her new care plan, signed by us all, with all the details of the extra 2 hours with days and times identified. It is dated 25th September. Now I know Dr Who is associated with this area now, what with Torchwood being in Cardiff Bay and all, but five minutes from putting down the phone to the postman knocking at the door with the document under discussion is going some! I know I keep saying Sarah isn't stupid she's autistic, well I'm not stupid either, in fact I know I've had more education than anyone else in that bloody meeting, but I'm the mother, I don't even get a copy of the care plan, I haven't had the right training. I mean, I've only been looking after her for the last 23 years, how could I possibly know what Sarah needs or wants.

That's it, up to date, I am bloody furious. I am the only person at that meeting who has to deal directly with the consequences of the failures, which now seem to be inevitable, of ill prepared discussion, by people who with the best will in the world, do not understand how Sarah functions and do not realise that she understands what is being said, her problem is being unable to respond in a way that they will understand. After 23 years I know what she is getting at, I can read her eyes and her body language, that is how she communicates best. Not one of the other people in that room knew how to look at her without repeating themselves, she was responding, they just don't see it. But what do I know, I'm just her mother....

Rant over... next post will be on the niceties of planting crocuses or the strange behaviour of nuthatches or what the dog did or something...