Dealing With The Day

Carers Rights Day, Friday 2nd December 2011....

2011-12-02T23:30:00.000Z

Somewhat ironically, the word Celebration appeared in all the publicity to attract the attention of carers living in Rhondda Cynon Taff to Carers Rights Day.

It read 'Carers Rights Day Celebration Friday 2nd December 2011'

The agenda for the day was what you would expect. Tea, coffee and biscuits, an update on the progress of the Carers Strategy which appears to be going well, then some consultation from the department that buys in services.. they got a rough ride.

A break for tea, coffee and more biscuits followed by the big issue.. the Welfare Right Presentation, well I don't have to go into detail here, we all know what is being planned by this current disgraceful government, well I thought we all knew, but surprisingly there were some who did not know how welfare reform Tory style is going to effect them. Wales is historically 'left-wing' (a term which I notice our 'leader' is trying to turn into an insult!) full of tight communities all looking out for one another, with very long memories. Margaret Thatcher and the Thames Valley police remain high on the unforgiven list. But even in the most left-wing of communities there are those who are not politicised and go along with whatever the gutter press wants to peddle as truth. Of the 70 or more people that were in the room today which included council and social services staff as well as carers, my guess would be that half of them would happily say they were left-wing, I noticed that the four sitting councillors, three retired councillors, one AM and one MP that that were among us were all Labour. There was also a small group who always have something to say about welfare and benefits and who gets them and who shouldn't get them and usually quote the Daily Mail as the source of their extensive knowledge.

I was a little surprised when part way through the presentation of the realities of what was about to happen to our Welfare State, I noticed a couple from that group, probably in their 50's looking at each other with undisguised shock on their faces. She told me later over lunch that she had not considered herself subject to any of the changes which are soon to happen and was finding the reality of their situation truly frightening. Suddenly this nice couple with nice middle class sensibilities, who have worked hard all their lives until a disability meant they had to rearrange their lives and make use of the welfare state they had been complaining about paying into for so long, are going to be subject to the same disregard as the 'ne'er do wells' they assumed the cuts were being aimed at. We didn't hear much from that group after the Welfare Rights presentation, several of them were visibly shocked by what they had heard which has left me wondering how many more people are there out there with no idea of what is going to happen come next April if we don't all jump up and down and make a stink about the nonsense which this arrogant and ignorant government is hell bent on perusing.

So, I hope that 'Celebrations' of Carers Rights Day were held everywhere today and were as well attended as the one I was at in the splendid Rhondda Heritage Park Hotel in Trehafod. It is all to easy to become complacent and think that swingeing cuts in benefits will somehow not affect you, but they will and lives will be lost. As we went through the changes and implications facing us a fellow carer I was sitting with was close to tears at the prospect of having to allow his wife to undergo reassessments and the possible loss of much needed benefits by failing to score enough points on a somewhat skewed points system aimed at proving eligibility for work. Yes, times are hard, but penalising the poorest and weakest is not a civilized way of dealing with financial problems created by the richest and strongest.

Everything Was Going So Well......

2011-07-29T14:28:00.002+01:00

If you have visited here before you might remember that our autistic daughter Sarah, is apt to be a little volatile when faced with routine changes. When those routine changes involve transport to and from the day centre that volatility is apt to become something a touch more volcanic. As of a Tuesday last week the bus has been arriving an hour late by Sarah standards. A chance meeting with a member of staff from the day centre while we were in Asda the following evening shed some light on the bus problem, and please don't ask what we were doing in Asda on a Wednesday evening, it happens almost every week and deserves a post all to itself which may or may not materialise depending on the mood I'm in.

Apparently some pen pusher behind some desk somewhere has decided there cannot possibly be staff taking buses out from the day centre as early as 7:30am and the new proclamation has been made saying 'Thou shalt not drive the minibus out of the gates of the day centre before 8:45am and if thou doest the wrath of god will fall upon thee followed by weeping, wailing, rending of garments and gnashing of teeth'

A little background information is probably required.. the annually contracted transport supplied by Rhondda Cynon Taff to take service users to and from the day centres across the area started well last September, new contractors seen by most as pretty good compared to the previous bunch of cowboys, bearing in mind the council always chooses the cheapest contract. Sadly the good start quickly degenerated into the usual erratic timing, bizarre routes and untrained escorts with little or no idea of what was expected of them. Several of the service users found all this more than a little upsetting and the day centre decided that they may as well use their own mini buses for those clients most affected by the contractors inconsistencies.

Because of the sheer size of the catchment area for the day centre, never mind the terrain and the remoteness of some communities, this means an early start to get everyone in by 9:00am. Nobody had a problem with this, staff hours adjusted accordingly and from my point of view things could not have been better. Round about 8:00am the bus would arrive and Sarah would be ready and waiting because she was going with people who she likes and trusts and who understand her need for routine and no surprises.

Everything was going so well and then this twerp sitting behind his desk on the other side of the mountain who has probably never visited the upper reaches of the Cynon Valley pokes his nose in and now we are in turmoil again. With no warning or time for preparation things have got to change, so not surprisingly Sarah's volatile volcanicity has gone ballistic. We have had a week and a half of weeping and wailing, only one garment got 'rended' but gnashing of the teeth has been evident accompanied by ear splitting screams and flying fists.. so far only one fist has landed, my deflection skills are well honed. Nothing has been broken yet, which is pretty good going but the poor old dog is keeping a very low profile and has taken to slinking around corners very gingerly and hurrying across open spaces with ears and tail very low. Husband behaving in a similar way to dog, although his verbal skills are a great help. He can make Sarah laugh which gives us a few minutes to regroup ready for the next onslaught when she forgets what she is laughing about and gets back to the business of making her discomfort over the transport known to anybody within hearing distance.

We all know times are hard and services are being cut back, but this particular proclamation is not going to make any difference to the social services finances, all it is doing is causing disruption to staff, service users and carers alike by messing up schedules and time tables and confusing the hell out of anyone on or near the autistic spectrum. As this change coincides with the schools breaking up for the summer holiday that is the excuse I am using as reason the for the disruption which gives us six weeks grace in which time she will hopefully be used to a new routine.

It does effect the finances of a carer that I am aware of though. She lives alone with her daughter who has CP, is wheelchair bound and without speech. This lady has a job which starts at 9:00am, when her daughter was picked up 8:15am this was fine, plenty of time to catch a bus to work . Now her daughter is being picked up at 9:15am which means she cannot get to work much before 10:00am. She loses an hour in the morning and it looks as if her chances of keeping the job are further threatened by the uncertainty of the return home times. Didn't mention the change in coming home times did I, well Sarah used to get home at about 4:00pm, now it can be as early as 2:00pm but averaging at about 3:00pm. The proclamation also stated that buses must be back inside the day centre gates by 4:45pm. This irritating little pen pusher has just increased my caring hours by eight hours a week, and has made it extremely difficult for another carer to carry on working.

I wonder how he would feel if a bigger pen pusher told him he'd had eight hours cut from his working week starting now with no consultation, after all, that is a whole days wage. Financially it makes no difference to me, I get the £55.55 a week carers allowance for the approximately 144 hours of care I now deliver per week to my daughter, with our income support duly reduced by that amount per week to make sure we don't creep to far above the poverty line.. I know my place.

The most important point I am struggling to make here is that these changes were made with no warning, no consultation and apparently no good reason. Things have calmed down in our house now, but we have had at least ten days of upset and upheaval which could have been avoided if we had been given a decent amount of time to prepare Sarah for the imminent change and I'm sure that goes for other carers too, we have to make alternative arrangement for care if we cannot be in the right place at the right time, we need to know in advance if times are changing. The same goes for the staff at the day centre who are having to deal with multiple service users all in a state over routine changes and the uncertainties that go with it. Most importantly the service users themselves have enough challenges in a day without having to worry about who will be on the bus, what time the bus will leave or arrive and who will be there to meet them, sudden changes may not bother your average administrator. but they have a profound effect on your average service user and that just isn't fair. Awareness of the consequences of changes when you are dealing with service users must be paramount in the minds of administrators within social services, surely?

Thats it, rant over until the next time, 2:00pm is fast approaching and you can bet your life if I'm not prepared Sarah'll be home expecting everything to be in order and I still haven't located the album artwork for Amy Winehouse's (RIP) album 'Back to Black' which seems to have gone missing while I was uploading it to Sarah's iTunes and shuffle over the weekend. Everything has to be in order for her in iTunes and every track must have it's artwork, and if it doesn't there will be weeping and wailing, a rending of garments and a gnashing of teeth and I don't feel like dealing with that today....

It's Carers Week. I'd Better Say Something About It....

2011-06-13T23:21:00.000+01:00

Carers Week 13th – 19th June 2011

Carers week already, it crept up on me this year. I know I've been seeing references to it all over the place but after a year of being vilified in the press about being a 'benefit scrounger' it is easy to forget the positives. So today I finally got my head around it, made a few phone calls and got my week organised.

A sort of bonus for this week is that Sarah has a few days in respite so I don't need to be home to meet and greet in the afternoon or worry about the damage the husband and daughter 'home alone' combo might do to the house and any trauma inflicted on the dog in my absence.

So tomorrow sees the start of a week of "activities for carers living in Rhondda Cynon Taff designed to give a mixture of opportunities for you to access information and advice, to learn from other carers experiences and to have a little fun!" And the first event is.....

'Trouble Shooting drop-in session. Access support, information and advice about wills, benefits, debt, and getting back to work with support.'

Very nice, much needed I'm sure, but I'm having a 'week off', better known as respite, and since all the above has a tendency to depress me I'm steering clear of that lot, and anyway, I got a better offer for lunch from the Older Carers Support Worker. I turned 60 this year, I'm officially older, I got a bus pass! No pension yet but they moved the goal posts on that one. Never been one to refuse a free lunch so that's Tuesday sorted out.

There's nothing doing on Wednesday, so I suspect that will be the day I have to go to Aberdare and Asda and pull some weeds out of the garden. Thursday could be interesting.....

'Carers Celebration and Information event in Hawthorn Leisure Centre - bring your gym kit! A chance to find out about support available for carers locally and your opportunity to join the Carers Strategy Implementation Group meeting, join in a taster adult education session or a relaxation class, have a manicure and join us for a buffet lunch.'

Bring your Gym kit!?!?!? I think not. Observing and commenting on the Carers Strategy Implementation group meeting seems much more appealing and most probably pain free. Apparently there will be floral arrangement and relaxation classes available too. I opted for floral arrangement a couple of years ago, the relaxation class followed by a session with a hypnotherapist after the floral disarray were a godsend. Hopefully the Strategy meeting will take us right up to lunch and I can avoid getting involved with the 'gym inductions' and the 'free taster Zumba Gold (designed for the over 50's)' and be home in time for tea. Friday is the most interesting day for me, I'm involved with this already so really I should be there.....

'Carers Sharing Session. Find out how you can be a part of recruiting and training the next generation of social workers, nurses and social care staff. Come and hear other carers stories and meet the staff you may be working with over lunch.'

These sessions are great. They are a mixture of carers, service users and staff who provide an overview of their experiences of involvement and the benefits they have gained or seen, followed by a chance for others to get involved. In my experience much is gained on both sides, service providers are often unaware of problems carers and service users may have beyond the direct professional involvement, carers and service users don't always understand the problems within social services, and of course carers and service users don't always agree! These get togethers are always eye openers on all sides and the knowledge gained is invaluable. Which brings us to Saturday.....

'Carers Day Out! An action packed activity day for carers and cared for in Dare Valley Country Park. Try out Canoeing, have a guided walk or learn some circus skills - suitable for carers and cared for of all ages and abilities.'

Now I submitted myself to this torture last year, the 'gentle warm up' almost killed me, and if you think I'm going to break the habit of a life time, which is the avoidance of canoes under all circumstances, you've got another think coming! I already know how to juggle and how to spin plates, both activities quite pointless and a bit boring after a while. The only other circus skills I can think of are unicycling, stilt walking, tightrope walking and the flying trapeze so I think the wisest move would be total avoidance of the beautiful Dare Valley Country Park on Saturday. A little bit of gardening if the weather allows seems quite appealing.

So that's my carers week sorted out, three lunches and plenty of opportunities to put the world to rights, see a few old faces, catch up with the gossip, share some moans about the ConDem government and their cuts, then share some more moans about all the stuff that's gone wrong with social services or day care or health or the council or best of all, the new neighbours weird behavior or that obnoxious child from up the road. You know the stuff I mean, the important stuff that is really none of your business but certain to take your mind off of caring and benefit cuts!

If you are a carer, have a good Carers Week, make the most of it and spread the word. If you're not a carer then think yourself lucky, spare us a thought and remember that becoming a carer can happen to anybody at any time and it is not something you choose to be it is something you have to be and believe me, you will get precious little thanks or recognition for it. Understanding and a little bit of give and take can go a long way towards making a carers life easier, we're just ordinary people who have to deal with and be responsible for someone else's life as well as our own for as long as it takes.

That's all, I could go on forever about the difficulties but that would be boring for me as well as you! I could also get all sentimental about the joy of giving and the sense of worth and achievement you get from caring, but to be honest, that goes against the grain and would be a load of sentimental twaddle anyway, so if you got this far, well done! Thanks for sticking with it to the end.........

It's All Over The News So I'd Better Talk About It....

2011-06-01T21:25:00.000+01:00

That's right, Panorama on the BBC last night. I didn't watch it... I watched and read the comments and disbelief washing all over Twitter. I suppose it's a reflection of the people I follow, but at one point 90% of the tweets I was seeing were something to do with care homes and care workers. Of course all were expressing shock and sorrow that such an appalling thing could be going on.

You won't be surprised to hear that I have a lot to say on the whole subject of care homes and care workers and in particular, how they care for people with autism and learning disabilities. Our daughter lives with us at home and we know how difficult she can be, but that goes without saying, when she is not staying at home she stays in a small respite house, one of half a dozen or so run and owned by the local authority which take a maximum of four clients at any one time for a few nights of respite care each month.

They are almost fully booked for the foreseeable future, and sometimes stays have to be cancelled because they have to use the respite beds for emergencies. Carers get sick too, particularly the elderly ones, and if they have to go into hospital or even worse, pass away, places have to be found quickly for the upset and confused sons or daughters in reasonably familiar and homely surroundings with people they know and trust. These are ordinary houses in ordinary streets and fortunately for us, our local authority uses this model when moving people who need constant care and attention out of the family home and into supported living. Ideally three compatible clients and of course care assistants or workers who are aware of the difficulties these people are facing and are trained and confident enough to deal with them. Now and again things go wrong, but on the whole it works and most people are happy with the way it works. The thought of any of the people I know living in these houses being placed in a hospital setting for care is absolutely awful.

Of course, I do not know all the details of the dreadful happenings in Bristol but the fact that it is being described as a 'private hospital' speaks volumes to me. I have no experience of private hospitals as such, but I do have a little experience of the privately run care homes for the elderly, my own mother was in one briefly here in Wales and my husbands grandmother was in one in London, and her daughter, my husbands aunt now in her late 90's is in one also in London. In all three cases, care was and is only just achieved and individual needs a nuisance to a mainly foreign staff with very little understanding of the English language, here I should say that some of them were and are angels in a very difficult place, albeit scrupulously clean and ordered and run with military precision! I won't bore you with the bedsores, broken leg, disappearing chocolates, disappearing shoes, disappearing teeth, dreadful food and so on and so on. It was and is the indifference that bothers me.

We all know that caring is an expensive business, £20,000 to £30,000 per annum for the elderly, give or take ten grand either way, finding a figure for the cost of care for a person with learning difficulties, a disability, autism or mental health problems is more difficult, but at the bare minimum it seems to be more than three times the cost for the elderly.

Pause for thought and a flight into fantasy... £100.000 per annum... I could pay off the mortgage, get the bathroom sorted out, do a few repairs around the place, even have a little holiday... all in one year!

Back to reality, you can see why the private care home for the elderly businesses expanded into the care for the disabled business! Sadly I don't think they realised that caring for the disabled is a completely different kettle of fish. We have private care providers who are supposed to fill the gaps social services can't cater for.. they are a disaster, they send out domiciliary care workers to people who don't know them and are expecting to be taken out if only to walk around the shops and have a cup of tea. I won't bore you with the extended telephone debacle which took place between me and one such care provider over five days a couple of weeks ago which resulted in complaints being made and apologies being received and over a week of anxiety and upset for our daughter which spilled over as challenging behaviors at home and at the Day Centre. It was a very difficult couple of weeks which could have been avoided if the care provider had got its act together and delivered the correct training for their staff, and I mean all of their staff including managers and the poor girl in the office, who has yet to master the art of delivering bullshit down the telephone in a convincing manner!

When it comes to providing services of any sort to service users in their own home, in a shared supported living home, in a 'private hospital', in fact, wherever a person with learning difficulties, autism, CP, Downs, mental health problems or whatever spends most of their time, they and their families should be able to expect those services to be fit for purpose. Fully trained staff who treat their clients with the respect they deserve.

It is a sad reflection of our society that it takes a current affairs television programme to make the 'authorities' take notice, I suppose we have to be thankful there wasn't something really interesting on another channel and enough people did watch and comment to make it front page news this morning. Eminent people, experts, professors, cabinet ministers and the like are being wheeled out to make comment and people have been arrested. For the first time in quite a long while now I'm able to say I do not sense the usual indifference.

Some of us have been aware of instances of bad practice taking place but have said or done nothing, not from indifference but from the knowledge that although a complaint will be listened to sympathetically and appear to have been addressed it will only have been brushed under the carpet, usually because dealing with the problem will cost money. Most annoyingly from the parent carer point of view, is the innate superiority that some (and thankfully fewer as time passes) care professionals display when you question aspects of what is happening with your son or daughter, they obviously haven't run across the excellent Expert Patient programme which is being made available to parent carers in many regions now!

At the very least, many more people will now be aware of instances of abuse and malpractice within social care, possibly even newly aware that there is such a thing as social care for the people some members of the press have been insulting with the label 'benefit scroungers' in recent months. Awareness is a good thing, we need more of it! So thank you to the brave whistle blower for persevering and thank you BBC for the broadcast. Now lets hope the government gives this more than just lip service and sees the danger of privatisation and the lack of accountability inherent within it, especially when you are dealing with societies most vulnerable members, many of whom do not have a voice.

A Little Ramble Around An Abstract Concept...(or coming to terms with the inevitable)...

2011-04-14T09:57:00.000+01:00

Last month, in March, I had a birthday. It was one of those 'significant' birthdays with a 0 at the end of it. Wow, the tyranny of numbers. An abstract concept used to measure the passing of time which is also, arguably, an abstract concept. We hang a lot of importance on the 0's and the 5's and of course to be contrary and human, we have disregarded 20 and made a mega fuss over 21, only now we've shifted that celebration 3 years earlier and 18 is the liberating number.

I recall in the dim distant past, my own 21st, well no, to be more accurate, I don't recall it at all, It kind of past me by. I had been traveling and had arrived back in London to find a small package from my mother which contained a 21st birthday card with profound apologies for forgetting such an important event but they (her and my dad) had been away for a 'spring break' and had forgotten all about it. Taped to the inside of the card was a little silver St. Christopher pendant on a silver chain and wrapped in tissue paper. The irony of receiving the St Christopher after what was to be the last bit of extensive travel I would be doing for a very long time was not lost on me, then or now!

That was in 1972, and what a grim year it was Edward Heath was Prime Minister, the miners were on strike and there was a State of Emergency declared. We had Bloody Sunday in Derry. Watergate was getting underway in Washington and there was the massacre at the olympics in Munich. In fact, terrorism was taking hold all round, with hijacking and bomb scares, real and imagined, being reported everyday. It was a pretty bad year for earthquakes too... you can see where I'm going can't you?

Yes, 39 years later we're having a pretty grim year again, but what goes around comes around, things will improve eventually, governments change... but that is not the subject in hand today, back to the numbers... Thus far I've been manageing to keep the exact total of my years to myself. Not an easy thing to do with a calendar obsessed autistic daughter, she has been reminding me and anyone else within earshot about it since Christmas. My mother in law saw fit to send me a rather gaudy card with a large 60 emblazoned on it in red and gold, I've often questioned her taste over the years. The other daughter, bless her, chose to send me a bunch of sunflowers and an invite to go up to London and visit soon, just me, so we can hit the galleries and museums. Absolutely no mention of birthdays or numbers.

A couple of years ago I got a letter from the Department of Work and Pensions telling me I would not be able to claim my retirement pension until I am 62. I was expecting that, no big surprise, in fact, it is to be expected that the goal posts get moved just as I'm within shooting distance, it's been that way for the last 25 years! Anyway, I'm a carer, I'm not sure retirement is an option. So here I am trying desperately to ignore the number and what I perceive as the stigma which goes with now being an 'over 60' woman. There is an assumption that all I could possibly be interested in is Bingo and soap operas. Well let me tell you, I barely watch the TV at all and I've never played bingo in my life! I admit to look at me now you wouldn't imagine that more than 40 years ago I had hit and survived the hippie trail to Katmandu, been chased by a police horse in Grosvenor Square and taken a lot more risks than I should have. I'm not sure I believed I would reach the age of 21. But I did, and I started my first business that year. Small but profitable. But I digress, I am really talking about admitting to being 60.

Oh, but that is not so easy, in my head I'm still at the Isle of Wight festival in 1969, that was the year Bob Dylan and the Band played there, the weather was beautiful and I fell in love, not with the right person of course, but that didn't really matter. A year later I was in love with someone else sitting in the pouring rain on a golf course watching Jimi Hendrix play his last gig at the 1970 Isle of Wight Festival. None of that is relevant, it's just a bunch of memories, but memories are all bound up with experience, and these are what our minds are made of. I suppose what I am trying to say is, just as physically you are what you eat, mentally you are what you remember, what you have experienced.

So how do I come to terms with this horrific number? Well I'm going back to where I started. An abstract concept for measuring time, they are just numbers and if I choose to I can ignore them. We all know you can't turn back time and we are all moving into the unknown, the future is a mystery, we can only guess but we can't really know what is going to happen next. To help us move forward into the unknown we rely on experience and memory, it's why we fall in love with the wrong people and do reckless and dangerous things when we are young, you live and learn. Well that's the theory, and we all know that theory and practice don't always go hand in hand. For example, by now I should be making less mistakes!

Acceptance looks like the only way forward, damn it! So look for the advantages.. need to find the spectacles first... right... still drawing a blank. Here's one, nobody is going to expect me to be keeping up with fashion, so I can wear what I like, within reason. Oh and here is the best one, the over 60s bus pass. Free rides to Asda, and if I feel like getting on the bus at the bottom of the hill just to get to the top of the hill, the driver can't complain that he doesn't have a fare for only going 2 stops! Priceless....

I'm Cold, So Here's a Little Story About a Summers Night in 1982

2010-12-20T22:48:00.000Z

Let me take you back to the summer of 1982, an average sort of british summer, raging hot days mixed up with bouts of torrential rain. Sarah was not born until December 1985, we had no children, we had no encumbrances, we were still young...ish, and we were trying to make a living selling our wares at festivals and any other event we could hustle our way into.

Thats the background, now for the specifics... the date was most likely 31st July, it may have been the day before, but that doesn't really matter. The place was Port Elliot, a stately home in St Germans in Cornwall. The event was The Elephant Fayre, held in the grounds of said stately home. Headlining were Siouxie and the Banshees, John Cooper Clarke and the Albion Band but that is irrelevant. We were selling wooden badges and mobiles made by our own fair hands with designs relating to rainbows, clouds and raindrops and were trading under the name of Heavens Above.

Here, check out the prices!

Thats enough detail, I'm sure you've got the picture, just another early 80's music/arts festival attended by the usual suspects. So we roll up there in our old Morris van, set out our stall and pitch our tent ready for a weekend of hopefully good trade. Port Elliot is a lovely spot on the River Tiddy...which is tidal, and we are set up on a slightly raised piece of ground on the edge of what was called the 'events area' along with quite a few other diverse traders. We were there for four days and we remember it as being busy because we were pretty much tied to the stall and didn't get about and see too much of the festival beyond our little space, not that you'd want to since when the tide came in the events area tended to get a bit damper than was comfortable and it was apt to get an ethereal sort of mist wafting over it from the river at dawn and dusk.

On the night that this story is about it was particularly damp probably because it had been raining most of the previous day. We had closed the stall down and gone to find food and drink and then settled down for the night in our tent which as I said was pitched on a bit of higher ground, next to a path which lead up to the main camping area but close to stall and van. Every good festival in those days was frequented by one chapter of another of Hells Angels, a few yards up the path from us were the Windsor Chapter with quite a nice bonfire lighting up the night. All in all, it was a quiet, uneventful night, until at about 3.00am when we heard a voice coming from the direction of the events area, at first a plaintive little cry of 'I'm cold' repeated a few times. Fair to say, 3.00am in the morning in a damp field in the mist at the end of July is probably going to feel a bit chilly. Well this twerp really wanted us to know about it, by 4.00am there were a few of us beginning to get the message loud and clear since he turned up the volume and the frequency of his mantra. He was by now getting a few muted responses from various disgruntled campers. Then we heard the distinct sound of a tent being unzipped and the sounds of rummaging followed by heavy booted footsteps stomping past our tent accompanied by grumbling along the lines of 'So you're cold are you.'

Spurred on by the prospect of an event in the 'events area' we ventured outside of our tent and into the mist. We couldn't see anything very clearly, it was still quite dark and the mist was pretty thick, but we could see a figure making it's way down toward the sound of the cold complainer and hear the heavy biker booted footsteps accompanied by the sloshing sound of fluid in a container. There is no denying it was cold, we got back into the tent. The cries of 'I'm cold' were still hanging in the air, accompanied by a lot of grumbly mutterings and the sound of fluid splashing on the ground. Shortly after that we became aware of a rather bright and flickery glow emanating from the events area, then more muttering and some more cries of 'I'm cold', then some slightly more irritated mutterings and a thump. After a short silence came the last utterance from the event area that night... 'I'm hurt'. Then we could hear the heavy biker booted footsteps and sloshing fluid in a container sound accompanied by chuckles returning to the campsite. A small ripple of applause could be heard from nearby tents and quiet laughter from the Angels camp fire.

Later on the sun rose, so did the mist, so did we come to that, and the Angels, and the few others that had been witness to the shenanigans in the night and there for all to see in the event area was a large circle of burned grass, at least 15 feet across. It attracted a surprising amount of attention through the course of the day. We denied all knowledge of its origins and listened to various theories of ancient pagan ritual around and within rings of fire which bought to mind events two years earlier which I will write about some other time, I only wrote this because whenever anyone says 'I'm cold' this is what I think of, you have no idea where a burning ring of fire will take me! Later that day we had a cup of campfire tea with the Angels who really were a nice bunch of chaps and as bad as it sounded, the hapless cold caller was never in any real danger, he just chose the wrong part of the event area if he was looking for sympathy, and was keeping the only Hells Angel that wanted to sleep awake! To my knowledge that was the only event to take place in the event area and quite a few people were a bit cheesed off that they must have missed something quite spectacular, as I said, we pleaded ignorance and all things considered we had a good weekends trading and some good free entertainment, albeit at 400am.

That's your lot, a little story with no politics, disability, carers, cuts, Xmas or autism. Normal service will be resumed soon, so make the most of it while I can only bring myself to write about my dodgy past...

I Know It's Pretty, But With Only One Boot......

2010-12-04T16:58:00.000Z

All this snow is a damned nuisance as far as I am concerned. I know it looks wonderful and kids love it but all it does for me is complicate matters no end. Slipping and sliding on ice and maintaining ones equilibrium is a discipline I have never mastered. The correct footwear is essential and sometime between the last snowfall and this one, my pair of snow friendly shoes have worn out and been disposed of. So, time to seek out the old faithfuls, must have had them for nearly 20 years by now, Kangaroo boots with little pockets on the ankles which have been used to stash no end of diverse cargo over their 20 odd years. The pockets are irrelevant, just a few happy memories, the important thing is that they are good for walking in snow and on the nightmare we have today which is black ice.

I went with confidence into the darker reaches at the back of the wardrobe, located the right Kangaroo boot fairly quickly, fired with success I probed further for the left one. Who knew I had two pairs of purple Doc Martens? I vaguely remembered one pair, absolutely useless in snow and looking a bit tired and worn. The other pair are brand new with chisel toes, I was a bit taken aback by these, can't think where they came from, or when come to that, and trying to wear a pair of brand new Docs in icy conditions didn't strike me as a sensible move so they were put to one side for further consideration while I delved deeper for the other Kangaroo. Two pairs of cowboy boots and some aubergine coloured leather knee highs with a 5 inch heel later I realised that the boot I required was not where it should be and short of someone breaking through from Narnia and pinching it, it must be elsewhere.

I won't go into detail about some of the other places I looked into for this lost boot, It should be sufficient for me to say that during my search I found items of clothing and accessories that have been in and out of fashion more times I care to remember, and am quietly pleased with myself about a few garments I ran across which I made back in the 70's which are still intact and looking pretty damn good, though I say so myself! But, the object of all this mayhem, one left Kangaroo boot, remained elusive and as I write, remains elusive. The upside of this loss is that I haven't been able to venture out too far into the world since it started snowing. For me this is good. I do not like snow and ice, sorry if I 'm repeating myself but that's all there is to it, I don't like it, and now I've turned large parts of the house upside down looking for a lost boot.. to no avail, so I can go out and do stuff I don't like doing anyway! Madness! I decided to make the most of home deliveries from Asda, a far more sensible option than slipping and sliding to the wretched store, which I have to admit is just visible through the bare winter trees at the bottom of the hill, covered in snow.

I did find some shoes which were just about serviceable in arctic conditions, problem with them is they are size 8 mens walking shoes. They belong to my husband, he thinks they are only a size 7 therefore has been unable to wear them because they pinch his toes. Personally, I'm a size 5 or 6 depending on style and manufacturer, so two pairs of very thick socks and I can just about get away with them, but they don't exactly make me feel very confident and although it shouldn't be an issue during extreme weather conditions, who wants to be seen out in a pair of their husbands discarded shoes?

Sarah is not to good with snow and ice either and this is a difficult time of year for her, She has her 25th birthday the 19th December and is anticipating gifts and a cake, Christmas a week later, she's just anticipating gifts for that, food is neither here nor there for her at Christmas. But the biggest seasonal problems for her have already started to appear, cancellations due to bad weather. So far, a trip to Cardiff, a visit to the health spa Jacuzzi, a service users disco and a Gateway Christmas party have all been cancelled. Personally, I was just pleased I didn't have to struggle out wearing a ridiculous pair of shoes! Sarah had the screaming ab-dabs of course, to say she went into meltdown doesn't seem appropriate given the current temperatures. But things have settled down a bit for her, she is in respite this weekend which she almost always enjoys and transport to and from the Day Centre has been amazing this week. I don't like to think how they've made it around the side roads up on this hill to pick up the four service users that live around here every day this week, none of them in the least bit confident in the snow. The transport guys have helped them from the front door to the bus and the from the bus to the front door, all smiles and jokes and reassurance, absolutely brilliant. They are of course all wearing appropriate footwear!

So, at some point soon when all the snow and ice have receded I will be found looking in the shops for something decent and reasonably priced to wear on my feet in bad weather, and you can bet your life when I find and part with cash for something appropriate I will also find the lost left Kangaroo boot....

One Year Later... Charity Stays At Home... Revisited...

2010-11-19T21:10:00.000Z

I hate this particular Friday every year, and the few days preceding with all the wind ups and the posturing that goes on in the name of charity, or perhaps that should be The Big Society given the current political climate.

I posted this last year, a week after Children In Need 2009. Dealing With The Day: Charity Stays At Home. If you've got a minute or two just skim through it.

A year on, could we have imagined then that we would be in an even worse situation today, especially for the poor and disabled, whom the children now considered to be in need will surely grow up to be, with a government whose intention appears to be to decimate the health and welfare services?

Again, apologies to anyone offended by my opinion, and if you are offended, come and walk in my shoes for a week or so and see if you still feel the same way.

Elephants, Not Surprisingly, Big Subjects...

2010-10-27T20:38:00.000+01:00

Elephants have always been a big thing in our house.. pun intended. An awareness of elephants has always been present of course, but they seemed to become a very important after the girls were born. The most favoured cuddly toy was an elephant for a while, the favourite books almost always involved an elephant, Babar was the cartoon of choice on TV. There was a short period of dragons being favourite, but that was soon after we moved to Wales where the images of dragons are commonplace and the most played video was Ivor the Engine, particularly the episode with the dragons in Ivor's fire box, but the elephants soon returned as champions. Elmer was a particular favourite.

Somewhere near the middle of my husbands midlife crisis, which has been ongoing for at least twentyfive years, he took a liking to dance music, not Come Dancing dance music but the standing in a field with your arms in the air and flashing lights Ibiza style dance music. One memorable Friday night in the Hippo Club in Cardiff some time in the '90s, he got incredibly excited by some sounds which bore a resemblance to elephants trumpeting, after that he was hearing elephants everywhere for a little while. Consequently whenever anyone he knew came across anything elephant related it seemed to end up in our house. It was also useful when family asked what Bill wanted for christmas of birthdays I just said 'elephants' and left them to it, it worked for a good few years. He didn't seem to mind. I denied all knowledge.

Speaking for myself, elephants are cool, I've got a lot of respect for them and they seem to turn up in the most surprising places. You'd expect to run across them in Asia, and you do. I imagine if you go on safari in Africa you'd be pretty sure of seeing a few, never done that so can't be sure. Seeing them in a field in the bottom of the valley just outside Aberdare was a bit of a surprise. I was alone when I first spotted them, it was not long after we moved to Cwmbach, just outside Aberdare. We'd moved from the Forest of Dean where they have sheep in abundance and the odd pig, there were lots of red deer there as well and I was always seeing them although a lot of the locals claimed never to have seen one and some even denied their existence. I was brought up close to Richmond Park, and not that far from Bushy Park and Home Park, I know a red deer when I see one. And I know an elephant when I see one, or two which is how many I saw this particular day.

Having just moved, and not knowing anyone in Wales let alone Cwmbach, the only people I met were other mums at the school gates whom I had absolutely nothing in common with, or shopkeepers and checkout persons. Add to that my inability to understand a word anyone was saying, although they were speaking English, it was at an incredible speed with an impenetrable dialect. Anyway, all this was making me feel a tad isolated so I decided to enroll in a local drawing class and it was while I was waiting for the venue to open early one Autumn evening, leaning on a iron fence watching the sun go down over Aberdare that I noticed the elephants wandering across an area I later came to know as 'The Ynys'. It struck me at the time that perhaps I should keep this sighting to myself as a wall of Welsh denial was certain to go up if I said anything, red deer in the forest still fresh in my mind.

I was still struggling with the whole concept of elephants in the Cynon Valley when the chap that was running the class wandered over, leaned on the fence and concurred that elephants weren't something you see every day mooching about down there and he was pretty sure he'd not had all that much to drink, he also felt that perhaps we should keep this sighting to ourselves. We left the elephants to it and went to unlock the class room as more people were arriving for the drawing class, and not another word was said about elephants for almost an hour, when a bit of a rumpus could be heard from the corridor where a whole load of nine year old karate kids were getting over excited about a group trip to the circus on the Ynys at the weekend. Teacher and I exchanged a knowing nod and didn't mention what we had seen to the rest of the class. That weekend I took the girls down to the Ynys to see the animals which was a sad outing, seeing them shackled and static and we didn't go to see the circus as none of us was really very keen on the idea. I just wished more people had been lucky enough to have had the pleasure of seeing them wandering about in the open as I had. Yes, they did let the elephants out wherever possible to stretch their legs, in fact at one time I understand they would parade through the streets. I remember when I was a kid in Kingston on Thames, being awestruck by the annual Chipperfields Circus parade through town with the horses, trapeze artists, elephants, clowns et al, to the playing fields where the big top was pitched around about this time every year. How innocent we were back then, happily there are no more circus elephants and here would be a good time to admit that I cried all the way through Dumbo and I've avoided it for the last umpteen years, and somewhere on this earth there is a photograph of me aged about six riding with several other children on the back of an elephant in London Zoo. Happily there are not a lot of elephants in zoos these days either.

So what bought all this to mind? I saw this link by chance on Twitter and clicked on it:

Thai Elephant-Assisted Therapy Project - autistic autism

Like all therapies, it will work for some and not for others, but that is neither here nor there, it was the sheer joy that the thought of an elephant assisted therapy bought to me, and which has stayed with me that interested me, suddenly I was six years old and on the back of a huge grey elephant in London Zoo, swaying precariously and looking down at my Mum and Dad waving up to me, I had no idea that anything could grow so big and be so gentle as I discovered when I gave the elephant the bun I had been given to say thank you for the ride, after all these years I remember the soft warmth of the huge trunk gently taking the bun from me. Elephants are big and strong gentle, and so was that particular memory, and it occurred to me that I have clear memories of all my encounters with elephants, be they real or in books or films, they are without doubt a memorable animal, and for me, just knowing that there are elephants in the world is a therapy in itself.

Queen Street.. Revisited

2010-10-25T20:55:00.001+01:00

Sarah and I went to Cardiff today, and this has been rattling around in my head from the moment we turned a corner into Queen Street, one of the main shopping streets in Cardiff now pedestrianised and always busy... that wretched Tory saying us benefit scroungers from the top end of the valleys could all get on buses and come and seek work in Cardiff. (See previous post for that particular rant.)

This particular benefit scrounger has a degree in Art and Aesthetics, and I have always had an interest in public art, particularly the sculpture that graces our streets in the form of statuary of the great and good. South Wales is a good place to be if you like that sort of thing, there are bronze castings of wiry boxers in Merthyr, the Nos Galon runner and his dog in Mountain ash, we've got Kier Hardy and Griff Rhys Jones in Aberdare. No, not that Griff Rhys Jones, this one was known as Caradog, and conducted a 400 strong choir that won prizes in the 19th century. All good stuff. Cardiff has got an awful lot of the great and the good as you would expect in a capitol city, but their are two in particular that stood out for me and did their statuary brethren proud today. For me, their positions, one each end of a bustling retail thoroughfare, both of them are either greeting you as you enter, or watching you leave, speaks volumes about the city, the history, the politics and the people who find themselves walking along Queen Street.

At one end we have Nye Bevan, he was a politician, so he's on a big plinth, unfortunately he is also under a tree, so he gets a lot of bird crap dropped on him. This is the man who started the National Health Service, the man we have to thank for the Welfare State. Beyond any shadow of doubt, one of the good guys, there's a lot of us wouldn't be here today but for him. But the birds don't know that, so they can be forgiven.

And at the other end of the street we have the Miner. The same sculptor produced both pieces. Robert Thomas, from Cwmparc in the Rhondda, '26 to '99.

You cant help but notice that the Miner is only slightly elevated, he's not standing on a plinth like Nye, he is standing on a slab that is barely a foot high, He's a little bit larger than life and you have to look up to see his face, but then, isn't that as it should be? Here is the hero, the working man, the guy that lives next door and goes to the working mens club on a friday night, the salt of the earth. Today he would be labeled a benefit scrounger by certain section of society.

So back to the object of this post. We are presented with two very different people, the politician who worked with ideals and ideas, and the miner who worked with his strength and courage, both working for the greater good, both heroes in their own way. One of them at each end of the street.. What has been rattling around in my head all day today has been the nerve of the Tories who are reveling yet again in the suffering of sections of society that they have no concept of, and would any of them have the humility to feel ashamed of themselves, were they to walk the length of Queen Street with their eyes open wide enough to see the strength of character expressed by these two emotive pieces of statuary... and I have to admit, I would really like to see them squirm.

Spending Review, Ian Duncan Smith, Cold Calling.. This Has Not Been A Good Week...

2010-10-22T18:20:00.000+01:00

I'm not going to talk about the Spending Review, I don't need too. It is all to obvious to all of us that it is an ideological swipe at the poorest and most vulnerable people in society. The image of whooping and cheering Tories waving order papers in the House of Commons at the prospect of destroying the welfare state will stay with me for some time. As for the LibDems, well, what can you say, this coalition stinks and it's intentions are clear. Their definition of fair seems to be something along the lines of being fair to everybody, and if you've already got more than you need, it's only fair you get a bit more. With the Tories in charge you can guarantee that some of us will be more equal than others.

Now IDS has decided to turn up the volume a bit to remind us all of the appalling 'get on your bike' statement made by Tebbit last time the Tories screwed up the country. This time the unemployed in Merthyr Tydfil are supposed to have lost the ability to get on busses and go to Cardiff to seek gainful employment in a city that already has a bit of an unemployment problem. According to IDS it's only a 50 minute ride to Cardiff, not going to argue with him about 50 minutes, that's probably about right. Now if you glance back through some of my previous posts you will see that I am no stranger the bus journeys in the South Wales Valleys.

I live in Aberdare, one valley over from Merthyr (35 minute bus ride away, weather permitting in the winter). If you are not familiar with the area we're talking about, open up your Google Earth and have a look. If you are unemployed and living in Merthyr the chances are you are housed on one of the estates to the north of the town. These estates are not exactly walking distance from the bus station in town where the cardiff bus can be caught, you are looking at adding another 30 minutes at least to your journey. Of course, another problem is on the return journey in the evening the chances are you would be too late to catch the last local bus back to your estate. I live on the edge of an estate 3 miles south of Aberdare, the last bus from there to where I live is at 6.00pm, whenever I have left Cardiff after 5.00pm I have never managed to catch a connecting bus and end up paying more for a taxi to get me home. I know 3 miles isn't that far, but look at the terrain, the last mile is seriously uphill. They may be small but they are still mountains! So Ian Duncan Smith, commuting into Cardiff by bus from the Heads of the Valleys bears no resemblance to commuting into London from the suburbs, believe me, I know, I have experienced both. Come down here and give it a try before you start telling the people whose families your predecessors have already tried to destroy by taking away their livelihoods and dignity one way or another for generations, that they have forgotten how to use busses!

Which brings me to a personal gripe which has niggled me more than a little this week.. cold callers, particularly the ones who call in the early evening when you are trying to get the tea ready. I knew they were in the area, I saw them while I was waiting for a bus earlier in the day, (ironically, on my way to the jobcentreplus to get a bit of paper stamped). These two were from Scottish Power, apparently not selling anything, just anxious to show me all the savings I could make, I told the talking one I wasn't interested, but he was jabbering so loudly he couldn't hear me. He had to take a breath so I took that opportunity to say again that I wasn't interested and quite frankly fed up with the likes of him standing on my doorstep trying to sell me stuff I didn't want and started to shut the door. To cut a long story short, he took exception to my refusal to listen to his sales spiel, told me I was abusive and the last thing I heard as I shut the door was him telling me I was rude and ignorant. I have been in touch with Scottish Power, waiting for an apology as I blog.

That was Wednesday, yesterday it was TalkTalk, earlier in the day but still inconvenient, This one came out with some crap about did I know about the free internet being rolled out over our area. I said 'no, but somehow I already have free internet, so cheerio.' He then told me his internet would be faster, I suggested it probably wouldn't be and tried to shut the door. He's now waving a leaflet in my face asking me if I had read the leaflet that I should have received last week. I had to tell him that unsolicited mail went straight into the bin and was never read. What followed was a silly statement from a man who is only carrying a clipboard, 'Only we're collecting them back for recycling because we are a green company' I told him we were green too and all his junk mail went out with all the other paper recycling shortly after a nice man from the council delivered a very cute little green wheely bin for food waste only the day before and shut the door quickly before he could think of anything else waste my time on.

Now to pull cold callers, IDS and the spending review together. Old council estates with their high percentage of the low paid or unemployed and of course, a lot of elderly people, usually women since most of the elderly men have long gone with silicosis, must seem like the happy hunting ground for these high pressure and deceitful sales types. Faced with the onslaught of 'facts and figures' these people regurgitate on every doorstep I'm pretty sure the unwary get sucked in by the false enthusiasm and just go along with it. I don't imagine these people do a lot of trade in the areas which sport front drives, nice cars and neat front gardens, I would hazard a guess that the people who live in that sort of environment are not the ones IDS is having a pop at either. Well, we all know who is going to come off worse when the spending review cuts are implemented and lets face it, the nice cars and neat front gardens are going to get over it if they lose a bit of benefit, maybe take a cheaper holiday, maybe put off the new kitchen for a year. Heaven forfend, they could send their children to the local comprehensive and save on school fees, their kids will still be able to take their A levels and go to University!

But back to the cold callers for a moment, I suppose they are just as worried as the rest of us about how the cuts are going to effect them, so of course they are going for the easy targets, get your sales numbers up, less chance of losing your job. Which is what the government is also doing, ensuring their core vote is happy by targeting those that they perceive to be scroungers, which unfortunately includes the people who will be least able to cope with cuts in an already meagre income, not to mention the inevitable reduction in social services as councils pull in their belts. They know these people are the least likely to vote, let alone vote tory. It is despicable behaviour by people who should know better and that is as far as I am going, the sun is most definitely over the yard arm, Sarah is away in respite this weekend, and the said weekend starts here........

A Bus Too Far.....

2010-10-12T21:28:00.000+01:00

We've just had a four day weekend. Very nice you might think if you subscribe to the normal five day working week with Saturday and Sunday off. In our household it's not quite that simple. Sarah spends four days a week in the day centre, transport picks her up at 8.45am and delivers her home at about 4.00pm, Tuesday to Friday. Well that's what should happen but that damned butterfly keeps flapping it's wings somewhere in the Amazon resulting in all sorts of nonsense occurring here in the Cynon Valley.

As you would expect, I arrange all appointments, missions, meetings, whatever, for the days when Sarah should be in the Day Centre. The second Friday of every month is the day chosen for the little writers group I am part of to meet up for a couple of hours in the Muni Coffee Shop in Pontypridd... as an aside, if you should happen to be a carer that lives in Rhondda Cynon Taf and you're at a loose end on the second Friday of the month, the Muni does a decent cup of coffee and you don't have to be able to write to join us, having an interest and being a carer is sufficient... So the butterfly flapped it's wing in celebration of chaos theory and sods law, and Sarah is home on the second Friday of the month because of staff training and we've got a four day weekend on the back of a three day week.

Now Sarah, being autistic, assumes that she and I will go out for the day, somewhere exotic like Swansea or Cardiff. I explained to her that we had already visited Cardiff on Monday and I've got to be in Ponty for 10.00am which means catching a bus at 8.30am, If she wanted to come with me she would have to get up as if she were going to the Day Centre and not having a day off, and anyway she would only get bored because I would be talking to other people, so perhaps she and her Dad wouldn't mind following me so that we could meet up in the Muni around midday when my meeting would be breaking up, have a cup of tea, maybe go and have some fish and chips (always a deal clincher with Sarah) then the three of us come home on the bus together. By some miracle this suggestion was accepted and put into action. I met up with fellow writers and we were just winding up when Bill and Sarah arrived.

After a round of hello, how are you, nice to meet you and so on which Sarah loves, (a whole bunch of new faces with names and birthdays to remember and recite when I least expect it!) we set off for the fish and chip restaurant at the other end of Pontypridd, feed our faces and then head back to the bus station. It's round about 2.00pm and a bus is due in. And here it is, and it has Aberdare written in flashing orange lights on the front. Not the usual bus, which should have alerted me to potential problems, but it did say Aberdare, and when I showed the driver my return ticket which had 'Aberdare to Pontypridd return' writ large upon it and said 'Aberdare?' in a questioning manner, he nodded! Bill travelled as companion to Sarah on her disability bus pass so no words were exchanged there. So off we go, should be back in Aberdare well before 3.00pm.

Quite a crowd on the bus, all happily settling down for the ride to respective homes, bouncing along the A470 towards the exit before the dreaded Abercynon roundabout. Passengers accustomed to the journey are preparing for the long left turn we are about to go into only to be surprised by the shortness of our turn to the left as we find ourselves going to the right and along a road that is not going to take us to Aberdare. A few of us noticeably sat up and paid attention at that point, and probably all thought something along the lines of 'at least I'm not alone!' Being British, none of us said anything. Working on the basis that this isn't the sort of bus that goes a very long way, Bill and I decided to treat it as a game and played at guessing our destination from the road signs, landmarks and clues like railway bridges etc that we spotted along the way. We were a little disappointed when we saw the road to Merthyr and didn't go down it. We then spent a good half an hour touring housing estates we'd never heard of, a few people actually got off, I'm guessing they knew where they were. We went through more places we'd never heard of and finally landed up in what passes for a bus stand in Bargoed. By this time the only people left on the bus were the confused from Aberdare. The silence needed to be broken so I thought I'd go down and speak to the driver. He told me that I must have got on before he changed the display on the front of the bus, I asked him where he had come from before arriving at Pontypridd, he said Aberdare, I wondered why the display hadn't said Pontypridd and was answered with a shrug. So then I enquired as to where he was driving to next because myself and most likely the half dozen others who got on the bus before the display was changed were curious. Pontypridd. Good, and where to after that? Aberdare. Right, I left it at that with the driver, he didn't seem at all bothered and anyway his phone was ringing, so as I returned to my seat I suggested to our fellow travelers that we all just stayed put on the bus until it got us to where we were supposed to be, being British there was an assortment of responses along the lines of 'deww' 'typical' 'durrr' 'tsk' all accompanied by raised eyebrows and rolling eyes and shaking heads.

So we revisited our mystery tour route, but the other way round of course, arrived in Ponty, picked up more passengers and then on to Aberdare arriving nearly an hour and a half later than we should have. I couldn't help wondering how many people were standing in Aberdare bus station scratching their heads and wondering why they weren't in Bargoed! First lucky break of this convoluted return journey then happens, as we are making our way to the stand for the connecting bus to Cwmbach, home and a cup of tea, it obligingly pulled in and within a quarter of an hour the kettle is on and Bill is summoning up Google Earth to try and make some sense out of all the twists and turns we had just experienced. So that was day one of our long weekend, on day two we didn't go anywhere near a bus. Day three... buses are few and far between on a Sunday. Yesterday Sarah, who by the way, thoroughly enjoyed the extended jaunt on Friday, decided we needed to go to Merthyr for which I am eternally grateful, since up to Sunday night she had been talking about going to Swansea which involves a bus change in the middle of nowhere onto yet another dodgy service running buses that have definitely seen better days.

Our Merthyr trip was uneventful, there and back again with no problems, but I've got to admit I could have done without it, for me it had no real purpose, but Sarah loves it, sitting on a bus with her earphones on, calculator in hand and a bottle of water and I could always do the same, except read a book rather than grapple with a calculator! But that trip on Friday, well the word Bargoed has begun to take on a whole new meaning over the weekend. I have a feeling it is going to become a point of reference when planning trips and events. I can almost hear myself saying as I study timetables or stand in a queue, 'Under all circumstances, we've got to avoid a Bargoed.' Without doubt, it was a bus too far. Ropey old vehicle, badly maintained and extremely bendy roads and by bendy I mean be up and down as well as side to side. Bill and I were so knackered that by 9.00pm we were both spark out in front of the TV.

Well that lot is better out than in, but there is one thing I should add, Bargoed actually looks like a pretty good place by Valleys standards and one day when I've nothing better to do I will probably go there on purpose, although if possible, not via Pontypridd bus station and preferably by train...

Turning The Tables...

2010-10-08T00:33:00.000+01:00

Nearly a month since I last blogged.. how remiss of me, but I have been basking in the glorious peace that has descended on our house since Sarah seems to have turned another corner and has changed her default reaction to any given situation from..

'I want nothing whatsoever to do with what you are suggesting and until I get my own way I will shout, scream, stamp my feet and inflict as much damage as possible (physical and mental) on you, me, anyone and anything that is within reach.'

..to..

"Ok, I'll go along with that. We are going to have something to eat aren't we? Busses can be a nuisance sometimes, never mind, earphones on, iPod on, can I have a drink of water? What is 64x72?'

In the last month several things have happened that would have resulted in utter meltdown seven or eight weeks ago. We've had changes of staff at the Day Centre, changes of personnel on the transport, a full moon, a menstrual cycle, several technical hitches involving freeview box, DVD player and iPod and a nasty cold which has left us with a nasty cough which we cannot shift.

So what's going on? What's happened? As far as I can see it is just two small adjustments made by everyone who has dealings with Sarah. At the Day Centre and at home we have made a concerted effort to ensure Sarah knows where all the people who are important to her are and that she is told well in advance of any events coming up, or changes to events she is already aware of. A couple of simple things really, but we had all let them slide and had not noticed. It needed to be pointed out to us because we just couldn't see it. Something was obviously making her feel as mad as hell, none of us could work out what it was and we all just reverted to damage limitation and putting up defences.

As I said in an earlier post, we had visits from a psychiatrist. He finally assured us that the problem was not a mental health issue that required medication. This was a relief, Sarah has never had any medication beyond the usual antibiotics for infections etc, and decongestants because she doesn't cope well with stuffy noses. He was of the opinion that psychology was the way forward but he would keep a watching brief on progress.

Psychologist turned out to be a marvelous woman who hit it of with Sarah as soon as they met. Of course I was the one who had to do most of the work, listing dates, events, good days, bad days, what the weather was like, who was around. endless little details going back six months or more. and also keeping a diary with detailed descriptions of any challenging behaviours Sarah displayed what may have prompted them, where she was etc. A similar thing was being done at the Day Centre. Every week for five weeks Amy the psychologist and I went through the events of the week with a fine tooth comb, she made a chart and with the aid of coloured markers we started to see patterns emerging.

I believed from the start that what was needed was a fresh eye looking at the problems we were having, I had a bit of fight to get anyone to take me seriously and it wasn't until the Day Centre had trouble keeping Sarah calm on some days and I expressed my concerns for my own health at our GP surgery that action was finally taken and we were referred to the psychiatric dept. I believe I was proved right.

Two weeks in, Amy noticed that the worst incidents were occurring when things change and Sarah was not informed. We have always known that Sarah doesn't like surprises, We also know that, being autistic, routine rules, and that changes have to be explained carefully. What the Day Centre and ourselves had lost sight of is how small these changes can be and if too many changes are occurring, as they had been for Sarah for almost a year it turns out, she is not surprisingly going to get a bit miffed! So, rules laid down, strategies put in place, and the last month has been plain sailing. We just couldn't see the wood for the trees.

So we have had the pleasure of a cheerful and relaxed Sarah for a few weeks now, she is not worried about what horrendous changes might have taken place overnight, so has space left in her head to think about other things, like getting back into teaching herself to read, she still doesn't like people showing her what to do or how to go about things, she has to work it out for herself. Also multiplication tables.

Like most of the pre calculator generation, I learned my tables off by heart in junior school from 'Once one is one' all the way through to 'Twelve twelves are a hundred and forty-four'. Now here comes the rod for your own back confession... when Sarah was about three years old she didn't do a lot of sleeping and the only way to get her to lay down and shut her eyes was to sit next to her bed and talk to her. This happened every night, sometimes all night, sometimes just for an hour. We tried the classic children's books but she wasn't too keen. I'm not too good at singing so I used to recite Bob Dylan songs to her, she was, and still is, very fond of Mr Tambourine Man. My version of Subterranean Homesick Blues used to go down quite well too. Then we would say the alphabet, forwards then backwards, at least twice, then we would count to a hundred forwards, then backwards, she was usually getting dozy at this point, and the only thing left in my head that I didn't have to think about were multiplication tables. We did this for a solid two years, then spasmodically, mainly through school holidays, until we moved to this house and she had a room to herself. She was about eight years old by then and she knew her times tables, she didn't know how to use them, but she knew them, and being autistic, she still knows them but doesn't have much idea of what they are about. Now she has all this spare time to use up, time that she was spending getting wound up about which bus was coming for her in the morning.

On Saturday the penny dropped.

We had bought two sponge rolls for £2.00 from Marks and Spencers. I won't go into why we were in Marks and Sparks food hall, thats another blog for another day, suffice to say that a Cappuccino Chocolate Sponge Roll and an Apricot Sponge Roll for £2.00 was an offer we couldn't refuse. That evening, we had to decide whether we should break out the Cappuccino Choc or the Apricot. My husband, Sarah's father, suggested that we could have a slice of each.. each. Sarah was a little confused by this radical suggestion, but conceded it was a good idea after a small demonstration of swiss roll slicing. It was demonstrated to her that each cake was sufficient for nine good slices which meant we had three days worth of cake if we had one slice of each cake each and there would be no argument over who had most of which one. An astounding piece of logic to emerge from our house really.

In Sarah's mind, all those abstract numbers she's been carrying around since my attempts to bore her to sleep twenty odd years ago suddenly turned into slices of cake and by the time she'd finished eating her slices of cake she was grappling with the calculation for how many sausages were needed if there were ten students, four staff and they wanted three sausages each. she got to the answer before I did. Mental arithmetic was never my strongest point. So now she is asking me to confirm the answers to mathematical questions she is setting for herself. I really am useless with numbers, I learned tables by rote, that is the only reason I know them. I'm sure there must be a name for it, something like number blindness, dyslexia only it's numbers not letters that I have difficulties with. With paper and pencil I can do the basics, with a calculator I can do VAT returns, double entry book keeping is not too much of a problem, I just can't hold the numbers in my head long enough to do simple mental arithmetic that other people seem to find easy. I had difficulty telling the time as a child, I just learned to recognise the angles of the hands, I had to look very long and hard to be sure. Digital clocks were a bit of a bother but I think I've cracked them now, although twentyfour hour clocks can still be a bit troublesome.

So this latest bit of progress for Sarah is proving to be a bit of a problem. She has literally turned the tables on me! I've had a few weeks of breathing space I suppose, now I'm just going to have to get to grips with the calculator and do my damnedest to catch up on the maths. Never mind, no peace for the wicked, as they say... Hmm... sometimes I regret my ill spent youth....

It's Monday, So We're Of On A Benefit Scroungers Day Out....

2010-09-13T08:52:00.000+01:00

Since Sarah's stay back day from the Day Centre is now Monday, that is the day we have chosen to go out and have a bit of a bus ride and something to eat in whatever establishment appeals and in Sarah's case has either scampi or fish and chips on the menu. So far we have been to Abergavenny, Swansea, Cardiff, Brecon, Pontypridd and Merthyr Tydfil. You should know that none of these places are all that far from Aberdare if you go by car. Cardiff, Ponty and Merthyr are places often visited. It's a bit of a dodgy bus to Swansea so we don't tend to go there much. Abergavenny and Brecon are a tad more adventurous, but buses to these further reaches are few and far between and if you want to get home on the same day you only have time for a quick bite to eat and a wizz around the market if there is one.

We are getting close to running out of places to go on a Monday this side of the weather making Sarah think twice about heading out anywhere, she's not very keen on wintery conditions and is terrified of slipping over on snow and ice, although she is alright with just plain old cold and wet, but not so good if the wind is blowing. The joys of Bridgend and Porthcawl will probably have to wait until next year. Today we have chosen Newport. I've not been there since last time I needed to get my passport renewed in a hurry and thinking about it, since that passport is now out of date, it must have been a good few years ago.

Now my inclination was that this trip should be done by train. My problem with that was having to get cash first, which at the moment for me and trains, is essential. (See previous post.. On The Whole, A Good Day With A Couple Of Hiccups) A problem that is not unsolvable with some forward thought, so I checked the prices. It seems that the return trip for us both would not leave us with a lot off change out of £30.00.

Ok. I know that is not a lot of money. The bus fare is not that much cheaper, my guess would be about £20.00, but you've got to remember that Sarah and I are what the more hysterical newspapers and George Osborne like to call benefit scroungers. Believe me, it's bloody hard work being a scrounger, it's 24/7 and unless you can scrounge up some respite you never get a day off, and £30.00 would see off over half of my weekly Carers Allowance. But Sarah is fortunate enough to be so good at being a scrounger that she has got a free bus pass for herself and because she is not so good at communicating and being able to go out on her own, her bus pass allows her to take a companion with her for free. So on one day a week, like the good scroungers we are, we take advantage of the bus pass and go as far as we can for free.

So Newport, it's your turn this week, I estimate we will be with you around midday. We'll be with you for a couple of hours to sample your finest fish and chips, see if we can find some of those dragons that are something to do with the golf and catch a glimpse of the transporter bridge.

Ooh, look at the time, 08.41am, we have to leave the house at 09.00am or none of the bus connections work. So I'm cutting and running now, Sarah's iPod Shuffle fully charged, camera in bag, if it doesn't rain too hard I might get to take some photos. Trying to keep up with this scrounger lifestyle can be difficult sometimes...

On The Whole, A Good Day With A Couple of Hiccups...

2010-09-12T00:45:00.000+01:00

It was Friday, yesterday, and I have a long standing arrangement to meet a couple of members of our little writers group in the Muni Coffee shop in Pontypridd. Emphasis on little, there are only four of us at the moment and we're trying to stir up some interest from other carers to join us once a month for a couple of hours to share anything new and give some moral support to each other. A couple of us are interested on getting work published, others are just looking for a sounding board for new ideas, poems or whatever. We came together doing a creative writing course arranged by the Rhondda Cynon Taff Carers Support Project and Academi (Yr Academi Gymreig – The Welsh Academy is the Welsh National Literature Promotion Agency and Society of Writers.)

It was just a short course headed by Mike Church, a performance poet of some repute in these parts. There was a dozen or so of us on the course and we had such a good time that when it finished we decided to set up our own group because we didn't want to lose touch and as carers, all had a lot in common. If you happen to be a carer in Rhondda Cynon Taff and you have an interest in writing, get in touch, caring is the one subject we only mention in passing, you have to be a carer but you don't have to write about it, the group is all about getting away from the caring and having a couple of creative hours to yourself.

This particular meeting was at 10.00am, would only last two hours maximum giving me plenty of time to get home by 1.00pm for the last visit by Sarah's psychologist at 1.30pm. So off to Ponty, I'll be back by 1.00pm. Famous last words.

Leave the house at 9.10 am, walk down the hill to the station, train arrives at 9.24 am, only five stops to Ponty, 20 minute journey maximum. So far so good. I gave some of my loose change to Sarah before she left for the Day Centre earlier, but no problem, I always buy the ticket on the train using plastic. I had forgotten that when I made this journey last month there had been a problem with the new card readers that Arriva Trains Wales conductors are now using. They don't like some cards, specifically Lloyds TSB Debit cards. Guess where I bank! Now we're not talking about a lot of money here, £2.90 return. Last month when the card was declined due to insufficient funds the lady conductor got quite embarrassed, apologised and said they had a problem they would be sorting it out and would I mind paying cash, which I did. This month I discover that the problem has not been sorted out and I am asked to pay cash, and you guessed it, I don't have £2.90 in the purse.

I suggest to the conductor that I pay at the ticket office in Pontypridd, you can't get out of the station without a ticket and I'm pretty sure the card readers connected through telephone lines or computers or whatever they've got there would accept my card. "Not if you haven't got enough funds" was his response. I explained to him that there were more than adequate funds on that card to cover £2.90, and that he knew as well as I did that it was the reader that was at fault. He agreed with me about the reader being the problem but apparently it was my fault the card was declined because I should have asked my bank to do something when it was declined the first time, and I should have known it would be declined again. Since I've been using the card for over a month since it was first declined by Arriva Trains Wales, and no one else has declined it, and was told it was their problem they were fixing, I enquired as to how I was supposed to know I had to contact my bank before embarking on a short rail journey. The first class jobs-worth now told me he would have to ask me to get off of the train at the next stop and find an ATM. My response was "In Abercynon!" I mean no offense to Abercynon or it's wonderful inhabitants, but it's a bit of a one horse town, not sure where I'd even start looking for an ATM.

At this point I should say that the conductor watched me counting out the cash I had and I was in fact, only 11p short of the return fare. I should also point out that Abercynon is the station before Pontypridd. A town with an embarrassment of ATMs beyond the ticket barrier, these thoughts are beginning to make me feel a little angry when it occurred to me that I must be able to afford a single ticket, and that thought must have occurred to jobs-worth as well. But I am not one to climb down and I am also of a prudent mind set, some may call it mean but I would prefer prudent. The price of a single ticket is £2.70, which means when you buy a return, one of those journeys is an absolute bargain at 20p! Quite often you don't see the conductor to pay before you get off at your destination and end up buying your return tickets from there, but this guy has dug his heels in.

I am resigned to not getting the bargain train ride today, we are slowing down on our approach to Abercynon and the conductor is hovering in a meaningful way. He knows I have enough to pay for a single ticket, I'm guessing he's thinking that I've worked that out too, so now it is just a question of who is going to suggest the obvious first. Not me, I can still see the way round not having to pay £2.50 more than I need too, that is, let me stay on the train for one more stop and do what the rest of the people behind us on the train will do, pay the guy set up to take fares at the exit barrier. As we are grinding to a halt in Abercynon it became clear that he would not be the one to suggest paying a single fare. Nothing about this incident was making any sense from the passenger point of view, and this chap was obviously not capable of independent thought whilst wearing his Arriva Trains Wales uniform. He told me that I could not travel on the train without a ticket and that I had asked for a ticket knowing I had insufficient funds. You could almost smell the disappointment on his face when at the last minute I suggested I buy a single to Pontypridd.

Out of the station, scheduled stop at ATM for cash for coffee in The Muni and now sufficient funds for homeward journey and a bit extra just in case, I'm not going to get caught out again! I'm a fast learner. Sitting down with the coffee by 10.00 o'clock. Exchange news etc. with fellow writers, leave The Muni just after 12.00 o'clock in good time for train home. Oh that life were that simple. On arrival at the station it was obvious there was a problem. Way too many people on the platform and the word DELAYED going round and round on the electronic signs. I've had a lot of experience of delays on the Valleys Lines, once one train is delayed the domino effect kicks in and delays become cancellations and I'm supposed to be home by 1.00 o'clock. So I retrace my steps back along the length of Pontybloodypridd to the bus station where I see the bus I want disappearing over the bridge, bound for Aberdare, a bad sign. That means a 20 minute wait, at least, and then the best part of an hour's ride and a dash for a connecting bus from Aberdare back out to Cwmbach. Entire journey home took an hour and a half and cost the best part of £6.00. Ironically, the train has many advantages.

After numerous phone calls in all directions by me, my husband, the psychologist and another of her clients, we managed to rearrange the afternoon to suit everyone. And on top of all this it was chucking down biblical amounts of rain from the moment I left the house to the moment I got in again just short of an hour late.

The final session with Sarah's psychologist went really well, in fact the whole experience with psychology has been good this time, very positive with well thought out and doable strategies for managing Sarah's more challenging behaviour and a sensible forward plan which involves the Day Centre and respite staff. Still a lot of work to do, always will be, but at least we know we are doing it right now.

So on the whole it wasn't a bad day, pleasant meet up in The Muni, good outcomes with the psychology, Sarah still in a remarkably cooperative frame of mind. The inability to buy a train ticket incident probably only lasted 3 mins, albeit tense minutes. The worst part was walking the length of Ponty in the rain. I have a suspicion that the gods of public transport decided I was just a little too complacent about getting a seat facing forwards with a table on the train, and gave the conductor a nasty touch of indigestion just has he got to me. The fact that he didn't show his face until one station short of Ponty tells me he was up front having a cheese roll, a flask of tea and a go at the crossword in the Metro if there is one, I've never made it past the 2nd page so don't really know. It must have been a multi misdemeanor by several passengers to cause all the delays and cancelations on the way back! Buses are a law unto themselves, nothing more to say about them, In fact nothing more to say about Friday, which by the time I've posted this will be the day before yesterday.

A Head Full Of Quandary....

2010-08-20T20:30:00.000+01:00

Apologies for absence over the last few weeks, but I have had a head full of quandary... for anyone who knows their Joni Mitchell, no, I didn't suffer the mighty, mighty thirst, if you are not familiar with the works of Joni Mitchell I urge you to listen to 'Don't Interrupt the Sorrow' from her sublime album 'The Hissing of Summer Lawns', it has absolutely nothing to do with what I'm about to ramble on about but has given me a lot of listening pleasure down the years. Digression over and done with... on with the motley..

Back to the head full of quandary. I've been banging on about the lack of psychology input for autistic people, and by default, their carers for some time now. It's all very well for your care manager/social worker to load you with praise for how well you are getting on/coping and making sure you have a review meeting every six months or so to make sure everything is still on track, but what you really need is someone who knows what they are talking about to tell you where you may be going wrong and suggest strategies to help when things are not going to well.

Every carer knows you can't get it right all of the time, we have learned that you cannot do the impossible, we also know that neither intoning prayers nor snapping your fingers will result in a miracle. We also know that when there is a recurring problem a fresh and eye can often see what is causing that problem a lot faster and clearer than those caught up in the maelstrom of an autistic meltdown. And do you know what? I don't care how good your care manager/social worker is, he/she has got a workload so big and diverse that good specialized advice from them is next to impossible. Unfortunately, from my experience it seems that referrals to specialists in autism, made through your GP or social services fall on barren ground and we certainly don't have sufficient funds to venture outside of the NHS, and to be honest, my principles and politics wont allow it anyway. So when a psychiatrist and a psychologist turn up within month of each other I can't help feeling that my years of making a nuisance of myself have paid off.

Psychiatrist was great, and confirmed for us what we already thought was the case but needed to have confirmed, that Sarah does not have any mental health issues and management of the more damaging aspects of her autism with the help of psychology was the best way forward. Just like everyone else that has dealings with Sarah for a short while, he was fascinated by her and is keeping her on his 'books' and overseeing her case. The psychologist has turned out to be a real gem as well, although the amount of homework she has had me doing was unbelievable! And that is exactly where the greatest help has come from. She had me going back through these blogs and through the communication book we have running with the day centre pinpointing times, dates, days, events and so on and describing the nature of the behaviours which have been causing concern. I wrote it all down along with corresponding dates for things like respite stays, menstruation, etc. That bit of hard work is over thank goodness, I don't think I've done so much research and written that much since I had to submit my dissertation! Now I only have to keep up with daily entries as a kind of diary which only takes a couple of minutes a day so long as Sarah is ok.

What we've discovered from all this is that there are blatantly obvious triggers for meltdowns and violent behaviour so those triggers need to be addressed and eliminated where possible and if elimination is not possible, we need to construct strategies to help Sarah cope. We sort of knew that, but when you live with it day in day out for as long as we have you get kind of long sighted, you know what I mean, when you find you need reading glasses to make sense out of the blur which ten years ago you could see quite clearly, which is where the fresh pair of eyes I mentioned earlier come in and produce results. Which brings me back to the quandary I mentioned earlier too, for we were most certainly in a quandary which was in danger of becoming a quagmire, but as I was going through the process of gathering information and dates I started to see where we were going wrong with our approach to dealing with some of Sarah's more challenging behaviour. We had become as rigid and unbending in our responses to Sarah as Sarah's behaviour is when things are not to her liking. Simple really, but we couldn't see it until the psychologist got us looking at the 'problem' from a distance. We've still got a lot of work to do, we always will have, but there are a lot less doubts hanging in the air over achieving positive outcomes when we are faced with a bit of challenging behaviour now.

The only thing that still makes me mad is the fact that we had to wait for years for this kind of professional input. How many more carers are out there who have just given up trying to get this sort of help and advice after years of waiting? Now I'm in danger of getting political and that will bring on the mighty, mighty thirst I denied earlier, so I will shut up and leave you alone, I've not only neglected this blog, but twitter as well, better go and say hello, they are not so forgiving over there......

Shed.....

2010-07-06T19:26:00.002+01:00

Caring has been a more than full time job over the last month, we've been through a particularly bad spell with Sarah. It happens once in while, usually when you are starting to become complacent because you feel as if you're on top of the autism. You'd think by now we'd have realized that autism is an uphill climb and you never really get on top of it, you can get so far, but then you inevitably become faced by a sheer cliff wall and you've got to go around it, and when you've got around it you've got to face up to the fact that there is another bloody great hill on the horizon and in no time at all you'll be climbing that one. So you make the most of the downhill slopes and get as much done when you are on level ground as you can.

Our bit of level ground is at the end of the garden. The working end of the garden in other words. Being in a state of permanent financial distress we like to make he most of what we've got, and what we had was an awkward bit of ground which sloped downwards gently from the far right hand corner to the near left hand corner. Now most of it has been leveled, just a few gentle slopes and we've put in the odd step or two, the pretty end of the garden, near the house looks quite nice now. The far end of the garden was more difficult, brambles, oak tree, old goat willow stumps, an abundance of larger than average rocks embedded in more clay than you really need, assorted pieces of motorbike and other odds and ends which may have come off of a Ford Anglia and the odd clump of reeds, which is normal on a Welsh hillside where boggy areas seem to abound in the most unlikely places. That part of the garden has slowly been beaten into submission and has become the working end of the garden. It has a shed and a greenhouse, a variety of cold frames and a couple of raised beds.

As I mentioned, we don't have a lot of spare cash so it was fortunate that the raw material for the shed and greenhouse were lying around, both in our garden and on the adjacent piece of waste ground which occasionally gets blessed with a bit of fly tipping. You'd be amazed at the amount of usable timber that gets chucked out along with the odd three piece suite. I won't bore you with the technical details of the construction of the said structures, the shed in particular is of an architectural design known only the fairies at the bottom of our garden, the greenhouse, being on slightly more solid ground is more conventional if a little eccentric. Even so, I am happy to say that both shed and greenhouse are fit for purpose, the shed houses a lawn mower and a strimmer, all the usual garden tools and implements, numerous plant pots, trays and buckets. lots of tins, bottles and jars the contents of which are unknown to me, string, lots of string and dark corners which I don't venture into. At the moment the greenhouse contains tomatoes, cucumbers, melons, aubergines, peppers, chilies and various other bits of exotic veg that don't survive the vagaries of the Welsh climate. There were pelargoniums and fusias and other over wintering things in there, but they have been shifted to make room for the important stuff.

The cold frames are still full of cuttings and flowers that haven't yet made it into the pretty bit of the garden, the raised beds have got turnips, some carrots, spinach, broad beans, runner beans, sweet corn, cabbages, broccoli, cauliflowers and onions. We had too many leeks and they are now flowering rather more beautifully than the alliums that came up in the early spring! Salad leaves and lettuces are growing in containers here and there.

Due to a bad back, stupid legs ill equipped with knees that won't bend without persuasion and ankles that are definitely not fit for purpose, most of the donkey work is done by Bill, and I am just the supplier of tea etc. at regular intervals. I am also the one that takes all the photos of progress on the horticultural front which is how I come to be writing this post. Whilst participating in the social networking passtime known as Twitter recently, the shed became a recurring subject which attracted a # of its own, personally, I put that down to boredom. So when I was in the garden this morning feeding the fish, opening the greenhouse door and taking in what a beautiful morning it was, it occurred to me that we probably all have our own image of a garden shed in mind, and the chances of anyone having anything close to the right image of our garden shed in their mind were quite remote. So I took a few photos, and here they are, first two of the shed from the only two angles you can see it from, and the second two are of the green house. As you will see, we are not all that into straight lines, weeds are a constant irritant and stuff grows so quick we can't keep up with it. I will end with my usual apology, this time to the real gardeners out there who will probably be weeping at the sight of our veg plot, and the owners of real sheds who will probably have nightmares at the very thought of ours......

Oops! Neglected The Blog...So Here's What I Did During Carers Week...

2010-06-19T18:17:00.000+01:00

It has been an odd few weeks with everything stacked against me sitting for very long in front of the computer, so no blogging, very little twittering and next to no Facebook. Life is beginning to take shape again so blog first..

Five or six weeks ago saw the reoccurrence of a silly problem with my legs. Fortunately just one leg this time, but it involves hanging around with the leg elevated and two weeks of powerful anti-biotics. In the absence of a reliable laptop and the loss of the phone with Wi-Fi social networking was next to impossible and wouldn't have made a lot of sense anyway under the influence of knock out anti-biotics and pain killers. To add to the personal chaos I started a creative writing course five weeks ago, only two hours a week, last session next week.

Of course Sarah being autistic, she doesn't quite get the problem's involved with undertaking promises of longish journeys followed by longish walks when one is not really supposed to be standing up let alone taking on shopping trips, so she hasn't been all that cooperative over the last few weeks to say the least and has been letting the world at large know about it in no uncertain terms. And of course, husbands being what they are, getting him to do much more than make a cup of tea and piece of toast for himself is like asking him if could knock up a banquet for fifty. Hopeless.

Well the leg's starting to get better, should still be resting it most of the time, but that just can't be done. Anyway, Monday saw the start of Carers Week, thankfully Sarah was in respite care for most of the week so I could get on with all the stuff I seemed to have gotten involved with over the week. First was Monday morning going to a training session for social workers and care managers all about how to approach filling in the new carers assessment forms and discuss the outcomes. My personal experience of carers assessments have been negative to say the least, just a box ticking exercise with no positive outcome at all, so I was there to try and convince them that carers are people who do what they do because the welfare of the person they care for is important to them, and that often they have given up their careers and livelihoods to take up the mantle of a carer for the person they love, for no reward and very few thank you's. It had not occurred to several of them that when doing the carers assessment, many carers felt they had to hold back on what they felt or even needed in case this made them look incapable or not up to the job in some way. Social workers are still seen as the enemy in some communities, nosey parkers who don't have a clue about bring up kids on an impoverished housing estate. This opinion still holds in many families that I know of in my area and Social Services has got a major PR job on it's hands to get to a lot of them. Many people misunderstand that when a carers assessment is done it is for the benefit of the carer, to make sure they are getting what they need and to see if anything can be improved, not an assessment of the carers ability which to be frank, is what it sounds like.

Tuesday morning, creative writing course. Now this is great fun and worth going a bit too far on a bad leg to attend. Organised initially by Rhondda Cynon Taf Carers Support Project with the help of Acadami, the Welsh National Literature Promotion Agency and Society for Writers. This little course, which is free for carers, attracted some really interesting people, at least three of whom have actually written whole books but never had the courage or cash to proceed to agents and publishers. It will be the last session next week but a few of us have decided it's much too good a group to be abandoned, so we'll be setting up our own little literary group to meet up once a month and hope to attract a few more people to come and join us.

Wednesday saw the main Carers Week event for Rhondda Cynon Taf in Tonyrefail leisure centre. All sorts of stuff going on and most of the agencies there with their leaflets and freebies and people happy to give information if needed, speeches from councillors etc. a nice lunch and payback time for the creative writers because they insisted we read a few of our poems and shorter pieces on caring to the assembled throng. Being Wales, this went down quite well, had it been anywhere else I suspect there would have been a mass exodus at the mention of a poetry reading! Arrived home with enough energy saving light bulbs to last a lifetime, which have gone into the cupboard with the other lifetime supply I got last year, enough pens to keep us going for a goodly while, more post it note pads than it is possible to use, but best of all, a big bag of fresh salad from a new community food co-op which I shall most certainly be looking into!

Didn't do a thing on Thursday, just sat with the leg elevated like a good girl. Friday was another matter entirely. A free activity day in the Dare Valley Country Park, just for carers. I did suggest that I possibly shouldn't attend this particular event but was told the bus was going to collect me in the morning whether I liked it or not, so I figured I'd better go. First thing to be endured was a 'gentle warm up' out in a field led by a very attractive young man with a fine tan and no comprehension of the difficulty lunges present to women in their very late fifties with failing knees, but he was nice to watch and had lovely teeth. We were then put in teams and did some sort of memory game, my team won and no we didn't cheat. then we had a choice of activities which included abseiling, nordic walking, cycling, archery and orienteering. Hmm...bad leg....opted for archery, never done it before, easy peazy, don't know what the fuss is about, managed to make that last until it was to late to do anything else before lunch, so sat around the visitors centre drinking coffee and taking photographs of the swallows nesting in the nooks and crannies around the building. Surly that is an outdoor activity? Over lunch a small group of the totally exhausted, myself included, chose to spend the afternoon orienteering at a pace dictated by age and injury, at least three of us had done the walk before so knew where the markers were we were supposed to be looking for, so once we'd made it to the highest point, which was obviously the most difficult and fortunately the first part of the walk, the next hour was just a nice gentle stroll in the countryside interrupted by a couple of stiles. All in all a good day out, if a little tiring, and I don't think I did my leg any favours, but on the up side, there were two of us doing the orienteering who are in the writers group and I think we may have enrolled a new member to our little group when it gets started. so a personal achievement alongside the chance that we may have made a few more people aware of Carers and the big part they play in society for very little reward.

That's enough for now, got to go and get some tea ready for the family and then elevate the leg for a few minutes because its starting to ache and I'm fed up with taking pain killers! will try nnot to leave it so long before the next blog, promise.....

In The Garden....

2010-05-27T12:28:00.079+01:00

Such a beautiful morning, the light was almost perfect so I took a few pictures which I would like to share with you. Now before you feel the need to say anything, yes, I know the grass needs cutting and a little bit of weeding would not go amiss, I'm still looking for volunteers on that front:

Now at this point I would like you to be seeing a nifty little slideshow I made with a musical accompaniment, but which sadly seems not to be uploadable. So here are the photos anyway, you'll just have to hum a tune of your own choosing:

Not quite Chelsea of course, but not too bad for Aberdare, though I say so myself. The flowers you can see are poppies, pansies, the blue 'cornflower' is Centaurea Montana, the yellow flag iris is growing in the pond. We can't remember the name of the clematis, last year the flower was snowy white and 6 inches across, this year it has a pink tinge to it and is much smaller, something to do with the weather I suppose. The big purple balls are alliums. The odd looking thing is a Teasle. There was an Aquilga flower in there somewhere, a wild garlic flower hiding underneath some Rodgersia podphylla leaves and some pink perennial geraniums. The bench we never get to sit on has bizzy lizzies in hessian pouches waiting to be hung up when they get a bit bigger. The last images is some Alchemilla Mollis which grow like weeds in our garden but first thing in the morning those little drops of water reflecting like jewels on the leaves are magical.

The music I hoped you were going to enjoy, which seemed appropriate somehow,was Van Morrison, Haunts of Ancient Peace from the album The Common One. And yes, I agree it is very frustrating that the amazon link assumes you will be showing interest from the US and not the UK, but there you go, seems there is nothing I can do about that. Anyway, make of it what you will, enjoy the photo's and lets hope the weather stays good for a few more days and we'll get the grass cut...

It's The Last Day of April.....

2010-04-30T19:54:00.001+01:00

That means it is the last day of Autism Awareness Month. Well, I wonder just how many more people are aware of autism on the 30th April than there were aware on the April fools day? Sad to say that here in Great Britain it is probably very few since the whole of the media has turned itself over to politics and the general election.

There have been a few documentaries on TV around the subject of autism, but unless you already had an interest in the subject you probably wouldn't bother and quickly seek out the channel with the most entertaining film, drama, crime series, sci fi show or whatever to watch, or in my case, to go to sleep to! There has been the odd reference to autism on the radio, but they seem to be in passing and not really anything to do with autism awareness month. It's politics all the way.

I had considered posting a blog specifically on the advantages of an autism awareness month but it occurred to me that I would only be talking to people who are already aware, so not much point really, especially as, as I mentioned earlier, there is a general election in the offing and that is taking up a hell of of lot of time and space!

Those who have strayed into these posts before will know that I am a socialist, I know that is a bit out of style and possibly offensive to some, so I've toned it down a bit and joined the Labour Party. No, really, I have, I've got a membership card and everything. There are two main reasons for nailing my colours to the mast..

Firstly we live in a part of the South Wales Valleys decimated by Margaret Thatcher in the 80's. Whole communities destroyed in her dream of 'No society'. One can't help wondering what the thinking is behind Cameron's 'Big society', I've got a sinking feeling that that they are just different faces on the same coin, and the coin will end up in the pockets of the already prosperous leaving the people at the bottom and in most need with even less. Which leads to my second reason..

The NHS and Social Services. Social care. We all know we are facing cuts in services whoever is in charge because there is global financial upheaval due to the greed and total disregard of anyone but themselves by international financiers and bankers, who if they know of the existence of the NHS and Social Services would probably not understand its importance or approve. They rake in their bonuses and don't give a second thought to anyone but themselves, people with obscene amounts of money will not be affected by government cuts. The people who will be affected are those who depend upon the NHS and Social Services, not only for the services they provide, but there will be inevitable job losses, and there begins an ever decreasing circle.

Ok, enough to say I have a personal axe to grind, we had a small craft business that went to the wall during the last tory government, but it wasn't their fault our first daughter was born in 1985 with autism.
We effectively gave up everything for her, moving to South Wales because a more compassionate political climate in education there meant she did not have to go into a residential school at the age of 5, and her education and welfare could not have been any better served, and we managed to keep her at home and not loose her to an institution, which, by the way, would have almost certainly happened in the tory heartland we were living in when she was diagnosed.

Back to autism awareness, how unfortunate that an election was called right now. This whole month has been dominated by politics and all the bluster that goes with it. I have been seeing things about autism from all the usual suspects on line, lots of stuff on twitter and facebook, I'm ashamed to say I've hardly looked at it, I've been too busy dealing with autism at the coal face so to speak, the first half of this month was a bit dodgy, but glad to report that the last week has been amazing. A fortnight ago we had screaming and violent tantrums, this week we are discussing the size of her fathers belly and what we should do to reduce it, that colouring by number books are pretty cool and the relative merits of decent coloured pencils as opposed to felt tips. She has also confirmed that homemade fishcakes are better than the ones you buy in Asda (Oh yes! I'm good!). She also just indicated to us that she is very fond of the Scaramouche part of the Bohemian Rhapsody, strange girl.

So I'm aware of autism, so are you if you are reading this, all the politicians I've been sending emails to about Autism Awareness, Stand up For Autism and the Don't Write Me Off campaign who have bothered to respond say they are aware, after the ear splitting screams Sarah was practicing last week, most of our neighbourhood are aware! Even our dog is aware, although if it's possible, I suspect she's somewhere on the spectrum too!

My apologies to anyone who is opposed to my political views, but they are my views and this is my blog, so I'm allowed to say Vote Labour if you want a better chance of hanging on to the social care system that we have in place, if the tories get their hands on it the chances are it will be destroyed, and if you are at all aware of autism you will know how vital social care is.

On a lighter note, this has just been brought to my attention, are you aware that we have Star Trek day to look forward to before the election...May the 4th be with you..... and don't forget to go and vote on the 6th, women threw themselves under horses to get the vote, now that's what you call activism, we could do with a few more Pankhurst types standing up for Autism Awareness!

A Little Bit Of Give And Take...

2010-04-09T16:28:00.002+01:00

Feel like I should really say something about the current debacle around a mother of a 5 year old with Downs who found jokes about people with Downs Syndrome and their parents or carers or whatever the politically correct title is for the family and friends of said folks, to much to take and was brave enough to stand up and say what she thought. I can't begin to say how much I felt for her when I read her blog: I live for glitter: Well that was rather unexpected I could give you a list of similar occurrences a mile long that I have encountered over the last 24 years of trying to make life for my daughter and my family as 'normal' as possible. It's all a matter of give and take.

Jokes about disability and difference are commonplace, they are a defense against fear and ignorance, or maybe I've just developed a thick skin. I've been watching the argument raging on twitter. Don't get front row tickets to see an edgy comedian if you are not prepared to be ridiculed, got to admit that was my first thought. My second thought was that she wasn't expecting to actually find herself confronted by comments that hit home as personal and offensive and why should she? she has paid to be entertained, not to be insulted. Back to give and take.

I remember an occasion several years ago now, when some inarticulate young 'chav' girls started pointing and laughing at my daughter while we were waiting in a bus station one evening. They seemed to take exception to her shoes, Rocket Dogs, very trendy at the time, but a trend that had not quite reached Aberdare. Fortunately our bus arrived and Sarah was oblivious to the attempted ridicule. My blood was boiling and if I had had some support to call on I would have turned the tables and ridiculed them. That particular year was a bad one for fashion in Aberdare, awful hair, mostly peroxide, pulled back way too tight in a 'council estate face lift', tramp stamp tattooed on the lower back and a grubby thong emerging from Primark joggers (usually grey with pink piping, see how observant I am!), vacant expression on the face, mouth permanently open, looking as if they have more special needs than my autistic daughter. But let's face it, you still see the odd shell suit out and about in Aberdare and I am still struggling with the concept of bare midriff and pants cut so low you have to keep pulling them up and ridiculously small bomber jackets in the middle of winter, don't these idiots feel the cold? Oh, sorry, was I a bit harsh there? Give and take, give and take.

Since my little girl has been grown up and we go to grown up venues and events we generally only encounter the odd 'funny' look, mainly because people tend to approach Sarah first. In restaurants for instance, who in their right mind is going to talk to the middle aged old biddy when there is an attractive blonde to talk to? Most people cotton on fairly quickly so there is no issue. Give and take in action.

I've spoken here before about the service users monthly disco: Dealing With The Day: Ah, It's The 1st Wednesday Of The Month, That Means Disco. An event that would confound and confuse the sensibilities of any number of edgy comedians. I do believe I made some sharp remarks about the style sensibilities of some of the residents of Aberdare, and in particular the bus station users in that post as well! Being the subject of a bad joke isn't very nice for anyone and I'm pretty sure the good people of Aberdare will be seeking me out and chucking eggs at my windows for thinking their fashion sense is a bit off. But then the sharing of a silly moment or event is an amazingly positive experience. More give and take.

In my twitter bio I say that living with autism is a bit like being in a Monty Python sketch only more surreal. I stand by that. Without comedy what would we have to laugh at? Rhetorical question of course, but I guess you have to choose your comedians with care, knowing how ascorbic comedy can be these days, if I was feeling a bit vulnerable I wouldn't choose the likes of Frankie Boyle. On the other hand, one of the most memorable evenings of my life was spent aching with laughter at the far from politically correct Mighty Boosh live in Cardiff. A bit more give and take.

So, to conclude, (you'll be pleased to hear). The lady who was offended by the bad jokes about Downs Syndrome, the people who have it and the people who care for them, has every right to be offended and to say she is offended, and I would doubt that Frankie Boyle has ever spent any time with with anyone with Downs or bothered to get past the speech impediments he should be grateful he hasn't got, since he probably wouldn't be earning the money he is now by using his voice to ridicule them. I would love to invite him to our little service users disco to experience the fun and laughter that is generated by the very lively bunch of young (and not so young, actually) people with all manner of differences from what is considered normal. We are all just trying to live our lives as well as we can, and I guess that those who have limited or no contact with disability will probably never understand how that disability becomes your life and almost everything you are. This is where give and take changes its meaning, you are given a disability to deal with and your life as you knew it is taken away. So, lady who lives for glitter and is a Mika fan, you have my empathy, my admiration and my best wishes for you and your family. Frankie Boyle, this isn't going to make a blind bit of difference to you is it, you just touched a nerve and it hit the internet, if I had any I'd put money on you performing to packed houses for the rest of your tour. Give and take is the key, what are you going to do about it? If you live with a disability you have to be prepared to be singled out for ridicule, you are supposed to be weak and defenseless, so deal with it. If you like to make bad taste jokes about disability, if you must, go for it, you are hard enough to take a bit of criticism, you're a professional. A little bit of give and take is all it needs.

Some Things I Have Learned This Month

2010-03-25T21:45:00.000Z

Time to post the events of the last few weeks, it has all been very odd and difficult this month, But I have learned quite a few things. We've been dealing with the fallout from all the problems I've posted about in previous blogs regarding care assistants, the unreliability, unsuitability and general bad practice by the service provider. That problem has been resolved, for while anyway. But it took a lot of assertive or demanding telephone calls on my behalf. The most annoying part of that episode was biting my tongue when I was being told that they had found a solution, when all they actually did was uncross some of their wires and do what I suggested they do in the first place! Frustrating though it may be, there is no alternative available and I don't want to rock the boat too much. I'm not fond of the idea of being the dreaded voice on the other end of the phone associated with problems, that is not going to help Sarah in the long run.

It had been decided at least 4 years ago when Sarah started to attend the Day Centre for 4 days a week that approaches would be made to Psychology regarding some of Sarah's more aggressive outbursts, meltdowns, behaviors or whatever you want to call her expressions of sheer frustration when routines get tampered with and the people she is told will 'be there for her from now on' are no longer there. Basic autism issues. As various professionals have succeeded to a point with Sarah, speech therapy for instance, who were a great help with their 'social stories' which we continue to use and are very helpful, they all come to a place where they cannot proceed, and suggest psychology is the next place we go for help and advice. Some, my GP for instance, cannot understand why I should be asking for help regarding coping strategies for Sarah and ourselves when she is in one of her darker moods. Of course they are not living on the side of a volcano, some have only seen Sarah on her best behavior, most people don't think Sarah has a bad side, but seeing is believing and some just don't see. I am of the opinion that the correct approach, whatever that is, when she is at her worst makes the bad times shorter and good times, when she is a pleasure to be with and really good company, longer.

So to cut a long story short, I have been trying to get a referral to psychology for some time now. The problem has always been getting past the care manager, because Sarah has learning difficulties any referrals have to go from source to the disabilities team, to the individuals care manager and then to the department needed. I'm sure I've blogged before about the lack of psychologists in the Cynon Valley so I won't bore you with that, in a nutshell, we are one of the most deprived areas in Europe, let alone the UK or even just Wales, it appears we have a massive problem with alcohol and substance abuse, which is of course dealt with by psych. so they are spread thinly.

Each time something happens with Sarah in the Day Centre that they feel needs to be addressed they contact the care manager, she says she will contact psychology, and that is where it stops. So, a couple of weeks ago I saw an opportunity which I just couldn't resist. I was in the surgery for my usual six monthly blood pressure check and renew the prescription consultation with the Practice Nurse. She asked me how Sarah was. So I told her. She couldn't miss the bloody great bruise on my arm as a result of deflecting yet another attack with a TV remote. (See previous post!) By chance the other practice nurse who deals with the psychology patients...i.e. the junkies and alcoholics in the main, was in the surgery. She called her in, I told her the problems we were having at the moment and she proceeded to tell me there was a new man at the head of psych. and she would get on the phone too him/his department as soon as her clinic was over. This is the most positive thing to come out of this wretched surgery, I wished her luck and went home and tentatively passed the on the news. That was three Tuesdays ago. Three Thursdays ago she phoned me to say that they had taken her referral, but had to refer back to the care manager as it should have come through her. I thanked her for trying and we both wondered where it would go from there.

Well, where it went was quite interesting, later the same day I got a phone call from the care manager who was clearly very pissed off with me, asking what was wrong and what did I think I was doing talking to a nurse practitioner? I told her the truth, that it had come about because of a general chat in the surgery and it was considered worth a try since other approaches had not born fruit. She was not happy, but said she would approve the referral, which left me wondering wether she had even bothered referring in the past. The next day in the morning we had a call from the care manager saying we would get an appointment to see a doctor at psych. within three months. Ooh, a result, we were quite pleased. Monday morning this week brought a telephone call from Psych. saying if I didn't mind such short notice, they could manage a house call the next day. I was rendered speechless. Then I managed to say that would be fine.

Now finally we have a result after years of wondering, asking and getting fobbed off with excuses, Psychological services, in the form of a brace of real psychologists and a clinical nurse, turned up on our doorstep exactly when they said they would yesterday morning. We went through Sarah's progress from conception to yesterday lunch time, pages of notes were taken, we were asked about our thoughts and actually not talked down to, which is first, senior chap chatted to Sarah as an adult, another first. We now have to keep the inevitable diary, not difficult as we have a communication book running with the day centre and believe it or not I keep notes, just need to refine them a bit.

We're not expecting miracles, just a fresh look at how to deal with the more violent outbursts i.e. the stuff that is going to get her into trouble if she isn't careful. Senior chap told Sarah he was going to help her with her temper, and he would come and see her again at home and at the Day Centre. I'm still slightly stunned by this, also a bit concerned about Sarah's care manager, who I am now having doubts about. I am aware of problems within social services care management teams, but I always thought she was pretty good, I quite like her and don't really want to think badly of her, hopefully we will get past this with no bad feelings.

So what I have learned this month is that being assertive on the telephone gets results, proof being that Sarah is at this moment at an Easter party at the Gateway club I was assured was too far away for her to go to a month ago. Also that if you talk to the right person things can happen and don't have too much faith in your care manager. I've also learned that statins are not all they are cracked up to be and are probably best avoided, the GP is is probably the least effective member of the local surgery, I am a year older than I was last month and it is possible to lose your lovely Sony Ericson W705 but get a new sim for a horrible old Samsung D600e with the same number so I don't have to give everybody a new contact number for me, and more importantly, I don't have to learn a new one. The most recent thing I have learned is that slugs are active in our greenhouse....

I'm Just a Tad Annoyed......

2010-02-24T22:34:00.000Z

Written into Sarah's Care Plan, looked at and if necessary adjusted every 6 months by interested parties, is 6 hours per week of being out and about doing interesting and beneficial activities with a care assistant supplied by Social Services

Rhondda Cynon Taff, the area we live in, sees fit to use care workers from agencies and other sources, presumably because it is cheaper. The outfit, which at the moment I will not name, chosen by Social Services to meet Sarah's needs have only been doing the job for 4 or 5 years, long enough to have ironed out any starting up problems you'd think. They originally ran retirement homes and did home visits to the elderly to get them up in the morning, help them with bathing and getting them settled down at night, checking they were taking their meds etc.

Suffice to say, these very capable and friendly ladies and their equally worthy employers know very little about autism. They all seem to have come across it and know the stereotype, but as anyone who spends their lives around autistic people knows, they are all different and surprise surprise, they've all got different needs. Now if a company says they can supply a service, you kind of expect them to come up with the goods. Obviously if their staff are not trained for the task they are being asked to perform, you'd think they would just say 'no we can't do that', but no, they just send them out anyway.

They do not manage to keep the staff they have for very long so there is a constant change of care assistant coming out for Sarah. Change is the operative word here. Change and autism don't go together to well and it has taken us a year of disruption over changing carers to convince Sarah that it's ok to go out with someone she doesn't know too well, leaving me feeling like a proper hypocrite, because I know damned well that I wouldn't go out with a different stranger every week. Why the hell I feel I should be grateful that anyone comes at all I don't know, when to be brutally honest, I'd prefer them not to come at all. I know they will just end up wandering aimlessly around Matalan and eating in McDonalds because there is sod all else to do. And I wish I knew what happens to the request I make at every care plan meeting that Sarah does not eat junk food, which is greeted with nods of approval and placed in the plan, a copy of which, apparently, goes to all care providers.

So today I am livid because Sarah is already having a difficult week, (see previous post) and in the spirit of making these outings more Sarah appropriate we made arrangements last week to swop some hours around so that she could go to a Gateway club which is about a half hour drive away tomorrow evening as this would be of far more benefit to Sarah than wandering aimlessly around crappy shops. Seemed like a damned good idea to me.

The care providers office telephoned me at lunch time today to say that yet another new face would be coming to pick Sarah up at '12.30pm tomorrow afternoon because no one was available for the evening, is this alright?' Sarah has been looking forward to and talking about going to the Gateway club all week and now I've got to tell her that it is not happening. Livid doesn't really come close to how I was feeling after that phone call, incandescent is probably closer to the truth.

Sarah is now a very unhappy young woman, still expecting me to perform a miracle tomorrow morning and somehow get her to the ball tomorrow night, which to be honest is not going to happen. So tomorrow morning is going to be spent on the telephone, probably leaving messages and not actually getting to speak to anyone with the slightest knowledge of what I am talking about but being terribly sorry.

That's it, rant over, got it off my chest. There is nothing more to be said or done on the subject today, thank you for reading/ listening if you got this far. Well done if you did, I would have probably have ducked out 2 paragraphs in....

Nothing Like A Bit Of Contradictory Thought...

2010-02-23T15:28:00.008Z

As I said a couple of posts ago, Sarah doesn't like change and going into respite care for a weekend, much as she enjoys it when she gets there, is a massive change in her routine. If it occurred at regular intervals such as every sixth weekend or the first weekend of every other month, no matter how complex that may sound Sarah would be able to cope with that as there is an element of routine to the event. As it is stands at the moment it all appears random, only three weeks between the last two stays and six weeks before the next. Autism, surprises and random dates don't always go together to well.

So we had the usual upsets and meltdowns and general non cooperation from Sarah from about Wednesday last week, which I detailed in the post: Respite! Oh yes... last week. Well she's home now. Came home yesterday evening after a day at Day Services, where she gave them a very hard time over the absence of her favourite staff member, along with other stuff. in fact a whole page of misdemeanors in her communication book. Of course she was not too happy about us knowing about the trouble she caused during the day but she was also relieved to be home, so we didn't get much in the way of bad behaviour, she just wanted her tea and to settle back into familiar surroundings and familiar things, in fact by 6.30pm she was her normal self, almost... but there is still something going on, sort of in the background.

She has her period, of course! That is always difficult for her, but it will be over soon and thinking about it, the outbursts that are so intense due to PMT should have stopped by now. So I'm thinking this bout of bad behaviour is just to do with respite disruption. This morning she was difficult to say the least, and sanctions are currently in place again... any more bad behavior and Fridays planned jaunt to Cardiff is not going to happen.

But this is the point where I start getting confused. Everything at the moment is as Sarah would like it, period as good as done, home from respite. By some miracle she has completely got her head around the ongoing problem of ever changing carer assistants with minimal knowledge of autism who are supposed to take her out twice a week and are employed by an outfit which also has minimal knowledge of autism (as they are used to running retirement homes and caring for the elderly) and contracted to Social Services in some sort of attempt to save money. And then I remembered the moon.

Now this is tricky, I know some would describe me as an old hippy. Yes, there are huge gaps in my memory of certain events and places I know I was at between 1966 and 1976. But I don't believe in most of what I consider to be hippy dippy stuff like astrology and consider horoscopes to be a load of hog wash. Tarot cards are just a good way of sorting out your thoughts, as is the I Ching. I don't pray to any gods whatsoever. The universe is a mystery and a wonder to me and I like it that way, I cannot get my head around some omnipotent being existing in any way, shape or form and how anyone can possibly be a creationist in this day and age is beyond me. But what about the Moon? It fascinates me, always has.

Here's a photograph I took of the last full moon very early in the morning on the 1st of February, the next full moon is on Sunday 28th February round about 4.30pm GMT I think, so we are in the second half of a Waxing Gibbous moon. Which is bad news as far as Sarah is concerned. This phase of the moon means Sarah will be pretty volatile until Sunday afternoon and I would lay money on her being a much happier and calmer Sarah come Sunday evening.

The problem I have with all this moon stuff is that it makes me feel like some sort of hypocrite. I can't help thinking about all those fabulous gothic tales of Warewoves and vampires and other fantastic creatures of the night all ruled in some way by the moon, and on the other end of that particular spectrum, I've never laughed so much as when I first encountered The Full Moon from The Mighty Boosh, if it ever does turn out that the moon has a voice and any kind of intellect I really hope it's like this:

http://www.youtube.com/watch?v=IK2cfdsgzoQ

And to add another odd dimension to this moon stuff, we started gardening according to the moon last year and had some good results. Something to do with the water table or some such, which actually makes some sense if you consider the tides. So you can probably see my contradiction dilemma, all this lunacy is getting a bit close to the hippy dippy stuff which I left behind years ago.

I will rationalize this whole moon business away to my own satisfaction if no one else's, it just has to be another of those wonderful mysteries I'm never going to get to the bottom of, a bit like Sarah's autism and that is a mystery and a half. So we'll keep our heads down and spend the next few days walking on egg shells, then on Monday morning this week will be history and we will be wondering what on earth

happened to February....

The Camera On Your Phone Is Handy, But....

2010-02-21T12:57:00.000Z

....your proper camera, regardless of age, secondhandsness, and being totally out of date still does a better job. So after waking up to a very miserable looking morning with a slight but thorough snow covering, I took a picture through the bedroom window with my phone, which also doubles as alarm clock/watch, tweeted said picture and went back to bed: http://snapshot.orange.co.uk/ekrjbv

Inevitably I couldn't get back to sleep, and when crossing the landing to go downstairs looked out of the window and saw tiny patches of blue sky, phone/camera/alarm clock/watch still in hand I took another picture and tweeted it: http://snapshot.orange.co.uk/2qyycj

Finally in the kitchen, I fought my way through the detritus of the previous 24 hours and put the coffee on. Dog is doing the doggy equivalent of crossing her legs and dancing about so I open the back door for her and observe that the snow is melting, the sun is shining and the bit of sky directly above me is without doubt extremely blue. So I look around the corner of the house to the view I don't have from any windows and realise I need to get out the proper camera...

But it is way too cold to be outside taking photos when I am yet to be outside a cup of hot coffee, so dog having done what she needed to do and barked at a couple of passing cats we retreat indoors and see what can be seen through various windows. So back upstairs and the landing window, lots of blue sky now and the mist or low cloud is hanging over the river...

Now this makes the day look a lot more promising than the phone camera shot! This is looking more of less south, the previous picture is looking more or less east. Our bathroom window looks to the west and the best views of moody skies (no trees in the way)...

Definitely looking chilly on the other side of the valley, we're lucky over her on our side, we don't get the sun first thing in the morning, but once it gets over the mountain in the first photograph, (we live just less than half way up it) we get the sun all day. Lastly, back into the bedroom, this window looks north, and to be honest, you wouldn't want to see our neighbours collection of off road four wheeled buggy things and his garage belching smoke out of the chimney, just what is he doing in there? Anyway this is what I can see if I look past all the nonsense...

And to me this looks positively spring like. I did take another photograph of the frozen ponds in the garden, but to be honest it was a little more depressing than the phone picture so you're not going to see it! Anyway, the sun is still shining and the snow is still melting and the dog is still barking at random cats and I really need to refill the coffee mug. It's just been pointed out to me that the weather forecast for next week is for more snow, so when I've posted this I think I'll get an online grocery order done, just in case. As pretty as all this snow has been, I'm getting a bit tired of it now and if I was any good at sliding on ice I'd be at the winter olympics not struggling on and off of busses with bags of shopping. Enough, where is that coffee...

Respite! Oh Yes....

2010-02-19T17:10:00.000Z

We are looking at a weekend without Sarah. She left for the Day Centre this morning with her weekend bag, will go to the respite care house for the weekend and come then back as usual on Monday evening after Day Centre. Unfortunately the build up to this happy morning started on Wednesday morning with pathetic mumblings about a 'sore throat'.

We've had a rocky couple of days during which an innocent bystander would have thought there was bloody murder going on. Fortunately for me, it's unlikely that being threatened with a television remote control will actually do a lot of damage. Sarah's first strike with the new weapon of choice came as a surprise, I really cannot remember what had occurred to make her lose it to that extent, and I wasn't aware of the weaponry, I put my hand up to deflect the incoming blow and somehow she caught the back of my hand with the edge of the remote. I should really say the back of my fingers, more specifically, somewhere between the knuckle and the first joint, more or less where your wedding ring should be if you hadn't taken it off because your arthritis was playing up. The swelling has gone down now, I don't think she heard any words she'd never heard before but she did observe a dance which is probably quite new to her which involved some jumping up and down with complex arm movements, jazz hands and a bit of howling.

That was Wednesday. Thursday should have been plain sailing, swimming in the afternoon with the relatively new carer whom Sarah has learned to trust, a nice lady who we all like. I get a phone call to say she won't be available for a couple of weeks, and they will be sending along another new face who will have another new face with her for reasons that are far to complex to go into now. This post is not about the inadequacy of the service provider contracted by social services, I did several of them last year, I thought we had overcome the difficulties. I should have known better. So two new faces turn up at the door 15 minutes early. Sarah is already a tad unhappy at itinerary changes, but fifteen minutes early? She is not going anywhere until we reach the right time, which is 1.00pm. So I spend 15 minutes chatting about what she might or might not want to do, and no I'm not expecting them to have her for the full 4 hours alloted to her and I ask what they know about autism. Well the one that smiled a lot but only managed monosyllables looked a bit blank at that question. The chatty one who seemed to be in charge, has a neighbour with a 6 year old autistic son. Well I suppose that's a start.

After a brief encounter with the remote control and a fair amount of bribery, Bill and I eventually persuade her to go out, with the new faces. So off they went in the snow down to Asda for a sausage roll and a cup of tea, luckily the rest of Day Services seemed to be there as well so the trip was a success although Sarah is understandably still not happy about the change. She spent the rest of yesterday winding herself up over details, generally being disagreeable and non cooperative.

She carried on in that vein this morning until at 8.00am with just 45 minutes before transport arrives she threw the happy switch in her mind and I was allowed to pack the bag. Her breakfast of choice this morning was Crackerbread with too much butter and cheese and a big mug of tea. She had cheered up so much 8.30am that she wanted me to take a photo of her breakfast to put on her computer. I have no idea why but there it is over on the right, and it is on her desk top for when she gets back. After all the stress she puts herself and us through for at least two days before respite breaks, a very smiley Sarah couldn't wait to get going when the bus arrived.

So while I was putting the breakfast picture on her computer I thought it would be a good time to swap the keyboards from my eMac and her iMac. For reasons I am not aware of she has.. no, had, a nice full size almost silent Apple Pro keyboard. She has mastered the mouse, but I don't think she has even attempted to use the keyboard. What a waste! I was using a squashed up little keyboard which must have come with an iMac at some time in the past and with which I have spent more time correcting typos than actually producing readable text. I'm not going to tell her, I'm going to wait and see if she notices, she has obviously never used it, I've got a feeling it is one of those objects that she just doesn't seem to see.

Anyway, Sarah has got a good weekend in front of her, last month someone had managed to get some tickets for the Britains Got Talent auditions at the Millenium Centre in Cardiff, and during her next stay in April they are going back to the Millenium Centre to see Diversity and I know not who else, not my cup of tea at all, but Sarah loves it. I don't think they have anything quite that exciting set up for this weekend but she does enjoy just being there and with the people knows from Day Services.

Happily we have got a relatively stress free weekend all to ourselves, we won't do anything special, just glory in the ability to do whatever we are doing without having to bother about what anybody else is doing, going to do or need to have done. and if Sarah kicks up a fuss about this really quite nice keyboard which I have been bonding with during the creation of this somewhat rambling post, I think I might just assert my authority and confiscate the remote controls....

With One Hand Waving Free...

2010-02-18T23:15:00.008Z

This is one of my favourite photographs of Sarah, she was eight or nine years old when this was taken on a glorious day at a magnificent location with Sarah completely enthralled by the ocean.

Below it is my favourite verse from my favourite song by Bob Dylan. For me the words and the photograph are made for each other.

Then take me disappearin' through the smoke rings of my mind,

Down the foggy ruins of time, far past the frozen leaves,

The haunted, frightened trees, out to the windy beach,

Far from the twisted reach of crazy sorrow.

Yes, to dance beneath the diamond sky with one hand waving free,

Silhouetted by the sea, circled by the circus sands,

With all memory and fate driven deep beneath the waves,

Let me forget about today until tomorrow.

Hey! Mr. Tambourine Man, play a song for me,

I'm not sleepy and there is no place I'm going to.

Hey! Mr. Tambourine Man, play a song for me,

In the jingle jangle morning I'll come followin' you.

Might Be A Good Time To Roll This Out Again

2010-02-03T09:39:00.000Z

This isn't mine you understand, you've most likely seen it before It's been rolling around for years in one form or another. I just found it again in a bunch of saved emails from over a year ago and don't ask why I've got emails going back that far, I don't have a sensible reply to that question.

So with apologies for not crediting the originator....

Here is a simple explanation of world affairs by examples of economic models.

SOCIALISM
You have 2 cows.
You give one to your neighbour.

COMMUNISM
You have 2 cows.
The State takes both and gives you some milk.

FASCISM
You have 2 cows.
The State takes both and sells you some milk.

NAZISM
You have 2 cows.
The State takes both and shoots you.

BUREAUCRATIC
You have 2 cows.
The State takes both, shoots one, archives the other, and then throws the milk away.

TRADITIONAL CAPITALISM
You have two cows.
You sell one and buy a bull.
Your herd multiplies, and the economy grows.
You sell them and retire on the income.

AN AMERICAN CORPORATION
You have two cows.
You sell one, and force the other to produce the milk of four cows.
Later, you hire a consultant to analyse why the cow has dropped dead.

A FRENCH CORPORATION
You have two cows.
You go on strike, organize a riot, and block the roads because you want
three cows.

A JAPANESE CORPORATION
You have two cows.
You redesign them so they are one-tenth the size of an ordinary cow and
produce twenty times the milk.
You then create a clever cow cartoon image called 'Cowkimon' and market it
worldwide.

A GERMAN CORPORATION
You have two cows.
You engineer them so they live for 100 years, eat once a month, and milk themselves.

AN ITALIAN CORPORATION
You have two cows, but you don't know where they are. You decide to have lunch.

A RUSSIAN CORPORATION
You have two cows. You count them and learn you have five cows.
You count them again and learn you have 42 cows.
You count them again and learn you have 2 cows.
You stop counting cows and open another bottle of vodka.

A SWISS CORPORATION
You have 5000 cows. None of them belong to you.
You charge the owners for storing them.

AN INDIAN CORPORATION
You have two cows. You worship them.

A BRITISH CORPORATION
You have two cows. Both are mad.

NEW ZEALAND CORPORATION
You have two cows.
The one on the left looks very attractive.

AN AUSTRALIAN CORPORATION
You have two cows.
Business seems pretty good.
You close the office and go down the pub to celebrate

SURREALISM
You have two giraffes.
The government requires you to take harmonica lessons.

So Here's What I Think About Vaccination.....

2010-02-02T14:17:00.005Z

Ever since the GMC confirmed to the world that Dr Wakefield wasn't quite as honest as he would have us believe, the anti vaccination lobby seems to have gone into overdrive with their support for him and his ilk. Unfortunately they are also becoming somewhat shrill and a little prone to exaggeration, but that is to be expected, at the back of their minds they must surly realise that they are being duped into false expectations of cures and 'recoveries' with dubious treatments and therapies. I notice that there seems to be a line drawn by some, a very feint line, but a line nonetheless, between autism and vaccine damage and I suppose it has to be said that the symptoms do appear the same.

When I was a child I caught measles, I was lucky to get through it with my life and eyesight intact, I had to spend months in a darkened room, I was very ill and lost almost 6 months of schooling, missing school was alright until I got my eyesight back and they kept sending me books! My best friend didn't survive measles.

I don't remember much about the whooping cough, and what I do remember is too horrible to talk about, it's making me feel a bit queasy just thinking about it. I do know that my family didn't think I was going to survive. I lost two class mates to pertussis that year.

There were four kids in my class with leg braces due to polio.

I didn't get the mumps, quite pleased about that, but I did have scarlet fever which is probably why I get sinusitis to this day, and this will make you laugh, I had a bad reaction to the smallpox jab, had a fever and a very sore arm. A small price to pay for the eradication of a killer disease.

German measles was a breeze, just had to stay at home for a couple of weeks, I was too young to know about Congenital Rubella Syndrome, all I had was a mild rash which had gone in a few days, no other symptoms, I had no idea of the risk of major defects in babies born to mothers infected early in their pregnancy, CRS is the main reason a vaccine for rubella was developed. Many mothers back in the 50's who contracted rubella had suffered miscarriage or still birth, and if the baby survived the infection it could be born with severe heart disorders, blindness, deafness and goodness knows what other organ defects. My Mum and one of my aunts both had babies born with heart defects, my little brother, Keith, died after two days, my cousin was stillborn. Sound grim doesn't it? You'd think I was bought up in the third world, not a South London suburb in the 50's.

But that is what is facing the next generation if the wishes of the anti vaccine lobby are granted. And it is not as if there wasn't autism around back then, off the top of my head I can think of half a dozen contemporaries that would be candidates for the autistic spectrum these days. You will have to excuse the language here but we didn't have political correctness back then, there was the special school that all the spastics, mongols and retards went to, tucked away on a quiet street behind a dense hedge so as not to upset anyone. Back then the 'handicapped' were kept out of the public eye, hidden away so as not to offend or upset anyone.

Don't get me wrong, I know that children have suffered vaccine damage, I have a cousin who must be almost in her 40's by now who suffered brain damage after a whooping cough jab, these things happen, and it is worth bearing in mind that the diseases we vaccinate against can cause brain damage in a previously healthy child if it doesn't kill them first.

I can't help thinking that the children of the people who are expending so much time and effort disrupting vaccination programmes and looking for cures would be served so much better if their parents were to calm down, take a breath and consider guiding their children into adulthood. Autism doesn't have to be a disaster, look hard at yourself and I guarantee you will find a bit of autism tucked away in some corner of your mind, we all have that potential.

Perhaps that single mindedness is what prevents people from seeing the broader picture. Who knows.

I'm going to leave it at that, I've probably upset enough of you now, but we are all entitled to our own opinions and the one you just read is mine. After all this time, as long as my daughter is happy, and she is most of the time, I am happy. Like every autistic person I know, she can be infuriating, confusing, confused and downright irritating, but then so can my husband and one or two people I know who work for social services and don't get me started on that prat who lives round the corner and complains about our poor long suffering old dog! I'm leaving you with a picture of Sarah I took a couple of days ago, who'd want to change this?

So, Due To The Weather....

2010-01-20T10:27:00.002Z

This last Christmas and New Year holiday season has been somewhat extended. Snow kept Sarah at home for the week leading up to Christmas, and more snow in January meant she couldn't get to the Day Centre for more than one and a half days in the last two weeks! So far so good this week as far as the weather goes, although as I type the snow is falling again. It's not settling on the roads, or in the garden thankfully, but further up the mountain we live on the side of it is taking on a distinctly Xmas Card look, I am trying to believe the meteorological office who say it will be gone by the end of the day.

So poor Sarah has been stuck at home for the best part of a month at the worst possible time of year for her.

It's her Birthday a week before Christmas. It is very hard for Sarah to cope with the trappings of her own birthday, she understands the whole cards, gifts, telephone calls, birthday cake routine and likes it applied to other people, and she is damned useful to have at hand when you need to be reminded of an exact birth date coming up, since she asks everyone she meets how old they are and when their birthday is and then amazes them by telling them what day of the week it is going to fall on next and if she's in the right mood what day of the week they were born on and some how never forgets these facts. But when it comes to her own birthday she just wants to get it over and done with, you can see the discomfort of the whole event in her face and it takes a lot of parental clowning around and tomfoolery to lighten her up!

Christmas just means more presents, dinner at the wrong time, and little sister home for a few days, great for all concerned except Sarah who is just going along for the ride. She already knows what is in the presents wrapped up under the tree because she has been very specific all year about what she wants, the list has started already for next Christmas. These are not all big expensive items, she will hear a song on the radio and say she wants it so I make a note of it, download it, save it in a special Sarah play list on iTunes and then burn a few Cd's come December. If you ask her what she wants it is always practical stuff like nighties and pyjamas, she had a red handbag this year that she was very specific about, but I don't think she would have even considered such a thing but for the fact that a strap came adrift on the bag she had been using. If something breaks or goes wrong, regardless of the time of year, if it can't be replaced immediately she always says she'll have it for Christmas or her birthday, and yes, I admit to taking advantage of this as the year progresses. Watches are the only exception, but they are a blog post all of their own, in fact I'm pretty sure I did one with photos last year! She doesn't actually cope to well with surprises so we avoid them and as long as she has a pile of presents to unwrap, she knows what she is getting and no one has more than her, she is happy.

What she isn't happy about is the breaks in routine and the cancellation of events because of the weather. This latest run of cancellations started in late November when a birthday disco was cancelled because of torrential rain and a hurricane blowing making the venue impossible to get to, we did get to the regular monthly service users disco in early December, but the Christmas disco was snowed off. Regular disco snowed off in January, along with the re-dated Christmas disco, and of course the Day Centre had been closed more or less completely since 21st of December until Monday this week. Sarah doesn't like the snow, she can't walk in it with any confidence. So she has been stuck at home getting cabin fever! When Monday and the transport arrived we foolishly thought we were headed back on track but no, she changed her mind about going the minute I opened the door and took a lot of persuading to get on the bus. I get a phone call at 9.30am from the Day Centre saying she wants to come home, can I come and get her.

I don't have a car, I explained to them that it's a two bus journey to get to them and I would be at least an hour getting there. She must have been giving them a really hard time because I was told to hold on for a second and then told they would bring her back in one of the centre's mini buses. She was back home by 10.00am. I don't think Sarah, for all our efforts at preparing her for a return to normality, was able to cope with what had become a change from what had become the norm. Once she had settled back to being at home and calmed down we had a bit of a chat and decided that what we needed to do was lay down some rules for getting her up and out with as little stress as possible in the morning from now on. We went through it step by step with her, inserted a bit of humour and as of yesterday we have a new routine which Sarah likes (but unfortunately requires getting up an hour earlier!) and things do seem to have returned to normal. There is some good come out of all this, not the snow, the being stuck indoors..

As far as reading and writing goes Sarah has never been interested, I don't think she saw a good reason for bothering and she does not like to be told how to do things, she tends to learn from watching and then having a go, which is a long slow process because she will not accept help. This is very frustrating but the way it is. We used to get messages back from school saying her reading was improving, but what was improving was the number of words she recognised, not her reading. But during our snow lengthened Christmas and New Year holiday Sarah has been occupying herself with matching the names of channels on her TV with the TV listings magazine and then writing them down in a notebook, she is making some connections she's never made before and I think she's quite pleased with herself. We don't interfere with what she is doing and she's not asking for help, we only found she was doing this by accident and haven't spoken to her about it. My guess is that she will come to us with the knowledge she has gained at some time, probably when we are least expecting it. She does bring Cd's and the like to us to tell her what some words say, song titles and names of course and alternative or just plain bad spelling, they are all being added to her lexicon. She is really putting a lot of time and effort into it and seems pretty pleased with herself about it. All this adds to her communication skills, she has started to use more appropriate words in conversation and we are left wondering if being snowbound for a couple of weeks every now and again might not be a bad thing after all...

Snow....

2010-01-06T09:38:00.003Z

Here are some photographs I took this morning through an upstairs window... if you think I'm going out in this to take any more, you've got another think coming!

And here is one I took of the garden out of the back door, and you needn't think I'm venturing much further out that way either!

Who Knows Where The Time Goes...

2009-12-17T16:16:00.004Z

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.

2009-11-24T17:39:00.003Z

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

2009-11-10T17:45:00.004Z

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

2009-11-01T14:33:00.012Z

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.

2009-10-26T18:19:00.005Z

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

2009-10-14T14:02:00.008+01:00

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.

2009-10-11T09:46:00.009+01:00

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.

2009-10-04T14:18:00.006+01:00

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...

2009-09-28T16:59:00.005+01:00

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...

Hedgehogs...But Probably More About A Dog In The End, With Apologies To All Hedgehogs.

2009-09-21T20:32:00.017+01:00

The inspiration for this blog came to me this weekend when I was quietly Twittering and found I was being followed by @ErnieHedgehog. As I Tweeted at the time, I do occasionally talk to @EliotTheBad who is a cat, I don't think I'm talking to many other animals, possibly a couple of dogs, I'm pretty sure I see a Great Dane lurking in my time line sometimes. We've got a dog, she's never really shown any interest in Twitter though, she is getting on a bit and prefers sleeping. So anyway, chatted to the hedgehog for a while, followed back to be polite, and then thought it may be a good time to turn off the computer and get some sleep.

Sleep is one of the things I have found gets, more difficult as you get older, like running for the bus, carrying your shopping uphill, seeing much at all without your glasses on, kneeling, I could go on but I will just get depressed. While struggling to get to sleep I had hedgehogs on my mind and the more I thought about hedgehogs the more hedgehogs I remembered. The first were fictional, one was a milkman in a 'Little Grey Squirrel' story, then there was Mrs Tiggywinkle, who did the washing and ironing in Beatrix Potter's peculiar world. Through all my childhood, I have no recollection of seeing one in the flesh, or prickle, in my south west London suburb. I'm sure there must have been some around but our paths never crossed.

So amazingly, I didn't see a real live hedgehog up close until I was living in Kensal Rise in North London. I was living with one of the loves of my life in a bedsitter above the only Asian corner store in an almost completely West Indian community. It was the big room directly above the shop with windows on two walls, It would have been quite nice if the roof hadn't leaked, the cooker had worked and the fireplace had been usable. I am unable to dredge any memory up of the bathroom, so I guess it was so awful I've blocked it out completely! I do seem to remember a lot of mice there though, and a very active cat called Simba. When she wasn't catching mice she slept on the sacks of chapatti flour, lentils and rice just inside the shop door. It was 1971, Health and Safety hadn't been invented back then. At night the streets belonged to the hedgehogs. There were not so many cars back then and nobody drove around those streets fast because regardless of weather conditions everyone was hanging out of the windows to chat with other drivers or pedestrians, and the cars were so old most couldn't get up to much more than a brisk walking speed.. it was a very laid back area. Usually on a Thursday evening a good reggae groove would start up in a house nearby, and keep going through to Tuesday morning, there was a tendency to park the cars in such a way as to make it difficult for the Old Bill to get close with their squad cars and Black Maria's to break up the party, as I say... a very laid back community. The hedgehogs were safe, you would see them scurrying about all over the place. Found out there was a lady a couple of streets away who took them in and nursed any that were injured or unwell, everyone new that if you found a hedgehog in distress, you just took round there and popped it through the hedge into her garden. A happy area for hedgehogs and hippies alike, unlike Richmond in South London where I moved to after leaving Kensal Rise.

Richmond on Thames, very nice. We lived by Richmond Hill, and just down a bit from Richmond Park. It didn't take long to realize that it was all fur coats and no knickers. That is, it all looked very smart and affluent, but it was all show, there was little of substance and not a lot of soul. Loads of hedgehogs though, big gardens, a royal park, ideal really except the folks here tended to drive their BMWs and Mercedes with the windows up and air conditioning on and little regard for anything or anyone besides themselves. Hedgehogs did not fare well in the streets on the slopes of Richmond Hill. I'm almost ashamed to say I did alright there for a while, but that is a different story.

Ten years on finds me with a different love of my life in the Forest of Dean, a little place called Ruspidge. Oh boy did we have hedgehogs there! Along with sheep, ducks, chickens, foxes, badgers and a Siamese cat. None of these beasts belonged to us, they were just regularly in our garden, and sometimes our house. The Hedgehogs lived under a shed quite close to the kitchen door. There was a step down into our kitchen, an odd arrangement which caught a lot of our more urban visitors out, mainly because the light switch was on the opposite wall and there were no street lights, I don't need to go on do I? The most alarming part for the unwary entering the house in the dark, was the hedgehog community which liked to gather by the kitchen door, if you didn't know they were there, opened the door and stepped in, the unsettling feeling you had around your feet as you struggled with the lock would just fall in with you and scatter around the kitchen like an assortment of balls.

Hedgehogs are not the first thing that come to mind when you are face down in the dark on the kitchen floor, conscious of the presence of other life forms and probably with a couple of drinks inside you. Trying to stand up avoiding contact with unknown invisible balls is impossible, that is the point at which you become aware of the prickly nature of the beast, and how wonderfully warm they are to the touch and that they make a funny little noise that I cannot describe. Fourteen in one night was the record. Fortunately their defense mechanism makes them fairly simple to evict.

Another ten or more years on finds us in South Wales and by now we've go two kids and a dog. The dogs name was Dodger, and he was a Lurcher. In his case that means mum's a border collie and dad's a greyhound, there is a very old photo of him in his favourite place which was most of the sofa because he was definitely a long dog, at the top of this hedgehog reminiscence ramble!

He didn't much like hedgehogs, they wouldn't play, they just rolled up in a ball and pricked his paws when he tried to move them, he was a bit uncomfortable for days after he tried to pick one up in his mouth, so whenever he encountered a hedgehog, usually on the front lawn, he stood over it and barked at it, big deep mournful woooffffs. The only other time he used this voice was at a sunflower. We thought he had lost the doggy plot but on investigation it was a bunch of wasps up to no good on the stem. A wasp had stung his mouth a couple of years earlier when he had snapped at it, so this must have been his 'you hurt my mouth' mantra. I like to think of him racing around in some doggy Valhalla chasing rabbits and not being bothered by spiky spiny or stingy beasts.

But I could now do with a bit of hedgehog input, Dodger passed away a good few years ago, and Toffee is getting a bit too old to too much damage in the garden, so we are growing vegetables. Trouble is, we are fighting a pitched battle with slugs, possibly every known variety of slug inhabits out garden, we use nematodes, slug traps sharp sticks, eggshells, you name it, we've tried it. We've got some mighty big frogs and they are doing their bit but we do not have any hedgehogs, we see them coming down the lane beside our garden but they don't come in, I've even seen a couple by the back gate, the simplest place to enter the garden from, but they do not come in.

My guess is that the huge great lump of a hedgehog that Dodger would not leave alone on our front door step was one very important hedgehog and never got over the indignity caused by the need to shut the dog up as it was 1.00am and bedroom lights were going on. Youngest daughter was about 10 or 11 and had to be called up to assist as the dog was being stubborn. Yes I know she should have been in bed at that hour, bad parenting and all that, but she has just graduated from university so it didn't do her too much harm. Anyway, protected with heavy duty gardening gloves it was decided that I should pick up the hedgehog and relocate it while Hannah distracts dog and gets him in the house with doggy treats. The excitement and glee on Dodgers face as I picked up the hedgehog took us by surprise, and all four of us ended up inside the house. I've no idea what the dog or the daughter thought I was going to do with the hedgehog indoors, but now Dodger is walking to heel as he had never done before, or ever again, and curiosity was getting the better of Hannah and me, and Sarah was getting involved. So us humans all had a good look at the hedgehog ball, and said encouraging things to it, thanked it for it's patience and noted that the dog had lost interest and taken up residence on the sofa, so I took it out and placed him or her under a hedge and wished it all the luck in the world. If hedgehogs have a collective consciousness or memory, I suspect the Cwmbach hedgehog community have learned to pass our house with caution and a good turn of speed.

So I'd like to take this opportunity to apologise to the whole of hedgehog kind for any inconvenience or distress I may have caused or been a party to over the years, and assure you a warm welcome to our garden, where the head gardener is making positive noises about hedgehog houses and I can promise you all the slugs you can consume. We really would appreciate your company...

Sunny Day...Cardiff Bay.

2009-09-12T20:36:00.013+01:00

No words, just images of journey down to the bay, the bay and the journey home...

Sundown, Yellow Moon.

2009-09-11T13:55:00.003+01:00

So, we are having a few nice days, sunshine blue skies, a little bit of heat on your skin. What a relief after the relentless gloom and dampness of the rest of the Summer especially after that exiting, hot, sunny and strangely not too dry spring.

It was Disco night for Sarah on Wednesday, it will be the last one we go to in daylight this year. If you want to know more about the disco, I posted a blog back in July called 'Ah, It's The 1st Wednesday Of The Month, That Means Disco.' It is not an ordinary disco, I'll leave it at that.

Anyway, when we boarded the mini bus the sun was shining, I should be more descriptive, the sun wasn't just shining, it was reflecting on every surface in a majestic sort of way, In an elemental way, it was a magnificent evening, in a disco way it left much to be desired, but that is totally subjective because of my devastatingly good taste in music which does not include disco. The sun had gone down by the time we were boarding the mini bus for the journey home.

As we rounded a corner, quite high up at the back end of Cwmaman, I saw the moon, a waning gibbous moon to be exact. Very low in the sky, just sitting on top of lower hills on the other side of the valley, and it was yellow, and the sky was the most intense dark blue. Quite, quite beautiful. And anyone who knows me will know what jumped into my head at that moment.

'Sundown, yellow moon, I replay the past

I know every scene by heart, they all went by so fast

If she's passin' back this way, I'm not that hard to find

Tell her she can look me up if she's got the time.

The last verse of Bob Dylan's most heartbreaking love song 'If You See Her, Say Hello.' And instantly, all the irritation of the awful sound system in the Working Men's Club, not to mention the appalling music being played on it, floated away and I was left sitting in the back of the bus transfixed by the vision of the yellow moon and the song, which I know inside out, playing in my mind. And to anyone who knows me who may be reading this and is probably thinking I should get a grip, I've just got one thing to say, 'Either I'm too sensitive, or else I'm gettin' soft.'

That's it, nothing else, just wanted to tell you about the sundown and the yellow moon, but while I'm here talking about the song, there is a line in the first verse, the last line of that verse in fact, that is a bit of an enigma to me, so can anyone shed some light on this one for me, what exactly is he getting at here? 'She might think that I've forgotten her, don't tell her it isn't so.' always leaves me wondering....

'While The Springtime Turned Slowly Into Autumn,

2009-09-04T16:02:00.006+01:00

So here we are in September, the 4th of September. What happened to August? I mean, it just sort of fizzled out, it's like it was never there this year. It's making me think of these lines from Idiot Wind by Bob Dylan, taken completely out of context of course, but elegantly saying in a few lines what I can only prattle on about in my clumsy, untutored and tortured way...

'I waited for you on the running boards, near the cypress trees, while the

springtime
turned Slowly into autumn.'

While the springtime turned slowly into autumn, a whole season somehow lost. Of course in Dylan's case, it had little to do with the weather and all to do with the heart, in my case it is to do with the desperate speed each year moves at, so that a summer can be lost and yet still leaves you with the feeling of being in an everlasting spring which somehow sneaked a summer past you when you were looking the other way, and is chuckling about the whole debacle while it's calling up autumn.

That's it, nothing else to say on the subject. Except to leave you with the last verse of Idiot Wind, which seems somehow apt since it is getting cooler, and the lack of summer as we knew it has had less impact on garden produce than you might have expected. And yes, I know Dylan wasn't thinking about home grown veg when he penned these lines..

'Idiot wind, blowing through the buttons of our coats,
Blowing through the letters that we wrote.
Idiot wind, blowing through the dust upon our shelves,
We're idiots, babe.
It's a wonder we can even feed ourselves.'

So Anyway, The Screaming Has Stopped.

2009-08-24T09:54:00.007+01:00

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....

Hash Tags, Twitter And The NHS.

2009-08-12T20:13:00.009+01:00

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.. http://www.youtube.com/watch?v=spI4Aetab3w 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...

Rain, More Rain and Graduation, a Bear and Some Snails.

2009-07-19T14:15:00.009+01:00

Oh dear, almost a month has past since I last put any words on this page. I would love to say I have been incredibly busy, going out doing things, meeting people and so on, but unfortunately it wouldn't be true. I'd also like to say that I had been busy in the garden, but that wouldn't be true either since there has been so much rain in the last three weeks, at least a third of it was underwater. Fortunately the green house is on slightly higher ground and by leaping a few puddles and streams we could get there relatively dry to harvest tomatoes, cucumbers and an awful lot of reasonably hot chillies. Other vegetables are growing in raised beds which are pretty well drained, so no real damage to the brassicas and beans, roots crops are all looking good and the sweetcorn is something to behold. Rocket and lettuce grow like weeds. The only things that have struggled this year have been the roses.

Well that's what the garden has been doing. Sarah has been being Sarah, she did put us through it a bit about a month back, but she seems to have worked through whatever was bothering her and she is back on form again. Bill has been being Bill, a law unto himself, seemingly unaffected by the progress of the world around him. I sometimes wonder if he knows how lucky he is! Me, well I'm just sitting here writing this blog, what the hell more do you want!

I did get away from the happy home for a night last month for Hannah's graduation from Uni. Nice train ride down the Bath, back to the motherland, so to speak, met Hannah at the fudge shop she works in, watched her working, something I have never done before, brand new experience watching daughter actually producing something. That sounds a bit sarcastic, It's not meant to, but It really was the first time I'd seen her doing anything on her own. I know she's been doing it for a while now, but there I was watching it happen. As if I needed proof of her capability to find her own way in the world.. She has been doing that for years, since before she moved up from junior school! That is your unfortunate lot if you are the sibling of a disabled child, you need to learn to be independent earlier than most of your peers.. But actually seeing her in work was amazing, all the natural confidence I knew she had was in place, I actually felt the weight of worry over her coping with her independence lifting, And yes Hannah, I know I shouldn't have been worrying, but It's a mother thing, it happens, just ignore it and anyway it's gone now. It started raining about mid afternoon, It didn't really stop until I left Bath the following day, and most of the time you had to call it torrential.

So, Thursday, travel down to Bath on train, meet Hannah, spot of lunch, inevitable shopping which inevitably involved shoes, back to Hannah's house, meet new house mates, off to local for food and a beer, meet more of her mates, altogether, a good evening. Rain eased off a bit for walk home, which will be forever etched in my mind as the walk that involved more snails than I thought it possible to be on one road, and so many different sorts and sizes of snail, fascinating. the local was called The Bear, a fine establishment.

Friday, graduation day, two other girls living with Hannah are also graduating, tension a little high in the morning as they were both trying to organize parents to be in the right place at the right time and they seemed to be coming from all directions in more cars than seemed necessary, and all three of them were debating about what to wear and what to do with their hair, seemingly oblivious of the fact that an all encompassing gown and a seriously funny hat was going to cover everything up. Added to these worries of course, was the fact that Hannah was off to Tolpuddle for the Martyrs Festival as soon as the graduation ceremony was over, and supplies had to be purchased and left at the right place for a quick getaway. This involved an incredible amount of walking about but was achieved and everyone was more or less where they should be by 2.30 for the gown fitting, hat adjusting and photographing and general embarrassment that is the norm before the ceremony. Whoever the god of academe is, he/she graciously allowed the rain to stop whilst all this was going on and it didn't start falling again until most of the guests were in place in the huge marquee where the event was being held. As the students began to process in the wind got up and by the time the faculty were going through there was something close to a typhoon occurring outside. Fortunately it was a substantial and rather posh marquee with proper glass doors and fans and sort of chandelier lights, but even so, it was shifting a bit in the wind and the roof and the fancy drapery lining were flapping about quite noisily. There was upwards of 600 people in this marquee and I'm pretty sure most of us were thinking how bloody stupid we were all going to look sitting in a field in the rain when the big tent finally took off. Needless to say It didn't.

Cutting a long story short, Hannah got her degree and went off to celebrate in a field in Dorset, I got a lift back to Cardiff with the parents of one of Hannah's friends, and the least said about that the better, nice people though. So there you have it, The two best days I've had for some time, and certainly the best two days of the last month which is probably how long ago it is since I posted a blog that I actually sat down and wrote. To celebrate coming to the end of this and as a reward to anyone who makes it this far, here is the picture that sums up the whole graduation day.

You want a Sandwich?

2009-07-08T16:55:00.002+01:00

I just love this short film by Aliakbar Campwala. It means a bit more to me because I have daughters, one with autism, and the conversation we watch in this film is so real to me, well, what can I say, just watch it and enjoy it because there is a lot there to enjoy, it says so much more than I can.......

It's Saturday. Ok, We'll Go Down To Cardiff.

2009-07-05T13:55:00.006+01:00

It's not far, only about 20 miles, shouldn't take long should it? And there are options, drive for instance. We don't run a car for numerous reasons I won't go into, but it does allow me to go all greener than thou every now and then and we save a lot of money! So we don't drive. By far the best means of transport from Aberdare is the Train, In fact the first station out of Aberdare is a ten minute walk straight downhill from where we live, incredibly convenient and a cheap day return is about £5.00, a real bargain, if you are lucky and the signals are with you and there hasn't been an outbreak of random vandalism, you are there in less than an hour. The other alternative is the bus.

I understand that the fare on the bus is somewhere close to £8.00 return, which is why most people go for the faster and more comfortable option of the train. Now I expel a deep sigh, Sarah has a free bus pass because she has a disability and because she cannot possibly travel alone her free bus pass allows her companion to travel free as well. So, when Sarah and I go out we travel by bus. We don't long journeys very often, she is at the Day Centre most days during the week, buses are hard to find on a Sundays, so Saturday is our more distant travel day and Cardiff is where Sarah likes to go.

So yesterday we went to Cardiff, for free, on the bus. I know, it's free and I should be grateful, I try to be, honestly I do! First we have to get to Aberdare. The bus stop only a few yards from our front door and there are 4 every hour, this bit is fairly simple depending on Sarah's frame of mind, fortunately yesterday it was good, she had her new camera with her and was set to photograph the day. This is just a 10 to 15 min ride, we are at the bus station in no time. The bus for Cardiff is waiting for it's moment to come into the empty bay and there is a bit of a scrum developing of passengers all wanting to be first on. It is a full size bus, this lot are not going to even half fill it, but the blue rinse brigade are out in force and determined not to be beaten to first place, the bus pulls in and they struggle on one by one and occupy all the seats toward the front, the old chaps are the next, they always go for the middle section and a few climb up the couple of steps to the elevated section at the back. Ah, the back of the bus, where all the rebellious types hang out, and where we always end up because Sarah likes sitting at the back, she likes to be able to see everyone, actually, to be precise, she sits at the very back but I have to sit in front of her, she like to give the impression that she is traveling alone, although I spend half the journey looking back answering questions. It is worth noting at this point that hardly anyone has parted with any cash to board this bus, a good 75% of passengers have got a free pass of some sort. The remaining paying customers are an assortment of teenagers and the odd mother and child. There is little or no room on this bus for pushchairs and the like, though some do struggle on, I don't envy them.

And we are off, winding our way up and down the very narrow roads that lead through Abercwmboi, Mountain Ash, Penrhiewcieber, an area mysteriously called The Tynte, Bryncynon then Abercynon on the way to Ponypridd. When they built these endless terraces nobody had any idea that every single house was going to own a car, some even two, and there is no room for garages and drives here, front doors open onto the street, and terraces don't have many gaps in them! So we have cars parked down both sides of the road and we're in the biggest bus it is possible to have here in the valleys. Bus stops are difficult to locate, and people get on and off the bus at the most convenient places for them, this is all very confusing for a Londoner like me, accustomed to London Transport, it wouldn't occur to you to ask the No31 to stop at the end of your street, or even outside your front door which happens regularly here, all very confusing. So progress is slow, very very slow.

There is a particularly bendy bit of road on a hill coming out of Penrhiewcieber and going up towards The Tynte, cars parked right round the bend on the other side of the road, and a barrier to stop you dropping on the the pavement on the left, so there only room for one vehicle to pass at a time. Yesterday as we started going up this hill bending round to the right and then the left with a few cars following, we were faced head on by a similar bus with only a couple of cars following coming down the hill. there were no parked cars to hinder progress further up the hill as the road is too narrow and has no houses anyway, so the difficult job of reversing a bloody great bus back up a hill on a sharp bend, preceded by the reversing cars began and it took a bit of time mainly because of traffic coming down the hill meeting traffic coming up the hill backwards apparently being followed by the back end of a bus. Brakes on and both driver now in the road weighing up the situation, older chap driving downward bus looks thoroughly cheesed off, younger chap driving our upward bound bus has something of a determined look in his eye, like this is not going to beat him. Passengers all mutter encouragement as he climbs back into the cab. A the bit of precision driving on his behalf and we have squeezed through the obstacles and are on our way to spontaneous applause from passengers and grateful toot toots from waiting car drivers and the extraordinary Welsh calls of "Well done Drive" since all bus drivers in Wales are mysteriously called Drive.

So up the hill, along another windy narrow street stopping for passengers getting on or off and we are in Abercynon where we descend an almost vertical hill with a sharp left into a hairpin followed by a sharp right onto a single lane iron bridge across a very rocky and fast flowing River Cynon which is a long way underneath us on its way to meet the River Taff at a very turbulent confluence you catch a glimpse of whilst rounding the previous hairpin bend. A couple more tight corners and we are on normal roads where traffic can go in two directions on the same stretch, and everybody's blood pressure returns to normal. It is downhill all the way through Abercynon, doing it on a bus is akin to being on a roller coaster with the risk of it becoming a log flume at the end. And now we are out of the Cynon Valley and on our way to Pontypridd. We've been on this bus for over an hour so far. Distance wise, we are a little less than half way to Cardiff, nerves are pretty much shattered but we are still alive. We are finally on the A470, we come off of it to go into Ponty bus station then get straight back on it again and don't stop until we get to Cardiff, this bit only takes 25 minutes, traffic willing.

In Cardiff we do whatever we need to do, this week it was taking photographs, have some late lunch and then catch the bus home, yes the whole damn journey in reverse, although Abercynon is a lot less exciting going uphill, the smell of overheating engine is a bit of a worry sometimes. It is quite a relief to get on our little local bus service home. Needless to say, I am completely shattered by the time I get in and vow that next time we are going on the train, until next time comes along and Sarah wants to go on the bus and I think, well, it doesn't cost anything, and I say "Yeah, alright, Cardiff it is. Got your pass?"

Ah, It's The 1st Wednesday Of The Month, That Means Disco.

2009-07-02T07:59:00.010+01:00

I've been threatening to write this one for over a month now, in fact two Discos have happened since I said I'd be talking about it, most recent last night. Now these discos are the highlights in the social calendars of most of the service users in the Cynon Valley.

I should point out that by Service Users I mean those in the community who are using the social services day service, ie. Day Centres, supported work or education opportunities or any of the other labels that are put onto establishments keeping adults with disabilities/learning difficulties etc occupied during the day. It's where you go when you've finished with education and are no longer the concern of Children's Services. There is a whole other blog there which will wait for another day.

Also at this point it is worth remembering that the Cynon Valley was one of the most deprived regions in the EU a few of years ago. Not a thing to be proud about but it did attract a bit of EU funding for a few community projects and help to keep the local colleges open. If you want to learn how to be a hairdresser, beautician or car mechanic, Aberdare College is the place to go. I don't know what happens to all the mechanics, but Aberdare and its surrounding towns are awash with Beauty Parlours, Nail Salons, Hair Cutters and Fake Tan Emporiums, strangely, the folk I see out and about don't seem to take advantage of these services. Aberdare bus station still looks like Chav Central meets Skid Row. This is by way of saying that this is not a well off part of the world and the lack of wealth is reflected in the quality of your basic mobile disco.

So, the disco... Getting there... It is held in the function room of a workingmens club at the farthest end of the most out of the way part of the Cynon Valley. (It's where the Stereophonics come from, I refer you to one of their early numbers, 'More Life in a Tramps Vest' which pretty much sums up the area.) A couple of mini buses do the rounds picking up those who don't have their own transport. The local bus service goes up there every 10 mins. or so during the day, but if you want to stay out later than about 6.30pm you've had it, and that's another whole blog that must wait for another day!

Mini bus arrives and Sarah an I climb aboard. Not many on tonight, probably a bit too hot for some, also this is a good time to point out the age range we are dealing with here. One lady who has been bringing her daughter to the disco ever since it started back when dinosaurs roamed the earth, is in her 80's her daughter is 60 next year. Sarah at 23 is the youngest on the bus. So, are you getting some idea of what sort of evening we are in for? If you've never been to one of these functions you will not have a clue!

Quite a gathering outside the club when we get there, it's a nice evening, people just hanging around chilling outside because it's a bit airless inside, but we've got a minibus load of hard core disco goers here and we're going in! Navigate the one armed bandits and we're there, DJ's playing Amarillo, ok so Tony Christie was at Glastonbury this year, so was Tom bloody Jones come to that, who will doubtless be next up... yes it's Delilah, oh joy, so it looks like the play list is much the same as it has been for the last 5 years that I know of. It is your average wedding reception set. About an hour in I start to loose the will to live. There is also food available, really healthy stuff like burgers or sausages or deep fried chicken with chips. They all like this, the discussion of what to order starts on the bus. Round about the time I am loosing the will to live the burgers and chips which it was decided we should all have arrives. After eating this loosing the will to live is replaced by the fight for life against incredible cholesterol intake, and a double Jack Daniels hidden inside a coke is the only thing left that will maintain equilibrium.

The dance floor is packed, there is a little crowd with downs syndrome who know all the Steps dance routines, another group are particularly fond of doing most of the set pieces from Grease, this one can be very entertaining once you've topped up your alcohol level. Of course all this is done around the half dozen wheel chair bound CP people and the small contingent who get around with zimmers and walking sticks. Then there are all the carers helping the less able by showing them how to dance, or by holding them up. Then there are the ones who like to go at great speed suddenly and diagonally across the floor, sometimes on their knees. Of course I am biased, but I just love watching the representatives of autism out there on the floor doing there level best not to see one another, or anyone else come to that! There are four regular autistic 'dancers', it seems that they individually choose a spot on the floor, not too far in but definitely not near the edge and usually near a corner, and just stand, Duke on Edinburgh style with hands behind their back glancing at each other for signs of movement. Imperceptibly they move around the floor, but always keeping the same distance, like a huge square frame moving round the dance floor. Sarah sways a bit some times, and will join in when someone takes her hand and they do the childish sort of dancing most of us gave up when we were about 7yrs old. One of the others has sudden bursts of movement, then nothing, like he's playing statues, I fact that is how all the autistic dancers dance except for one, who was obviously taught by his dad. To give him his due, he's got a wicked sense of rhythm and is probably the best dancer in the room!

This monthly event is the only opportunity some of these folk get to let their hair down, not a lot of parents go although they are welcome, but there are a remarkable number of staff from the Day Centre who give up their evening to bring a few clients with extra special needs, and of course, there is a bar. Some of the older gentlemen just like to sit and have a pint or two, this is their opportunity to do just that. This is what independent living is all about, going out with your mates and having a good time. It is not the good time I would choose, but for this lot, well they'll be talking about it until the next one.

Should probably say, yes, there is a big glittery disco ball going round on the ceiling, no strobes for obvious reasons, but a few flashing coloured lights, and it is just a tad too loud for the acoustics in the room, but then quite a few of the punters are a little hard of hearing, so that's ok. It costs £1.00 each to go in and there is a raffle half way through, and the DJ reads out the list of birthdays for the month. Then we all sing happy birthday, regardless of whether the people mentioned are there or not, and make sure we all make a note of of the date for the next disco, heaven forbid anyone should forget! By 10.00pm the place is empty, but for some those three hours really were the highlight of the month.

So forward to the 5th of August, when hopefully it won't be so hot hot hot, there got that stupid song out out my head, you can carry it around for a bit now...

Carers Week.

2009-06-07T15:13:00.006+01:00

So here we are in the middle of carers week, as a carer I am pleased that such a thing exists, a means of informing the world of the huge number of people who have given up there careers and livings to care for some one else.

Of course, as soon as you have children you find yourself in the world of caring and you do it willingly because they are your children and you quickly learn that childhood is a fleeting thing, you look away for a second and it is gone, and the tiny bundle of noise is grown up, self assured and making its own way in the world.

But it doesn't always work like that and the empty nest that so many parents dread never happens, and you can be left with the ones that don't fledge for one reason or another and you look on in wonder at your contemporaries who are so sad that their offspring are finally ready to leave and live there own lives thinking "You don't know how lucky you are!". By now, under normal circumstances, we would be looking forward to retirement, having holidays without the kids, being on our own again. But that is not going to happen.

Sarah will never be able to look after herself, she couldn't possibly manage a healthy diet by herself, she knows how to put her washing in the washing machine, but she has yet to work out that you need to put in detergent and set the dials and press the buttons. That bit is going to take the best part of another three years of showing her one step at a time over and over again before she will know how to make the washing machine actually wash your clothes, and she still does not know that clothes must be dried before you put them on, simple stuff for most of us but for Sarah, with all the other stuff going on in her head this series of actions is incredibly complex.

She has no idea about money, We've tried to give her some understanding of how it works by getting her to pay for things herself at our very understanding local shops, so she understands that there is an exchange of money for goods, but she cannot get past the coins all being pennies and notes are just random pieces of paper. I think she is beginning to understand what a pound coin is, but has no concept of the different values of the rest of the coins. Her first transaction involved getting change so for Sarah, subsequent transactions must also involve change, she thinks they are just giving her back the money she has paid them and doesn't like it if it isn't forthcoming. School, college, the day centre and ourselves have been tackling this one for years now, but she is not having any of it, we've gone down the shape route, we've tried colour, we've tried getting her to look at the numbers on the coins all to no avail.

We know all about independent living, and would love Sarah to be able to make use of it and make herself a life outside of the home she has here, but it is an uphill struggle and she does not want to live anywhere else, she likes living with us. God only knows why, we not the easiest people on earth to live with, we have to admit to being both headstrong and a little eccentric, and definitely no good at housework. On the upside we are good at cooking and gardening and seeing the funny side of almost everything. But this is her home, it is where she wants to be and at the moment it is where she belongs.

Above all this, she is our daughter, she is part of us and we love her to bits. Granted, our lives would be different if she had not been autistic, the choices we made would have been different and we would in all probability be a lot better off than we are now! But we did what we did with Sarah in mind, We moved to a place that showed more respect to her needs than the place we lived in, and in the process lost our livelihood, but as she grew we realised that caring for her took a lot more care and time and effort that one parent could give and stay healthy, while she is out during the day at school or whatever, you get done what needs to be done, and when she is home you are 'on duty' and because she doesn't sleep too well and tends to wander sometimes at night you work in shifts. This all becomes normal and everyday, we don't even notice we're doing it any more.

Trouble is the wages for this job are just £53.10 a week. This is called Carers Allowance, you are allowed to earn a bit more on top, but it isn't much, and we have to claim income support to make ends meet. Not exactly a living wage. We don't run a car and we don't smoke, I can't actually remember the last time Bill and I went out together, and to be honest, I don't think Bill has got the confidence to go out and be sociable with strangers any more, because when you have someone who is different from most other people your friends tend to slip away. They just don't know how to speak to you, so you end up avoiding them to save the embarrassment. The only people you talk to are other carers, because they are the only people who really have a grasp of why you may have to say sorry but I've really got to go now because something has to be attended to which is just not going to wait. You are constantly on call. And no, we haven't had a holiday together for years. Just the odd couple of days and usually either one or the other of us, and usually just a family visit.

So there you go, that is my reason for wanting to let the world know about Carers Week. I notice it will be discussed in parliament today, and I was with a group at a function in the Welsh Assembly yesterday to mark the week, but this is all just talk and discussion, it won't get close to the nub of the matter which unfortunately is money. Improving day services and the extension of respite care would go along way to helping people like us, giving us a bit of breathing space, but these services are being cut at the moment. So, if the local authorities can't afford to look after them carers have to look after them at home, so perhaps the government could look again at the carers allowance and just increase it a bit, just so that we could have a little bit of a life beyond caring, I don't think it's too much to ask.

Ok, rant over next post will be about the service users disco as promised before, honest.......

Ok, It Got Better!

2009-06-02T08:01:00.005+01:00

Goodness! How things change, yesterday I was talking about the worst side of Sarah's autism, the side we have being seeing most of for the last few weeks. When she came home from the Day Centre yesterday she was giving us nothing but the best side. According to the communication book we maintain with the Day Centre staff she had a good day and was cheerful and cooperative.

She has just had a week away from the Day Centre as they were closed for half term and the last information we had from them wasn't too good, she was being as challenging there as she has been here. It is always a worry when she displays similar behaviours at home and at the Day Centre, as a rule she keeps her two personalities for two different places. Sorry that's not clear, I should explain that if we are having a hard time with her at home, the chances are that she is being an angel with everyone else. This also works the other way, all through school and college and now at the Day Centre and classes she attends from there, if they are finding her difficult we were getting the best of her.

I should also explain the communication book. It's a bit like a hand written twitter in an reporters note book, which goes back and forth every day in Sarah's bag. I tell them how she is at home and anything else I think they may need to know, and they do the same in return on a daily basis. Short and to the point, unlike this blog!

So this morning is all good, everybody seems to be happy. Onward with the week..... Next post will probably be about the monthly Day Service Users Disco. Don't laugh, this is serious stuff!! Alcohol is consumed, music is ghastly, dancing is something to behold, wheelchairs and zimmers something of an encumbrance on the dance floor but overcome. Everyone should be made to attend one of these, they would see a completely different aspect of disability/learning difficulty or whatever label you want to put on someone not the same as you!

So We'll Get On With It...

2009-06-01T09:16:00.006+01:00

I've not said a lot about Sarah, her condition, her behaviour, her just being Sarah for a couple of weeks. The reason is that she has been exceptionally awkward, no, I should have said difficult, that would be more honest. We have had some days that have left us reeling, knowing that whatever is done is going to be wrong.

This is nothing new, it happens every now and again with no warning and can last a couple of months sometimes. She appears to be working something through in her mind, and because she cannot express it beyond herself... probably because the autism would incline her to believe that we know what she is going through and what she is trying to work out... she is is beside herself with rage.

She gets so frustrated with whatever it is that is bothering her at the moment you can see her almost graphically reaching boiling point. She shudders and shakes, gets redder and redder, becomes less and less coherent and then it all culminates in some very loud screaming and a little bout of hitting her head or biting her arm, although I have to say, there is some remarkable control involved with the self harm bit of this display, which leaves me wondering sometimes how real the rest of the display is. It could just be the best way she knows of expressing her frustration with us for not knowing what she is so concerned about, brought about because of the absence of sufficient language or rather, the inability to use the language in a neurotypical way.

In between all this there are moments of sheer joy. We spent a day in Cardiff last week, went to the cinema and saw Star Trek, had fish and chips in Caroline Street, got back to Aberdare to late for a bus home so had to get a taxi and the whole day was brilliant, nothing appeared to bother her at all. The next day was the absolute opposite as she took her frustration out on me. I've got a couple of little bruises as reminders!! She is always mortified when she gets it so wrong she hits me and I always feel so sorry for her when it happens, thankfully it is a very rare event.

This sounds awful doesn't it? But it's not all that bad, and we are used to it. It is important to say that it is not continuous, and of course it is manageable. It wears you out, that's for sure, and there are the odd moments when I consider throwing the towel in and calling social services and visiting the doctor on my own account instead of the fruitless visits on Sarah's behalf, only to be redirected back to the community nurse, who then sends us back to speech therapy. Sarah is 23 and has not seen a doctor, that is GP or specialist, concerning her autism, since she was 10 years old. We were seen to be coping and that seems to be the criteria used when assessing need.

So we get on with it. We know it will stop soon, and when she left for the Day Centre this morning you would not have thought the last few days would have been possible, perhaps we have turned the corner on this one, we shall see...

Ducks... Thats All...

2009-05-20T13:29:00.002+01:00

There is really no good reason for showing you this, but I thought it was just wonderful, it made me smile, and thats really all that is needed some days..... Enjoy..

Sunday Morning Rant (While Listening to the Blues)

2009-05-17T07:24:00.005+01:00

It is Sunday morning in the middle of May, early, it's raining and its a bit chilly. How terribly British that is. Normally I would have the radio on now to go with my cup of tea but I really don't want to turn it on because it means listening to the news. Usually this doesn't bother me, but I've had enough of it this week. So here I am, huddled in front of the computer early Sunday morning with a nasty wind picking up outside and listening to a Murphy's Saloon Blues Podcast, which is putting me in a better frame of mind.

The reason the radio is no good this morning is because it is not only the news that is banging on about MPs fiddling their expenses, it seems to be finding it's way into almost any live programme and everybody has got something to say about it. I'm going say my bit on the subject, and I should point out at the offset that if I were to fiddle my expenses it would be called benefit fraud.

So you can tell, whatever I say is coming from a position somewhere near the bottom of the pile, there has been no place in our lives for luxuries like holidays and cars for a few years now, our personal financial downturn, recession and credit crunch predates the current world wide problem, if any one had bothered to look down and ask I could have told them what was coming.

If I am to believe what I keep hearing, everybody is now short of money, feeling the pinch loosing their jobs and their homes and can no longer afford to run their cars. Everybody? I don't believe that, what everybody has done is jump on the bandwagon. Who in Britain has ever been willing to say exactly how much money they have coming in? Times are bad are they? Well I see a lot of comfortable two car families around here and this is by no means way a well heeled area. Sure, shops have closed down, not surprisingly they are the shops that never appeared to do much business anyway, anybody still missing Woolworth for its range of goods or is it just nostalgia for Pick'n'Mix?

As a nation I don't think we've ever been that willing to disclose our income and we all know that an 'Englishman's home is his castle' and some still surrounded by moats apparently, apologies to the rest of the UK, but you know what I am getting at. I feel awkward writing about this, I'm no expert, obviously, and I am coming from an obviously biased position, ie. it can't really get much worse for us, we hit the bottom a few years ago, we've become accustomed to living hand to mouth. It hasn't done us any harm, in fact it has made us stronger. A good old fashioned socialist upbringing probably helped as well, life was a lot harder and more impoverished when I was a kid!

So a bunch of well educated middle class social climbers who've got themselves elected into the ruling class are fiddling their expenses, big surprise, what do you expect, they've been doing it for years, power corrupts, I thought we all new that. I note that this little round of indiscretions dates back to some rule tweaking in the eighties, remind me, who was in power then, oh yes, no surprises there then.

The sun has started to shine, that's a surprise.

How is it we know all the grisly details of MP's expense claims? Why, the press and the media of course, who else but the two bodies so well known for never having putting together a spurious expenses claim in their collective lives! Ok, I know they are not all bad, there are good members of parliament and there are good journalists and wouldn't it be nice if they could get together and put a bit of balance back into government and the reporting of it. Too much to hope for I guess, too many vested interests and too many axes to grind I suppose but it is certain that some other crisis or atrocity will occur sometime over the next couple of weeks and all this will take a back seat, remember swine flu?

That's it, got that off my chest, now I can get on with banging on about the weather, slugs and the appalling provision for adults with autism, all far more important subjects than a few journalists feathering their nests by reporting on a few politicians feathering there nests....ah, Muddy Waters...

More From the Garden. (While it Still Looks Good!)

2009-05-12T13:06:00.005+01:00

Dealing With The Whole Damned Weekend!

2009-05-11T10:44:00.007+01:00

While I'm still in a photographic frame of mind, I'm including a couple of pictures I took of Sarah with my telephone over the weekend, She had the sun in her eyes so I jokingly suggested she put on a hat, her dads gardening cap was on the table, so she put it on!

This was one of the quieter moments, she has been more than a little cheesed off with me for going down to Cardiff, almost two weeks ago now, to see her sister and go to a Bob Dylan gig. Although she is autistic she is very sociable and a big crowd at a gig wouldn't bother her in the least, but what would bother her is having to stand in roughly the same place for longer than 15 minutes, she would wander off to look for a seat, I needn't go into all the problems that would cause, you can imagine it.

As an aside, if anyone knows how you can get tickets for the seated part of the Cardiff International Arena (only a small part is seated for any Dylan gig I've been to there, but seated throughout for The Mighty Boosh, and when I got my degree! Hannah dead jealous 'cause I walked across that stage once.) please let me know, I've phoned for tickets within seconds of them becoming available only to be told all seated tickets are gone.

Sarah would love to go to an event like that, she loves being in the cinema or the theatre, and she loves music but it's really tricky if the seating is in doubt and a lot of money wasted if we have to leave! So anyway, that's why she didn't get to see Bob Dylan which she really does want to do, and is understandably a bit miffed about it. So all the old behaviors which we try to contain come spilling out and it can all get a bit explosive.

This weekend we have had the usual non cooperation, but this time there was no real talking her out of it, so a moody trip to the supermarket and a lot of moaning about waiting for buses. a lot of aggravation about food and what time we eat it, which escalated to screaming and stamping feet and lame attempts at self harm, just for effect. Tempted to say 'and that was just me', but to be honest if it had gone on for much longer it may well have been me, Then yesterday evening her period started and she calmed down. P.M.T. and autism are not a good mix.

I'm not going to make a list of the awkward, tense, potentially dangerous, potentially violent and the downright depressing stuff that occurred over the weekend, these things have sort of become the norm after all this time, and we have become pretty adept at getting past it quickly, we have strategies worked out for dealing with each of the more upsetting manifestations of severe autism, and it is fortunate that the worst of these only occur in the home, not when we are out and about. She has had a couple of outbursts at the day centre which were cause for concern but fortunately we have a good rapport with the staff there and some of our strategies were put into place and now she respects the boundaries set up and rarely goes off the rails there. She knows she is safe at home so is a bit more prone to knocking the boundaries about, which is understandable, after all Sarah is the one who is living with the autism in her head all the time, she can't get away from it, we can. We can just bugger off down to Cardiff for a day and spend time with her sister who is doing all the stuff she could have been doing a couple of years ago if it hadn't been for the autism. Sarah knows all this, it is nothing short of miraculous to me that she stays as composed as she does, and the days that she is a joy to be with make up for all the difficult weekends we've ever had, and there have been a few! And I think she is entitled to get thoroughly pissed of with me once in a while, it wouldn't be natural if she didn't. So here's the other picture I took while we were enjoying the humour around the hat keeping the sun out of your eyes.

Some Pictures of the Garden and Another Full Moon.

2009-05-10T01:15:00.013+01:00

Ok, now I'm going to behave like London buses, I don't blog for a few days and then 2 or 3 will turn up together. Too bad, that's the way it is. The weather has been nice for a couple of days so I thought I would take a few photos' of the garden. I do it all the time and use them as reference as to how things are coming along year after year, for instance the lilac is a week later than last year, and 2 weeks later than the year before. A small, useless but fascinating fact. Sometimes I think I know where Sarah gets her autism from! So here is a picture of the lilac...Quite nice, but not as good as the tulips, these are pretty special this year considering the abject failure of tulips in our garden until now...

Nice colour I thought, then I found this little Aquilagia not far from flowering. When we lived in The Forest of Dean these grew like weeds everywhere, but here they struggle. This is a good month earlier than last year...

We have a pitiful display of about half a dozen Blue Bells, they struggle up under a tree every year and I have never taken a successful photograph of them, something to do with the blue, so this years photo has been somewhat tweaked, here it is...

The sleeping woman is a planter that fell over some time ago and we forgot about. There is not much else of any interest really, just the normal stuff waiting for it to get a bit warmer. We have got a wonky bird bath that is attracting a lot of attention and I caught this Sparrow in action...

So there you have a few bits of our garden. I mentioned the Full Moon in the title, happened to notice it whilst putting this post together so I shall finish up with a photo of that, tweaked a bit of course, I can't leave anything alone! Next post will be about Sarah because the Full Moon means my life gets a little easier for a couple of weeks since Sarah's moods are linked to the Full Moon...