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

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....

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)...

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

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...




 

Elephants, Not Surprisingly, Big Subjects...

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

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...

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.....

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...

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

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.

Shed.....

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...

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.....









         

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

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...

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

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....