Everything Was Going So Well......

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....

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.

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. 

   

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...

Turning The Tables...

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....

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.

A Head Full Of Quandary....

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......



  

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....

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

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...

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....