Wednesday, 24 February 2010

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....

Tuesday, 23 February 2010

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:

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.... 

Sunday, 21 February 2010

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

....your proper camera, regardless of age, secondhandsness, and being totally out of date still does a better job.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

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

Finally in the kitchen, I fought my way through the detritus of the previous 24 hours and put the coffee on. Dog is doing the doggy equivalent of crossing her legs and dancing about so I open the back door for her and observe that the snow is melting, the sun is shining and the bit of sky directly above me is without doubt extremely blue. So I look around the corner of the house to the view I don't have from any windows and realise I need to get out the proper camera...
But it is way too cold to be outside taking photos when I am yet to be outside a cup of hot coffee, so dog having done what she needed to do and barked at a couple of passing cats we retreat indoors and see what can be seen through various windows.  So back upstairs and the landing window, lots of blue sky now and the mist or low cloud is hanging over the river...
Now this makes the day look a lot more promising than the phone camera shot! This is looking more of less south,  the previous picture is looking more or less east. Our bathroom window looks to the west and the best views of moody skies (no trees in the way)...

Definitely looking chilly on the other side of the valley, we're lucky over her on our side, we don't get the sun first thing in the morning, but once it gets over the mountain in the first photograph, (we live just less than half way up it) we get the sun all day. Lastly, back into the bedroom, this window looks north, and to be honest, you wouldn't want to see our neighbours collection of off road four wheeled buggy things and his garage belching smoke out of the chimney, just what is he doing in there? Anyway this is what I can see if I look past all the nonsense...
And to me this looks positively spring like. I did take another photograph of the frozen ponds in the garden, but to be honest it was a little more depressing than the phone picture so you're not going to see it! Anyway, the sun is still shining and the snow is still melting and the dog is still barking at random cats and I really need to refill the coffee mug. It's just been pointed out to me that the weather forecast for next week is for more snow, so when I've posted this I think I'll get an online grocery order done,  just in case. As pretty as all this snow has been, I'm getting a bit tired of it now and if I was any good at sliding on ice I'd be at the winter olympics not struggling on and off of busses with bags of shopping. Enough, where is that coffee...

Friday, 19 February 2010

Respite! Oh Yes....

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

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

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

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

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

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

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

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

Thursday, 18 February 2010

With One Hand Waving Free...

This is one of my favourite photographs of Sarah, she was eight or nine years old when this was taken on a glorious day at a magnificent location with Sarah completely enthralled by the ocean.  
Below it is my favourite verse from my favourite song by Bob Dylan. For me the words and the photograph are made for each other.

Then take me disappearin' through the smoke rings of my mind,
Down the foggy ruins of time, far past the frozen leaves,
The haunted, frightened trees, out to the windy beach,
Far from the twisted reach of crazy sorrow.
Yes, to dance beneath the diamond sky with one hand waving free,
Silhouetted by the sea, circled by the circus sands,
With all memory and fate driven deep beneath the waves,
Let me forget about today until tomorrow.

Hey! Mr. Tambourine Man, play a song for me,
I'm not sleepy and there is no place I'm going to.
Hey! Mr. Tambourine Man, play a song for me,
In the jingle jangle morning I'll come followin' you.

Wednesday, 3 February 2010

Might Be A Good Time To Roll This Out Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You have two cows.  You worship them.

You have two cows.  Both are mad.

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

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

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

Tuesday, 2 February 2010

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

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

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

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

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

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

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

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

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

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

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