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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunny Day...Cardiff Bay.

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

Sundown, Yellow Moon.

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

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

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

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

'Sundown, yellow moon, I replay the past

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

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

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

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

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

'While The Springtime Turned Slowly Into Autumn,

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

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

springtime
turned Slowly into autumn.'

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

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

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