Tuesday, 31 March 2009

"But Mum, I CAN'T SLEEP!"

Just published last blog, looking forward to getting into nice warm bed and a few hours sleep, doing the rounds of windows and doors, unnecessary stand by lights and all the other stuff you have to close down, lock down or just plain turn off before you can go to bed when I hear Sarah descending the stairs. This is never a good thing, when she goes to bed she usually stays there unless some thing is very wrong, I'm now assuming that something is wrong.

Me.. "whats up Sarah"
Sarah.. "I can't sleep"
Me.. "Never mind, I'm coming up to bed now, you'll soon settle down"
Sarah.. "But Mum, I CAN'T SLEEP"

You have just seen the last full sentence I uttered until 7.00am this morning, a good 6 hours since I put up previous post and Sarah told me she couldn't get to sleep.

She told me she was scared of practically everything in the universe, but I'm not convinced by the sideways look I get when she tells me she is frightened by car lights on the ceiling when there are no cars passing her bedroom, the noise, when it is completely silent, (for a change!) and the shadows. I will concede that a late 50's guitar/drums combo could be a bit intimidating, but I don't think that's what she meant.

She finally went into her room, still protesting, and I went to bed. Just dropped of to sleep when awakened by the centre light going on and Sarah announcing to the world "But Mum, I CAN'T SLEEP". Since I had heard it before it didn't come as much of a surprise to me, but It was the first time for Bill and with the light coming on at the same time it must have come as a bit of a shock. Now there are three of us who are unlikely to see a full nights kip.

So Bill goes through the "What's up Sarah" routine with similar results, difference being it was in a higher pitch which was hurting the ears and the squirming about thing had started. This isn't a good sign, it's a behavior that goes back to when she was just a toddler, and just to upset any "MMR causes autism etc" people, predates any immunisation. There are certain times when you cannot touch Sarah, she hates hugs and cuddles if the time isn't right and she hasn't instigated it, she does not know how to just put up with it, a thing which most of us learn early. You must remember those awful moments as a child when some ancient and strange smelling relative wants to pick you up and slobber on your face, my personal horror was the awful tasting lipstick that seemed to linger long after the bizarrely painted face had retreated along with the bony fingers that were supposed to be tickling you. Childhood trauma leading to issues in later life? Me? No, just a long memory. So I think I know where Sarah is coming from with this squirming about thing, if you keep everything moving they can't get hold of you, and it is part of her personal autism. Every person with autism presents with different obsessions and quirks that are all their own. She is in a place that we are not going to be able to enter, and this is going to go on until something shifts in Sarah's mind to allow us in to lend her a hand to sort it out. For now, she is cutting herself off from us, but is still desperate for reassurance and a bit of company.

So the rest of the night is spent with either Bill or I sitting in her room with her until she makes it clear we should leave and then going back in with her when she comes into our bedroom demanding attention. Somewhere around 5.30am she decided she wanted to get out of the night clothes and dress for the day centre, slowly from there it started to get better. She didn't want me to get her clothes out for her, which I usually do, but fished yesterdays clothes out of the laundry basket and by 7.00am she was calm and fully dressed with no help from me or Bill, in fact Bill had taken the opportunity to get a little sleep during this lull. Still determined that she was going out she said she would like some breakfast so I figured it was time to call it a night and get myself ready for the day.

Went in to see her at 7.30am, She was laying on the bed saying she had "Had a little nap" and wanted crumpets for breakfast, looked in again at 8.00am and she was in bed fully clothed and very sleepy suggesting that maybe she would stay home today, looked in again at 8.15am and she was oblivious to the world. So waited for Sarah's transport to tell them she wouldn't be using them today, waited till 9.30am to ring day centre to explain what had happened and assure them she would be in tomorrow. Then made tea and toast for myself and check the emails, as sorting through all that SPAM is somehow relaxing after the night we have just had and thought while it is fresh in the mind I should put in in the blog.

10.30am and Bill gets up so I make him some breakfast and tea, more tea for me, and now fully clothed I am going back upstairs to bed. Will check this blog out later before I post it. Spelling is not my strongest point and the apostrophes will be a disaster if I check them or not.

It is now 4.00pm, I've been up for a while now catching up on stuff and answering the telephone which seems to have been ringing about every 20 minutes since noon, That may be an exaggeration, it just seems that way. Sarah come downstairs around 11.00am and got her Dad to make her breakfast, still seems to be a bit out of sorts but don't we all after the night we've just had! Thankfully we don't often get such long episodes of what I call "autism extreme" from Sarah, at the most it is only for an hour or so a day, and good management keeps the rest of the day cool, calm and collected as they say, hopefully we won't get another one for a few weeks. How people cope with caring for those who are worse off than Sarah I do not know, I'm exhausted after one night, what it must be like to deal with it day in day out I cannot begin to imagine, and there is so little support out there.

For most carers of adults with autism it isn't therapies and cures that are needed, it is psychological support for your own mental health and to give sensible guidance on how to deal with the sometimes illogical and bizarre behaviors you are presented with. While they are at school they have valuable input from the educational psychologists, but when they finish school psychology disappears and as much as I have tried to make contact within the NHS, I cannot get any further than the community nurse for that sort of help and advise, there are no psychologists available to the autistic community where we live and as far as I can tell, the two and a half psychologists we do have are completely swamped with referrals resulting from alcohol and drug abuse. So not much hope there. On the positive side we are blessed with an amazing speech therapist who does what she can with Social Stories, but you can only go so far with those.

Enough!! getting off the soap box and retreating to the kitchen, it's tea time, I've got to get some food together or we will all starve, apparently, and anyway I've got a pottery class to go to, so, normal service is resumed, and here's to tomorrow!!

Monday, 30 March 2009

All Is Well, We Got The Watch!

So the birthday week was nearly over, Saturday arrived and the new watch was priority purchase of the day. I don't get a lot of joy from supermarkets, our closest and therefor most used is Asda, which is unfortunately the supermarket that brings me the least joy.
I had negotiated a deal with Sarah over the watch purchase.. If not available in Asda on Saturday we go to Cardiff on Friday. She has another day away from the day centre then, due to staff training. So round about midday Sarah and I ventured off to Asda for some groceries, and a watch. Would you believe it, they have the very same watch that we are replacing and it is remarkably cheap! I know that logic says a more expensive or well made watch will last longer, but this is Sarah we are dealing with and she goes through watchstraps, shoes and bags at an incredible speed regardless of quality or price. So we bought the watch and the other bits we needed and were home within the hour. Amazing.
So Sarah is happy, consequently we are all happy. The rest of the weekend went remarkably well as far as I was concerned, bearing in mind that it was Mothers Day on Sunday.
I'd had a text from my other daughter, Hannah on Thursday asking me if I was sending flowers or a card to her grandmother, my mother in law, I hadn't realized that Mothers Day had come around, so told her that what with the international financial crisis, I was opting to downsize and just send a card. Didn't hear any more from Hannah until text arrived on Friday saying Happy Birthday. I wasn't expect anything from her because she had already bought a couple of tickets for us for a Bob Dylan gig in Cardiff next month which will be 2 days after her 21st birthday, so it will be like a shared birthday treat! Then on Saturday after our success at Asda, I had a bouquet of flowers delivered from Hannah for my birthday, a really lovely thing to do!
But what about Mothers day? Well Hannah has never really got her head around that one, and to be honest I never have either. Sarah had already given me a Mothers Day card she had made in her IT class on Wednesday so I 'm not complaining. I'm sure when I was a kid we never had Mothers day, but I do remember Mothering Sunday when we were supposed to give our mothers flowers we had picked ourselves and be super polite, no cards or breakfast in bed, and it was really only for young children, not grown up children. I don't remember if I ever gave my Mother a card or not but that is not to say I didn't think the world of her and she new that, she didn't need material proof.
So that was me done for the week, Dads birthday, St Patricks day, my birthday and Mothers day all dealt with reasonably successfully.
Of course the most important event of the week was the purchase of the watch, followed closely by the piece of vintage kitchen equipment I mentioned in my last post, and I think that will be the focus of my next post....

Monday, 23 March 2009

Birthday Week

It's been an odd couple of weeks for me. Starting on Monday 16th March, that was my Dads birthday. He's been gone almost eighteen years now though it sometimes seems like only yesterday, going up and down the motorway on visits. He is still well and truly in my head, so I still wish him a Happy Birthday every year.
Tuesday 17th March, St Patricks day. When I was a child St Patrick was sort of remembered and always mentioned, most likely because of an Irish heritage, although there are no living relatives in Ireland to my knowledge, there is a predominance of Irish surnames in my family. Old habits die hard and Patrick is duly acknowledged.
Wednesday 18th March. Nothing happened, normal day. Even Sarah managed to stay 'good' for want of a better way of saying she didn't kick up a fuss about anything much.
Thursday 19th. The wonderful Sharon who takes Sarah out on a Thursday is this week in Benidorm, so Sarah stayed home. See previous blog for blow by blow account of that day!
Friday 20th March, Woo Hoo!! as youngest daughter (Hannah) would say, it's my birthday. Now, I've got mixed feelings about this. I like the idea of celebrating my existence and against incredible odds I seem to have existed for another year, but on the other hand, youth and vitality are definitely a thing of the past. I have reached that ghastly age for women when you seem to disappear or rather become invisible.
The best examples of this can be found in restaurants and bars. When I was in my 20's I had no problem getting served in pubs and restaurants, in my 30's it was the same, through my 40's I had the kids to contend with along with a bit of further education and marital hic-cups and of course the autism, so I didn't take much notice of what was happening in pubs and restaurants. Now the dreaded 50's or should I say the even more dreaded late 50's. Now I can stand at a bar waving a £20.00 note around and nobody sees me, People come and go with there drinks and crisps etc. and I'm still standing there. In restaurants I'm always the last to be asked what I want. The mad thing is Sarah is always the first to be approached by waiters or waitresses, which kind of wrong foots everybody! Sarah, just to be awkward in my opinion, although autistic likes going to pubs and restaurants. She enjoys the atmosphere and is not in the least bothered by crowds. But she doesn't know what to do when approached by someone with a little pad and pencil throwing questions and demanding answers! this means an awkward moment when I have to intervene as politely as possible because I can see Sarah's discomfort, and the waiters disappointment when instead of dealing with a shapely young blond, he has to deal with me!
Nothing much happened as far as my birthday went, cards from family, the arrival of a piece of vintage kitchen equipment from eBay and a shiny new upgrade mobile phone were the highlights. This is all fine by me, no fuss. More to follow.....

Friday, 20 March 2009


We've had such a long run of reasonably good days as far as autism goes, last nights little outburst came as quite a surprise. It doesn't take long to get used to things being on an even keel, you can get complacent which of course, is a mistake.
So Sarah has been at home because it's her 'away day' from the day centre and her carer who takes her out on her away days is currently in Benidorm. Sarah decided she wanted to stay at home and occupied herself quite well colouring in pictures I've drawn for her, watching films on TV and listening to music, sometimes all at the same time!
We had some extraordinarily good pasta around 7.00 pm, though I say so myself, and were settling down for a depressing couple of hours watching Red Riding (grim, but somehow compelling), Sarah was going upstairs to her room and that is when it all kicked off.
One of the most important presents she had at Christmas was a watch. This is by no means an expensive watch, if anything it is the cheapest digital in plastic I can find. Last year it was blue, this year pink. It's one of her compulsions I suppose, but she must have a watch, it is always ten minutes fast and the alarm must go off at 8.00 am. Her birthday is a week before Christmas and she has always, and I mean ALWAYS, had a watch on one of those occasions. So it is only March 19th, a day before my own birthday I might add, and the bloody strap has broken and there is no way anyone could fix it and bloody Harry Potter is never there when you need him!
So, on and off for a good four hours Sarah was beside herself with anguish over this broken strap, we had the extreme stamping, the squeezing the life out of the back of the chair, the attempts at hurting herself, ie. hitting her own head, biting the back of her hands, pulling her hair, squeezing her arms etc. All this looks more distressing than it really is, she never really hurts herself, you'd think she must be biting lumps out of herself but when you look there's not a mark on her. Once several years ago she did actually manage to scratch he face which left a little red mark for a while, she was mortified and never did the scratching thing again. So really, all this self harm stuff is just for show. She has no desire to hurt herself, but it is a damned good way of getting our attention. She is also well aware of how distressing all this is, which of course adds to her own distress.
This is when the tearful whining that lets us know there is a problem in the first place, gives way to piercing screams which actually hurt your ears. She can keep this one up for some time. We've never really got to grips with this, you really just want to hug her, but she's autistic, hugging will just make it worse, so you have to try and ignore it which is definitely not easy. I often wonder if this is why the house next door has had at least six different tenants over the last ten years, oh well, nobody has said anything, but then they wouldn't would they and God alone knows what they thought was going on!
Anyway, during a pause in the screaming and the continuous demands to mend the strap, I managed to get through to her the notion that we could buy a new watch on Saturday. To be honest , it was probably me shouting at the top of my voice WE'LL BUY A NEW WATCH that really got through to her. Sarah loves the idea of buying things, she is blissfully unaware of the credit crunch, consequently the £25.00 that fell out of the birthday card I got this morning from my mother in law, will be going toward the purchase of yet another digital watch tomorrow.
This morning Sarah is blissfully happy again, as if nothing happened, gone off to the Day Centre with a container in a bag so that she can bring home the cake she will be making this afternoon for my birthday. She also gave me a Mothers Day card she made in her computer class on Wednesday. Consequently I feel like the wicked witch of the west for shouting at her and no, I don't begrudge the £25.oo. It would probably have been spent on her anyway, autism is an expensive lifestyle.

Thursday, 12 March 2009

Last Words On The Pile Of Rubbish

After all the activity on the Monday and a promise of action we were looking forward to the tip being shifted. We only had to wait until Friday around lunchtime for a transit van and a sort of JCB thing to arrive, park and the occupants disappear. An hour later they come back in a sort of flatbed with a cage on it and set about the job by carefully removing the sofa from the summit and manhandling the larger objects onto the flatbed. After a while we could hear the little JCB moving about. To be honest, I think it would have been quicker and more environmentally friendly if they had continued with the manhandling approach because the tiny little grabber thing didn't seem to have much impact but possibly we were up against boys and their toys here. There's not a lot you can do about that.
It all went quiet around 4.00pm and I saw a small convoy lead by the transit then the flatbed containing rubbish with a sofa on top followed by the baby JCB and a mystery car we didn't know was there heading out down the lane. It was Friday afternoon and they weren't going to be back until Monday afternoon at the earliest for what seemed to us to be a good half of the pile of rubbish which was still there, albeit a little less bulky since the baby JCB had been playing on it.
As predicted, Monday lunchtime saw the return of the convoy with a few extra bodies then some more fun and games with the baby JCB. Soon it was all cleared up and the last thing to happen was a small army of litter pickers gathering up the loose bits with those grabber stick things and it was all in the cage on the back of the flatbed!
Convoy left at about 3.30pm followed on foot by several of the litter pickers who all went of in different directions when emerging onto the road, still picking up stray odds and ends. I really have to say that our little triangle of common land has never looked so tidy!
So it's all over, the rubbish has gone but it has left a lingering worry. All through the half term holiday when there were kids and dogs all over the tipped rubbish I couldn't get rid of a parallel mental image of the children picking over waste tips trying to make a living in the Third World.
It occurred to me that we are no better off here in the First World with all our advantages when we continue to abuse our environment in the smallest way by dropping litter in the street to the bigger problems of power station emissions and the like. I studied aesthetics and consequently tend to see that aspect first. That's not to say the pile of rubbish wasn't an eyesore, it was. But by its presence it sent out a message that our little neighbourhood is a good place to dump rubbish, and if nobody bothers to say anything then more rubbish is going to arrive. That seems to be how it works globally, it is certainly how it works locally. People loose pride in their environment and the area becomes run down and just plain depressing, and that seems to be when the vandalism starts.
We are lucky here, we have a local council which is doing its best for the environment within the financial restraints blighting everything these days, but they are up against a good deal of apathy from some people who just don't understand that there is a problem, or are refusing to accept that there is a problem.
There's not a lot one can do about it, just continue to recycle, compost, turn of standby lights and such. But when you look out of your window and see the kids coming back from school with their mums and nobody bats an eyelid when the sweetie wrappers and crisp bags are just dropped as they make their way home, well, it just makes your heart sink.
When did we stop caring about each other?
When did we stop trying to see the world from any angle except our own.
When did we get so selfish?

Tuesday, 10 March 2009

When Did That Pile Of Rubbish Arrive? And Who Delivered It? Part 3

The first two high viz. tabards only have one clipboard between them, but they seem to a make a lot of use of it. They've also got a mobile phone and they make use of that. They have a vehicle each, one in council livery the other not. They are poking about all over the place and nodding to one another in a knowing sort of way, it takes them over an hour to do this. Then two more unmarked cars turn up, each containing one man, a clipboard and a mobile phone. They poke about roughly where the first two poked about. More marks made on clipboards, and two more phone calls made. They go into a huddle quite close to the pile of rubbish with a sofa on top, look at it, point to it and then start looking around presumably for entry and exit points. A bit of gesturing indicates that they have worked out that a vehicle must have delivered it to it's present position and that the lane is the only possible point of entry.
I should probably point out that I have by this time got myself a cup of tea and am watching proceeding through a bedroom window. One more car carrying a suit without a clipboard comes up the lane and joins the huddle. There follows a bit more pointing and nodding and I would love to think that at this point they were synchronising watches, but I'm pretty sure they just all became aware at the same time that it was approaching 4.30 on a Friday afternoon, and then they were gone.
Bill was in the garden whilst all this was happening, and made his presence known over the back fence. He was told they were looking into it and would be moving it as soon as possible. We thought they had been looking into it for the last couple of hours, but there you go.
It’s Friday afternoon, Looks like we’re going to keep our new pile of rubbish and newly decorated sofa for a few more days.
The 'official' looking inspection of the pile caused a flurry of activity and more adults than usual visited it over the weekend, my husband included, all coming away with one bit of tat or another.
Our piece of tat was a black plastic tray which has disappeared into the shed, which had a couple of unopened envelopes stuck to it. Possibly Bill watches a bit too much television, but these envelopes represented a clue as to where the rubbish had originated, 'It's elementary my dear Watson.'
We got really hopeful on Monday morning, you'd have thought the councils environmental department were having a convention around the back of our house, we couldn't keep track of the number of cars and vans and people we saw.
I've got to say, a couple of the suits seemed to be on top of problem. They looked confident and in charge. Then I worked it out, they didn't have headache inducing jackets on but did sport shiny white hard hats which made them look taller, what with the nice dark suits and shiny shoes. One of them got quite excited by the envelopes then everyone retreated a bit when the Mouth Almighty appeared at the end of his garden preceded by his voice. I'm guessing by the arm gestures that he was telling them how to go about the job, but without a decent interpreter the meaning was completely lost.
Anyway, there was a bit more pointing, poking and scratching on clipboards and a few phone calls made, one of them was to me, I am standing by the kitchen window and can see the head of a suit on his mobile, my phone rings, I go and answer it and this chap is asking me if I was the person who phoned about the tipping. I took the phone back into the kitchen as I was saying I was one of the callers when I realized I was talking on the phone to a bloke who was standing just over the back fence. I found this quite amusing and must have sounded like a suitable case for treatment trying not to laugh while being asked if I knew who had tipped the rubbish and if I had seen of heard anything. The man was obviously the chief investigator as he was the same one that got excited about the envelopes.
They told Bill they would be back in a couple of days to 'clear it all up.' This sounded good.....