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....

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.

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.

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

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

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

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

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

TRADITIONAL CAPITALISM
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.

AN AMERICAN CORPORATION
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.

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

A JAPANESE CORPORATION
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
worldwide.

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

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

A RUSSIAN CORPORATION
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.

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

AN INDIAN CORPORATION
You have two cows.  You worship them.

A BRITISH CORPORATION
You have two cows.  Both are mad.

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

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

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

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?

So, Due To The Weather....

This last Christmas and New Year holiday season has been somewhat extended. Snow kept Sarah at home for the week leading up to Christmas, and more snow in January meant she couldn't get to the Day Centre for more than one and a half days in the last two weeks! So far so good this week as far as the weather goes, although as I type the snow is falling again. It's not settling on the roads, or in the garden thankfully, but further up the mountain we live on the side of it is taking on a distinctly Xmas Card look, I am trying to believe the meteorological office who say it will be gone by the end of the day.

So poor Sarah has been stuck at home for the best part of a month at the worst possible time of year for her.

It's her Birthday a week before Christmas. It is very hard for Sarah to cope with the trappings of her own birthday, she understands the whole cards, gifts, telephone calls, birthday cake routine and likes it applied to other people, and she is damned useful to have at hand when you need to be reminded of an exact birth date coming up, since she asks everyone she meets how old they are and when their birthday is and then amazes them by telling them what day of the week it is going to fall on next and if she's in the right mood what day of the week they were born on and some how never forgets these facts. But when it comes to her own birthday she just wants to get it over and done with, you can see the discomfort of the whole event in her face and it takes a lot of parental clowning around and tomfoolery to lighten her up!

Christmas just means more presents, dinner at the wrong time, and little sister home for a few days, great for all concerned except Sarah who is just going along for the ride. She already knows what is in the presents wrapped up under the tree because she has been very specific all year about what she wants, the list has started already for next Christmas. These are not all big expensive items, she will hear a song on the radio and say she wants it so I make a note of it, download it, save it in a special Sarah play list on iTunes and then burn a few Cd's come December. If you ask her what she wants it is always practical stuff like nighties and pyjamas, she had a red handbag this year that she was very specific about, but I don't think she would have even considered such a thing but for the fact that a strap came adrift on the bag she had been using. If something breaks or goes wrong, regardless of the time of year, if it can't be replaced immediately she always says she'll have it for Christmas or her birthday, and yes, I admit to taking advantage of this as the year progresses. Watches are the only exception, but they are a blog post all of their own, in fact I'm pretty sure I did one with photos last year! She doesn't actually cope to well with surprises so we avoid them and as long as she has a pile of presents to unwrap, she knows what she is getting and no one has more than her, she is happy.

What she isn't happy about is the breaks in routine and the cancellation of events because of the weather. This latest run of cancellations started in late November when a birthday disco was cancelled because of torrential rain and a hurricane blowing making the venue impossible to get to, we did get to the regular monthly service users disco in early December, but the Christmas disco was snowed off. Regular disco snowed off in January, along with the re-dated Christmas disco, and of course the Day Centre had been closed more or less completely since 21st of December until Monday this week. Sarah doesn't like the snow, she can't walk in it with any confidence. So she has been stuck at home getting cabin fever! When Monday and the transport arrived we foolishly thought we were headed back on track but no, she changed her mind about going the minute I opened the door and took a lot of persuading to get on the bus. I get a phone call at 9.30am from the Day Centre saying she wants to come home, can I come and get her.

I don't have a car, I explained to them that it's a two bus journey to get to them and I would be at least an hour getting there. She must have been giving them a really hard time because I was told to hold on for a second and then told they would bring her back in one of the centre's mini buses. She was back home by 10.00am. I don't think Sarah, for all our efforts at preparing her for a return to normality, was able to cope with what had become a change from what had become the norm. Once she had settled back to being at home and calmed down we had a bit of a chat and decided that what we needed to do was lay down some rules for getting her up and out with as little stress as possible in the morning from now on. We went through it step by step with her, inserted a bit of humour and as of yesterday we have a new routine which Sarah likes (but unfortunately requires getting up an hour earlier!) and things do seem to have returned to normal. There is some good come out of all this, not the snow, the being stuck indoors..

As far as reading and writing goes Sarah has never been interested, I don't think she saw a good reason for bothering and she does not like to be told how to do things, she tends to learn from watching and then having a go, which is a long slow process because she will not accept help. This is very frustrating but the way it is. We used to get messages back from school saying her reading was improving, but what was improving was the number of words she recognised, not her reading. But during our snow lengthened Christmas and New Year holiday Sarah has been occupying herself with matching the names of channels on her TV with the TV listings magazine and then writing them down in a notebook, she is making some connections she's never made before and I think she's quite pleased with herself. We don't interfere with what she is doing and she's not asking for help, we only found she was doing this by accident and haven't spoken to her about it. My guess is that she will come to us with the knowledge she has gained at some time, probably when we are least expecting it. She does bring Cd's and the like to us to tell her what some words say, song titles and names of course and alternative or just plain bad spelling, they are all being added to her lexicon. She is really putting a lot of time and effort into it and seems pretty pleased with herself about it. All this adds to her communication skills, she has started to use more appropriate words in conversation and we are left wondering if being snowbound for a couple of weeks every now and again might not be a bad thing after all...

Snow....

Here are some photographs I took this morning through an upstairs window... if you think I'm going out in this to take any more, you've got another think coming!

And here is one I took of the garden out of the back door, and you needn't think I'm venturing much further out that way either!

Who Knows Where The Time Goes...

So it is December again, I'm not a big fan of this time of year. It is too dark for too long and if anything is going to go wrong, it'll do it now. It's only saving grace is the speed times moves at in this lead up to the 'festive season'. I guess it is the shortening daylight hours which make the days seem shorter, I don't really know, but sometime in the beginning of November the days seem to start going past a bit too quickly and before you know it it is New Year. In an act of monumental bad timing I managed to give birth to our first child, Sarah, on the 19th of December 1985. She was delivered by emergency cesarean section so they wouldn't let us out of hospital until New Years Eve, almost a fortnight of hospital food, we almost died of starvation although on the up side, 'matron' was very old school and firmly believed that a bottle of stout a day was in order for new mothers. Who am I to argue!

Sarah will be 24 on Saturday and every year since 1985 we have had to make an extra special effort to get the birthday remembered or even recognised. Each year it has become harder and harder to concentrate on the birthday with Christmas hard on it's heels. Try buying a good birthday card this time of year, and if you really want a challenge try getting a birthday cake that looks half decent, oh yes, then there is the birthday wrapping paper, but that is only part of it. We all know you get presents at Christmas and on your birthday but there is just less than a week between the two events. Sarah was due on the 1st January, and in so many ways this would have been better, the big Christmas hype over and done with.

When I was a kid Christmas always involved my Uncle Jack, Aunt Molly and cousin Christopher arriving for Christmas dinner and going home after the sporting fixtures were over on Boxing day. Christopher and I were roughly the same age except I was born in March, he was born on Boxing day. We were the only children in the family, both of us an only child. They only lived a short walk away, but Christopher never had a birthday party as a child, he never had any of his mates round as they lived in a tiny one bedroom flat on the third floor above a shop on a busy main road, the kitchen was on the landing, the toilet was one flight down and shared with the tenants on that floor. There was no bathroom so of course no hot water, just a big sink on the same landing as the toilet, as far as I was concerned they were light years ahead of us because they had electricity and therefore a television, although all I can remember seeing on it was Popeye! I digress, back to the birthday/Christmas dilemma..

We had the traditional 'sack' of presents from Father Christmas in the morning and a few more in the afternoon with the grown ups after dinner, not much compared to the excesses children receive today, the Rupert Annual was always the best as far as I was concerned and the only other thing that lasted is a teddy bear called Hug Me who survives to this day, in pretty good shape, both eyes intact. Possibly the wisest bear in existence. But Boxing Day was Christopher's day. While the menfolk took themselves off to the pub and then some sort of sporting event, most likely football, the women made sure Christopher had a birthday. There were three of them, all around the same age, my two aunts Moll and Nell, and my mum who was known as Doll. Well those names fix them in time don't they! All three put their lives on hold for the war, Moll was a Land Girl, Nell sewed uniforms and Doll built Spitfires, a formidable force when together and once Boxing Day breakfast was washed up, dried up and put away it was Christopher's Birthday, Christmas was over and done with and there were birthday presents to open, which in our family for some reason were always better than Christmas presents, working on the quality not quantity principle, birthdays were for bicycles and scooters, Christmas was for jigsaw puzzles and fuzzy felt. By the time the football was over and the menfolk were home there was a good spread of turkey sandwiches and a birthday cake and Christmas was gone and forgotten by the time birthday boy was blowing out the candles.

Small point of interest, the names of the menfolk: Grandad was called Jim, my dad was Joe and the three uncles were called Sid, Alf and Jack. Strange that their names do not sound as dated as the women's names.

So anyway, over half a century on, I've got the annual dilemma to deal with... what is she having for Christmas and what should she have on her birthday. Thankfully now the family send her money, that can be divided neatly between the two events, but she has been known to receive one present nicely wrapped with the message 'this is for your birthday and Christmas'. Someone tell me how you explain that to an autistic ten year old! Of course It is always tricky to explain to those who don't know that it is not so much the content of the present as the number of presents opened. We had to make sure the Christmas present haul was the same for both of our kids, and to be honest, we gave up trying to get anything meaningful for Sarah in the end, because as long as she got a calendar, a box of paperclips and some chocolates she was happy, she just needed to know that her sister did not get more than her numerically. They are grown up now so it isn't such a problem, we just make sure Sarah gets a few more to open than the rest of us, but the birthday has to be dealt with first.

I am not very keen on Christmas decorations, I have no desire to light up the house like a beacon, or having the living room looking like Santa's Grotto. I keep it to the minimum. We have a Christmas Tree and a few bits and pieces that come out every year, but they don't see the light of day until the 20th December. At home Christmas does no show it's face until after Sarah's Birthday, What is the point of having birthday cards if there is nowhere to put them because of Christmas cards? And lets face it, the aesthetic of the birthday trappings clash horribly with all the Christmas crap! For the sake of sanity and good taste we'll do them one at a time!

Also, of course, we've got the whole out of routineness of the season, the air of excitement manifest in the giving of cards, and the visits to pantomimes, Christmas concerts, parties and, heaven help us, the Christmas disco. All this has always unsettled Sarah, people you haven't seen since god knows when tend to reappear. Hell! That unsettles me and I'm not autistic! We are currently in the middle of a full scale autistic maelstrom which isn't going to calm down until Christmas is over, we should be used to it by now, but it creeps up on us every year which brings me back to where I started. It is the middle of bloody winter! It is cold, it is damp and it is dark, these things do not make me happy and endless adverts on the television for crap I can't afford and really don't want.. personally I will be glad when it is all over. But time is moving at a pace and in truth, it will soon be New Year, the days will have started to lengthen and we will see spring again, which brings me to title of this post which is the title of a brilliant song which I have had on my mid winter playlist for a few years and would like to share with you. Hope you enjoy it......