Nearly a month since I last blogged.. how remiss of me, but I have been basking in the glorious peace that has descended on our house since Sarah seems to have turned another corner and has changed her default reaction to any given situation from..
'I want nothing whatsoever to do with what you are suggesting and until I get my own way I will shout, scream, stamp my feet and inflict as much damage as possible (physical and mental) on you, me, anyone and anything that is within reach.'
"Ok, I'll go along with that. We are going to have something to eat aren't we? Busses can be a nuisance sometimes, never mind, earphones on, iPod on, can I have a drink of water? What is 64x72?'
In the last month several things have happened that would have resulted in utter meltdown seven or eight weeks ago. We've had changes of staff at the Day Centre, changes of personnel on the transport, a full moon, a menstrual cycle, several technical hitches involving freeview box, DVD player and iPod and a nasty cold which has left us with a nasty cough which we cannot shift.
So what's going on? What's happened? As far as I can see it is just two small adjustments made by everyone who has dealings with Sarah. At the Day Centre and at home we have made a concerted effort to ensure Sarah knows where all the people who are important to her are and that she is told well in advance of any events coming up, or changes to events she is already aware of. A couple of simple things really, but we had all let them slide and had not noticed. It needed to be pointed out to us because we just couldn't see it. Something was obviously making her feel as mad as hell, none of us could work out what it was and we all just reverted to damage limitation and putting up defences.
As I said in an earlier post, we had visits from a psychiatrist. He finally assured us that the problem was not a mental health issue that required medication. This was a relief, Sarah has never had any medication beyond the usual antibiotics for infections etc, and decongestants because she doesn't cope well with stuffy noses. He was of the opinion that psychology was the way forward but he would keep a watching brief on progress.
Psychologist turned out to be a marvelous woman who hit it of with Sarah as soon as they met. Of course I was the one who had to do most of the work, listing dates, events, good days, bad days, what the weather was like, who was around. endless little details going back six months or more. and also keeping a diary with detailed descriptions of any challenging behaviours Sarah displayed what may have prompted them, where she was etc. A similar thing was being done at the Day Centre. Every week for five weeks Amy the psychologist and I went through the events of the week with a fine tooth comb, she made a chart and with the aid of coloured markers we started to see patterns emerging.
I believed from the start that what was needed was a fresh eye looking at the problems we were having, I had a bit of fight to get anyone to take me seriously and it wasn't until the Day Centre had trouble keeping Sarah calm on some days and I expressed my concerns for my own health at our GP surgery that action was finally taken and we were referred to the psychiatric dept. I believe I was proved right.
Two weeks in, Amy noticed that the worst incidents were occurring when things change and Sarah was not informed. We have always known that Sarah doesn't like surprises, We also know that, being autistic, routine rules, and that changes have to be explained carefully. What the Day Centre and ourselves had lost sight of is how small these changes can be and if too many changes are occurring, as they had been for Sarah for almost a year it turns out, she is not surprisingly going to get a bit miffed! So, rules laid down, strategies put in place, and the last month has been plain sailing. We just couldn't see the wood for the trees.
So we have had the pleasure of a cheerful and relaxed Sarah for a few weeks now, she is not worried about what horrendous changes might have taken place overnight, so has space left in her head to think about other things, like getting back into teaching herself to read, she still doesn't like people showing her what to do or how to go about things, she has to work it out for herself. Also multiplication tables.
Like most of the pre calculator generation, I learned my tables off by heart in junior school from 'Once one is one' all the way through to 'Twelve twelves are a hundred and forty-four'. Now here comes the rod for your own back confession... when Sarah was about three years old she didn't do a lot of sleeping and the only way to get her to lay down and shut her eyes was to sit next to her bed and talk to her. This happened every night, sometimes all night, sometimes just for an hour. We tried the classic children's books but she wasn't too keen. I'm not too good at singing so I used to recite Bob Dylan songs to her, she was, and still is, very fond of Mr Tambourine Man. My version of Subterranean Homesick Blues used to go down quite well too. Then we would say the alphabet, forwards then backwards, at least twice, then we would count to a hundred forwards, then backwards, she was usually getting dozy at this point, and the only thing left in my head that I didn't have to think about were multiplication tables. We did this for a solid two years, then spasmodically, mainly through school holidays, until we moved to this house and she had a room to herself. She was about eight years old by then and she knew her times tables, she didn't know how to use them, but she knew them, and being autistic, she still knows them but doesn't have much idea of what they are about. Now she has all this spare time to use up, time that she was spending getting wound up about which bus was coming for her in the morning.
On Saturday the penny dropped.
We had bought two sponge rolls for £2.00 from Marks and Spencers. I won't go into why we were in Marks and Sparks food hall, thats another blog for another day, suffice to say that a Cappuccino Chocolate Sponge Roll and an Apricot Sponge Roll for £2.00 was an offer we couldn't refuse. That evening, we had to decide whether we should break out the Cappuccino Choc or the Apricot. My husband, Sarah's father, suggested that we could have a slice of each.. each. Sarah was a little confused by this radical suggestion, but conceded it was a good idea after a small demonstration of swiss roll slicing. It was demonstrated to her that each cake was sufficient for nine good slices which meant we had three days worth of cake if we had one slice of each cake each and there would be no argument over who had most of which one. An astounding piece of logic to emerge from our house really.
In Sarah's mind, all those abstract numbers she's been carrying around since my attempts to bore her to sleep twenty odd years ago suddenly turned into slices of cake and by the time she'd finished eating her slices of cake she was grappling with the calculation for how many sausages were needed if there were ten students, four staff and they wanted three sausages each. she got to the answer before I did. Mental arithmetic was never my strongest point. So now she is asking me to confirm the answers to mathematical questions she is setting for herself. I really am useless with numbers, I learned tables by rote, that is the only reason I know them. I'm sure there must be a name for it, something like number blindness, dyslexia only it's numbers not letters that I have difficulties with. With paper and pencil I can do the basics, with a calculator I can do VAT returns, double entry book keeping is not too much of a problem, I just can't hold the numbers in my head long enough to do simple mental arithmetic that other people seem to find easy. I had difficulty telling the time as a child, I just learned to recognise the angles of the hands, I had to look very long and hard to be sure. Digital clocks were a bit of a bother but I think I've cracked them now, although twentyfour hour clocks can still be a bit troublesome.
So this latest bit of progress for Sarah is proving to be a bit of a problem. She has literally turned the tables on me! I've had a few weeks of breathing space I suppose, now I'm just going to have to get to grips with the calculator and do my damnedest to catch up on the maths. Never mind, no peace for the wicked, as they say... Hmm... sometimes I regret my ill spent youth....