Saturday, 31 December 2011

If it's all the same to you.....

I have never much liked New Year's Eve. I think this may stem from one year I spent New Year's Eve with my parents at their local pub. 

This was usually a good event - a lock-in for regulars after the itinerant revellers had staggered off to somewhere hipper (if, indeed 'hip' can really be applied to anywhere in my home town). As kids, my sister and I were allowed to stay upstairs in the landlords' flat until the time it became a private party, at which point we were allowed down into the bar and my sister demonstrated a preternatural talent as a  barmaid, with a speed and accuracy on the optics which belied her tender age and stood her in good stead in adult life.  This, despite levels of cigarette smoke that would would today be declared a biohazard, seemed impossibly grown-up and we loved it.

As I got older, though, I would rather have been out with friends of my own age, although my parents would never have stood for that - their view (with which I now concur) is that getting used to social drinking in a safe environment was better than being allowed out god-knows-where unsupervised. As a result, I did the usual teenage thing of grumping my way through the whole night. Midnight came and a drunk I had never met grabbed me, attempted a slobbery snog and promptly threw up over my right shoulder. That rather settled my attitude to New Year's Eve and from that point on (somewhere in the late 1970s) I've always been decidedly 'ho-hum' about the whole thing.

That's not to say that I've never celebrated it - there have been some years where spending the evening with good friends has been a delight, but that's the key - it should always be with people you know and care about. The thought of dragging myself into a crowded city centre bar just to spend the evening with a bunch of drunks simply doesn't appeal.

In recent years, the demands of kids has meant that we both stay home and watch the glittering Novemberfest that is Jools' Hootenanny. Even this seems to be subject to a law of diminishing returns, with guests who are possibly the least interesting they could muster (with honourable exceptions, of course). Over the last couple of years, the girls have joined us at midnight (they were usually still awake anyway), which does at least mean that the family is together for the turn of the year. Sometimes we get a phone call from my octogenarian parents (if they haven't given up and got an early night) and my sister's fibromyalgia now prevents her from a) drinking very much b) going out revelling c) guaranteeing to be awake at midnight - although that's not to say she won't be awake at 3am, 4am or 5am, having been dropping with fatigue at 8.30pm. We get calls from a couple of our oldest friends, after which we head for bed, seldom drunk enough to worry about a hangover in the morning.

What bugs me about New Year, though, is the continual triumph of hope over experience that has us all saying things like "let's hope it's better than the last one!". I'm essentially a fairly optimistic and practical person, hard-headed enough to sort my problems out and fight my corner when needed. This year, though, I simply cannot remember a time when I've dreaded the thought of the following twelve months more. True, we can never know what the future will bring, but of the things I know are coming our way, none of them are good. Our family income will be hit by a double whammy; my partner's pay being downgraded (he doesn't deal directly with the public, you see, so he's one of those awful "back office" types we are all supposed to deride) and frozen (again). And then there's the financial penalty we'll pay on our tax credits for our selfish lifestyle choice of having a disabled child without the foresight to ensure that she was severely disabled. The utter cruelty of a government which chooses to reduce financial support for the "not disabled enough" while simultaneously removing all other support structures is utterly breathtaking. For this reason, I won't, if it's all the same to you, be wishing anyone empty platitudes about better times ahead. For the vast majority of us, 2012 is going to be dire, and my profound wish is that we all come through it as unscathed as possible. Those of you on my Facebook Friends List and my Twitter buddies are all wonderful people and I wish the best to all of you - just don't ask me to dance around any fountains spouting rubbish about next year being fab!

 My dad's usual new year greeting is "Duck! Here comes another one!" This year, more than ever, he's captured the zeitgeist.

Wednesday, 14 December 2011

#asdmornings: When a Tweet's not long enough....

We had anticipated some problems this morning. We knew that she was not happy about doing Food Tech because she hadn't done last week's class and had therefore not made the puff pastry. The suggestion that she could take in some ready made stuff went down badly. Similarly, she's narky about not being "allowed" to do PE, despite several weeks where despite the best efforts of all concerned she has either refused to take part or has refused to leave the PE building afterwards, to a point where they have arranged alternative provision for this lesson while the school is still a building site (the logistics of getting the girls to PE currently involves leaving the premises by the front gate and walking around 2 sides of the perimeter to get to the PE Dept.).

Still, I heard her alarm go off at 6.45am and when I went in at 7am, she was awake and cheerful. "5 minutes" I said and went off to try and encourage her younger sister to engage with "morning."

By 7.30am, her mood had changed and she was refusing to get up. I warned her sister that she might have to walk up to school (it's cold but dry and not the end of the world not to have a lift), and that she'd need to be ready to leave by 8.00am.

At 7.57am, M complained that she also wanted to walk to school with her sister (despite still being in bed). Younger sister (and this is where it starts kicking off) complains that she didn't know she'd got to walk. This appears to trigger something and M then chases her down the stairs and we end up with YS locking herself in the downstairs toilet for protection, with M barring any exit therefrom. Eventually, YS ventures out and puts her blazer and winter coat on, but realises she can't put her shoes on as they're in the kitchen where M is hovering....

I try to encourage M away from her sister, but as she storms past (throwing stuff on the kitchen floor in the process) she pushes her, full strength, into the coat pegs in the hall. and heads back to her room, slamming the door and knocking more paint off the door frame as she does so.

Tears (YS's and mine) and a hug, and I bundle YS out of the house, and go into the living room to phone school to warn them that M is in meltdown and to request that they don't give YS a late mark, as she has been physically unable to leave the house before 8.15am. As I'm on the phone, I hear the merry ratchet-ing sound of the Chubb key on the outside of the living room door being locked behind me (a security measure we put in years ago when we had four break-ins in as many years, coincidentally the last time the Tories were in charge of law and order).  Can hear the sound of things being thrown around, but no idea what. At this point, YS appears at the living room window. In her earlier panic, she has accidentally picked up her sister's blazer rather than her own. I negotiate, through a locked door, for M to let her sister in and exchange it for the right blazer without causing her sister any physical pain. I think I can gauge her mood from peering through the small crack in the woodwork (this one not of her creation!), but have to hope that I've called it right.

Blazer-exchange seems to go off without major injury and YS scuttles off to school.  I then phone OH who, very sensibly, had left the house for work at 7.10am so he at least knows there is a problem. Offers to come home and let me out, but this seems unwise - the last thing a public sector worker needs at the moment is to be perceived as not being 100% productive. Also phone school, and we agree that it's unlikely I'll get her in, but that I will keep them posted

During the course of these conversations, M disappears upstairs, returning fully dressed for school and announces she's going to go in on foot. She then opens the front door, realises it's only just above freezing and asks for a lift. I try to phone school to warn them of this unexpected development, but can't get through, so I drive her there and phone them from the car park. I walk her to Reception, but her route to her classroom is blocked by a class of girls assembled to make the trek over to the PE building, so we lurk in the foyer until the way is clear. She then goes down to her classroom without a further murmur and appears in a perfectly good mood.

I am acutely aware, as I talk to members of staff and her support team, that I haven't yet had a chance to wash or clean my teeth and my hair is in need of a wash. Still, living with autism means that your sense of social embarrassment diminishes as you do what it takes to get by, and at least I'm not still in pyjamas!

Today was a fairly major version of the pre-school meltdown, but they're far from uncommon. I can never be sure what reception I will get when I go in at 7am, and it can often take 50 minutes to persuade her to get up (while trying to get the 11 year old sorted at the same time), to not wear the same shirt 3 days in a row, to have to judge how serious she is when she says, "if you make me go in I'll misbehave." Mixed in with the autism are the teenage hormones which would make life difficult anyway, but unlike the teenage hormones, there is every likelihood that a measure of this behaviour will remain into adulthood. Part of it is pure manipulation (she behaved better yesterday and was rewarded by being allowed to make peppermint creams and coconut ice for the end of term party), but once the manipulation has started, she doesn't always have the ability to stop it.

Autism is an unfairly invisible disability. Those who know her slightly, and have never encountered her in full meltdown see - quite rightly - what a lovely child she can be, but have no concept of what it's like trying to cope with the mercurial changes in temperament. They see that she is resourceful and resilient, but not that she can only do it sometimes - and there'e no predicting when she won't be able to.

Her sister, as many 11 year olds do, tends to overreact to perceived slights and unfairness. She hasn't yet learned the coping strategy of quietly ignoring the extreme provocation in the interests of self-preservation. That will come with maturity, but it's a lot to ask of her.

It's days like this where I wonder how I am ever going to find work that will enable me to combine caring with gainful employment. I'm reasonably intelligent, a good administrator, even ran a team of 30+ people at one time. At the moment, though, there is no prospect of me being able to go out to work on a full time basis. Childcare for secondary-aged children is patchy, so realistically, I'd be looking at term time only and, with the issues we face on a regular basis, it could really do with being something home-based and flexible.  You're no use to an employer if you are constantly having to rush off and sort out a crisis (with my former management hat on, I know that's the case) and with employee's rights being stripped away, I don't think I'd last long in the conventional work environment, do you?

Which is why, on days like these, I so appreciate politicians and unelected 'representatives' voting to reduce the support I receive through tax credits by 50%. Makes me feel truly valued.