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.

3 comments:

  1. Update: call from school at lunchtime. Had gone beyond agreed boundary where sanction is being sent home. Can I come and get her? Stopped what I was doing and drove up there, expressed opinion that sanction which involves sending her home less than useful for a child who doesn't want to be in school. Waited for her t be brought out to reception.

    She refused to leave the premises!

    I know have to go back at the end of the school day. So that worked, then....

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  2. This morning: announces that she wants to take some Christmas music in for the school party. At 7.35am.

    Find iTunes voucher she was given for Christmas last year
    Try to register it
    Retrieve password for GoogleMail to validate it (she can't remember waht it is, as she doesn't use Gmail account very often)
    Download Justin Bieber Christmas Song!!!!!!
    Add some Christmas songs from Early Learning Centre CD we've had since she was 4
    Burn to disc
    Get error message
    Refuses to go to school if disk not available
    Take disk out and find that error message was, in itself, erroneous and that tracks have tranferred!
    Get to school with minutes to spare
    Drive home
    Notice burning rubber/plastic smell coming from car.......

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  3. Last week, she absented herself from 'enrichment' session after main school day and left the premises. I wasn't available (in school on governor business and not disturb-able) so partner gets call at the office and has to arrange for travel home 4 miles in core time to come and look for her. He clears this with his boss, gets the train back and scours the area for her, unsuccessfully. Returns home to find her there. She had gone back into school within a few minutes of leaving and had come home with me at the end of the day, without my being aware there had even been a problem.

    The following day she again goes 'out of bounds' and I am sent for. She refuses to leave the premises. Spend 2 and a half hours following her around in near-freezing temperatures trying to persuade her to come home (during the course of which I catch the underside of the car on a speed bump and have now got a suspicious rattling sound coming from the undercarriage).

    This morning, I am accused on not knowing where her hairbrush is and not having tidied her bedroom (despite being refused permission to enter it all weekend).

    Arrived at school 8.15am (for 8.30am registration). M notices icy puddle and decides it is "too cold" to walk the 150yds from car park to school entrance. Wants staff to come and collect her which they (quite rightly) refuse to do. Sit in car with her. At 8.50am she agrees to walk in if I take her to Reception, which we reach just as the bell goes for Lesson 1, so whole school milling around. Too anxious to walk down to her room in crowd, so I spend another 10 mins waiting with her until the crowd subsides.

    Eventually persuaded to walk down with a LSA who is heading to that end of the building. By this time she is late for first lesson.

    Now have to determine whether the letter we got at the weekend about the hour's detention this Friday is additional to the hour's detention she actually did last Friday, or whether it's an admin error....

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