Although Lucy is 19 she still goes to school. It is a "special" school and we fought long and hard to get her in it. If we hadn't fought for this she would have long since left mainstream school and would probably have now been living on benefits and terrorizing us from her room for the last three years, with no hope of achieving anything in this world. We may be heading in that direction again though, since it is soon time for her to leave Marston Hill School and take on the big bad world.
Lucy lives at home during the weekends and holidays, and (still) at her part residential school during the week. We are a pretty standard family, living in a house we can barely afford, struggling as others do to balance what we pay out with what we bring in. My name is Pete and I am a freelance contractor in the IT world, invoicing through my own limited company, and although I get decent rates I don't always have a job to go to, so need to plan for arid times (and we have actually just come out of one). In summary, we get by but don't have much in the way of savings kicking around. You will find out more about Lucy, me and my family as I add to this blog (if you are interested!). But this is not really about us in particular, this is about our experiences living with that horrible, pernicious, brutal and indiscriminate condition that more and more people are seeing turn their world upside down: Autism.
Now, autism is not the same for everyone. In fact, I have come to believe that autism is actually different for every single victim. There is a "spectrum" they call it: victims find themselves somewhere on the Autism Spectrum, ranging from severely impaired, through less severe, right up to the unbelievable "savants", or those Rain Man like people who display remarkable abilities in restricted areas, but at the same time get penalized with a lack of social abilities, which means they cannot form relationships with other people (or at least like non-autistic people would imagine). However there are not many of these people. Most are "somewhere on the spectrum".
Lucy is no savant. She is also not severely impaired. She lives "somewhere on the spectrum", towards the higher end. The test levels are quite low, so despite qualifying as having "high-functional autism" Lucy can't pull more than a 50 IQ rating and to all intents and purposes has the thinking ability of an 11 year old. It is of course always dangerous to go down this route though, since we are essentially comparing apples with oranges. The "normal" way of thinking just doesn't apply to Lucy. Her chief issue is that she can't handle verbal processing. So apart from the autism related issues (strictly speaking to do with inability to interact socially), she cannot process verbal information well at all. This means that she cannot really understand the questions on an IQ test particularly well anyway.
Anyway, this weekend we have the "day before return to school" issue. This means that Lucy is totally wound up. She is preparing for the change from being at home during half term and going back to school. Any kind of change is tough for autistic people (I think, in general), because it is scary. The world is scary anyway, because it is just not understandable, but having change on top of that makes it even worse. Imagine it as having to do a job in a foreign language (one you do NOT know). You are expected to carry out this job according to the demands of, say, the retailer you are working for. You know only a few words, and you have been trained to stack one set of shelves with produce you are not familiar with, but after a while you recognize the shapes and patterns, and know when you are stacking correctly. Eventually you get so good at this that you can quite confidently go about your job. You feel relaxed and satisfied that you can cope with this world. You still have no clue what it is you are stacking, nor what the reason is for doing that, but you know that if you keep doing it the world will not bite you and no one will punish you. Then one day someone tells you to do the same thing on the other shelves, with this other produce. For the autistic this is impossible. The change is not mild, it is enormous. The world has just opened up its massive jaws and threatens to rip your guts out. That is scary. Now, despite the fact that Lucy is in fact familiar with the home-school change, she still finds it scary and uncertain every time. Those frightening jaws do not just disappear. Every change threatens her equilibrium, understanding of the world, ability to deal with it, and her emotional stability. Even the thought of her world changing is frightening. That is why the day before returning to school is so hard, for all of us.
"Shut the door!", she will announce on a regular basis, as anyone enters the kitchen and fails to close the door behind them fast enough. Sure, we can cope with this, for a bit, but as with anything that never stops, like the screaming cat when you are trying to get to sleep, the dripping tap, the angle grinder next door, it pokes a hole in your skull and tap-tap-tap constantly without mercy, until your brain rebels, and despite all restraint you have so admirably attempted to display, eventually it is all too much and you can't deal with it any more. We live on this knife-edge throughout the day-before-school. Each of us deals with it differently. Amy (my wife) will try to ignore it most of the time, with the occasional rebuke "Just stop now Lucy", Chris (my son) will disregard Lucy's wishes most of the time, and leave it open in defiance (he is a teenager), but then suffer the repercussions as Lucy will grill and admonish him repeatedly afterwards. I try to comply with the shut-door policy. As a man I find it much more preferable to play along to avoid the noise of rebuke. I like my peace, especially at weekends. However, when I get told off for not closing the door whilst going through it, I feel trapped and see no way out but to plead for some reasonableness. I forget that "reasonable" is not a word in Lucy's limited vocabulary. So I, too, will fail to shrug it off. It just results in all of us being made more grumpy, feel maltreated and be generally annoyed about the whole thing. We live on a knife-edge of emotions. It all fuels the flames of desperation. And this door thing is not the only way we tap keeps dripping on our psyches.
There is more, much more, about the pain, frustration, struggle and tears we experience living with autism, we even have the odd joy (believe it or not), and I will try to write about those too. We are also at an important stage in Lucy's life. The next few weeks will determine whether our local authority will provide her with funding to go to the Pearson Riding College - where she has already been offered a place, but which needs paying for. It would set her up over the next three years to become more independent, learn to deal with her autism, learn some social skills and ways of dealing with social situations, and all within the environment of horses, which she has always felt comfortable with. She would also gain a qualification and become employable, doing something she is able to and wants to do. We are entering the battle of all battles with our Local Authority, to ensure Lucy gets the support she needs and which will mean she does not end up for the rest of her life on state benefits. This is Lucy's chance to do something with her life, cope with her autism, and our big hope as a family to avoid a life sentence of misery.
Welcome to our world.