Wednesday, 9 May 2018

Story of my life

It's been a difficult first half of the year, I can't focus on anything for long, desperately grabbing at ideas for improving the situation for the boys. There's the immediate need for solutions - the appointments with school to address the immediate problems - that the kids are desperately unhappy, the quality of life at school seems to be particularly hap hazard. There are hints and signs that they know what they are doing, but then just the fact that they are expected to cater for a relatively wide range of issues within their particular diagnosis but using a narrow set of teaching philosophies makes it flawed from the start.
You take all the hard to teach kids of average or above intelligence and go from there. It might be a small class, but it's still a bunch of kids that all require something else but that something is the question.
Then there's if that's not right, then what is? Does it exist already? can it be done? Well there are other options we can try, and then there's two children, both difficult, both require very different types of approach.
So I find two different schools, one is an hour by taxi bus and the registration process is on hold for at least another month due to it being in another municipality and they, quite rightly want to put their own people first. The other for the other boy is closer, but still in another municipality on the other side of the city, to the south. This one though, probably won't let us have the taxi bus. The distance is similar, but from what I've been told, I won't qualify. That in itself is frustrating, just the autistic way I'm being treated by the powers that be.
So, I set up meetings, ring people, email people, visit people, get advice and try to work out what to do. Since January when it became clear that their current school can't deliver for either boys, it's been a combination of trying to make it as bearable where they are and simultaneously work out when and where to move them. The new school year being the best thing all round, both to give us time to get it right, and so that the kids aren't moved mid year.
The whole situation could be prevented, the whole system needs reform, so I've become part of work groups, aspired to start up my own source of advice and information for parents in my situation. A nebulous and thankless task. To document and piece together the right paths in an ever changing, hard to pin down set of systems; the kids are all unique, the circumstances varied, the parents with their own ideas, the schools limited by visions (more lack of), the endless layers of experts. All with their own ideas, or lack of, the form filling layer, and the bit where you jump through hoops to get help, only to find that it spawns a couple of new issues with every new approach. A massive flow chart of time and energy when the best and most effective answer would be to stop moving the kids around and just get them what they need in their local school. Bring the solutions to them, not pass them from pillar to post, taxi bus, greenwheels hire or an hour on the bike there to talk to the school.
All the while I'm working, just 12-16 hours a week cleaning houses for 11 euros an hour, 2-3 hours a day, most weekdays. Sometimes before the appointments, or time spend emailing and phoning and reading. Sometimes after.
Then the kids get home, tired, wired, hungry. Swimming lessons for one, Singing lessons for the other. They want to escape into screens and games, fantasy worlds and darkened bedrooms where they can disappear into YouTube. I do what needs doing, feed them and after we've had a chapter of audio book about 9pm they go to bed without too much fuss.
Wednesdays I've got choir, some nights I go to something social, once or twice a week. A couple of times a month, I go off and leave the kids with their Dad while I get to spend time with a friend. I've even managed a few days away with my Dad in February.
I started the year with a clear idea - sort out the kid's school situation and help others in a similar situation as me. I guess I've made progress as far as the boys are concerned. I've not been able to document much, partly because I don't really feel like I've definitively got many answers to share with others yet.
I'm still waiting to find out if the school I found for my youngest will be a suitable fit or indeed be an improvement on the current situation. I'm poised to register the other kid in a month, once the registration date is opened.
Then there's a whole other side to me, the bit that's me, the me that's unhappy. Unhappily married with no prospect of being able to survive alone - apart from the need to parent together, the husband isn't providing, I'm not providing, so we are sinking into, if not poverty, a very tight, limited budget - one without the little extras that make life nice - trips to the cinema, holidays, a new laptop, daytrips for the kids, spa days, a games console or at least a bit of home entertainment other than the chromecast. I am concerned for stuff like being able to save for the house maintenance - there's probably about 40k worth of stuff the house could do with doing, maybe more. There's the future - a pension, the last part of my working career - another 20 years to set up and build up whatever I will have to live on if I ever get to retire.
Then, as I write in the empty, quiet, but grubby house, messages flood in, the boys are on their way back home. Time to get back on with it.
One last thing I need to put down, the desperate sadness, the hopeless pit of loneliness, hopeless and fearful fighting back tears I'm doing the last week. Is it hormones? is it the fact that we are so tight money wise? is it the fact that I have no plans I can stick to? Is it that all the ideas I have to maybe find a job, study, write, do something useful seem to slip away? I can't grasp anything that feels like a future to live into. Cleaning houses, is making me very sad, I often find myself crying as I clean, I hate it, I want to die, then I cry because I'm needed, I can't be gone. I have to be there. I don't exist, I can't exist, I can't not exist, I am needed. I am nobody, I'm mum.


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