I don't exist and I don't belong

I went to my first Groenlinks onderwijs werkgroep meeting on Tuesday evening. I was really nervous, mainly because in meetings like this, I am rubbish at making a good impression; I get triggered easily, I end up talking too much, even if I tell myself to shut up and I get overly distracted by trying to read everybody's expressions and trying to work out what people are feeling.
I had hoped I would meet a kindred spirit in some form, half the members weren't there and there were three people from another werkgroep, so it wasn't a typical meeting.
I know that things don't change or get better quickly. I know that councils attract people for different reasons and that we possibly all want similar things but are either resigned or pitching a different angle. But what I felt was mostly resignation. I got triggered by a couple of bingo card moments, as I call them. First someone said that the reason primary schools are so segregated is because and I quote Turkish parents only register their kids when they get a letter when the child is 4 and so instead of registering the kids from birth at the bestest school, they go to the primary down the road. And the other was that said within those minorities you also don't find involved parents "betrokken ouders". Both statements really triggered me. I'm sure these people are good people at heart, but really? those old chestnuts?
It made me think of the cycling bingo cards we used to joke about at council meetings, if you read the british press or see anything about cyclists on the TV - cyclists are all middle aged, middle class and white, they have beards, they ride two abreast, they don't use lights, they are invisible, they don't look where they are going, they run lights, they don't pay road tax, they don't follow the rules of the road, they clog up the roads on Sundays on their sport rides, women don't like cycling or riding bikes, it ruins their hair and so on.
When you are a female cyclist, with lights, that stops at lights, obeys the rules (most of the time) and I ride for transport, I might as well not exist. I don't exist, and it's only by seeing how life in NL is do I know for sure that it's not that any of this is true, it's the environment that matters.
Same applies to Autistic people, you can make a bingo card of assumptions and "truths" about what auties do and don't do, what they can and can't do. The fact is, as dissabilities go, it has one of the largest proportions of adults not in work. This has nothing to do with their ability to work, and everything to do with environment.
And so the equality/minorities bingo card the same is also true, so there are people and just people. Give them what they need, they do what they do - some will do better than others and some will stand out as outstanding - good and bad, high and low. The environments never started off the same to to expect the same or similar result, or to blame the individuals, is a bit pointless.
Should you replicate the same environments? probably impossible, so no. But which elements are clearly missing? What systems exaggerate the problem and why?
For example signing your kid up at birth, some schools allow it, some don't. Some have lotteries when the school is oversubscribed. Why are they oversubscribed though? What is it that these schools provide? Safety in numbers? the "right type" of kids for your kid to befriend, children of similar background? fear that your child might get influenced by the "wrong sort"of kid? What if some of them just wanted that school because it looks nice, it's the closest, it seems to offer the right variety of subjects? But what if where you live, there isn't a local school like that? why not? Why does the school with the expensive houses get the glory? Are the houses expensive because of the school? So it's not about whether you register your kid at birth, or stick their name in a lottery. It's not about buying a house in the right area,. It's simply about the quality of the school; does it do what it says on the tin? if there aren't schools of equal quality or if you have this scores on the doors, pressure on schools to perform to attract kids, but this is unfair because some schools can get more money out of the parents or they have ties to a particular secondry school that's popular, then it will never change.
I don't think life will ever be fair or that you can make all things equal, but surely, if you can take steps to even stuff out? Kids don't get to choose who their parents are, so if there's any point in a persons life where the state should invest in, it has to be childhood. So why all the cuts to education?
It's not all about funds and money though, it has to be mostly about how you use it and who gets to benefit from those funds and why.
What's holding back the reforms in education to bring it into the 21st Century?
What's holding back NL from inclusive education?
Is there a vision?
What's the plan?
What are we waiting for?
What is the point of the onderwijs werkgroep? what can it achieve? I need to know the boundaries.

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.

Bevrijdingsdag

It's the 5th of May. This is an important day in the Netherlands, the anniversary of the end of the german occupation during the 2nd World War. Utrecht was occupied with a capital O and a large part of the male population was taken away and put to work towards the end of the war and the women were left to get through the harshest winter on their own. For those left behind, it was a frightening and painful time. Just what I've been reading about in today's paper. More significant distraction.
Bevrijding for me also refers to this being the first of hopefully many respite weekends. The kids are wonderful but also exhausting, more than normal kids. OK we are also lucky and they aren't physically handicapped, but it's taken me long enough to admit that we needed something like this so I'm not going to justify it.
It is weird, quiet, dare I say it, lonely. I'm enjoying the peace, but I don't want to be alone. Tobe and I are pretty much at opposite ends of the house. He's in the attic bimbling about probably anxious that he's not doing what he should be doing and I'm here in the garden doing the same.
I have lists, right now though, they aren't very well put together. I feel like my integrity is all disconnected and things aren't standing up straight or able to work like they should. I am also not inclined to do anything though. Half of me wants to get all busy, tie up loose ends, tidy up the mess, and get cracking on those things I want to do. Half of me wants to sit on my arse, scroll face book, drink tea or gin and have absolutely nothing to do with anything that should be done, just relax. I doubt anyone would deny me the relaxing thing, after all, I've not had a holiday without the kids as such, that hasn't involved somebody else's obligation or care since they were born. I think that's not quite accurate, but what it comes down to more, is I haven't defined and organised my time very well and I don't get the most out of my time, work or play. It's all a bit hazy.
It feels like those dreams when you are on a journey somewhere and suddenly find you've lost your stuff, you are on the wrong train or the person you are with or should be caring for has vanished. You keep trying different things, and you just can't seem to work it out. I generally start getting upset or angry, then I wake up.
I'm awake now though and it's like hide and seek. I get up and wonder around the ground floor, I feel dizzy and weak. I recover and slowly look around, it's messy and needs tidying. There in the corner, toby's escape room stuff. A cardboard veg tray from the supermarket full of paperwork to file. Every available surface in the middle covered in art stuff I need to work out how to store. I've not done anything creative with it ever, I want to, but I can't get going.
I see the clipboard week list I bought at the beginning of the year, for weeks this year, mayby 70% of them, I've got round to filling in the plan for the week, maybe 20% of them I've actually looked at again after having done it at the beginning of that week. That's not as bad as it sounds, as just knowing what I was doing a few days in advance, did really help. What didn't help, is that my desk is the dining table, I'm not a hot desk type, so having to decamp when we used it to eat or play a game, didn't really help. Maybe if I'd have found a way or somewhere to store my stuff that wasn't just out the way, I could do that fine, but it's not worked yet.
Maybe I need a writing shed in the garden. Maybe I should commute to one of the buurtcafe's when they are on and go and work there. I'm going to be volunteering there with the volkstuin/moestuin very soon. Maybe I should use that as a way to get out and get work done, not try to do it at home. At home do the jobs I should do at home, clean, tidy, cook etc.
Spaces all confused. I need to make definition, work out where I am.
So many half baked ideas and plans, I don't think plans is the proper word, it's all just ideas. Planning is the bit I can't focus on.
Where to start. Back to pen and paper.