Finishing Law School

Finishing Law School

0 comment Friday, July 25, 2014 |
This will be my last entry in this blog. It's run its course...and in a way so have I.
I'll just out and say it: after much soul-searching and realisation that no, the council really isn't going to help me and no, the LEA really HAS denied our son going to a special school and yes, it IS actually getting nearly impossible to walk now and, probably, ATOS is going to put me through the appeals process before I get a scrap of funding to be mobile...my son is going to live with his father in September. Possibly sooner as I don't think I can make it through summer break. Gone, the garden. Gone, the house. Gone, the child.
End. Done. Game over.
I have "been strong" - for years I fought for my son's education as ex was too busy working/shaggingwhoever to be around for it. I have hung in there and tried not to give up, tried to keep working at home even when the evidence was quite clear working was probably the last thing I should be doing. I have done everything I could, transforming a crap house into something decent and running all about trying to make various arrangements to at least attempt to have a normal life. But with all the cuts which are currently happening it's becoming more and more clear to me just how much is disappearing; transport to and from school being cut, anything to "prevent family breakdown" is now gone, refusal to move me to a more suitable house, DLA for self, potentially DLA for child....all gone. What I contributed to when I was working, thinking it would be there when I needed it, has all quietly been axed, and nothing remains.
In utter bogglement, I have discovered that my social worker seems to think the reason my son goes off in school is because I'm abusing him at home. I'm ...well, speechless. I cannot believe that the triggers which I would have thought even a blind weasel could pick up (hell, even the ex picked it up in the minutes that the examples would set sprog off and he's not that observant) are ignored, and instead there are constant questions about where child goes on weekends, about him coming into school angry (the explanation that this may be because he HATES school is ignored entirely), and querying about whether ex would take child in if need be. I have been attempting to warn ex that the questioning is obviously going in the direction of shifting all blame to us rather than to the school but I'm ignored. Actually, I'm pretty much ignored no matter what I say to anyone I find.
Is ex the best choice? No, not really. But in this case, I'd rather the devil I knew than the devil I didn't; putting my child into care means hell would have to freeze first. Nevertheless, I predict after about three months of full time childminding ex will hire a nanny because he "can't cope". Sprog will be raised by a stranger and I will only get to see him once a month as he won't transport my son down to see me. Once a month, for one day, I'll see the only thing that kept me going for seven years when everything else fell apart.
But I cannot think of what else to do - the one school we looked into as a good possibility, the transport isn't there to get him to it. And even if it was there, how do I get through the half terms? The summer breaks? More and more evidence crops up that this damn disease has put so much stress on my liver and kidneys that there may be some damage. Discussions of pads and, if need be, dialysis, are kicking around. And that's only what the most common symptoms imply: there's all the fun stuff they haven't found yet. What chances of me surviving through six weeks of Wumping whilst having to go for test after test, observation after observation? If I had a shred of help, I might have been able to...but I don't.
I am applying for sheltered housing - chances I'll get it? Slim to none, but I won't be able to afford this house anymore, and it's too large for just me. I might even need to rehome my cats, which will just kick the pieces of my already broken heart, but I'll hope and pray I don't. I've been homeless before. It isn't pretty - I don't think I could do it again and survive, but if it comes to that, I want to get my son clear, even if it's dubious it's the better choice.
For seven years I sacrificed everything I had to raise my child, and I will be left with nothing. If there's anything to "be strong" about now, it's the bloodymindedness to just keep breathing in and out. Quite honestly, there's nothing to live for. Offer me no platitudes and chin-up speeches. You have no idea how hard I've been sobbing whilst I've been typing this. My heart is shattered and I cannot even possibly conceive of it ever coming together again. And unless you have EVER been right where I am standing, do not tell me it will. Don't you fucking dare.
Yesterday on a forum I belong to more and more disabled parents made the announcement that their own lifelines had been cut and they didn't know how they were going to manage; housebound, bedbound, paralysed, didn't matter - they are not the mythical "most vulnerable" we hear about so much but have never met. One woman wrote what I can only presume was her suicide note. I'm pretty certain the organisation volunteers tried to contact her, but we received no news on whether or not she was all right. I can only assume the worst - she wasn't asking for help because she knew, just as the rest of us do, that there isn't any. She was saying goodbye to us, and to her three children.
I'm not that far gone...not yet, but I cannot deny the possibility hasn't surfaced now and again. I force them back as I know the stress is making the lupus-brain-involvement worse, but since I have yet to convince a GP I have lupus I have no drugs to treat it with. Not even sure with my dodgy system more medication is the ticket anyway. Too many questions, not enough answers, no matter the urgency.
This is not a post I want to write. This isn't the way I wanted this blog to end. But I post this as my testament to what Big Society has become, and what it costs. This is what the cuts look like - a former legal professional and athlete reduced to biting her lip so hard it bleeds so her child upstairs won't hear her sobs as she goes over the paperwork to send him to be raised by strangers. Broken and aching in every joint in a way no medication touched any longer, she plots out how to spend the rest of her days rotting away out of sight of the public eye.
This is the truth of cuts. Cuts bleed. I'm lightheaded from blood loss and begging for a transfusion - the public walks over me, mutters something about scroungers, takes a photo on their mobile phones to show their mates on Facebook...and keep going.
I've nothing further to say.

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0 comment Thursday, July 24, 2014 |
I know, this is supposed to be a gardeny-blog sort of thing, but it seems to be evolving into a garden/self-sufficiency/disability/parenting sort of thing. I may have to start using those mysterious "tag" things just to keep everything straight.
I'm still in the throes of Languishment; it's been a while since I've been this fatigued, but at least I'm not in agony. This has made me seriously rethink my business approach to the year. The Xmas season nearly killed me, truly; several craft fairs which actually didn't give me all that great returns, lots of running around, lots of stress, and I was exhausted and done in for weeks afterwards - and couldn't get enough rest due to holidays and injuries and even MORE stress. I have more cash now on hand, but I'm trying to use it wisely, finding ways to invest in other crafty ways to add to my business ventures, save money round the house and, more importantly, be able to do all this and still allow me to spend time with my son, take time out for myself, and not feel the money-crunch as the need to push myself further than I can function.
First order of business is, obviously, the garden, for many reasons; therapeutic, self-sufficiency, safety and forward thinking for when/if my mobility worsens. It will help in huge ways, and I'm keeping the faith.
But I'm not stopping there; I'm digging up old skills which I haven't used in a long while and will be putting those to use again. I'm investing in a sewing machine that can handle heavier fabrics so I can sew house furnishings, winter wear for myself, corsetry when I have a wild hair to be fancy, and maybe even sew things I may be able to sell in addition to my soaps, such as towels, dishcloths, muslin face cloths and maybe even extend beyond that into other things to add to Folksy.
I'm going to homebrew again this year; not on the monumental scale Ex used to brew, in which we'd have anywhere up to 150 bottles of different beers and wines all on the cure (though that turned out to be instant barter currency!). But surplus fruits when I go to the pick your owns could make a few bottles, I have every intention of trying my hand at mead this year, and I've even a recipe for ginger wine now. I have (I think - and yes, I'll check first!) an elder bush outside and elderflower/elderberry wine wouldn't go amiss. These were great for Xmas gifts and also quite lovely to open up during a grim winter's day.
Stockpiling food like I used to is something I'm also trying to do; a chest freezer to store meat, surplus veg, dog bones and the like wouldn't go amiss either. Waste not, want not has been my motto for the past month and it really has made a different in my food bills, so I'd like to see how far I can go with things. I'm certainly managing on the home-cooked food front - sprog hasn't had food out of a box in weeks and he doesn't really seem to miss it much. This is a good sign!
The business....well, for the sake of my sanity and my health, I'm doing the sensible thing and not promoting my website quite so much. That is for re-orders from craft fairs and so on. I have good results from Folksy so I will continue to sell there as and when I have stock. I will also add any sewing stuff I may feel would be a good addition, and I will plan WELL in advance of Christmas craft fairs and limit my attendance to two this year. I'm planning on attending one summer fair, but only one. I just can't do any more than that, really, as summer is when I need my energy the most. I'll get in some friends to help with wrapping, labelling, and sorting out so I don't stay up till 11 anymore trying to do it all myself. As long as I'm working regularly per week, I still qualify for tax credits, and the sheer amount of cataloguing, researching, trying new techniques, formulating, creating labels, wrapping, checking ingredients, and all that one has to to just to make some soap which is legal to sell takes up a lot more time than most people realise. I'm working at least that during the day, after sprog is asleep (was just researching how to sell laundry soap legally but it looks like a legal morass, and the EU has banned borax). I thinks I earns my money, thankya.
I will be getting back to the gym, on a more sedate but necessary basis this Friday, and again on Sunday. I'll get more active, even if it means I have to kiss bodybuilding goodbye and stick to machines (meh). More walking, and more ME time, as well as more allowing myself to take those days off if I need them - though a "day off" is still a day where I find things to do, just at a lighter pace; I hung up the laundry, did dishes, and cleaned the pantry today. It felt like a holiday, and that's possibly rather telling.
And now, at the mid-night hour of....8pm...I'm going to bed.

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The snow is starting to melt now for a mercy! It's a bit treacherous for me to walk so I decide to skip fashion for sense and go out with my walking stick just to be sure I'm a little more even-footed. Still, with the warmer temps I find myself thinking (rather irrationally) "Whooooo here comes spring!". A bit premature, indeed, but I can't help it. I want to get started outside!
The Family Fund paperwork came with - seriously - more paperwork about garden works. Even though they're the only charity who will even consider doing anything in the garden, apparently it's not as straightforward as I had thought. I'm a bit gutted - I thought all that waiting-for-a-decision stuff was over, but no, I've got even more to do. Argh! Gutted - but at least we can make a start and hopefully get it sorted (or at the least a yea or a nay) in March as the fence and clear is really the first thing I need to happen before I can really do anything else, though getting topsoil in before that would be good. Hopefully the awesome landscaper will be able to come out tomorrow or Wed and we can get that estimate sorted.
I've actually managed to get quite a few things sorted today; the gas bill turned out to be an error and it's nowhere near as much as they figured it to be (honestly not the fault of the company, but the letting agent read the meter wrong at the start). However it took a year and four different calls to the company for it to be spotted. My thanks to the lady today who was awesome and sorted everything out for me in record time!
I've done laundry, dishes, sorted out old clothes sprog doesn't wear anymore, calling the Trading Standards to come and check my scales on Wed. The end of this week, it's sample time to various shops and things in the hopes of securing orders for summer (I need to get the brochures and so on done by Thursday). I hopefully also have soapy shipments coming in; I haven't made any soap in over a month and I feel as if I've lost the knack! I'm feeling creative so we'll see what I manage to sort out.

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0 comment Wednesday, July 23, 2014 |
I have been my son's advocate ever since his health visitor recognised the signs of autism. I've had to convince friends and family members, I've had to petition for statements, and struggle with getting the word autism to even be used on said statements. I've gone round for round with schools who say they've dealt with autism, when in reality they've only dealt with ONE autistic child and therefore they think they've got the whole thing sorted. It's been an uphill battle and, unfortunately, I doubt it's won I can ever say I've truly "won", as there's always something new to deal with.
Sprog has been in two different schools already. In London they attempted mainstream as it seems statements are subject to interpretation. It was a two-week disaster, and he was quickly transferred to their special unit, which proved much better for him and a very good experience.
Upon moving back to Wilts, we toured two different schools, and chose the one sprog is currently in because it wasn't CoE (we're not Christians and we worried that sprog might take the religious lessons much too literally), and because they had a special needs dedicated unit.
That decision has proven to be a considerable mistake on many levels, for many reasons, and we're now in the process to set things right with the help of the autism paediatrics specialist of Wilts - another woman who wears a very special hat, and wears it alone. Her work schedule is completely mad, and she has no proteges or assistants. She's very in touch with autism and with the school system and she tries to bridge the gap, but it's quite clear she's fighting a war armed with nothing but a pointed stick and bloodymindedness as the expectations of many schools is rather appalling. I'm so grateful she's going to be pulling out all the stops for us, though it does also unfortunately reinforce how I've been feeling about the current school in the first place; they're not listening, and that is directly affecting my son. The school is wrong for him, and that's that.
It was she who sat my in-denial ex down and told him pointblank about my son's needs - to be honest I think she was the first person he actually listened to about it. as he certainly didn't want to hear what I had to say. She fought to get autism on my son's statement, and she is not only going to get the rewrite worded properly so sprog will get EXACTLY what he needs, but due to some of the things we've been told by the special needs coordinator at sprog's current school, she's also in agreement sprog would be better off at the CoE school we had visited previously. Therefore she going to try and get sprog a place there. She is going to directly attend the decision board for our son's case (even with her mad workload) and if she doesn't attend that one, she will be attending the quarterly assessment meeting so she will be sure to be there and be on our side to get him sorted. There will be more work with occupational therapy, more work on getting the school what it needs and more work to get them to realise that they might have dealt with special needs, but when it comes to autism they have a LOT of ground to cover. Even if sprog doesn't stay there, it will hopefully benefit other children who will need the help...and there are many.
I think she was very pleasantly surprised to see ex had turned up at my behest to be at the meeting and give support; this made a huge change from the last time she spoke to him! She also saw sprog briefly and gasped in surprise at how tall he was. Most of all, I think she was rather encouraged that we are as involved as we are in sprog's education and in trying to sort things out. "Most children, if their parents aren't involved as much as you are, just flounder and never recover." I can believe it...but I'll never allow it to happen to mine. This is why I am home and available for telephone calls, meetings, and conferences. I have no employers to try and convince that I need time off when my son has a meltdown, or when I'm late because sprog didn't get dressed without assistance, or I'm dragging exhausted as he got up at 12, then 2, then 3...
However, it's exceedingly depressing how poorly prepared most schools are for autistic children; true, there's a lack of funding (and when I say 'lack' I mean by -�5million and rising for many counties). But there's just a glaring lack of being informed as well. I don't quite understand why; there are courses, and the internet, and while there may be other children in the school, if a child is struggling, wouldn't one put the extra effort in? Some of the expectations for our son are so completely impossible for an autistic child that it baffles the mind - the professional's stared at us in shock at some of the things we'd been told by the coordinator. It's a delicate business as I know she has to work with schools and coordinators on a daily basis, and I'm sure sometimes she'd just rather strangle them.
The simple truth is most parents know more about autism than the mainstream schools, even than their units. I spent a lot of time teaching the current unit how to do their jobs, and it is something I continue to do. I will not lie; it's exhausting as even when sprog isn't here I spend a lot of time wondering if he's having a good day, or if something is going to crop up and I'm going to get a phonecall. There is no peace, no armistice, no sense of "Now, it's over and we can settle and breathe a sigh of relief." Maybe we'll get there eventually, but for now I'll just gird the loins for battle with the few bloodyminded people who are equally intent of just trying to clear the way a bit for our children, and those coming after us.
A pity more women aren't knighted in this country and I certainly know a candidate or two. I'd certainly put S. up for being a Dame, several medals of honour, a visit to the Queen and - for something completely practical - a very blissful, quiet, and satisfying retirement.

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I've always wanted to make my son's room into a more welcoming space - this has always been a bit of a problem as sensory rooms are, by their nature, extremely expensive. So expensive that it would be folly for me to spend the upward-to-�10,000 for a room when my son would get bored with the displays in a week - hence I've instilled a rule that toys for sprog can cost no more than �30 a month; which still gives him plenty of things to get.
Strange in a child with autism, my son seems to enjoy change, provided you tell him in advance what's coming. That requires a bit of timing; inform him too soon and he obsesses over the change and will ask constantly when something is about to happen (hence many people using the "How many sleeps" method with helping autistic children understand time). He has a year calendar on which we can mark off his days for Daddy Days or other events, and that also helps.
The room has been something I've asked him about; I asked him what kind of paint he'd like. He's in a blue phase at the moment so blue sky with clouds is the current request. I've told him I've been looking at things for his room and when I went onto a sensory toy site he pointed out things he liked (which seemed to be just about everything!). It's given me ideas as to what will stimulate him, and what we can do to help give him an outlet for his exuberance as well as to keep him safe.
The paint is needed anyway - he's manage to peel wallpaper off the walls and the place looks quite shabby. But I've been turned onto something called blackboard paint; essentially, a few coats of the stuff covers your wall in a nontoxic "blackboard" material that you can colour with chalk, wipe clean (apparently Coca Cola works best; good thing I don't drink the stuff if it can clean a blackboard, good grief...) and then draw again! While dust was a bit of a balking point as the house is more than dusty enough, I also found liquid chalk paints that go on neatly, but without the dust issue. So score there!
My son tends to run and jump a lot. While his room is too small for a soft play centre, I can still put down some rather thick playmat to at least cut a good portion of the noise and chance for bruising himself. I've also ordered him a giant beanbag (double strength, two layers and extreme seam-locking to prevent splots and spills) which he should be able to fall onto as much as he pleases - the thing is nearly the size of his twin bed, can be folded any which way and shouldn't break even under his ministrations.
He's been having issues with being in the dark (he's been sleeping with his overhead light on for months now) so I've managed to find a few more sensory toys which light up and change colour, a few that even dance with the rhythm of music - all rather cheap. On top of this, I'e purchased a ceiling poster of a nightscape - a rather large one that only looks like a white sheet of paper during the day, and at night starts to glow rather convincingly. I considered painting the whole ceiling with the same stuff but relented as I don't know what his reaction will be - no good to me if he panics almost immediately, and I can at least take the poster down!
Boxes and boxes of books - mostly from his father when he and his sisters were children - have been put away; sprog isn't reading yet though he is making more attempts and showing an interest. However, sorting through four boxes of books to make a choice for an evening story made it more trouble than it was worth. So now, there's one box of books which are on sprog's reading level, all where he can get to them, and the rest have been put away.
Toys sprog has lost interest in are now either in a box for the charity shop, stowed away to be brought out during the summer when they might be more interest and "new" (though like most children on the spectrum, Sprog's memory is nearly photographic and nothing is ever quite new to him again), or bagged and thrown away if they were broken or pieces were missing, etc.
So at least now it's a lot tidier! I'm getting things in place for the next stage - yes, I will be taking photos as I go!

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0 comment Tuesday, July 22, 2014 |
I had written a pithy or perhaps whingy (depending on your viewpoint) on the Hardest Hit march, but it's gone poof. I can't dig that up again, especially when disabled hate crimes have risen in my area (three people in wheelchairs have been attacks in the past two weeks in my area. I live in Wiltshire, not London, FFS).
*Deep breath*
So I'm going to talk gardens and beer; which I know isn't nearly so interesting for the disability-rights folks who come to visit. But the thing is if you're not enjoying the little bit of life you have, everything becomes hell. I need to take my time out from watching my child regress (yes, it's getting worse, his concentration is going as well as his interest in the outside world). So, I do other things to get my breath back and try desperately to get through the next bad patch.
Today, it was racking the Gnarly Wine and getting the second treatment of finings into the demijohn. I've done this once already but it's still rather cloudy. It might clear, but who knows?. Perhaps not - it may need time in the bottle for a year or two before that happens. In any event, I also managed to get the strawberry cider started - and even did this in between working on the final draft document for sending in my son's appeal for LEA tribunal. Go multi-tasking me. The Primordial Cider is now sitting beneath a towel, yeast starting to activate, and it will be a few weeks before it's ready to put into the bottle, and then a month more before it's ready to drink but I'm looking forward to it.
Also arrived in the post; my "Salsa Garden" from Rocket Gardens! I'm rather chuffed about this, as there's a great selection on offer though now as the weather has become a bit colder I wonder if I shouldn't have kept the growframes up for a bit! I have some Yellow Brandywine toms, Gardeners Delight Toms, Greek basil, three new mint plants, and a dizzying array of peppers both hot and mild. I managed to get these all potted up and watered - though the Brandywine toms are very leggy! - and as I eye the weather for the week I am considering going out and covering them all with some plastic for the night. I took the growhouses down as I felt they were superfluous but now I'm not so sure.
Everything else, however, is shooting up like mad. The spuds are growing amazingly well, and the raspberry and strawberries are setting fruit now. The loganberry is starting to bloom and the dog-roses I planted outside are the favourite stopping place of honeybees, stocking up on pollen and nectar and buzzing like anything. The roses are all getting ready to bloom and I'm stunned at all the bud formation on my flowers - the ones in the back garden are looking to be quite impressive! The front garden not so much but that's mostly due to all the dry and the fact I'm never certain they won't just get vandalised.
There are bits of the garden which have got away from me a bit - the side of the house is well overgrown and I'm going to have to take the hedge cutters to it to beat it back. The front hedge is going a bit nuts as well but I am actually trying to get it to grow a little higher so no issues there, I may give it a "short back and sides" and encourage the top to grow a bit. I haven't bothered to do anything with the snowberry this year, and the cleavers is starting to compete with the found peony, which I'm going to have to move once I can figure out where to move it to.
Still, it will give me stuff to do, and the one moment child came out of his head for a bit, he pointed out the roses were blooming. I'll be looking forward to bringing our first bouquet of flowers inside as I'm sure that will put some light in my son's eyes again. I pick salad every few days to have as lunch or tea, and grin at the latest cat exploring my huge patch of catmint. The albino blackbird comes down to strut about and flash his white feathers at rivals, and I prepare to have my first home grown fruit of the year.
I breathe in, and breathe out, paint and create, fold clothes, and just put aside the fear for a while, as we all must learn to do.

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0 comment Monday, July 21, 2014 |
Due to autism being a rather invisible disability, and one that can appear to others to be just poor behaviour, it's a sticky wicket taking sprog anywhere. This weekend he's going to the zoo with the Ex, and the planning that goes into such an endeavour is considerable; a disability living allowance award letter so he gets in at the low rate, calling the zoo in advance and letting them know that a disabled child is coming and sometimes even giving a photo to the information desk in case sprog should get lost. Sprog is armed with an autism card, a medical ID bracelet, and Ex is even considering a T-shirt which says "autism" on it.
Now, there are huge opponents to this sort of "labelling"; the autistic-children-are-no-different-from-mainstream-children camp are appalled that anyone would stick a label onto their child, stamping them with a stigma tag. They believe it singles children out and makes the disability come before the child - in short, they want an autistic child to be able to "blend in". However, it's quite clear from the way my son zooms around and can often be rather violent that he is NOT going to blend in. Bang goes that theory.
And of course there's the other camp of people who either don't have children, or have mainstream children who think it's a boorish thing for someone to do, emblazoning "autism" all over your child, to get "sympathy" perhaps, or something of the sort. However these are quite often the very people who are aghast at an autistic child's behaviour and will say in whispers - which are actually said quite loud enough for you to hear - what an awful parent one is to allow one's child to act in such a way. Unfortunately, these are also the same people who will audibly whisper what an awful parent one is to slap labels all over your child.
The simple fact of the matter is if people were more compassionate and understanding - or at the very least would mind their own flipping business - the need for labelling would be moot. We wouldn't HAVE to make all these provisions just for our child to do something as simple as a trip to a zoo - something most families don't really think about - if people could just let us get on with it, give us help if we needed it, and do so without judgments. However, it would be unwise to hold one's breath in that regard.
So, in preparation for tomorrow's trip, I've prepared the necessary "autism tackle", ex is armed with a disabled toilet key, will be taking sprog in first thing as soon as the zoo opens when it will be relatively early and not so crowded (as crowds distress Sprog), information desks and security will be duly told about sproggo and ex will run himself absolutely ragged round the zoo...probably twice.
In the meantime, I have loads of provisions-shopping to do and a room to strip of wallpaper this weekend. Maybe I'll even manage to get out for a pint for once but let's not get too optimistic!

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