Proper settling in

The past few weeks I've had meetings and more meetings. Things are getting sorted, slowly but surely. Have now had a look at another school, feeling rather confident about that although will have to really fight for it since it is a special school. Have visited a riding school which quite honestly I felt was a bit of a waste of a trip (child is very intolerant of staying anywhere for longer than five minutes) but I now have the paperwork to sign and can just carry on from there. I have more agencies to look up, next week we go visit the respite carer, and then I still have to get blood tests done. Still, I paint when I can, but not because I have to. I've been baking bread regularly, brewing mead (racking, stirring, more racking, you get the idea). I go out and prune the lilac; one good days I potter about, and I get things done and take days easy.

Some days, I can't do any of that. And while it's not ideal, at least I don't have to try and force myself to do my slotted 30+ hours this week. So if I need to nap I try and take that nap. Sometimes I try to get out and about with child. I can't play his video games with him anymore however because my reflexes and my hands aren't in great shape. That's a drag actually, but we make pizza together and it makes up for it.

I've been surveying the house this week - deciding which projects to take on; there's decking to scrub and paint, sewing area to set up with more shelving before I can start using it, eyeing the beds and trying to figure out what will go where - mostly herbs this year. Shuffling things around now that I'm not in a crush of moving and heading into winter, and getting more of a feel for the space I'm in. The chaos of boxes from items I still had stored away are getting crushed down and recycled, everything getting placed and put away. Old clothes and toys are getting moved on to other children, cleaner coming in to try and make sense of the mess, old papers I don't need getting composted.

The rhythm of our lives is starting to settle a bit. It's creating a foundation as there's still so much challenge and change going on, and will continue for the next few months. There's still so much to do, and I still have issues I have to fight, things I have to put in place, meetings and consultations (never-ending, I swear, just when you think you can have a moment to breathe, it's another meeting). The need for home and peace, for good food and a cup of tea, for music and time to sleep on clean sheets - all of that is paramount and vital.

It has been a tiring day, but it has also been a good one.

So much coming together

The multi-agency meeting was held - now I have to apologise to my son's old school as I have met the driving force behind their backing out of every single thing they knew was right for child; the LA head is a nightmare. She actually tried to edit the meeting minutes of her own bloody words...appalling. In any event I called her out several times (mostly because I was too exhausted to be diplomatic) and I caught the glare from her as I did so. I guess she was expecting a parent who would just sit down and be quiet - she was wrong.

The upswing of the meeting was we came away with a lot of information as well as strengthening my case for getting a hell of a lot more help than I was getting - with a fair few realisations from all the agencies that what they thought was being covered by another department obviously wasn't being. Things are moving forward with some respite for me once a month, for some activities for child at the RDA, for me to investigate a special school (rather nearish, has children like mine there), and also the acknowledged-but-let's-not-say-the-actual-word issue that my son has now gone from just having autism to having complex needs. That's an important issue - as that's what really hinges on him getting into a special school if those criteria apply. The difficulty of course is getting the LA to admit it.

Shouldn't be too hard however since the sheer amount of people who are now having to be involved just to get my son into three hours of school a day surely points to the idea that he could just go to a school that already has this stuff in place without it becoming such a headache! And I'll be visiting a school I have in mind on Monday.

All of this has put a fair strain on me regardless and when I went into the meeting I had skipped breakfast, not so much because I wasn't hungry but because I had to admit I literally hadn't had the energy to chew. Yes, the fatigue can get so bad that eating is an effort. I had food in the fridge, but the idea of having to cook it was something I just couldn't face at that point. Again, the deer-in-headlights look which I was given at this admission made me realise my idea of "normal" isn't really everyone else's...and rather than just try to make do with that, I should be getting some support.

While I was busy crossing things off the checklist for the upcoming report I once again realised I hadn't eaten anything and my tea has been sitting on the side for over an hour. I'm shattered, but I've managed to get most things off today's checklist, then have next week to get through, and after that it's half term and a full week to keep child entertained in somehow.

I need a nap

Winter's Last Gasp

Yesterday, we had our final cold-snap come through. This tends to happen around end of February so I was expecting it. Son was over the moon! It didn't last long and it's now rather icy outside as the snow melted, then froze, but there we are.

Rather glad that I managed to get things transplanted this weekend as the ground is too cold now to muck around in. The plum and crabapple are now in place and the loganberry has been moved to its permanent location. I also repotted the honeyberries, the bilberry and ligonberry (and slipped a cut up lemon and orange into each of these pots to raise the pH level). I am not really expecting much to happen with the latter this year as I need to take some cuttings and propagate them for cross pollination, but at least they can get rather well established.

To my surprise, the hazels are trying to form some leaf-buds. I don't think I'll have catkins this year but who knows, I may be pleasantly surprised as these trees are actually a fair bit older than I thought they were. I actually find the trees from Ken Muir are ready to produce a lot faster than many trees and bushes supplied young from other places; last year I didn't expect apples or pears but lo and behold! Got high hopes for the cherry and plum this year, though the mulberry will take another six by my reckoning. Back to the hazels anyway: I've planted them rather close together for now, but I'll probably move them in a year or two for better spacing as soon as I get more of a feel how the sun and wind moves around my plot. The mini orchard already feels very cramped before I ever put anything into it! I'm still learning the space, still learning what's in the ground just lurking and waiting for spring.

There's bulbs everywhere, for one. Crocus and daffodils and bluebells; there were pots filled with mossy soil and I had no idea what was in them, but there was one way to find out - so I dumped them out and dug through the dirt, finding corms and tubers. These were cleaned off, examined for damage, then put back into the dirt once all the top-muck was cleared off, with some fresh topdressing. The frost is on out there but soon I'll have some spring colour all over and I'm looking forward to it.

Today I'm dragging - out of milk for tea and I loathe drinking my tea without milk so I'm not as awake as I'd like! Exhaustion and cats waking me up at 2am regularly is taking its toll, not to mention general Languishment. Still, I made bread yesterday, and bottled up a batch of mead. Birds have had their morning feed of the heel end of the new loaf, and I've had my toast today. As much as I want to push to tidy up some of the papers I have lying around and get a start on my day, the utterly "zombie-like" feeling I have at the moment is telling me I need to just put a damper on that and get a power-nap.

So, doing that.

Back to frugal

After the decision for the DLA appeal, I received a letter from the DWP office. Apparently they aren't going to pay out my son's DLA until they review the court's decision. And they may even consider appealing the decision as well. This is unheard of - actually very rare, but just another way the DWP wants to keep screwing about. There's nothing I can do at this point although the letter says if the decision will "cause me hardship" I should contact them. Well tying up about £400 a month with dithering is indeed a bloody hardship, thank you, my son needs new shoes and I need the money to get him into a taxi to get him some. Sods.

So a stroppy letter shall be written and I'll have to get my social worker to back this up as well. If they're stupid enough to drag this to an Upper Tribunal, I'll be beyond angry but I have to keep in mind that they might. However considering the panel came to the decision very quickly with no further input from me I doubt the DWP has a case.

In any event, what this means for me right now is I have to bank on losing a fair bit of dosh away for a little bit, and be careful with money. We've been eating from the pantry but we're running low on supplies, so I've got an order to make, letters to write, and have to dole funds out a bit over the next month or two. It's not a dire situation, but it's tighter than I'd like it to be. Even so, the perks are I am looking at the extensive mini-orchard I've got going at the moment and I will be sorted for fruit, onions and garlic this year!

At home, due to one too many blowups (and also getting rather tired of child doing little but video games) I've put up a timesheet which has various activities spanned out over the day and week. We have cooking times together, and reading and writing times (not without considerable issues, it must be said). He has play time, room clean time, time doing OT balance board, time outside. He can now look and see what's coming up, and there's a lot less fuss. He actually spent a half hour doing his room in a way that pleased him - I was impressed! It's not a perfect system; if son knows that an activity he doesn't really like is coming up, he can obsess over it and wind himself up for hours before the activity. Not fun, but it's just all part of the parcel, and we carry on.

Next week is busy as I have appointments to make, letters to write and things to do. But I'll get them done. I've stitching to do as well, and plants to prepare but with daily outdoor activity on the cards I hope moving around will do me some good.

Changing gears

Even though it's only the end of January, I've been feeling the urge to get ready for planting and moving forward this year. Things are still rather grim for many people (if you've been following the "progress" of the Welfare Reform Bill, it ain't pretty), and I've had to make a decision, once again, about working. As in, I shouldn't be. Health and sprog stuff still too tenuous. I can do half-arsed in just about everything I'm currently doing right now, or I can take some time to actually concentrate on one thing at a time, and when I feel stronger and more steady about Life, the Universe, and everything, I'll work.

So painting and writing is back to "hobby" status. I do it when I want to. I don't do it if I don't feel like it. Yes, I'll miss the tax credits but I won't miss the stress and late hours and frustration of trying to ship orders without a vehicle. The "Frost Thurse" and the painting of "Mani of the Moon" were both done with no pressure over a very short period of time, just playing, experimenting, and having fun with the process without expectation. It was easy, at least as far as compared to grinding out "popular" pieces for people to buy on various holidays. I like that really. It can stay that way for a while; it means I have time to play and learn without sticking slavishly to a schedule. It also means I have time to make glorious mistakes, and maybe learn from them in order to keep from doing them again. I suppose I should be freaked out about the lack of income, but I'm feeling rather sanguine about it. That's probably the sign it's the right thing to do. Sleep, heal, grow, learn. Rinse, repeat, enjoy.

In the interim, I've got a bunch of stuff to get into the ground - I've planted seeds for herbs, I'm still putting shallots in the ground, topdressing all the potted minarettes I have. I've put the hazels into position, started thinning raspberry canes and still trying to get an idea where the loganberry will go. The ligonberry is currently in a pot, the bilberry as well (and I've put some orange peels into that pot to keep the acidity higher). The honeyberries will get put into a long box until they get rather well established then I'm considering putting them down in the mini orchard. I still want to know how the light falls down there in spring and fall. It seems the sun gets lost at the moment due to the wall and the lower elevation, but maybe the sun hits pretty full during the summer.

I haven't had a chance to slog about looking for hazelnuts yet, but I've heard people say the catkins are out already! In January! Yowza. If my feet will manage to allow me, I want to go out and slog to try and find if there are any hazels nearby. I know where the acorns are, but I haven't found much else. Will have to do a full forage when I have more time, energy, and less pain, but that will take time.

Yes, that's the thing - pain. Too much of it, and I'm in a place where my support base is well away from me now. I've no fall back plan if I'm flaring, and so I have to keep flares at bay. I am now exactly in the cusp of three counties; on the one hand, there's the hospital I had before which, while nice, didn't have much to actually help me with the arthritis I have. On the northern tip is a very nice hospital specifically dedicated to rheumatic diseases (one that is so nice, some of the patients who recommended it me say it's more like going to a resort than a hospital!). There's a lot more treatments and management - entire clinics for conditions rather than a leaflet and a "good luck", and that's what I need. Can't erase the conditions but I at least don't want them ruling my bloody life as much as currently.

Have to manage the pain and fatigue to be able to drive, to learn how much of the latter I can handle, learn everything. Lots to do. Lots to do.

I'm giving myself the time to do it.

So tomorrow I have the social services in to discuss a very complicated plan solely to give me four hours a month of coverage if I have to go to hospital or doctor appointments (yes, it's a joke but still, four hours better than the nothing I had previously). They want to give me "more choice" by fobbing the job of finding someone, keeping track of pay schedule, actually act as an employer and do taxes, get maternity coverage, and all that stuff I've just had to STOP doing. Thanks, but I'll hire a service and save myself some hassle. On Monday the local "Neighbours" which helps to connect elderly and vulnerable people to make sure they're getting everything they need. Then I have GP visits and blood tests and all sorts of stuff I have to get done, paperwork, and preparations.

And sleep. And painting. And seeds. And cats. And tea. And devotions. And breathe.

Breathe.

Winning the War

It's been a grim time, really; child regularly excluded, me not able to get to appointments, everyone dithering, two tribunals (yes, two, I'm about to get to that). But I'm winning the war. Things are happening. Things are falling into place.

Today, completely out of it due to utter lack of sleep, I got a phone call. My son's tribunal hearing today, and I was nowhere near ready. Wait, what? What tribunal? The clerk explained to me it was for my son's DLA, contesting his low rate mobility. Blearily I tried to remember when I had tried to apply that. March? May? In any event, the Panel was there looking at the files I had sent and asked if I wanted to attend (which means they'd have to adjourn). I felt rather stupid but said that would do.

I got a call five minutes later. The clerk again; apparently the panel had had a good look at the paperwork of my son's report and decided that on this basis they would grant high rate mobility and his high rate care stands as well. No review till 2014.

I hung up, speechless, then squee'd like an idiot for a half hour. FINALLY, the full package. No more being told "well surely he could just walk 2 miles...". No more "well can't he just get on the bus?" Done. Sorted. Dusted. Squared. I am over the moon - I can even think about applying for a bunch of other things now; discount rates on taxi fares, Blue Badge, all sorts which will make life easier. And a car! I could get a Motability car now, provided I can get assessed for driving and so on.

Such a huge deal, I can't stop grinning. Independence would be nice - I know, it's early, there's still a lot to consider, and while I'm sleep deprived is not the best time. But just when I thought the Monday was a good start, it got better; social worker called and the panel has approved me getting hours of care so I can attend appointments (so no longer need to panic if I can't get a hospital appointment while son is in school). I also have the respite weekend approved so one weekend a month sproggo will go to a foster family so I can have a break. This is also coming together - granted, it's nowhere near enough help but it's better than nothing at all.

Now, I'm ecstatic - things are going well and we're making progress on all fronts. This is good. But...well, the thing is, I had to fight for how long for all this to happen? Why even deny my claim when a Tribunal panel takes five minutes to realise what the real issue is - (and that goes for my DLA and the SEN tribunal)? Why did it take a year of useless Social Services, three different assessments, four OTs and nothing happened until I wrote to the Ombudsman? In these times where the Hardworking Taxpayer is whipped into a frenzy over people like myself and my son, why oh why make it more difficult, more expensive, and more time-consuming? The evidence was there. It was always there. Nothing changed but the fact I had to beat the bureaucracy over the head and shoulders before they'd admit I was right in the first place.

How can that possibly be saving the big bucks the Government insists on by kicking us off the system? How can this give the results they're projecting? And how is it anyone can possibly believe a word of it?

Ugh.

Anyway, the good news is still the good news; help and support is trickling in, and considering the utter dearth of same up to this point, I'm content with it. A few more things to push on at the moment, true, but this is still some great progress.

On the gardening front, being the early bird wot I am, I ordered some kiln-dried logs for the chimenea and fire pit, as well as a bunch of potting soil and manure to start planting and topdressing everything properly. Son and I have had some celebratory toffee cake and even though last week was a big kerfuffle (I banned him from computers and video games due to behaviour), we're slowly getting back into things and the house is a cheerier place as a result.

I'm still absolutely shattered, but I'll carry on today. It's a good day.

The Elephant in the Room

I went to the Tribunal Panel today; feeling rather calm. I felt there was plenty of evidence and I also felt that maybe, just maybe, the Panel might actually have a look at how mainstream was, or wasn't working for my son.

I wasn't prepared for the fact that the first thing that was said to me was "How do you feel about your child being in mainstream?"

The LA rep - a man the local authority actually hired out of retirement to fight against my Statement, that's how desperate they are - was completely gobsmacked. I gave evidence about the fact I had been told before we even started that I had been warned mainstream would be a nightmare. I pointed to all the evidence which had been given, I told them that even here in late January my son was only attending one hour a day. I told them he had been excluded eight times, and had just been excluded after 15 minutes last week. The current head even gave evidence to how resistant his teacher is to re-training, and I was able to reiterate that this was going to happen no matter what mainstream school my son was in.

The LA rep tried to say "I thought we were only going to discuss Parts 2 and 3", but the Panel replied with "That is very true, and technically yes. But the simple fact of the matter is there's an elephant in the room; namely that mainstream may be entirely and totally the wrong place for him."

The Panel asked my advice, spoke to the head, again, and then asked for a recess. The other witnesses called by the LA actually came over to me practically cheering - I get it, they are required by their jobs to back the LA up, even though they may personally feel it's completely wrong to do so. But they were so relieved I had made the right statements, asked the right questions, and danced rings around the opposition.

However, there was a bit of a down point. We were called back and the Panel decided to go with an adjournment; to get the behaviourial team into the school to try and get my son into at least SOME school for the time being, but also to give me time to start looking for other schools if that is what I wished to do, and for the school itself to give its views after a month of the behavioural team's intervention. Everyone was struck dumb and completely silent - I guess we all thought the Panel would said "Right, he has to go to a specialist school" and people were gutted that didn't happen. Still, it's not their jurisdiction - they don't know what's around, they don't know what's available as they're not local.

It's not a perfect solution by any stretch. However, it is still a lot better than I could have hoped. The truth of the matter is there's so much that the independent advisors insisted needs to be in place for my son, the most sensible thing to do would be to send him to a school that already does this sort of thing, rather than expect a mainstream school to reskill for one child. And that apparently is exactly what they felt as well.

So, I have come home and I've started the hunting down yet again. There's one school left which we may be able to look at in Wiltshire, but only the one. There are others in Dorset but they're so far away it then becomes a question of whether or not my son needs a residential placement. Right back where I was earlier last year, in other words, but at least this time no one can tell me I should back down on it, as even the Panel sees the need.

This is a victory, really. I hope I can finally get things secured for my son this year and then maybe we can all breathe a lot easier and just get on with life.