from private vent blog #2

Aspies can be scary. Imagine one thats taller than you and a million miles more intelligent. One whose answer to every twinge of insecurity is to verbally slice in to you. One who consequently spends his entire life convinced that everyone else is both ignorant (comparatively true) and in the wrong. They must be in the wrong, they're ignorant.

Underneath all that is a person who feels perpetually shunned, like a square peg in a round hole, with all the attendant pains and insecurities, tortures and fears, glazed over with a hard shell of behaviours designed to make the pain go away, that make the people leave too.

Thats my brother. The thing is, he decided long ago that nothings wrong with him, its the rest of the (stupid, ignorant) world. You can't tell him he would personally benefit from diagnosis because all he hears is an accusation, that he needs his head examined.

40, he is, and somewhere inside that awful, abusive and dismissive shell, is a wonderful human being whose life and chances are wasting away.

My older son phoned today. One reason was to sort out Christmas. The other was to mention that he was safe, following the news reports of the boy fisherman, sole survivor of an upturned tug in the same stretch of waters.

Many fisherman swap around, go where the work is. Skippers on the bigger vessels have their hands on rota and will lend them out if another rig is shorthanded. You eat, sleep, shit, fart, swear, work and sweat next to these guys for weeks at a time, climbing over other bodies to reach your bunk at night. You rely on each other for your lives - the rope laid down badly, the cages not secure, the various pulleys and levers not oiled and maintained and checked properly could cost anyone his life, regardless of whose job it was.

He knows the boy, a 19 year old, who is obviously a blubbering wreck. His Uncle drowned beneath him. During the five hours that he was out there, he tried and tried to pull two crew mates up onto the upturned hull and just didnt have the strength. He is a sole survivor, all because the release mechanism on the floating distress beacon went wrong - it just never came up to the surface.

His other uncle is also known to the local fishermen, used to be a skipper himself, until the boiler on his vessel exploded and he watched as it blew up and killed his two sons. Yesterday his brother died too.

My son is 21. Already he can count three personal friends who have died at sea in ugly ways, doing exactly the job that he does. But he's ADHD. He sees the necessity to do the job perfectly, that a tiny fuck up could have huge consequences, but doesn't see any reason to fear, or to imagine another future in another job. Another part of his lack of empathic thinking is that he doesnt see the reason to soften these facts for me - to him its of great interest. Protecting me isnt something that would cross his mind.

I am tired.

My husband - well. He has ulcers. He tries to share them. I wouldn't call him aggressive, just, well, permanently disgruntled. Nobody else ever sees it. They get the guy I fell in love with, all the laughs, all the optimism, but he comes home and takes them off as easily as his coat and shoes. I am the refuge that allows him to have something resembling fun during his working day, I am where he can be himself. Its just a little inconvenient that I never get a look in. I love him, but I don't like him very much and he shames and depresses me.

I'd probably feel the same about me. I have no energy, no be-bothered. I am grey skinned and tatty, in looks, in mind, even in my home. I and what I rule have gone to pot. Maybe I'm depressed, but if thats true it has crept up in an insidious way, over the years.

I used to know who I was. Now I'm just this blob indoors, on call to others. If you gave me my freedom I would shun it, because I can't remember the point.

Tomorrow I have a meeting with the school headteacher, at the end of the last day of term before Christmas. My younger Aspie son, even with one-on one help for much of his schoolday, has run up too many half hour detentions to be allowed on the end of school trip next July.

They take all the kids to an adventure holiday park on the Isle of White - but too many detentions means the child cannot display enough respect for the rules to be safe. I havent had the heart to tell him - not before Christmas.

The thing is (and its happening now just thinking about it), if they corner me into an admission, something will snap. If I have to tell them that this trip means more than the world to him - not just for fitting in, but because we have never, in his life, managed a single bloody family holiday, that he has never gone anywhere further than my mum's house for e week every other year, then I will cry. I will sob like a fucking loony in the middle of the school buildings.

And I think that when I get out I will just start walking in the wrong direction.

I'm 44 for Christ's sake. Where in all my upbringing did anyone even happen to mention that life starts ok, and then it just gets worse and worse and worse. I was tricked and I got a bum deal. This is no fucking fun and I want a refund.

Bloody Hate Bloody Everybody, (from private vent blog) #1

My mother rang today. Can I return the battery charger that my psychotic little brother accidentally left behind when he trounced out of my house like some fucking prima donna after treating me like shit for a week.

Sure mum. It only weighs about 2 lb, has three prongs sticking out and involves buying a postage box and bubble pack and sending by parcel post and we've got no fucking money. But hey, for certain.

Then she mentions that she's sending me money for Christmas again. I hate that so much. I know exactly what she'd say if I sent her a Christmas card with a bloody tenner in it - I wouldn't hear the last of it for a year. Oh the pain, oh could you make it any more obvious, etc etc. Then she has to tell me how much, and add that (as usual) she's stuck an extra £20 in for my birthday present. My birthday isn't until the end of January. It'll go on bills. It always does.

It doesn't matter. £20 of the total will go on something for her to redress the balance - something she will be offhand about and say was 'very nice dear'. All of the rest, this year, will pay some of the Council Tax and stop the bailiffs from knocking for another month.

My husband - well - I'm never going to leave him, I've known that for years and at times we manage to laugh and to pretend that we've got something going on. We both hang on to hope. Or I do - I wonder if he even notices.

The last time he took me to a hotel was our wedding night fourteen years ago and someone else paid.

The last time he took me out for a meal was on my birthday two years ago (or was it three?) - he hadnt booked anywhere, hadn't arranged anything, had us trawling up and down the streets of Brighton looking for somewhere that wasn't too packed or too noisy. I like packed and noisy. He made me start walking back to the bus stop to go home at 9.30 pm, because he was tired.

The last time he picked up one of his own socks you could smell burning martyr and had to duck the glares for an afternoon.

Its funny, reading this back it shows all the hallmarks of a man in a hollow marriage - one with affairs. Its not like that, he really is just that fucking useless and disinterested and boring. He's a ten o'clock bedtime guy and like to blame the pressures of work, but thats bullshit. He's had several jobs and a period of unemployment since that old excuse first got an airing.

The last time he took me on holiday was, ooh, lets see; never. Oh I tell a lie, I got three weekends in Bedford somewhere in the last decade, to go take a wire brush to gravestones in search of his family tree. Fucking joyous. They were so long ago, it was back when I still believed we were just in a temporary financial low. It was temporary alright, we've hit a new low every year since.

He's too grand for caravans and too tight for anything better. Not that we could afford a caravan these days, anyway.

I haven't had any work since January. The reason I had no idea it was so bad was because we had a joint name overdraft in his account. Don't ask me how the bank managed that, but when they asked me to sign a bit of paper because the bills I paid from the housekeeping had to be transferred into the conglomeration, thats what it turned in to. I have to say, the housekeeping covers the basic bills - rent and Council tax, and nothing more - or at least it does when he transfers it across. I lie again, I have to bump it up with the whole of the Child Benefit.

The debt amounted to ten grand about five years ago, after a while when he was unemployed, and the repayments were due to finish after seven years, following another hiccup that saw the amount increased slightly. Still, light at the end of the tunnel; twenty four months to go? You must be fucking joking. He is so fucking lazy about adding up, about even looking at anything but the printout from an ATM that behind my back he took the debt back up to the max and over - to forteen thousand. A grand of debt for every year I've known him. The end of the debt is about another decade away now and its screwed my credit rating along with his. I didn't have a sodding clue until half way through the year.

On paper we deserve about £90 a month in working families tax credit - we're that broke. Still most of what we have on paper then goes on bills and debts. Still he hangs on to the idea that taking a packed lunch to work would be the ultimate indignity.

Wheres all this coming from?

Out of his grand or so take home pay he gave me all the spending money for this month. All of it. £220. I say spending money - thats had to cover kids' school dinners at £14 a week, the electric at £12 a week, so its more like £150. For four weeks' meals, guinea pig food and bedding, cat food, fares, the works. Oh and Christmas. If we want a decoration, or a turkey dinner, or a single present for the kids, its got to come out of that.

Never mind that he took every last scrap of freedom from me months ago, that every penny I have laid my own hands to has been through supplication for a set purpose. Not so much as a chocolate bar, never mind 'just because.' Bam, there in my lap is the full responsibility for the first time in God knows how long. I can do it, but could have used some advance warning, not him just rolling home one day and slamming the cash in my hands.

I bought a 50p jar of mild curry sauce from the Scoop & Weigh so we could have something nicer than egg and chips for Sunday dinner. When Gary had hold of the money we had a roast on sunday and some sort of meat (even sausages) every night of the week. Even beer on a Friday. No wonder he doubled our debt behind my back.
I defrosted the last four chicken breasts out of the freezer so we could give the kids meat once this weekend. He decided he was cooking once he'd started, swore at me that I was under his feet, to get out and let him work. Could I just sort the dinner table.

It was covered in daughter's art projects, paperwork, various bits and bobs and I went and sorted it, got the kids to help and got everything put where it goes instead of shoved on a bookcase. We'd just finished when he brought the dinners round. Then he shouted at me so loudly, swore at me, in front of the kids because I hadn't picked up four forks from the kitchen I'd just been banned from.

"Fucking hell, I ask you to do one fucking thing....." and on and on.

I couldn't eat. Boy, but I wanted to eat, it was a proper meal for crying out loud, but my chest tightened and my throat closed the way it always does faced with unprovoked attack.

I went away and cried, leaving him to hold the family together at the dinner table. So far today I had eaten toast. Yesterday and the day before I ate toast. I think that for about the last two months I have eaten mostly toast. Except the days when teh last of the bread went on the kids' breakfasts, when I then ate fuck all and sunshine until he got home, seeing as how then he had all the money, so I had to wait for him to pick stuff up on the way home from work.

Anyway, I came back to put tin foil over my meal, to try and salvage it, and found the kids still eating, but he had wolfed his meal already and was sat on the sofa, channel hopping so that they were left on their own. At that moment I hated him so much that there werent words. Ulcers? Yes he's got ulcers. Stress my arse, it's eating like a fucking pig on speed thats done it.

He sat there, stony faced and channel surfing, until I sat at table and tried to eat. Then, did he join me? No. Did he relate to his kids? No. He completely ignored them so that I had to issue instructions from room to room, from the dinner table - even when they were rowing on the sofa right next to him. Then when all was quiet and I had a chance to eat, still shaking, he starts shouting commentary on the fucking news program.

Not 'Did you know...', but 'It's coming down over near your mum' or 'Kevin'll be out you know.'

Who? Out of where? What?

I asked him to shut up and let me eat in peace in as unwavering a voice as I could manage (it was still pretty warbly.) I couldn't resist it. The moment I had finished, I sniped at him.

"There you go dear" said I; "I am now available for your indecipherable half sentences."

Did he notice the slight? Did he fuck. He took me at my word and obliged. He does that you know; the kids can be talking to me, I can blatantly be in the middle of something, and he will saunter in and just start like nothing and nobody else matters.

Our son has Aspergers. Gary has looked at the list of symptoms and will tell anyone he can find, that I am more autistic than him. Yeah, right. I want the bloody brain scan.

I also want out. Except that, as for the last forteen years, I care for him. I love my kids and they could do without noticing the upheaval, and in any case I have no funds, now job, no self esteem and nowhere to go.

Fuck fucking fuck fuckety fuck.

43 Things = 2 = 2 Million

Yesterday I joined 43things.com

I haven't linked yet, because I have only come up with two goals:

• Organise My House
  
• Get Organised (aka organise my head/life/targets, whatever)

The first is an essential precursor to the second because the whole place is such a mess that I can't think straight, and the second is hopefully a foundation for doing something about getting a job, or a goal, or a life. Or something.

So far today I have:

• Gone shopping (oh wow, not)
• Ordered the forms to take Son's special needs to tribunal
• Requested a copy of meeting notes from Parentlink
• Unblocked the outflow pipe from the washing machine
• Scrubbed out and replaced the leaky U-bend fixture using lots of PTFE tape, on my knees, in a smelly puddle
• Run a boil wash full of soda crystals to: a) check the seals (yay I rock - no more drips) and; b) try and remove some of the smelly gunk that was settled beyond the U-bend (I got a lot out with my trusty unwound metal coat hanger, but it still stunk in there)
• Cleaned out the guinea pigs! Well, two out of four, anyway. They belong to the kids and it should be their job, but dramas got in the way this week and we have a schoolfriend round to tea tonight, so best not (with the heating on) to smell like an ammonia bath.

This leaves:

• Phoning the SENCo at school to nab her meeting notes, see if she or the Ed Psych are prepared to go to tribunal on my side, see if the hint that a letter from the Head would change things is going to have any effect, etc. After all the work she has put in, I may leave her in peace until Monday.
• Pull the washing machine out once the program has stopped, so I can crawl round the back and scrub out all the remains of the gunky leak from the outflow. Definitely a 'today' job because only then can I -
  
• Put everything back where it goes so there is room to walk into the kitchen without doing a tiptoe dance
• Clear up and do proper tea for four kids - my two, plus friend, plus granddaughter, who is coming over to stay tonight.

I say 'proper' tea because after a school dinner, often (hallelujah) my kids just want jam or peanut butter sandwiches. When friends come round, however, tea involves chips and then ice cream.

After that, ie by 6 o'clock tonight, I will be back up to date as in:

• All the normal household paperwork, letters, etc will still have to be done
• I still have to take a snow plough to the detritus in daughter's bedroom so that we can pull out the visitor bed.
• The rest of the house is a tip as per.

Still, at least by the end of the day, I may be behind by about a week, but won't be going backwards anymore. That's me, Mercury (which changed yesterday) and Mars (today), all going in a forwards direction again, for the first time in, ooh, ages.

All good stuff.

Sorry I'm not getting around to comment. Sorry too that this is a 'my boring life' post (again), but I hope it explains that I miss you all, value your comments, and look forward to catching up and reciprocating.

Tomorrow?
Please God.
Please Husband.
Please house, cat, G pigs, kids and grand kid.

Oops - time to go get the kids. I nearly forgot them (I tried, honestly, but it didn't work.....)

To Tribunal We Shall Go.....

... but at least after today's meeting that's not so scary. For those that understand the workings of school stuff and how nobody ever makes a definitive statement anymore - the SENCo stated they are providing beyond SEN+ and its still not enough, even in a junior school with only 400 pupils.
I said that by the NAS' own stats (thanks Astryngia), 1 in 4 kids on the autistic spectrum still get expelled and SENCo said "Yes and in a large senior school, Son will definitely be one of them without more support".

Lots more was said - school teacher backed up the possibility that he is gifted and cited the difference between the reams of intelligent comment he can make if he has an amanuensis and the six illegible words you will get if he has to write his own answers. As it turns out (as evidenced by contortions of eyebrows and much scribbling) his 'strengths' had been a deciding factor in not granting the SEN statement, because he was performing somewhere just inside the 'acceptably below average' section of the chart, academically.

Beginning to realise the situation, the woman from the county felt that the SENCo daring to make definitive statements was encouraging stuff that she could take back to her boss. She asked the Educational Psychologist, in politico-speak, whether she would endorse what had been said.
"No" says the Ed Psych
"Not [whatever the noncommittal acknowledgement word was]"
"Lets lay it on the line - he needs a statement. I am prepared to state for the record that this kid would not just benefit from a statement, but needs one."

Wow.

Much was then addressed to me, from all quarters, on how extremely unusual (read: unheard of) it was for a professional employed by the County to be so forthright (read: risking of wrath from on high for costing them money?). This was apparently even bigger news.

All that added to my apologetic remark that I would have to go to tribunal this time, that OCD and depression are closely linked with Aspergers during puberty and that I have to know what the final educational remit will be before he becomes hormonally unstable on top of his other issues and, well, the lady was mumbling things about being able to see that this one wouldn't go away - that even if I didn't go to tribunal there would almost certainly be another application for statement in six months time, from his next school.

She overlooked the likelihood that he would be expelled and in a tutorial unit before that, but hey.

So, like I say, I have experts declaring themselves for Son. So long as they are prepared to do that again on paper asap, to back up the notes she took, and then again for the tribunal, I think we have hope; and if the County thinks so too, then they may look again, to avoid the mess of a trip to London and a formal hearing.

Please God.

Tomorrow I have to phone the County for contact details for the tribunal organisation, and set the wheels in motion, this to be followed by much form filling, evidence declaring and calling of witnesses. Joy. More work.

Email #18

Me to SENCo at junior school:

THIRD time lucky (second wouldnt even send).

Its a word document at this URL: http://www.sussex.ac.uk/equalities/documents/autismaspergers.doc

Cheryl

Fairy-Itis

Well now I feel just like the fairy on the Christmas tree.

Slightly less shiny than previous years,
A little bit flattened from storage,
One or two bits threatening to fall off,
On display with a huge rough branch shoved where the sun don't shine

but still smiling.

(Because smiling is expected.)

Sorry there hasn't been a post for a day or so, but it's this school Christmas malarky and everything else thats going on.

Outfits to make; teachers who expect all parents to have an inexhaustible supply of white bed sheets for cutting up, one kid in total stress because he loves performing but hates being seen doing it, the other who loves it full stop and keeps (not so spontaneously) bursting into renditions of this or that chorus at all the most inappriopriate moments (i.e. whenever anybody, even the cat, is watching) - you know; all the usual.

On top of that, husband is the furthest from signs of Christmas cheer out of all of us to the point that I can't hear the swear words for worrying about his health. He's been stranded to do a two man job on his own for the fourth week almost in a row and comes home looking like he has been stood in the middle of the motorway all day.
Put it this way, its your job on the line if prisoners hurt you, hurt themselves (even accidentally), hurt each other, or nick stuff from your office (like all the teabags, or worse, a mini screwdriver) which later turns up on the wing. If you don't have someone 'doing office work' to watch your back, then you can't teach one on one. You still have to, you just have to work out where and how to position yourself to do it and you can't really give that student your full attention because you have to listen out for the others, all the time. They all think its a great laugh, and an excellent opportunity to have a lark. Its just like an EBD school but with tougher sanctions from the Head.

Eight hours of that sort of pressure should be a once in a blue moon thing, not every bloody day for four bloody weeks.

Its a blessing if he comes in the door, heaves a sigh and clears off to the bedroom to lie down and do the newspaper crossword.(*)

And me - what about me.
Yesterday we had visitors. Tonight we have the school Christmas Concert. Tomorrow there is a reprise for which we mercifully do not have tickets, but we have to walk the kids back to the school and then go and collect them in an hour and a half. Oh, yes, and at four oclock tomorrow I have a meeting with:

• The SEN Coordinator at the school
• Son's teacher (also acting Deputy Head)
• The Educational Psychologist
• A worker from Parentlink (on my side and knows the SEN code and the law inside out and upside down - very handy)
• My SEN caseworker from the County (The one that summarised the statement applications and made recommendations to the assessment team that resulted in Son NOT getting his statement,) and
• One, possibly two SENCOs from senior schools - the one we want him to go to and the one he'll be stuck with if we can't get this Statement granted.

All great stuff.

Housework has been on the minimal side, I have been using carrier bags as filing cabinets, especially when all the special needs stuff has still been spread across the dinner table come tea time. That wasn't so bad, as I have all the crucial papers on the computer, except that now the second printer has died, so I have 24 hours interrupted by a concert to find, flatten, organise and make a battle plan out of all the paper they've sent for the last two years. I can't use the emails I've sent because I don't have hard copy and will have to handwrite crib notes from them.

It would be one year's worth of paper, except that this year's Note in Lieu (advices you get if you don't get a statement) misses off or ignores half the issues they acknowledged in the last one. We really are worse off at this time, than if I had kept quiet and accepted last year's findings.

I shouldn't, but I find myself wondering if this is someone's idea of 'serves you right'.

So, anyway. Tarra for a day or two.

Have fun!


* If you know where his blog is you might notice that the humour has become very dark. In fact the title of prime Christmas tree fairy goes to him, I think (minus the bawdy connotations). The smile really seems to be there by grim determination alone. Maybe because I know him so well, the attempts at humour just look a little, um, hollow, to me. Lacking in warmth, perhaps. Worrying. Maybe I should be proud he can come home and collapse; that it could be just what he needs. If you do go over there, big him up for me, would you? He's under stress and I love him to bits.

Butts and Bozos

Was going to do a blog with Betty Page's bare butt in it. Hers was feted. Hers was also bigger than mine, which is somewhat reassuring. Wrote it twice, got bombed out of blogger twice. I can take a celestial hint, you know - if it bashes me across the head two or three times.

It was Segue's comment at Zilla's that got me Googling to find a nude picture of said lady. Happy Birthday, by the way, Segue.

On the school front, I am more and more prepared for the meeting with Son's new teacher on Monday. In spite of supposed careful hand over from year to year it seems that:

• She has eradicated use of his three level stress warnings, used by his previous TA and teacher to great success, to educate him on how loud he was becoming, as he has little volume control. Now he just doesn't know he's pushed it too far until its too late and he's in trouble.
• She has allowed him something to fidget with as an aid to concentration, but has insisted that when she is speaking to him he is to stop fidgeting and look at her face. In other words she has no bloody understanding of his neurological issues at all and is actually forcing him into a pattern of behaviour that makes it much harder for him to hear what she is saying. He needs to be looking away and doing something vacant to occupy the rest of him, in order to clearly hear her instructions - reduce stimulus from the eyes and allow his fingers to hear her words. He has to be moving to absorb info.
• She has had several stern words with him about not saying 'sorry' with enough sincerity. Without home school communication when this happens I can't say whether he is being facetious (He could out Bertrand Mr Russell) or whether he is genuinely saying sorry. When he is genuine, the voice is flat and a little clipped and there is no eye contact. I know which scenario I suspect.
• Last week another special needs kid, one that Son counts as a true friend, threatened to commit suicide, even running scissors up and down his forearm. He got a half hour detention for it. Son, not understanding the mechanics of that decision, was so distressed that he ran from the room, found a table and chairs in an isolated corner under some stairs, built them into a cave and hid under them. He was still muttering to himself to calm down over half an hour later, got in trouble for doing that in class, and got a half hour detention for trying to walk out of class when he felt unsupported. Obviously the teacher sees it differently, but neither incident was even mentioned to me by the school, whereas last year or the year before I would have had an instant phone call, to allow me to work through the issues appropriately when he came home.

The more I ask him, the more I begin to suspect I have an 'old school' teacher here, that what goes (punished but) dismissed and unreported to either me or the SENCo, all adds up to show what a great job she's supposedly doing and how the essential strategies built up over years arent necessary in her class because she's Mrs Super. It appears she has no idea of, or interest in his differences and sees herself charged with pressuring him into behaving like a neurotypical kid, as if, if she just keeps being stern, somewhere in his head the penny will drop.

She doesn't seem to have even considered that he might be in torment - her main concern seems to be that whatever is going through his head, success means that he sits still, shuts up and doesn't take her attention or complain.

Never mind that for five years the top goal on his ILP was to put his hand up before speaking.

And there she sits, believing that close home school communication is a sheet full of sad or smiley faces recorded each lesson and shown to me at the end of the week.

How many teachers are fixated on behaviour as a boon or disturbance to the way they like to educate? How many feel that the limit of recording behaviours should be to show whether they did or did not comply with classroom standards, with no explanation or investigation of where the 'wrong' attitude came from, or whether their teaching methods actually allow every child to access the lesson content?

This is why so many Aspergers kids go into senior school and promptly show signs of OCD and clinical depression. I'm damn sure its got less to do with puberty as a hormonal and chemical condition than it has to do with puberty being the start of adult self respect and the increased need to fit in and stand up for oneself. Faced with confusing, depressing, disinterested teachers like that, where nothing I said was heard as I meant it, I think I'd go doolally. Actually I think I'd start throwing things.

Which probably explains why still, in this all caring and knowing and beneficient school system of ours, one in four pupils on the autistic spectrum still end up being expelled.

I have a meeting with her on Monday. I've already told her I am not on the attack - just seeking to work together. All I have to do now is depress this righteous anger and resist the urge to shred her to pieces with all the ammunition she's given me. I have to wangle this to make her feel that this is 'us' making forward strides, with her, as the expert, in the lead. I know thats one treasured emotional minefield of hers that would take a dozen counsellors and a year of therapy, so I am forced to work with it instead of challenging it. I am going to have to manipulate her, basically; to make her feel that reinstating all the tools and attitudes that the school has had up until her class is not only a good idea, but possibly also her idea.

I have to work out how to couch the condemnation as 'I'm just a dumb mum, whats your idea Mrs Expert?' and soft soap her social climbing ego out of damaging my kid. I don't like treating people like idiots, even when they are.

God help me.

Any ideas, I'm all ears.