Coming Up For Breath

The workings of an ill-educated, 11 year old Aspie mind with dyslexic tendencies, motor skills issues and an aversion to most schoolwork (like learning to spell 'leave') :

Son still wants to harness and understand black holes and be able to recreate small ones so you could step in in England and step out in China. Its not an obsession, just one pet project that he occasionally returns to, usually only when his mind goes blank, such as in those times when all young men's minds go blank, for example in the middle of tying up their shoelaces before school.

Son: So, mum, what's the only stuff that light can't pass through?
Me: Erm, your head?
Son: Doh, no silly it's dark matter.
Me: ??
Son: Dark matter, the stuff in the middle of black holes.
Me: I was going to say mirrors. It bounces off mirrors.
Son: Well everything just flies in to the dark matter in black holes and never comes out.
Me: So light passes through to go in then? Its just getting out is the problem?
Son: What, oh yes, like a giant hoover, only then maybe there's no dark matter at all maybe its just a hoover sucking and sucking and,..... and,....... I think I'm going to want to split the electron, oh and I think I need to learn quantum physics. Do I have time for a cup of tea before school?

So off he goes, to find the other shoe, and I know that come school time he will have other little brainstorms during the day, usually when the wrong teacher with the wrong droning voice is working her soporific magic against his power to pay attention, and then he will decide he needs a pencil, or to look at the sky while he thinks, and he will get up and wander off for whichever, in the middle of her soliloquy, and end up in detention.

He hates being called bad, but he doesn't really mind detention - especially if the headmaster presides, because then its quiet and the other kids shut up and he can think.

That was part one of today's post written with Abby in mind. Abby has an AS-gifted son, too and is a new blogger and fresh to the frustrations of having an able, caring, intelligent child with a label. Please pop over and say hi.

Today has been another one of those SEN days, specifically:

8.45 am (or possibly earlier) I got a call from the assistant of the caseworker who is doing up Son's special needs statement. The LEA is refusing to name my requested school on the statement (even though they keep telling me what excellent, valid reasons I had for requesting over others) until or unless the school agrees to take him first. Just a bit 'cart before the horse'.

The call was to tell me that 1st choice school refused him on the grounds of being oversubscribed, 2nd choice school (big gap between 1st and 2nd and I ended up scratching any alternatives from the request at the point of receiving the proposed statement) said, very interestingly, that they had concerns about accepting him, as they felt he would need a full time individual needs assistant. Funny, that's just what I said too. Just what his current junior school has being saying, also.

Annoyingly however, the local dumping ground, the one school we are trying to avoid but are stuck in the catchment area, said 'sure, fine, chuck him over here'. Well no, not in so many words, they just accepted him. The annoying thing is that I never once requested that school at all, it has only ever come up in conversation as an example of the sort of school he would fail in faster than the speed of light without an INA in place, and yet for some reason the caseworker decided to ask them if they'd have him.

Fuming is not the word.

I was on the phone to my contact at the NAS (National Autistic Society) before nine. Its all gone wrong, its all got to go to appeal and/or tribunal and that can't happen until the statement is issued, so back to plan A, which is to get the LEA to issue the statement worded however they damn well please, because none of that can begin until the final paperwork is issued.

Off the phone at 9.20, in and out of the bath and out to a good meeting about another SEN issue at 10am - this time a group meeting about planned changes to the way that education planning is recorded.

One rather awful brick did drop, however, our DARLING Labour Government (you know, the one that instigated DNA profiling for all arrested persons, even minors, and is not helping the innocent children - the ones that didn't really smash the phone box after all etc) to have their DNA profiles removed from the records, uhuh, Nazi Blair et al; they have decided to also allow a local (possibly national) pupil profiling database called CAF (Common Assessment Framework). This is ostensibly to save other children from the fate suffered by Damilola Taylor. Apparently it has all come about so that when 'professionals' have concerns about a child's welfare or education or anything, they can access the database and add their comment. They can access all the comments and information made by all other involved professionals, including the schools.

I can understand this kind of crossmatching and sharing of information IF either the Police or the Social Services have ever been involved - but the schools? Worse, there will be more than simple address details on there if your child is anywhere on the SEN framework, apparently, and is doubling as a kind of online individual education plan. Technically the police should be able to see if your sixteen year old once wet his pants in assembly in junior school.

Its only just started, its being trialled all over the country, the County is trialling it in my town and as far as I am aware I have never had one request for permission, one notification, one jot of information on what to do about it, how to find out if an entry is unfair or wrong, or how to appeal. Why do we have to write letters left and right, allowing for example an NHS psychologist access to an NHS GP's records for an individual, if that civil liberty is being undermined in this way without so much as a 'May I'? Not just for children at known risk, but for, eventually, every single child across the country?

Anyone got any good ideas on where to emigrate?

Anyway - home by 12, I had to drop that train of thought and started to email the SEN caseworker to say that my last email (ie please issue the damn statement) still stands.

Stopped to consider I ought to copy in the Head of Childrens Services who has now absorbed the duties of the previous head of the Education Department (who 'left', quote), and is the guy to whom I hand delivered a letter asking for his personal intervention, back on Monday.

Rang his PA who said that every single piece of paperwork that reaches his (or her) attention is added to a database for tracking purposes and that my letter hadn't got that far! Then she said not to worry, that my letter had probably been forwarded to the head of the SEN department. I pointed out that it was the SEN department that I was asking for help with, and her excuse was that her boss would in any case have to liaise with the SEN people to understand what was going on.

Me: So you are saying he would have sent it over to them asking for their thoughts
Her: Yes
Me: But you are saying that its not on the database so he hasn't actually seen it in order to send it over to anybody
Her: Yes
Me: So you are telling me that I can hand deliver a letter addressed to an individual by name and a.n.other can redirect it to someone else entirely without even informing the addressee or his p.a.?
Her: Erm, let me speak to the secretary downstairs, oh dear she's at lunch, can I ring you back?


I sent the email. I kept a blind copy so I can forward it to this lady's boss, IF they ever find my original letter and/or decide they are going to receive a request for help or want the follow up information.

One good bit of news, I copied it to the Parentlink team and they rang me back straight away. Sooner than wait for the caseworker to get back to the office (she's off sick today) they will send me information on how to appeal the school placement, so I should get that on Monday.

It's a start.

And now a story. Its only a silly story and I am making it up as I go along. I think it might be a cautionary tale, but we shall see.

Once upon a time there was a rat in a maze. Somewhere was the end of the maze and some apple/rat pellets/sustenance. He trusted it was there because he had seen other rats well fed. He had been told that food was his right by law, and that it was there, as long as he could find it.

The thing is that the men in white coats who had told him there was any food at all, were also the ones putting up little 'Exit This Way' signs all around the maze. Some only led to dead ends and some just led to a new hub of routes to choose.

The men in white coats kept telling him that the signs were there to help, that he must be the wrong size/colour for the last exit, or sadly got to it just too late.

There are two endings to this. In one he never finds the food, dies of starvation and is whisked away quietly before the other rats see what happened and cotton on. The cycle goes on and nobody ever gets fed except the trophy rats, there to convince the others that there is an end in sight.

In the other he is super rat, he breaks out of the maze by going over the top, and bites all the men in white coats and gives them bubonic plague. I am undecided whether the bastards still win in this scenario - I mean he might get his revenge, but will he ever get his rights? Probably if this were Hollywood and/or a fair analogy of the special needs process, he would win, and get presented with all the right food as the end credits roll, just as he's about too weak and miserable to even try and eat it anymore.

Humph.

Tags: Aspergers, SEN, Common Assessment Framework

Email #36

Dear PA to the Director of Childrens Services

Thank you for your help!

The letter delivered on Monday addressed to Mr Directed (altered - was addressed to predecessor) referred to the earlier email at the very bottom of this page.

To recap what was said in the cover letter, I was strongly advised by a contact at the National Autistic Society to ask Mr Director to intervene if possible, in the statementing procedure for my Aspergers son, as a last ditch effort to avoid going to Tribunal. Thats about it, apart from an apology that given the timing and the fact that my son needs a senior school for this September plus transition time, I am obliged to push forward with getting this sorted one way or another.

Needless to say I am the confused one playing piggy in the middle but the lady at NAS seems convinced that there are glaring issues in the way that the statementing process is being handled.

I have also attached a copy of my email to the SEN caseworker, of todays date. I have no choice but to ask for the statement to be finalised inside the two week school holidays however I do know that Mrs New-caseworker is off sick today and hopes to be back on Monday.

Again thank you for your help!

Best regards

Cheryl

Email #35

Dear Mrs New-caseworker

This is to formally acknowledge the telephone call I received from your assistant at roughly a quarter to nine this morning and to ask you to act (in bold).

I will now be looking at special schools, having only just been advised by an independant individual that Aspergers specific schools with full access to the national curriculum do indeed exist. You will recall that the lack of such schools was my main reason for seeking a mainstream placement with sufficient provision in place.

Meanwhile I will also want to investigate the appeals procedure against the decision not to offer my son a place at the mainstream school, P.

Please advise me on how I go about formally appealing that decision.

To confirm what was said this morning I understand that:

The LEA first rejected my application for a place at P on the grounds of the school being oversubscribed.

You then wrote to the Governors of P, R and S schools (thank you), declining to name the school of my choice on my son's statement until/unless the school first agreed to admit him, and received the following replies:

S - accepted

P - refused on the grounds of being oversubscribed

R - Expressed concerns that their special unit was geared towards dyslexia and that Son would need a permanent INA to flourish in their environment.

I understand that you have/will write to R asking for clarification.

Please will you confirm that I properly understand the responses of the LEA admissions dept and the three boards of Governors, in writing or by return email.

This does not change my requests as detailed in my previous email (copied below). Please could you now issue the final statement so that it is in place before schools re-open from the Easter break.

Many thanks

Cheryl

Meanwhile

A little side effect of the impending eclipse that some might have noticed is that everything's going as far bloody wrong as is possible. Astro-Friend says people are hyped up on nervous energy, like headaches when there's an electrical storm on the way, but somehow I get the impression that things and situations are going doolally in a way that no mere human could predict or prearrange.

In my own little world I don't appear to have the graphics software or the savvy to start off with a 200dpi badge template from cafe press, and a few colours and a bit of text, and still have the damn thing be 200 dpi when I'm done. It won't have it, so anyone who's hot at graphics and could rescue me is very welcome to do so! In fact you would be my hero and linked mercilessly with or without public and gushing thanks (as you wish, depending on whether or not you fear a stampede of sundry bloggers with similar requests.)

Meanwhile I am letting down a very lovely lady who runs things over at Aspire.com and is waiting to see the final design to give approval for their URL to be used. Aspire is the site that organised International Aspergers Year and I am incredibly honoured that they are talking to me because if you look, they tend to deal with people at the cutting edge - you know the types - half a dozen doctorates and on the shortlist for a Nobel prize. And I've gone quiet on them because its all gone bonkers since Friday. How do you send a little thank you email asking people like that to bear with you while you sort out cats, rats (uhuh), guinea pigs and kids in meltdown? I mean it all sounds a little domestic and disappointing, almost like I would be confirming myself as the unreliable flash in the pan that in this silence they can only suspect me to be. I'm not; and this is eating at me. When I requested a hero, I was not being over effusive in my choice of words.

Still, husband left on Monday, for the second part of his current training course and won't be back until Friday night. This is a mixed blessing, purely because he tried to educate me on the difference (or lack of difference) between dpi and pixels, but my brain won't have it. Anyone trying to educate me on anything other than UK Special Needs Law, especially if they become aeriated in the attempt, is meeting a very blank stare, a brow that threatens instant migraine (shared if possible; I mean, give me a gift, I'll always offer to share, it's manners) and the occasional nervous twitch. I'm not in a corner, vacantly rocking,..... yet.

Big daughter did her best to help that along today. Further to her arrival at 5am on Saturday morning, she claims that someone called her to say her handbag had been found across the road from the club, with only half the money taken. Something rings off key there. I failed to notice the warning signs because she has two very similar states - one is when she is totally in control of her life and really ought to be managing something somewhere and getting paid by the bucketload for it - the other is when she is edgy, tetchy, needing a break and therefore faking it.

I made her snap. She decided to explain how Bozo Boyfriend had £100 of hers that he owed her and that this meant she wasn't as broke as all that. This is a guy who lives with his mum (okay he pays rent, but it doesn't equate to a mortgage) and who has a full time job and has just bought himself a huge TV for his bedroom. I happened to mention (as she has moaned abouthimn often enough recently) that I think its wrong of a man with any self respect to even ask to borrow from a woman on benefits.

I stand by that - whether it was him or another, her or another, whether he'd run up the debt wining and dining her or on something else - these are his books to balance, his decisions, his problem. Plus in this particular instance the guy is living at home with a whole house full of wage earners.

As I write, according to my darling Big Daughter, I always do this - I always hear half the story and make the rest up and how dare I impugn her boyfriend in any way shape or form and I am always assuming that just because she's called him the dumbest most useless lump on the face of God's earth that I can go assuming things about him.

Alright dear.

I'm fine with that, its the high horse she gets on to say it. I'm really not in the mood to be talked down to, this week. I told her that if she didn't run me down behind my back then she had my permission to start, she could think anything she wanted of me, but not to lay into me like that, because I can't cope with her hyperactive slanging matches.

The answer?

A deep breath. Not a good sign, it means about ten sentences are going to come out before the next one.

"Well mum, how am I supposed to fucking behave when you keep being so fucking pathetic...... yah yah, rhubarb, rhubarb, etc etc. At least I assume there was an etc. To my eternal shame I put the phone down on her, but not before I'd slipped to her level with an 'Oh fuck you'. I am not proud. Resigned, tense and headachey and (ahem) jolly peeved, but not proud.

Quite apart from these 'little inconveniences', since Monday morning I have:

• Taken a long phone call from my (rather wonderful) contact at the National Autistic Society.
• Had my legalese email writing skills praised.
• Been advised to copy what I sent to the SEN caseworker to the LEA's Director of Education, as (in NAS' lady's opinion) there were such clear and multiple breaches of SEN law and code of practice detailed in my post-meeting email that I ought to give the Dir of Ed the opportunity to have a heart attack correct the situation before we move on to totally showing the whole County up at Tribunal.
• Raced around for the rest of Monday morning trying to find leads, crawl under computers and get one of the printers to work so that I could comply, instead of seeing to my soon-to-be-absent husband.
• 12.30pm caught the same first train as him to deliver my letter to the County by hand, as the alternative was to spend just as much as the fares would cost on recorded delivery, which would have got the papers to County Hall today, which is a day of strike action for unknown numbers of Council employees across the country.
• Raced from County Hall up to my daughter's flat to say hello as she lives in the same town and was then supposedly trapped indoors through the loss of her second set of doorkeys, only to find that a acquaintance of hers had come round for the afternoon, so she had left him there guarding the house while she went back to work!
• Raced back up two hills and just missed my train home and had to wait half an hour on the platform for the 2pm.
• Rushed home, changed bags, knocked back a cup of tea and legged it all the way to school for 3.10pm because the letters announcing the first ever Year 5 'dressing up as a Tudor' day came out a week ago, but school had told all the parents not to worry, there were a lot of costumes available to borrow, except children can't choose on their own, the parents have to physically come in to school.
• Waited politely whilst an increasingly red faced teacher searched two classrooms and discovered that all that was left was one outsized white mob cap and a curtain-cloak for a boy.
• Smiled politely while he tried to convince my daughter that dressing up as a Tudor male would be fun; then suddenly remembered an important meeting and rushed off leaving the 'choice' to us.
• Walked two kids all the way to town to the second hand shops. Three things we have in abundance here are pubs, solicitors and second hand shops, all in a single block known as 'town', all about three miles from school and two miles from home.
  
• Walked two kids back home clutching one floral curtain, a roll of elastic and two pillowcases; total cost £6.25.
• Began chopping fabric, planning and sewing hacking bits together until the kids pointed out it was nearly an hour past their bedtime and asked if there was any chance of dinner.

I'll admit that I do have a sewing machine - very handy when you need to do long straight lines of stitching or put a zip in. The thing is it's my grandmother's Singer treadle, at least 100 years old, on its last legs (a lot of the tiny metal nails in the wooden casing need replacing so it wobbles) and the leather belt has snapped, so the treadle works a treat, it just doesn't communicate with the sewing machine itself. I still used it, turning the upper wheel by hand, one stitch per rotation, so ended up with a finger stuffed through the (the what, spokes?) the wheel itself to pick up a little speed.

Right now however, still ion the same thread and halfway through a bobbin, it has decided that the previously perfect tension is all wrong and is producing darling little lines of knots and loops. I haven't got the time nor the brain capacity to sit and experiment with tensions on the bobbin and the reel feed, so the sleeved will have to go on by hand. Bugger.

Still (wish me luck) it all has to be fit to wear to school by Thursday so I have 24 hours left. This is a good thing because on Friday I am off to be part of a committee of SEN parents, to look at plans this LEA has to do away with Individual Education Plans in preference for something that means less paperwork. Allegedly.

Photos tomorrow if I get ahead of myself (haha) and/or come up for breath.

So, after that long but very therapeutic little assessment of where I am, I remember this was all about this week being arse about face, upside down and back to front and some sort of cosmic, karmic game of cat and mouse; theoretically for many of us. So the polite question which I acknowledge I should have asked in the first place, is;

'How's it going with you?'

Blogging Bleary

It's 6am. Not an unusual time for me to be awake, except in unusual circumstances, which these are. For one thing, it's Saturday. For another, for various reasons this puts my total night's rest at three and a half hours.

I am in that netherworld of shuddery-armed, glue-eared and shiver-spined shock, blinking and bleary eyed - insides complaining that they are still asleep and intend to remain that way, whilst the rest of me cries out for some noise to break the silence; company; coffee. The sort of stage where silence feels unnaturally complete and you long for the sound of even a car in the street to break through the cotton wool that is your brain. The kind of state where you automatically tiptoe, whether there's anyone around to hear you, or not.

Congratulations, you have won a prize - one hangover - no alcohol necessary.

Yeah, that one.

I imagine that in about twenty minutes the lining of my mouth will begin to taste and feel like the bottom of a birdcage, or at least the way a mouth could expect to feel after a night dining on cardboard. Thats metaphorical, but just now I am too insensible to feel much of my mouth, nor to know whether I am making much sense, here.

Yesterday, although I thought I'd forgotten how, I switched back into Superwoman mode. Thank God my son has a SEN caseworker with a wit, who can talk at 100 miles an hour same as me if the opponent permits. Too many nurse and social worker types lean toward that sort of work, and with the background comes a long, heavily embedded training in speaking slowly and softly, in waiting for the other person to stop and go silent before drawing breath to respond. Many call it listening skills - it's not, it's 'showing slow minded people that I am listening' skills. Subtle difference.

She and I however, we were in the zone, and found ourselves using tiny flicks of sign language to keep the speed - palm up for I'll have an answer to that, fingers forward for 'I'm just going to slice in, here'. We were like drivers in the fast lane, constantly cutting each other up but without a single prang - it was wonderful. We covered so much ground in a single hour. I love it when people can dance with their words. Even if you are there to disagree with each other, its an honour and a compliment to take on the silent agreement, to know you are really being heard and matched for speed.

By the end of it I even said that my brain was fried. It wasn't exactly, more that I had absorbed all of the information yet it was still this swirling maelstrom, whizzing round on shifting currents. I knew that as the heavier learning settled and began to form a working pattern, a map of itself; some, like dust, would be lost to the winds. Still, sometimes dust is gold-dust; not the sort you want to lose in order to hang on to the boulders.

For the rest of the day then, my subconscious was working at full pelt, trying to sift and grade the contents of an information tornado. By three I had written and sent my summary email - my 'thank you for our meeting, which covered these main points' letter, the one that, without a reply, means it stands as a gospel, as minutes.

After that I just closed down.

Slam. Like a prison on lock-up.

Walking to get the kids from school made my legs ache - gave me splints, and as soon as we were back indoors, I started to feel increasingly cold. Whilst my body took on all the effects, my mind decided it was still working in overdrive, had processed all that information and wanted more, and more. Paying attention to the kids jabbering, running wordplay games with them, it was so easy. Once they'd gone to bed however, with Husband in a Friday night slump, the silence started to grate. My brain began to feel like a water boiler running on dry, grinding away searching for input, desperate to be fed with news excitement, an argument, anything. It was doing it's little lawyer-on-speed routine and Husband started to look like a rabbit in my headlights.

So guess what we did, then. Yup, we argued, or more precisely he spoke once and I sliced like a maniac. It was like pitting a samurai against a toddler; no fun at all. My body rallied, however; came back on full alert, so I sat for two hours like a runner at the off, blood pressure constantly increasing in line with my indignation. What made it worse was that Husband took the silence to mean that all was back to normal - didn't have the wit to see that there was steam coming from my ears in increasing amounts for every second of his blindness.

Sideways slants, like me furiously playing a computer game that I know annoys him (he can't think round the sound effects), then stating 'This is your wife in "what the hell am I doing here' mode" didn't get me the attention I hoped for, but rather a blank stare and a response of "Er, don;t know, what are you doing there?" before he instantly went back to doing his own thing. We got our 'here's mixed up, he missed the intonation that CLEARLY labelled my 'here' as referring to in this house/in this marriage/on this planet. How dare he, huh.

A single friend came online to chat, and that was enough. After a brief flurry of force feeding her too much information, I let her get a word in edgeways, and she made me feel noticed, even worried for. Maybe all I'd needed all night was someone to say 'poor you' and mean it, but that was it, I began yawning and just couldn't stop.

There is one thing that never happens in this household; I never go to bed before Husband. Sometimes with; usually after, but never before. Still it was Friday night and he normally stays up until about 1am, so at ten I felt safe to slope off to bed and have a chance to actually be fast asleep before the object of my pointless fury joined me.

I slept. I dreamed. For all of half an hour, and then there he was, bumbling and stumbling into the room. The very second his head hit the pillow, my blood pressure flew up the scale and stayed there. Try lying still when what you really need is ten laps round the block. It hurt, and it made damn sure I was wide, wide awake again.

He fell asleep quickly and easily - too quickly and easily; unaware and unaffected, which at the time, I took to be THE ultimate bloody insult. I took my pillows and the spare duvet to the living room, sat on the sofa and watched three inane romcoms on the movie channel, bam, bam, bam, in a row, before finally getting to sleep somewhere between 2 and 3am, with the light still on.

So, you poor, dear, faithful reader, you who have striven through the cloying muds of this post - why did I begin typing this blog at 6am?

Because at just gone 5, my single-parent daughter and her (not particularly welcome) boyfriend turned up on our doorstep. They'd come to town for the one nightclub it possesses, where her handbag had been stolen, including £90, every penny to her name. By the time they'd searched the venue, made the allegation, walked to the police station, sat through one of those deliberately slow sessions performed especially for the young and the brash who wander in smelling of the good party they've just had and sound a little too emphatic and look like they need calming down, well by then there was no option but to walk up here and beg to crash. No trains, insufficient remaining funds for a night taxi home.

Daughter, on weepy auto-pilot, went to her sister's room, dragged the single visitor mattress from there to the living room floor, and there they both are now, asleep inside thirty seconds, on my pillows, under my spare duvet. He's rolled to the middle, she's rolled off the edge. About 6 foot away from me, just around a corner. And now he's snoring.

But hey, I guess I did say I wanted noise.

Off to make toast now. Loudly.

Email #34

Dear Mrs New-caseworker

Thank you for our meeting today. I feel it is important to commit the results to print, so to recap events as I understand them:

I asked for some minor rewording/clarifications of meaning in section 2 of Son's proposed statement, all of which were agreed, including acknowledgement that he needs constant adult supervision to remain on task and that he needs subtle unobtrusive monitoring in all unstructured activities - in other words that he needs adult supervison to remain both academically and socially appropriate. We also modified wording slightly I believe, to underline that his inappropriate behaviours are a stress reaction to sensory overload.

I asked for minor rewording of provision 8 in part 3 section B to ensure that delivery of the full curriculum would be modified to allow him to access it all, rather than the curriculum itself being modified, so that this could not be interpreted to deny or curb his access to certain sectors. This you also agreed.

Thank you for your help.

As to the rest of section B, you explained that the provisions were "deliberately vague" (quote) to allow for the school, once placement had been awarded, to instruct the LEA how they proposed to fulfil those provisions, that you would then look at mirroring those plans in the statement in place of the current wording, as a way to tie the school to its intentions.

My questions about the phrase 'access to' (where, when, how often, how provided, who by) and questions about what each provided facility is (what is a workstation, how set out, with what equipment, what is a language programme, which person or authority would devise that to be of use to Son as an individual etc) plus concerns about provision being distinct and separate in a manner that reduces his access to the curriculum (such as would these be sessions taking him away from some lessons, or would these be more fluid and on tap for access during time outs etc) - all these were noted. However you informed me that none of these could be answered except by the school that will receive him - that they will instruct the LEA on this, which will then be underlined by addition to the statement after the fact.

My request for any mention of staffing arrangements received the same response, although you took down my request that those dealing with him closely be trained or training in dealing with ASD and Aspergers - once again to be negotiated with the school prior to addition to the statement, or not, according to the school's facilities. You also added that it is very rare to list hours and that Son has been given a 'Band A' statement, funding for which would not stretch to an INA for the entire school day or week.

You likewise informed me that no school can be named in part 4, irrespective of my wishes for P, until a school has already agreed to take him, and that oversubscription by one child could be seen as detrimental to the education of his peers. I could argue with you that if he had been granted a full time INA (something the junior school has been fighting for and calling necessary even in their gentler environment for the past two years) then he would not in any way be taking a teacher's attention from other pupils, which, as a child fit for mainstream, is the only way he could cause a detriment.

I am most dissappointed that the LEA is prepared to say that he needs constant adult supervision but is not prepared to band his statement/pay out to provide for a full time INA trained in dealing with Aspergers syndrome. It is impossible for a teacher with a class of thirty to give one of them constant attention. As I said, I am very anxious that he has had an INA at cost to the junior school, for the past three years, that he does not know how to function without one even in a rarefied junior school atmosphere let alone senior school and that there is concrete proof of this - he currently, through budgetary restraints has one day a week (actually one half day - Friday when the afternoon includes 'Golden time') without his INA and regular teacher and that is the day when he accrues detentions, and comes home stressed, depressed and feeling unfairly picked on. I doubt he learns a thing on those days, for waiting to get into trouble, so as a sensory overload, its a vicious circle. We can expect that to double or triple in the larger senior school environment.

I do not really see the point of going to the trouble of getting the school to tell the LEA what provision should go into the statement, even though 'access to' is unclear and open to wide interpretation, as are the provisions themselves as they stand - eg 'a social use of language programme, a workstation, opportunities to talk, motor skills programmes'.

I am similarly dissappointed that the LEA is unwilling to name a school before first getting that school to agree to accept my son, it seems all cart before the horse.

My feeling now:

Having come away from this meeting and had time to consider, please be advised that I trust you to make the few changes we agreed and I do not wish to see another proposed statement or to argue fine points from here to kingdom come, simply because this would make it a very longwinded process which would be detrimental to my son. He already feels like an outsider for being the one child in his class who doesn't know what school he is going to; the Senco is unable to formulate a transition strategy, I am unable to prepare him and this will have long term effects on his new start.

Please, whether or not you hear from the senior schools by this Friday, could you please finalise the statement with the agreed changes, with or without a named school of the LEA's choosing, as that seemingly has to be the way, so that he has a real statement by the time he goes back to school after the Easter break. Too many individuals and authorities, Son most of all, need this to be finalised in order to move on.

Many thanks

Cheryl

Bit Busy

Today I am off to an official meeting to petition for additions and alterations to a seven page legal document. This with no formal training.

To that end I have spent the week locating and absorbing the pertintent sections of a 200+ page code of practice, noting every instance where it refers to other more binding documents, ie where practice is law and not optional.

I have also had a couple or six lovely long chats with various specialists, one of whom, bless her, sent me a long help document which never showed up and who therefore spoke with me by phone, for free, for over an hour late last night. I owe her big time.

Once that is done I am back to finish a badge design for a subject which means an awful lot to me (no, I'm not that hot with graphics - this is taking time!) plus clean up this little pit we call home, shove things in cupboards and be ready to pick my children up at three, along with a playmate who is coming to tea for the very first time.

Sod changing the guinea pig bedding today - they'll just have to wait and I'll just have to get creative with the neutradol.

Wish me luck!

P.S. The document is a legally binding statement of provision for son's Aspergers that will stay with him, barring minor tweaks at annual intervals, for the next five, hopefully seven or ten years. The badge is to advertise that this year is International Aspergers Year (did you know that? I only just found out!) and to advertise it to us mere mortals and encourage more people to understand - especially if they happen to be doctors or teachers or youth group workers or the disdainful woman up the road. I WILL be ramming this badge in peoples faces and constantly begging you all to buy 1/10/100 for the next nine months until the year is up. Please. Sorry, it seems the soapbox is now firmly glued to my feet and I am on autopilot with this, so if it annoys you, then see you next January, I hope!

Aspergers Is:

Found a brilliant page listing real and fictional characters that display strong Aspergers traits.

So, If you've ever wondered what a person with Aspergers is actually like, think:

Basil Fawlty, Bert (Bert & Ernie), Bill Gates, Sherlock Holmes, Henry Higgins (My Fair Lady), Einstein, Catweazle, Beethoven, Pippi Longstocking, Edward Scissorhands, Gerald McBoing-Boing, Phileas Fogg, Alex Keaton (Family Ties), Doctors Craig and Ehrlich (St Elsewhere), Thomas Newton (The Man Who Fell To Earth), Carl Jung and Dilbert.

Yup, I think that about says it.

So now, all you 'never heard of it' types,
now you know the sort,
how many have you actually come across already and just never knew it?


Tags: Aspergers , Bill Gates , Dilbert , Einstein

P.S. See an even more comprehensive list (sadly with some broken links) HERE.

Email #33

Dear NAS-lady

Good morning!

I hope this one reaches you! Sorry its taken me a while - gmail is by invitation only. Now that I am signed up, you are welcome to an invitation from me, if a spare email address would help (for example if you have other contacts stuck with hotmail addresses that can't reach you on your aol)

I have spoken to the caseworker and am set for a meeting, with her and parentlink at 10.15am this Friday. Still no sign of the code of practice by post, so I may go searching online if its not here tomorrow.

For your info, here is a cut and paste of my original email, sent a week ago on Monday 13th.

Cheryl

Email #32

Cheryl - I haven't heard from the Governors yet but will ring them to chase responses and willl et you know as soon as I have anything; if we plan to meet on Friday of next week to discuss the proposed statement I should hopefully have responses (even if only verbal). I will try to book a room here at County Hall if you could let me know whether am or pm is better for you?

Best regards
Mrs New-caseworker

Email #31

Dear Mrs New-caseworker

Hello! How was your break? I hope you had a lovely time.

Sorry to email you (again), but our last phone conversation was exactly two weeks ago today, at which point you were going to write to School Governors to seek a place for Son, before going on a break. I know you were still on leave this Monday, and out at meetings on Tuesday because I have been trying to reach you, to see whether there has been a reply.

I am very anxious to get things finalised and sorry to hassle you when you must be really rushed and trying to catch up.

I do want, as discussed, to raise a few questions/requests about the wording of the proposed statement, then again for Son's sake I also would like answers ASAP (whatever those answers may be) so that the final statement can be issued and we can get on with getting on.

So, two questions:

1. Please have you heard back from the Governors, and what was their reply? (I would really appreciate a copy of their letter - is that possible?)

2. I want to discuss the wording of the statement. There are two ways we could do this - could I come up to County Hall and see you next week?

If I visit, it would hopefully be to have all the issues resolved with yes or no answers in one sitting and then ask you, whatever the official decision is; to issue the final statement. I would probably ask a member of Parentlink to come with me, not to be funny but because I would be taking note of verbal responses and would want another pair of ears there, preferably a pair that know the ropes.

I guess we could do this by email, with me asking questions/asking for changes, even in the manner preferred on the form that came with the proposed statement, but before opting for that instead of a meeting, if we did it that way, how soon would I receive answers? Could we turn it round inside a week? If not, I think maybe a meeting is best. Do you please have room for that, Wednesday, Thursday or Friday next week?

I know you are incredibly busy after your week off, but hope to hear from you this week if possible (today or tomorrow)

Best regards

Cheryl

Mucked It Up

I mucked up Marmoset's meme! I missed making my muddled replies to the first two questions (yup I gave up on the Ms there; brain ache), so ;

Sorry Marmoset, here they are!

What were you doing ten years ago?

We were moving from West London (Southall) to Sussex, on a severe budget. Lets just say the furniture got transport laid on. So, almost to the day, this time ten years ago, I was heavily pregnant with youngest daughter, had youngest son in a pushchair. Older daughter and son had just begun their teenage years (you can just imagine), and they, I, husband, my cousin (who is more like a sister and God alone knows how I would have coped without her), pushchair, belly, two cats in two cat boxes, six overnight bags, nappies (diapers) and such, and a litter tray, cat litter, tinned cat food, tin opener and cat bowls all in carrier bags because we'd used up all the good ones, were making our way down here by public transport.
The worst bit was the London Underground, which we managed to hit at almost rush hour. Getting on was ok - it was getting back off again that was the lark and I ended up standing over the bags and puschair by the doors, even after being offered a seat, for fear that I wouldnt be able to battle my way off again. Standing on a rush hour train is a real balancing feat when you are up the duff.
We got here about eight oclock at night because of the late time that we had to set off. Everything was closed, the village style buses had stopped running and taxis were nowhere to be seen. Installed cats (and tray and litter and food etc) in the kitchen of our new home (which terrified them) having walked to reach it up a few hills that didnt show on the map, walked back downhill to town and settled in to the B&B to wait for the furniture the following day. We went to bed hungry.

What were you doing one year ago?

Pretty much the same as now, two kids grown and left, two at home, me at home arguing the toss with East Sussex County Council over Son's Aspergers. At least that time we were trying to negotiate an upgrade from Note in Lieu to Statement - this time we have the Statement, just not the wording or the school. According to an NAS questionnaire, I seem to remember, it takes on average about five or six years in this country to win a statement for a child with Aspergers, or on the autistic spectrum, so we're on track by current standards.

See? I enjoyed that. Sorry if you didn't but half a meme just isn't good enough, is it. Sorry Marmoset. At least those that have played so far actually visited Marmoset and got it right first time.

Tags: Aspergers, Autistic

Kenneth Williams

Just watched a brilliant programme on BBC4, Kenneth Williams: Fantabulosa.

Aspie, aspie, aspie, aspie, aspie.

Crying.

Dear God save my brother and my little boy from a life of that much tortured loneliness.


Tags: Aspergers, Kenneth Williams

Email #30

Hello NAS-lady!

Hoping this reaches you!

It would be great if you could hit reply and send it back to me, so I know, with or without the info you were otherwise going to photocopy and post.

Thank you for all your help so far.

I have ordered the C.O.P. and have been told it will be with me in five to seven days.

I telephoned my caseworker and found she is not back in the office until tomorrow. That's OK; my last email to her was sent in response to our telephone conversation the same day, about contacting school governors, so I have the date fixed at March 2nd and we are within the fifteen days for the rest of this week.

Thanks again - off to find the draft statement now, hope to have it in the post by tomorrow night.

Cheryl

For My Brother

(And for 1 guy I just clashed horns with on a forum)

Do you need to be in control?
Do you find most people frustrating?
Do you feel they change the rules half way through?
Do you feel they are illogical, irrational?
Do you find many people offensive, or bullying?
Do they often unfairly accuse you of being the abrasive one?
Do you find most people unable to follow your train of thought?
Are you often frustrated by other people's inability to keep up, when a line of thought seems obvious to you?
Do you wish people could just for a minute understand you and stop making life so damned difficult?
Do you find people unfairly accusing you of being odd, until you are now hyper sensitive to any such suggestion?
Is life with the weirdos pretty bloody depressing, so that you prefer your own company when at all possible?


If you said yes to many of those, then relax.
You probably are special.
You probably do see way more clearly than others on matters of logic.
And you are probably streets ahead of anyone you could name, as far as your latest pet subject goes.

Its a gift. OK its probably a gift called Aspergers syndrome, but don't you already subscribe to the concept that being called 'normal' is an insult?

The medical term for being 'normal' (in the depressing majority) is 'neuro typical'.
Admit it - you already knew you were neuro-special.

The great news is, that there are more people like you than you thought. Some have even made a study of the upside down way that the neuro-typicals view life and have mapped the habits and thinking of these changeable creatures.

Think of it as a leadership course, a method of understanding NT language and habits.

Wouldn't life be a whole lot easier, even less painful, if you could just get through to these NT people when you need to? If you knew how they ticked? After all - that's 90% of the inconvenience and frustration - not understanding what on earth is going on in their heads. Tiring.

Start HERE.



Tags: Aspergers, Autism, Frustration, Depression

Email #29

Hi Mrs. Baggage,

Thanks for your email. Its no problem to contact me.

In East Sussex we have not listed hours on statements for at least the last 3 years, ever since the new Code of Practice came into force. Under the new code of practice it looks at meeting children's needs under four strands including human resources, assessment and planning, The lady whose blog you read may have an older style statement and the county she lives in may not be up to that stage yet, although they should be.

As I explained in East Sussex children are banded for statements and Son will be at Band A. Please don't worry about it. You did the right thing and Son will received the support he needs.

Have you heard what secondary school he is going to?

I hope this helps and lays your mind a bit at rest. I will be in this afternoon if you have any other questions.

Hope all is well.

Kind Regards,

Educational Psychologist

One Step Forward And Two Steps Back

Which is precisely how I feel.

There is no room left at the mainstream school I requested for Aspergers Son.

There is no provision in his Statement for an Individual Needs Assistant (INA), only for access to tools and not how this access is to be provided, nor how often.

If he doesn't get this school, the next best (which he has been offered) is miles away. There they will appreciate his need for a sense of security in the most unstructured environments (break time, corridors etc) however the offer comes with a stipulation that no transport will be provided. In other words the school will look after him, but the County will force him to make his own way by train and force us to pay for it.

If we refuse that, then we are back to the local Senior school which is on two completely separate sites, both of which have lots of add-ons and outbuildings and I will have to fight for INA provision to see him safely from A to B and fit to learn when he gets there. Also its the place where everybody from his current school will be going - including the kids he is particularly looking forward to never having to look at ever again.

The lady at County is writing to Governors now, to push his case further, and I am immensely grateful, but if I needed proof that someone has stolen my boxing gloves, then this is it.

I don't want to say it out loud, but I am more used to this kind of news setting my mind and heart racing, spurring me on to call in the troops and fight, fight, fight. This sensation that what I really need is a long sit down; this inability to get revved up or panicked; this is all very odd and new. Its like a piece of me should be screaming in my head right now,

when all there is

is

.... silence.


(Except for that rather annoying song linked at the top, here.)

Tags: Aspergers, Special Needs, ESCC, Schools Placement

Email #28

Dear Ed-Psych (EP)

As you didn't mind me telephoning you a few weeks back, I hope you don't mind email either!

Thank you for your help and reassurance regarding Son's proposed statement, which, word for word, listed all the things that your Ed Psych report said were needed.

I hope you remember I phoned you in quite a state, as it was about the last day of half term and I had just received the proposed statement giving me fifteen days to respond, nine of which were the half term and weekends.

Sorry to ask this, but could you clarify something for me please? You did say, didn't you, that special needs statements no longer list 'how' access to things is to be provided?

I am sure you said that ESCC never put hours or stipulate which staff are to be used, any more, and that the methods of provision are a matter to be discussed in the transition process between juniors and seniors. In fact I accepted the draft statement on the strength of that advice.

Its just that I've been reading blogs (! great use of my time...) and came across a mother complaining because the hours of provision on her son's statement were being reduced.

Now I am in a pickle and worrying that the panic I was in at the time may have meant I misunderstood you completely.

I know this lady is in a different County and her son's needs were obviously statemented a while ago, but I would really appreciate it if you could reply to confirm that I did properly understand what you said.

Best regards,

In hope

Cheryl

Email #27

Dear Mrs New-caseworker

Thank you for our telephone conversation today regarding schools admissions. Thank you also for the advice that Senior schools are not geared up for providing individual needs assistants - that support is usually subject based. This was a surprise to me as 'junior school' have spent two years pushing for (and frequently providing, from the SEN budget) a full time INA, plus provision of such from other funding is taken as read, in the Sussex Uni ASD provision.

This raises new concerns, for me. There are only three teachers (1 teacher and two TA3s) in Son's class. He still forgets Mrs A's name and gets most of his detentions from her, because her voice is quite clipped and matter of fact so he reacts to her as if she spoke to him in a venomous fashion, being unable to decode the look on her face or take things in context.

To confirm what was said by phone about peers, Son is working himself up into a state of anticipation regarding attendance at a school other than Seaford Head. He is increasingly looking forward to the time when he will not have to go to school with Dale and Connor (sorry no surnames), who separately mock and chase him, also H who is his friend but has a habit of threatening to kill himself, which Son always takes seriously. Usually Son ends up hiding under a table or walking around muttering to himself in an alienating fashion, in an effort to get over the upset.

As an afterthought it strikes me that the existence of Son's little sister may be / may have been a factor in offering a place at P. This is just to let you know that, as things stand, both children are looking forward to attending separate Senior schools. Daughter is affected by her brother's special needs and she needs room to come out from under his shadow.

In fact, if she were to attend Seaford Head, with Son going further afield, I would have my first real opportunity to give her some individual attention as she would leave for school later and arrive home earlier, or if transport was required/given, then holidays would at least not always match up. This is actually of crucial significance to her development, although she is not the focus of this matter.

For the record, I am prepared to relinquish the sibling's right to a place at the same school, where P is concerned, if this helps.

Thanks again

Cheryl

Important Survey - Pass it on!

Just got this by email. At first it went into my junk mail, but as luck would have it, hotmail can't seem to verify my own email address when I post comments to this blog, so every day or so I go and move all my OWN comments out of my junk mail folder. Thats how I found the following email from Laura at UTM.

I don't normally open unsolicited mail, but hey. Vibes and all that.

Anyway heres the message - turns out its about a US University based survey (here) wanting feedback from parents of children under ten, whether or not these children are on the autistic spectrum. They need feedback, and they need it from everybody.

It looks like they are trying to gauge how widespread certain so called 'differences' are, irrespective of diagnosis or apparent 'normality' (for lack of a better word), in fact the few well chosen questions aim (Hallelujah!) to reinforce or discount trends and theories which may pop up for all sorts of reasons, from ethnic origin right down to whether you washed the fruit you ate when pregnant!. In short, at the risk of going on, it looks really potentially very valuable and informative.

IF YOU HAVE A CHILD UNDER TEN - PLEASE COMPLETE THIS SURVEY!

If, like me, you have a child on the ASD spectrum, then the site also has other useful info. Sadly as my boy is eleven, I can't participate but I wish I could. Please do duplicate this and pass it round!

Here we go:

If appropriate I would like to post the following information on your blog:

ABA4Autism.com and the Psychology Department at the University of Tennessee at Martin are conducting a second survey on the causes of Autism Spectrum Disorders (ASD). This survey is for mothers of children with ASD as well as mothers of normally developing children who are ten years of age or younger.

Mothers who participate in the survey will receive a free ABA program to teach their child to follow directions as well as free ABA mini programs for common problems like sharing.

To take the survey please go to http://www.aba4autism.com.

Thanks

Dr.Gary Brown
Professor and Chair
Psychologist/HSP

For myself, I can't afford the time away from my own Aspie to travel to the UK NAS (National Autistic Society) training courses, so the free online training they do at this site is something I will definitely be looking in to.

And yes, an overuse of links to the two relevant pages, but hey, I'm behind this, and happy to do my tiny bit to try and increase the google page rank at the same time.

Tags: Aspergers, Autism, Survey, UTM