Aspie Chronicles

The World According To, #1

2006-05-18T06:56:00.000Z

Son has been for his first induction morning at the new senior school. This is an act of faith on the part of both schools (Junior and Senior), as in spite of the 8 weeks for statementing having run out on 23rd last month, in spite of the phonecalls confirming the school choice etc the following Monday, the promise of a final statement within the week - no sign of the Statement.
At all.

Consequently no negotiations about transport, no official letter from his bew school, dates, hours, uniform list, all the stuff we need - nothing.

That wasn't why I began this post.

The latest quote from the world according to Son, marvelling at his progression:

"Hey Mum, I've been thinking; I mean, I'm nearly at senior school and after that it'll be University (Editors note: Yay! The kid assumes he'll go to Uni!), so really, you and dad are just holding me down.
"Like a hundred helium filled balloons.
"So stop trying because I'm going to escape and get up to the sky in the end."

And with that he smiled and wandered off again, so I really have no idea whether he has genuine visions of greatness and fulfilment, or whether this was his infamous sarcasm.

Being the mum of an Aspie teaches you to be a bit simple really - 'ok dear, if you say so' is about the safest reaction.

So Proud!

2006-05-10T11:14:00.000Z

For all the time he's been at school, Son's SATs have been dissappointing. Gradually he has achieved decent (as in marginally above average) results for the sciences and IT, but the approach at school has been that he is an average child with a few dyslexic and attention difficulties.

Last year his wonderful teaching assistant of the time (Zoe Noble) begged approval to allow him to do some work by dictation, just as an experiment. His English work exploded from the usual four illegible sentences written over an hour, to six pages of intricate story, and the school started to wonder what they'd really got there.

The other week the whole class did a week of mock SATs ready for the real ones that they are sitting now - the year six exams that label them and decide the stream they enter at seniors school.

The deal was that Son could not be helped in English papers, where the grasp of spelling and grammar were being tested, that he could have an extra 25 minutes more than the rest of the class for papers like maths because of his need to take a question in slowly and his difficulties with pen control, but where 'knowledge' was being tested, as in science, geography etc, he would be given an amenuensis, ie be allowed to dictate his answers to a teaching assistant who would write them down for him.

First he did a science paper this way, and scored 98%! Top of the class, he failed on only one question. Asked why saucepans were metal, he reasoned this would be to make them heavy, therefore safer as containers for hot food, instead of answering that metal was a good conductor of heat.

I am so proud of that failure - simply because he is answering from the perspective of reason. He is giving answers because they make sense to him, not by remembering facts as a list. He is not and never will be a learner by rote, but if something makes sense, it gets filed away as 'obvious'. I am happy.

Later in the week there was a very long maths test paper. He came home grinning from ear to ear the following day. Apparently the children were all sat in pairs to do the test; all except Son who was odd man out and had a desk to himself. By his way of telling it, the teacher had said it was the noisiest, most unruly day of the week, and that Son alone had remained in his chair, remained silent and continued to work on his test paper in spite of all the distractions. For the first time ever, without even noticing, he became the 'shining example'.

His reward was to be Star Of The Day the following day, with his name on the board and special privileges like getting to sit on a chair with a cushion whenever the rest of the class had to sit on the floor. By my maths there are around 195 chances in every school year for a child to be Star Of The Day. With an average thirty pupils per class, most, like his little sister, have been given the award three or four times in a year, but this was the first time, ever, throughout his schooling, that Son got the award.

All the bluff about not caring fell away and he was beaming.

I wondered about his version of events and was meaning to approach the teacher for her perspective, but before I could he also won the Merit Award. There is only one given out per class per month, and he got it. For excellent behaviour doing tests, by definition noteworthy beyond any effort made by any other child in that class for weeks.

Genius science results,
Absorbed and excellent behavior in the maths test (probably down to the enthusiasm for tests that the science result gave him - suddenly, for the first time, there was a very satisfying point to them),
Star of The Day,
The Merit Award,

.....all these are wonderful reasons to be a proud mother, but they are eclipsed by the conclusions he has drawn from this experience.

Son has decided that:

Biting his lip and staying still is the way to go - the rewards of being 'good' outweigh the inconveniences. There have been times when he's had a 'what's the point' attitude and a feeling that he can never win, especially with the total lack of Star and Merit awards, which come with public acknowledgement.
That he loves being absorbed in his work and has now experienced finding it very easy (although the school still parks a TA beside him to keep him on track).
That he can get even deeper into thinking about his work if the rest of the class is more silent and well behaved than usual - he prefers the hushed atmosphere of a test.
That this means he will shine in Senior school where the teachers are more strict and the other kids will be quieter in class and involved in their work.

Okay maybe that last one may be based on a shaky, possibly utopian premise, but it doesn't matter. Deep decisions like this take time to come to him, but once they are set they take just as long, perhaps longer, to be removed or altered. He has made his mind up that the purpose of Senior school lessons is to ignore the others and soak up the learning. He has made his mind up that this is exactly what he wants to do and he is looking forward.

Hallelujah - theres no other word.

Tags: Aspergers, SATs

Revenge

2006-05-06T09:38:00.000Z

by prydwen @ 06/05/2006 - 10:33:22 (i.e. stolen from Husband's blog)

My son who has ASD has had a horrid time at school from certain teachers who do not or will not understand his problem. One aspect of his behaviour is amazing sarcasm.

This summer he moves up to senior school and has been plotting revenge on one particular teacher when he goes.
We were concerned as to how this revenge would manifest itself but needn't have worried. He told us this week what he is going to do is, on the last day of school, walk up to Mrs J and say.
"There is something I have always wanted to say to you Mrs J... Goodbye"......

Tags: Aspergers, Sarcasm, revenge

Ah.

2006-05-02T09:00:00.000Z

I couldn't think of another title for this. "Ah" is about right. I mean, if I was asked to make a comment for the record on learning the following information, all I could come up with would be "Ah" and possibly "OK then".

Referring back to the PA to the Director of Children's Services who helped me establish that my letter got lost in the hallowed halls of County, here, it seems that it, or the email duplicate, hit the spot in the end.

Further to this sudden turnaround and provision of my requested mainstream school, I have today received a letter from said Director, dated 25 April, so only typed or composed the same day that my caseworker called to say that P school had been awarded and that the statement would be with me inside the week (it wasn't and still isn't, but hey, if all I'd had was the Dir's letter, I wouldnt even know that much.)

With lots of apologies, it's a very conciliatory letter, but the apologies are all backed up with reasons and the last comment screams of covering backs:

"I am confident that 'Son's' special educational needs can be well met in an East Sussex County Council maintained mainstream school and that....."

Thats where the 'Ah' comes in.

I've never met this guy, perhaps he's a lovely bloke and genuine, its just I can imagine that those who were counting pennies when I mentioned the Priory school may now be jumping through hoops and cracking open the best biscuits, knowing they have the backing of the highest authority in the County Education dept to insist that mainstream is good enough.

We'll just have to wait and see if the mainstream school agrees once he is installed, I guess, and anyway Son's educational needs at this point in time need have no real similarity to his educational needs another six months closer to spotty puberty. We face the time of obvious change.

Ok, then..........

Tenterhooks

2006-04-27T09:54:00.000Z

I got a phonecall on Tuesday. To all intents and purposes it was good news, even excellent news, even a happy ending to years of sweat and stress and nail biting and polite negotiations beyond any previous understanding of my ability to remain courteous under fire.

Yeah, right, been there before. After the initial reaction (which was to whoop and go teary eyed as if I'd won the lottery or someone had declared world peace and enlightenment for all), I remembered that news of a ship on the horizon is not, actually, a ship on the horizon; nor even does the appearance of such a vessel mean much unless it then also proceeds to head towards you. Even then there is the issue of whether it truly is on a rescue mission or just blythely and ignorantly set on a course which will run you over.

Cynical? Moi? On the contrary, I have simply learned from bitter experience that it doesn't do to spend too much energy rejoicing on trust, when you are treading water in the middle of the Atlantic (and/or ocean of your choice).

This two day silence, rather these two days filled with high energy procrastination such as playing blogthings quizzes and blitzing someone else's house - these have been my equivalent of the Victorian dead faint followed by smelling salts and fresh air and a day on the chaise longue in the conservatory sipping beef tea, to recuperate. Honestly, there's never an asphyxiatingly restrictive corset around when you could use the excuse.

Did you know corsets were the cause of the earliest Western plastic surgery? Women actually used to have their bottom two ribs removed to allow the waistline to be so severely cinched. Yes I know, I said Western, I acknowledge footbinding came earlier, and head binding earlier than that. Yes, yes I know, I'm doing it again.

So, the deal (given that I'll only believe it when I see it), is this:

The policy makers at County got into a huddle, presumably decided I had them bang to rights for telling me that the school I wanted for son was 'full' and using that as the reason for refusing him a place. They may prefer to deny my assumption or refuse to comment, but for their own reasons they decided to approach the 'full' school yet again and ask them to accept Son as one over the numbers.

The new Headteacher (Yes! Miracle! Between the last time of asking and this one, a new Head stepped up!) - ahem - the new Head looked at the advices and this time said "Well, OK, we could squeeze him in, but he needs a full time INA (Individual Needs Assistant)."

The policy makers, allegedly, agreed to this and increased his statement banding and the amount of funding that goes with it, to allow for a full-time, all-year member of staff to be employed. Just like that, by the sounds of it as a snap decision during the same telephone call. After I've been begging and pleading for crumbs for over two years. %&(^£"&!!

So the school said.......................... yes.

And the final statement should be coming out to me this week, naming the school I wanted all along and giving son the provision I asked for all along.* Wow.

*At which point, however, I start nitpicking to make sure that the INA is listed as a provision in the statement, his/her hours and qualifications specified also, that the other provisions are specific and not the woolly drafts we had before, etc etc etc. Oh, and then I have to raise the testy subject of transport, ie stick my hand out for yet more money. See this is the tension of fighting on behalf of a kid with differences. Even when you so desperately want to throw your hat in the hair and shout Hallelujah, you just know it's not over. It may never be over. Hey ho.

I understand I am supposed to rejoice on the basis that I got the County to comply with more of the law than they usually do - that seems wrong somehow and makes 'victory' (however partial) a little hollow.

Son Supposes

2006-04-21T11:38:00.000Z

This morning I sent Son to school in trainers because he 'misplaced' his school shoes, but completely forgot to send him with a letter of excuse for breaking uniform code. The unnerving thing is that as soon as I had given permission for the hunt to stop, he mentioned how handy it was that PE today was going to be athletics, so he would already have good running shoes on. Hmm.

Oh yes, and his chosen topic of conversation on the way to school, courtesy of having seen the news, was whether China etc were really going to join forces with America (because they had a war once, you know, says he) or whether they want to take over. Whether the takeover will be in business dominance or whether it will involve transplanting politics and communism, and whether, as the UK didn't go to war with them and we had a deal about Hong Kong, and we're sort of friemds with everybody, might we be able to stay neutral and friendly and not get communised/blown up/put out of jobs. At 8.15 on a Friday morning.

Email #45

2006-04-21T10:03:00.000Z

Dear Ms New-caseworker

Thank you!

My understanding was that, for most schools, some staff would be on site for part or all of the 'holiday', particularly admin staff and usually also 'main players' like the Head. The delay this would involve was not made clear when we spoke, or, grateful as I am, I would have reiterated my request for the statement to be issued during the Easter break, irrespective of these new developments. I rather thought I had done just that in any case.

Are we near to the eight weeks yet? I am having trouble finding the cover letter that went with the note in lieu, which does not, in itself, have any date on it. Could you remind me, please?

Yes you are correct, I was at one time panicking that we would settle things in time for a proper period of transition, now I worry that we may not have this settled before schools break at year end. Given that the application for assessment went in to County in July of last year, it has been a long time to be so fraught.

Given the situation could I please have either another 'interim' proposed statement (if that's what systems require) or simply (preferably) copies of the altered pages, following our meeting on March 24th. I would be grateful - even by email.

For your information, I sent copies of the initial proposed statement and the advices that were attached to the previous note in lieu to N-H School. I have received acknowledgment and am waiting to hear from them to see whether we will be invited up for interview. You know I have to repeat for the record that I requested P for its layout, as the only school I was aware of which provided the national curriculum and yet was designed in a way that would significantly reduce danger spots and triggers. It was a 'best of' situation. Now that I am aware of the Priory schools, ie aware that there are facilities which offer the full national curriculum in a setting specifically designed to allow accessibility to students with aspergers, without there being a mix of syndromes and conditions (which would have done nothing for his self esteem), I may yet request that N-H be the named school.

Son will not willingly consider any local school other than P, yet when I told him he had a better chance of going there than to N-H, he was very disdainful, saying that even if the teachers were nice and the building was quiet, he would still be the weirdo and the geek and the one who got kicked at breaktime just for being there; so you see, I am in a bit of a spot.

On that note however, someone outside of all this recently told me that Son could and should have been invited to attend the last review meeting; that he has a voice in this and that his opinions should be taken into consideration by the system directly, rather than second hand via me. I imagine it is too late to arrange this now without slowing things down considerably, besides, he currently has his heart set on a school which he hasnt even visited or been invited to view. I simply wonder, ought I to have been bringing him along to the meetings all this time?

Thank you again

Best Regards

Cheryl Baggage

Email #44

2006-04-21T08:42:00.000Z

Dear Mrs White

As you are aware, the School Admissions department have indicated that P is full for Son's year group this September; when we last spoke, at the very end of Term, I said I would discuss with senior managers here whether there was any scope for going back to P, and they agreed that we should pursue this - but we need to speak to the Head and the SENCO. We cannot do this when the schools are shut for a holiday. I understand that you are anxious to have a final statement for Son - what we are trying to do is meet your school preference before we finalise.

I hope this clarifies things for you.

Ms New-caseworker

Email #43

2006-04-19T11:02:00.000Z

Dear Ms New-caseworker

Thank you for your letter dated 18 April 06 to advise that the SEN team will be liaising further with P School and the County Hall Schools Admissions team over my request for a placement at P for my son.

I am confused.

Exactly fifteen days prior to the date on your letter, following our emails (below) you telephoned me to clarify that agreement to consider a special school was not agreement to approve one.

During that conversation I advised you that one of my resons for thinking I needed to go to tribunal was that the National Autistic Society had informed me that a school 'being full' was not an acceptable reason for denying placement. Rather they said that, according to the code of practice (8.85), going over the nominal admissions number might be incompatible with the efficient use of resources / education of the class, particularly due to availability of physical space for equipment, and that this would have to be investigated by the County.

At that point, in spite of the many email references to a place not being allocated because Peacehaven was 'full', you advised me that the County would indeed be making such investigations. There was no mention whatsoever that this may affect your response to my repeated request for the final statement to be issued prior to the beginning of this current term, ie prior to todays date.

Please could you advise me:

Why I have been sent a letter confirming what was already said by telephone so long ago
Why it has taken fifteen days to establish actions that I was led to believe were already in motion
Why the letter speaks of negotiations with Peacehaven in the future tense - ie why the County 'will be' doing these things and has not already started
Most importantly: Why this has delayed the issue of the final statement if, as you said in your email of April 03, NEGOTIATIONS CAN CONTINUE BEYOND THE DATE OF ISSUE OF THE STATEMENT.

Sincerely

Cheryl Baggage

Email #42

2006-04-04T08:59:00.000Z

Dear Mrs Baggage

- just to confirm your email has arrived but unfortunately the attachment was not there - could you resend? If the attachment was definitely attached on your original email there could be a problem with one of servers. Alternatively you could fax it on xxxxx xxxxxx.

Kind regards

PA to the Director of Children's Services

Typical.

2006-04-03T23:06:00.000Z

Today was supposed to be spent clearing house, sorting out, laundering and pottering.

Instead today was spent on five long emails back and forth between myself and Son's caseworker, with at least as many long phone conversations with the lady at the NAS in between.

The County are refusing to pay up for an individual needs assistant all day. They are also refusing to name the mainstream school I selected, or to make the provision for him any less than vague until they have chosen a school and got the school itself to say how it will make this or that provision. For example 'access to a workstation' could end up meaning he might see a desk on its own, with no headphones, no keyboard, and he might 'have access to it' for five minutes every term. It wouldn't be that daft but thats as vague as they are being right now.

The thing is, I wanted mainstream. I wanted mainstream because I didn't think the kind of special school that was worth looking at actually existed. Sure, mainstream would mean that my son was condemned to do twice as much learning as other kids during the day - learning to deal with distractions, with life as an Aspie amongst NT teenagers and all that entails.

Someone very recently pointed out two schools with the national curriculum (and more) that cater just to aspies. No being thrown in with a wide variety of abilities or issues like in an mld or ebd school, just a school full of kids on roughly the same level, and more importantly a school full of staff that really understand the condition.

Without even getting to visit one yet, Son has set his heart on them. I did point out that now that we have mentioned special school, the LEA seem to be much more interested in trying to get him into the one mainstream school, especially since I pointed out that its qualities (wide corridors, no bell, staggered breaks and other things) could all be counted as provisions against his needs (trouble with cramped or confined spaces or a lot of movement or sudden noise - he doesn't freak - he just gets a bit 'on stage', clumsier and a deal less thoughtful - he gets into a state where accidents happen around him and he finds it as tiring and stressful as anybody).

Anyway the county have seemingly backtracked from saying there is no chance of getting him into that mainstream school and are now saying they will 'keep fighting' and there is a slim chance. Tut. Suddenly the closed statements that the school is full have become open ones indicating they mean to quiz the school on why being full means they can't squeeze another one in.

I told him. He is not best pleased. His only comment was:

"Oh yes sure, lets have a think - on the one hand we have this brilliant small school full of Aspies who are just like me and will understand me and I will be normal for a change, and on the other hand we have a real school where I will still be the geek and the weirdo and get kicked at breaktime. So the County are going to put me in which one? The crap one of course. Oh bloody brilliant."

Sometimes there just isn't the right moment to tell an eleven year old about his language.

After all that, the network cable at home decided to die and take my network card with it, so I am sat at Husband's machine to write this.

Not a good day. Will try again tomorrow, but I may just start a new blog to pull out all my references to this fight for SEN provision and add all the emails to it. The way things are going just now, it would seem foolish to rely on my email account as the only storage place for all the stuff I'll need for tribunal.

Tags: Aspergers, SEN

Email #41

2006-04-03T12:57:00.000Z

Dear Mrs New-caseworker

Thank you for saying, below, that the LEA will consider special schools for my son, even after the issue of the requested final statement; I truly appreciate that.

Purely for information:

I have just managed to get hold of 'Special School' in Frome, by phone, even though the students are on their break. They do still have some places and I now have a brochure coming in the post. It does sound perfect, in as much as every observation my contact made about 'these students' seemed to perfectly mirror what I have heard said so many times about my own son.

They have asked for copies of the speech and language report, Ed Psych's report etc and also of the proposed statement, but are concerned that the provisions in part 2 should be clear and unambiguous in describing the type and quantity/frequency of provision. I understand they need this as part of the acceptance criteria, so from my perspective this does nothing to change my intent/need to appeal about the provision in part 2 of the statement.

Also for information, my contact is Mrs J on telephone number xxxxx xxxxxx.

Cheryl

Email #40

2006-04-03T12:54:00.000Z

Dear Mrs New-caseworker

I'm sorry - let me clarify. I am currently unable to reach the two Priory schools which I understand may be on Easter break and which I have only just discovered to be both Aspergers specific (not a full range of autistic spectrum disorders) and to provide full access to the national (i.e. mainstream) curriculum.

In either case, from their websites, both require a child to already have a statement in order to be considered for a place.

As to the proposed statement:

I consider the provisions in part 3 to be both very ambiguous and inadequate to the needs outlined in part 2.

I request P school to be named in part 4 as "there is nothing in law regarding admission numbers/schools being full" (quote NAS advice) being used as a reason for non admittance.

Please finalise the statement, giving me right to appeal to SENDIST.

Sorry again, thank you again.

Regards

Cheryl

Email #39

2006-04-03T12:48:00.000Z

Dear Mrs Baggage

Thank you for your e-mail and kind words; you have certainly been clear re: wording of the statement and your wish for a placement at P, and I hope that we have been clear about the lack of spaces at this school. However, just to clarify once more - in the absence of any other school preference or representation from yourself, and being unable to name your first preference school (P Community School) as it is full in Son's year group, the SEN team are endeavouring to meet your second preference school (R Community College) as indicated prior to the issue of the statement, as we are aware of your many concerns regarding a placement for Son at his allocated secondary school, S. If you wish us to pursue a placement at R, we will do so, and will liaise with our colleagues in admissions over this - but otherwise we would name S as this is Son's allocated secondary school. However, if you make a representation for an independent or non-maintained school prior to the issue of the final statement we will consider this. Once a final statement is issued you have two months from the date of issue in which to submit an appeal to the Tribunal - so there is scope for you to explore other special schools, for you to come back to us if you feel any other school to be appropriate, and for us to keep talking!

Best regards

Mrs New-caseworker

Email #38

2006-04-03T12:45:00.000Z

Dear Mrs New-caseworker

I want to thank you again for the honesty and helpfulness you have personally shown to me through all of this. It seems that I will almost certainly appeal the decision.

I do have to make one correction to your email - R was my second choice school at the point in time when application for statement had failed and a note in lieu was to be issued - way back at the beginning of what has been a huge learning curve for me. I was then much less informed and taking account of the advice of available experts - to be specific the three schools that we visited were recommended as possibilities by the ESCC Educational Psychologist.

When the admissions procedure was (due to be) clawed back from general admissions and given to your department, owing to the decision to statement after all, I was sent a new schools application form to fill in and I understood that it entirely superseded the earlier one. On that one I listed P only, and P is the only mainstream school that I asked to have named on the statement, so I am a little confused whether I have a second choice in R, or whether that ought to be 'had', past tense.

It is rather a turn of events that, owing to timings, the general admissions department could not be stopped from allocating my son a place as a non-statemented child, after the decision to statement had been made; that they allocated R, a school which, now in full possession of the facts owing to your letter to the Governors and the legally required attendant paperwork, feels as I do that Son's needs are not matched by the provision offered and that their school may not in any case be the best equipped to meet his needs.

I am very concerned and confused that S has, according to your email below, become the allocated school. It is the one school that I have constantly cited as being perfectly unsuitable to my son's condition at a design level - a main road between buildings, lots of build-ons, pressure points and small corridors, every possible design flaw that seems purpose built to trigger 'stimming' in a child on the autistic spectrum, including the use of a bell. I appreciate that you wrote to their governors of your own volition (presumably?) because we fall within that catchment area, but am incredibly concerned that R can envisage problems which Seaford can not.

It seems I am caught between the devil and the deep blue sea here, not least because of timings. It is such a shame that the junior school has now applied for assessment for my son on two occasions; both times the County appeared to have lost or not received an item of paperwork just at the end of a school year - both times reproduction of such took us about a week into the school summer holidays and I was then, each time, informed that this negated the ten week response time which was instead re-set at 12 weeks after the schools reopened, ie 18+ weeks in total from application to decision each time. This, with the change of decision this time round, has meant that the two applications have ended up stretching over almost two years. We have run out of negotiating time - I wish it wasn't so but feel I have done everything possible and stated my case clearly.

Again I really appreciate your help, I acknowledge your honest and genuine attempts to accomodate my requests within the remit given to you by your department and/or employers, but I feel I have made my requests clear - for unambiguous provision laid out to match and provide for my son's established needs, for unhindered access to the national curriculum and for a school environment condusive to peace and order for an aspergers mind, as a provision which not only allows him to access his education but also to access any other provision once eventually clearly established.

I look forward to receiving the final statement as previously requested, within this Easter break, please.

Best regards

Cheryl

Email #37

2006-04-03T12:42:00.000Z

From SEN Caseworker

Dear Mrs Bagage

I can confirm that your understanding of the response received from schools is correct; as you noted, we need written responses (particularly as R are saying that they feel the current statement band would not be sufficient to provide Son with the level of support they feel he needs) and can then finalise the statement. When you receive the final statement the accompanying letter will explain how to appeal to the Special Educational Needs and Disability Tribunal against any part(s) of the statement, including the school named in Part 4 - but of course we would far rather try to work with you and avoid an appeal if at all possible

When we sent you the proposed statement you should also have received booklets giving details of all East Sussex maintained schools, of non-maintained special schools and of independent schools. These booklet give brief details -including, where applicable, the type of special need that the school caters for.

If you wish to make a representation for any other school, we can consider this; to date, we have had your preference for P (1st choice)and R (2nd choice),and have consulted the Governors of these schools and of the allocated school, S. In the absence of any other school preference, we will endeavour to meet your second preference as your first preference school is full in Son's year group for this September.

Mrs New-caseworker

Coming Up For Breath

2006-03-31T20:05:00.000Z

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

2006-03-31T12:39:00.000Z

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

2006-03-31T12:24:00.000Z

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

2006-03-28T08:13:00.000Z

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 Â£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 Â£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

2006-03-25T06:04:00.000Z

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

2006-03-24T12:19:00.000Z

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

2006-03-24T08:02:00.000Z

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:

2006-03-22T08:14:00.000Z

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

2006-03-20T12:16:00.000Z

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

2006-03-16T12:15:00.000Z

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

2006-03-16T12:12:00.000Z

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

2006-03-14T08:01:00.000Z

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

2006-03-13T20:08:00.000Z

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

2006-03-13T12:10:00.000Z

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

2006-03-10T08:18:00.000Z

(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

2006-03-03T12:07:00.000Z

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

2006-03-02T20:59:00.000Z

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

2006-03-02T12:06:00.000Z

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

2006-03-02T12:02:00.000Z

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!

2006-03-02T08:09:00.000Z

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

Little Things Please Little Minds

2006-02-28T08:25:00.000Z

.. and mine is no exception.

Several things are going on in my life in a strangely orchestrated fashion, but it would be daft to go on about dreams, delayed-effect life changing experiences and spiritual direction in a post about a kitchen spatula.

Daft, however is my middle name. You have been warned.

Daft bit here:

A while back I had this really, truly horrible dream. The kind that wakes you in the middle of the night, keeps you in a between-worlds state until daylight and is sitting there like an ominous vulture on your shoulders, when you wake. Here it is, if you're bothered. At the time I brushed it off as physically, more than subconsciously influenced - the side effect of external matters rather than a penny dropping on the flat and calm surface of the near-stagnant pool otherwise known as my psyche. Or something.

In short, I was killed, with nothing left to do but get on with the process of being in shock, pre death. The fight stopped and my 'enemy' helped me to a comfy chair. No, no mentions of Spam, promise. Nor Soft Cushions, (and here, because I couldn't find a Spanish Inquisition video, is something, erm, different. But not completely.)

The thing is, as any psychologist could argue, it may not really matter what the dream actually meant, what matters is what, ultimately, my subconscious accepted it to mean. This is that:

With some overlap between them I have gone from teenage (always a screwed up state to be in) to a bad, oppressive first marriage, to 23 years of being the defensive parent of four kids, two of them with rather tiring special needs needing a lot of care and a lot of explaining. I've been on amber or red alert for the past thirty years, or there abouts, like I lived constantly at the corner of a boxing ring, ready for the bell to go. Human messes took up all my time, saving hearts from getting squidged by a bad dad or a bad school system or whatever, took everything, and (cough) I got to the point where I was fighting against myself, simply out of habit.
Stuck in a pugilistic rut.
Becoming routinely focused on the intense things in life.
Narrow minded.

In the dream I attacked me, I fought me and I killed me, or at least the bit that was so passive aggressive (did, did, and died).

I am out of the ring, then. Boxing career over. Gloves off and no going back. Finally, finally I am looking round for tea and biscuits, a comfy chair and a nice magazine. Finally I quite fancy having a few material comforts and pleasures.

Looking at these before now would have been like being asked to go window shopping for dreams at the expense of conceding the match. It wasn't on, and all that daft stuff like owning a home or having a holiday or fancy clothes or new, well, anything, even having any item 'just so' (instead of nearest, cheapest and 'it'll do') - to be honest it all looked to me like the pointless pursuits of those with too much time on their hands. Yup, I guess I'd had my martyr's hat on so long, I was getting a superiority complex from it.

So anyway:

Here I am, then, free (from myself) to relax and look at all the pretty things. Free to get ideas. One friend is helping me work through what it is that I want; I've also been picking up the philosophy behind things like NLP and Huna, albeit originally with my tongue firmly in my cheek.

I find I am actually now ready to believe that if I sit here and focus, even on material things, the universe will help me out. That if I decide what I want to have/want to be and relate that to being 'all about the real me' (yes okay its always all about me, but the question is, which one? Pardon?), in other words if I can see these things as natural expressions of who I am right now, then we're only one step away from the Huna/Silva idea that visualising yourself as having something already is the surest way to get it.

Yeah (cough again,) sorry, that just got too frilly for me, too. But I'm up for believing it.

The kitchen spatula!

Phew, I knew we'd get here.

This morning, given the date and all, an msn friend and I were discussing the pros and cons of tossing over turning. Pancakes.

Neither of us, however, could remember what the turner-flipper thingummy was called, so I went googling, and discovered that some online kitchen shops simply call them turners, whilst others call them spatulas. It seems to be down to personal preference.

The odd thing was (and I swear, this just doesn't happen to me; ever) I found myself going all girly and daydreaming about kitchen utensils; scrolling page after page of ravioli tins, pasta machines, garlic presses, designer coffee pots; you name it, and actually enjoying myself. No little voice in the back of my head telling me I'm being daft, or selfish, or greedy. Peace. I started getting a picture of my dream kitchen, which, until today, I genuinely didn't know existed. Tres bizarre.

To give you a rough picture, I still have the gas cooker I bought new as end-of-range (on sale) 23 years ago (plus or minus a few bits like the numbers on the buttons, or the handles on the grill pan). The cupboards are 1970s Council cupboards old enough to have traditional hinges on the doors and were here when we moved in. The electrical goods have been bought only as their predecessors blew up, on sale and from the nearest shop with the quickest delivery, except the fridge freezer which we had time to shop around for and therefore purchased second hand. No dishwasher.

Like I said - I had a serious case of 'It'll-do-itis'. Opus Dei's got nothing on me, mate, I've been birching my soul, by the looks. Bloody bonkers.

The kitchen spatula (but really, this time):

So my mum has this family heirloom kitchen spatula. Don't laugh. It was my gran's and was kept and used because it is just such a fantastic shape. Worn in, over the years, it always was just the right thickness, with an odd angle at the tip, which made turning things over in the pan a lazy, easy, flick of the wrist, instead of the shovelling motion you have to use with the modern, straight ended things. These days, scrubbed to a sliver over the last hundred years, it has this slight curve to it like worn silver, fits my mum's hand and 'flipping' angle perfectly and everything she ever fries turns obediently on command like something out of a Disney movie. You sort of expect mushrooms to giggle and burgers to sing a little chorus in tune with cartoon bluebirds on the windowsill. Honestly.

I grew up using that spatula, and looking back, I've never found anything quite so handy. If you think I'm nuts, that's fine, but just imagine being given something different to peel potatoes with. You're used to what you're used to and you want what you want.

So here (finally, after searching about 60 google links) is my spatula. IT'S MINE, I TELL YOU! Even though I don't own it yet.
Fairly typically, I can only find it in an American store that doesn't do exports. Just as typically, a search for the manufacturer 'World Cuisine' came up fruitless from this end.

So.

So I'm just going to bookmark the page, focus on this decision, and let the Universe help out. I want.

Sending vibes out now.......

"Here spatchy-spatchy-spatchy, come to mummy."

Tags: MontyPython, Dreams, Spatula, Huna

Aftermath

2006-02-22T19:57:00.000Z

One of Son's troubles is that he will try too hard to make friends. Trying too hard involves taking on all the arrangements; feeling that he has to come up with a plan for a game in which he is instigator and producer and ultimately (although he doesn't see it that way), boss.

He comes on too strong, his efforts are too desperate but appear controlling and he scares people off.

I can only hope that out of this disability will come a lifetime desire to understand the intricacies of how people tick - a self imposed degree course in manners and human fallibility and need and making others feel wanted and validated. Its a real likelihood; unless he gets too wrapped up in the concept that they are all miserable so-and-sos and nobody understands him. It has to flip on its head - he has to realise that if he understands them instead, then he can modulate what he says and does to be in their specific language.

Anyway, yesterday's end-of-the-world scenario came about because he was posting to a forum - a games forum where, after a shaky start getting to grips with the concept of spamming, they allowed him to stay and he now has forum friends who take him by what he has to say. Its great, plus I seem to have ultimate control now over what he says and how he says it because he wants to give a good impression. These guys and this forum are important to him. He will sneak on to the boards, but if he wants to post, he ends up asking me how to spell every second word and even asking me to read and edit so that he doesn't look silly.

Before visiting the boards he had signed into an online game. He was winning. Because he was winning, somebody made him their 'buddy', ie had the computer record them as a team, so they couldn't shoot each other. It was probably a tactic on the other kid's part, but to Son it was like six birthdays and a Christmas all at once - all he saw was that somebody liked him, just because of his skill.

The post he then went to make was not a suggestion, but a rather imperious sounding announcement that he would be formulating a team to play this game - he assumed forum users would rush to sign up and be on his team and then he would have more 'buddies'. There was no telling him that he sounded pushy and would put people off, he was too enthused. We fought over whether he could post it or not, I insisted no, and he ignored me, becoming increasingly belligerent. In the end I had to crash his dad's computer to cut the broadband access and save him from himself.

That's when all the excuses came out - how he 'needed' this forum, how he felt he was really a fifteen year old trapped in an 11 year old's body, how none of the kids at school understood him and his only hope of ever having any friends (and not being morbidly lonely and tormented) was to relate on forums.

I spent the night in torment, exhausted from his refusal yesterday to budge from his position, listen or relate and also worried, not just about the facts of his case (which are probably true) but about how much this was really affecting him.

Today is a new day and Son might as well be a new boy.

"So, think you might have a really good day today?" says I, tentatively.

"Oh, yes, I think so" he replies. "Yes I will. And I'm really glad I got all that off my chest yesterday. Thanks mum."

He gave me a lovely smile like yesterday was a storm in a teacup, nothing more, and I realised then that, of the two of us, I was the only one who spent the night feeling shipwrecked by it.

When I wrote yesterdays post, I really did feel I had hit a brick wall; that the only thing that could change to take these situations down a notch or two, was him. I was wrong, obviously. Time to revamp my reactions, for my own sake.

Email #26

2006-02-22T12:00:00.000Z

Dear Mrs Baggage
Just to confirm that I have received your response to Lewis's propsoed statement,and your completed preference form giving P as your first preference. A copy of this has been sent to our School Admissions department and they will return it indicating whether they can allocate a place at the school. As you are aware, I had liaised with colleagues in Admissions when we issued a Note in Lieu for Lewis, and the message I got then was that P is heavily oversubscribed - but I will wait and see what the situation is now. I will then consult with the governors of P (and of the school allocated by Admissions, if this differs) and await their response.

I will try to keep you updated with progress along the way!

Psychological Over-Exercise

2006-02-21T07:55:00.000Z

What I don't want.

I don't want my Aspergers Son to have a bad day at school and decide to share for two hours solid in tones of doom.
I don't want his mood to change from one day to the next.
I don't want the yo-yo effect of switching from 'yeah great day' to 'no nobody likes me, nobody's ever liked me'
I don't want all the 'but's that follow, all the assumptions (at 11) that I don't know what I am talking about, that nobody in the whole world understands him, me included, and that the world and his dog is to blame.
I don't want the sight of his sister, younger by a year, keeping herself to herself for hours, bored stupid but hoping to be noticed and praised for not harassing mummy like her brother does.
I don't want that sometimes Mr 'nobody listens to me' is so forceful that he gets the whole evening and she gets two minutes of my time and a kiss goodnight. That breaks my heart.
I don't want the fear that on the days he says he feels like that, he might really feel like that.
I don't want the fear that on the days he says he feels like that he may not actually feel like that, but feel instead that having 'issues' is a way to demand my attention even after I've told him to drop it. I must be transparent - emergencies and heartaches always, always take me from whatever I want or need to do.
I don't want the occasional insight into his school life when all that does is prove how he takes the reality at home and twists it to his teachers in a most bizarre way, usually humiliating to me, to make himself feel more valid.
I don't want the temptation to always assume he is pulling the same trick on me, just so I can rest easy that his life isn't really a living hell.
I don't want the way that his sister has no friends either because of the way her brother is.
I don't want my own imperfections, the way I feel jaded and exhausted and ultimately stressed when he just keeps droning on and on, refusing to take an answer or be proactive.
I don't want the way I finally get snappy
I don't want the way this seems to be the only cue he will take to shut up, anyway.
Most, most of all, I don't want the memories of having gone through all this with his older brother. Even when I was ten years younger it was a killer and all the old emotions are dredged up in anticipation. I deserve to be exhausted for being a decade older, never mind for knowing what's happening. Its like having to put your feet back in the shoes that blistered them, before you've healed.

Here's the game. Today someone suggested I write a list of 'don't wants' and then convert them to their opposites, to find out what I do want. They were supposed to be one word things.

It doesn't matter anyway - four or five hours ago it was a whole other list.

Breaking Silence

2006-02-14T07:54:00.000Z

Or breaking wind. Not sure which.

Not stopping - just need to share the joke that my son just told me, or rather to share that my eleven year old Aspergers son just told this joke at all.

A nunnery burns down and all the nuns die.
They get to the gates of heaven and God says:
"Here is a pool of Holy Water. Before you enter, you must wash every part that has touched a man."
A little sister at the back shouts:
"Quick, let me gargle first, before Sister Mary sticks her arse in it!"

Right. Not sure whether to laugh, cry or hit the bottle. Think I'll go back to playing hunt the carpet, or scrub a few kitchen cupboards, or something.

Floaty Weird

2006-02-11T07:52:00.000Z

Yesterday I hit failsafe.

The brain was obviously still doing a hundred to the dozen, any and all sense of creativity was still packed away (I have to be cheerful to be creative. I can be 'not cheerful' and still funny, but its too caustic, too sharp) and same as for the past four or five days, I was struggling to look outside of myself and my self pity, was hardly visiting or commenting on anyone else's blogs and felt my attempts at humour smacked of desperation.

What does a girl do when her racing goggles are still glued on, the wind is still billowing in her face at 100 miles an hour, but the target she was careering toward has gone up in a puff of smoke? Why, she scouts desperately for the first 'odd' newsy item that sparks a few new braincells into action (and a change is as good as a rest to a blind donkey, or something), and blogs it, of course. Hence the sperm blog. Oops, sorry about that.

Astryngia asked if I had kicked the shit out of a pile of sofa cushions yet - my cure-all for extreme frustration and adrenalin overdose. Sadly no, not this time, although I may possibly still feelinclined, some time this week. Getting to that stage involves a trip out through the bottom of ugly self pity and face-swelling tears, until the anger is at myself as much as anything else, so this time I never got that far. To be honest I haven't really got that far since the break up of my first marriage, when certain truths came out.

No, this week I was just so highly strung in anticipation of Son's special ed' statement, so much on auto pilot for losing Husband to a training course all this week and next, that when it hit, it was like a brick wall (at the aforementioned 100 miles an hour). I was a mess, and feeling far too old for all this malarky. Smashed, even. Far from being up and at 'em like some bouncy, elasticated alien facsimile of a human, I just sagged. I wrote on here in an effort to find the energy to, well, anything. Only anger would have inspired that.

Oddly, as I calm, the anger is all that's left, like a grey cloud around me. It was as much as I could do to stop myself from severing all ties with someone yesterday. I was worried, I was concerned, and they snubbed me. The one thing you don't need from a 'friend' when you are down, is power games. I didn't really expect to let someone in on how vulnerable I feel, to have them play at building and snapping rapport. It was like a double kick in the gut - not just that this happened, but that I had thought so highly of this person and allowed them into a position to be able to do that. Make it triple, the third point being that I had allowed myself to lean on someone, to rely on them.

There is always the possibility that I am just too sensitive at the moment.

Panic is like caffeine - it drains everything and today I am even having trouble stringing a sentence together - I just can't be bothered to be bothered, if that makes sense.

Time, I think, to pay a little attention to myself, my self esteem, and my house. Time to take things down a notch or three, and become deliberately slow and methodical, after the hyperactivity of this five year fight to have my Son understood and catered for at school.

I am feeling too floaty weird to say whether this stage will last an hour or a week, or anything in between or beyond. I do know that when I come back to the computer it will be because I want to, have time to, and, for a change, have something to say. It will be a treat, not a desperate attempt at procrastination. I guess its the difference between lying on the sofa to relax and lying on it because you've just been run over by a truck. I want to be here because I want to be here, not because of need.

No more trucks.

See you soon :-)

I don't want to speak to soon, but I definitely overreacted two days ago. I am still planning to create a new life routine and its all good. So far I have found two corners of the kitchen not properly witnessed or wiped since Christmas, and sorted the seven worst storage drawers, five of which have not had a proper clear out since 1996. I just thought I'd say this in case anyone thinks I've gone off to have a mental breakdown, when in reality I've gone off specifically to insure myself against one. Its a Zen thing. Sabbatical, even. Still no more trucks - I have time to clear multiple slates which have been neglected and actually get ahead of things. That will feel odd, it not being the normal situation at all. Have fun!

Japanese Soldier

2006-02-09T17:21:00.000Z

Remember those stories of poor little Japanese soldiers, marooned on islands which they were charged to defend, and nobody went back to tell them the war was over or to take them home? If you could get past them taking pot shots at you, you still couldn't tell the old guys the truth without a doctor present, for fear they'd have a heart attack on the spot.

I know how they feel.

Two hours ago, someone took the lid off my pressure cooker. They undid things, and the physical effects have been a teensy bit worrying. Quite aside from mental blankness and indecision over whether to celebrate or hide under a rock, my chest hurts. I'm still not having too much joy with taking a full deep breath and may have to go for a walk shortly, as an attempt at carefully controlled adrenalin release. As my blood pressure must have hit the roof (I can still feel the woomph, woomph of it rushing round my head) I am still quite dizzy, but feel I should post to update all you lovely, caring people who have commented and shared my frustration.

Little things nobody told me (which I have now found out via the Ed Psych):

Statements no longer tell a school how to achieve the goals set
This means its a good statement after all
The big issue comes with hand-over between the schools, what they call 'transition'
That's where the current school tells the next school how they do it
And the next school decides whether thats the way to continue
But nobody says they have to.

She did tell me that she had a copy, that it was a good result, and I should be pleased. I'm trying my hardest at that, honestly. Meanwhile I am still angry that this turned up just before the holidays, still pained that I could have been left in this state of high alert for a solid week, still flabbergasted that there is no mention of home-school communication etc. I am also really, truly pipped that all statements are now, by law, far less precise, and that this conveniently makes it nearer to impossible for a parent to prove their case if a school fails to make the provisions stipulated. 'Access to', I ask you. How more vague could anything be?

However.

This is just to say that I retract the portion of my earlier post which basically called the experts within the hallowed halls of ESCC a bunch of money grubbing, unsympathetic, child-hating jobsworth wankers pushing frustrated, belittled mothers and children to early graves. Apparently they're not. Apparently the arseholes are even higher up than that, somewhere in Central Government, presumably in the DfES.

Lovely.

Fuck The System, It Sucks

2006-02-09T07:48:00.000Z

I am so, so effing fed up with East Sussex County Council and the whole Special Needs Statementing procedure.

As per bloody usual the paperwork has turned up just at the edge of a school holiday. I don't know how they do it, but they always do - every time over two sodding years. I now have fifteen days to approve or challenge what the County has to say, nine of which involve weekends and a half term holiday. I'm too late to make appointments with any of the specialists to clarify what they feel my son needs (and whether that differs from the County's interpretation of what they are saying), if I manage to make appointments for the split second school reopens, that still gives me four days in which to meet, query, discuss, formulate a response and get it to the County via snail mail. My fifteen days instantly equate to one, maybe two.

I am so tired with being fucked over like this.

The County have listed every provision that the educational psychologist says he needs. The trouble is she did not list any of the provisions he already receives. She named them, said how essential they were, but when it came to filling boxes she used the fields to add extra assistance on top of what already is.

Trouble now is, that if I let this proposed Statement lie, he will have access to all of the frills but none of the basic stuff, like a teaching assistant to help him focus, remind him what was said, redirect him back to what he's supposed to be doing, stop him making the kind of social bloopers that make NT kids so vicious. All he is to get is equipment, and access to stuff that takes him out of the classroom and away from the curriculum, which would make a vicious circle - the more behind he feels compared to his peers, the less willing he is to make an effort.

He's the type that if he saw his bus at the stop, sooner than run for it and risk looking a fool to everyone already seated, he would pretend he was really meaning to walk, the whole time. Except then he'd swear, and berate himself, and get depressed and on and on.

I could give up and take him out of mainstream; ask for a special school to be listed, but I refuse. Aspergers is too broad a term, most of the schools cover the whole Autistic spectrum, so he would be in with a class of kids that phase out and stare at corners, and it would drive him nuts. On top of that, he'd be lucky to leave at 16 with certificates of achievement when we already know there's a 98% probability that he's a gifted child and ought, with the right support, to swan through the basic, average, mainstream curriculum in double time.

I hope that any SENCO with half a brain is going to compare the well documented reality of dealing with my Son to the viciously stark and inappropriate and non-specific list of things he should 'have access to', and scream. I certainly imagine his teachers will be screaming, but without an interpreter there, most of them will be doing that for other reasons.

He can't read faces - he reads voices, but badly. If you have a naturally authoritarian tone, if you 'tell' instead of asking, he will challenge you for being a bully, or shout his reply. If you are new to him he physically cannot absorb what you are saying whilst looking at you - its too much information. How many school teachers do you know who live by the tenet that if you do nothing else, you make sure the difficult kids are facing front and watching you?

I can see him going totally apeshit in his first week. I can see his reputation, his aspirations, his self esteem and his chance of finding a single person willing to understand him, going right down the pan.

'Access' to something, for an Aspergers sufferer, isn't just about the object being there to use. Its about being able to value it, relate to it and absorb what it has to offer. That's entirely down to presentation, to whether there is an adult there that the child already relates to, respects and trusts. Hell, being able to remember the adult's name after two terms would be an achievement.

WHY is ESCC all about the money? Why are they so rigid, so unable to interpret anything but what's in the bloody boxes? Why, after the reams of information they demand, can't they be bothered to fucking read or interpret it? What is the point of a caring system, with all the angles covered, if its staff and/or committees are peopled by jobsworths who have their eye on the piggy bank? Why is the statementing system not about showing what is needed but about politics, about forcing those in power to admit it?

Pardon all the effing. I am trying to work up enough steam to be aggressive, because the alternative is to collapse into some sort of exhausted, tearful puddle, and I'm buggered if I'm going to do that; it would be the same as letting the bastards win twice.

My God, but I've earned my grey hairs now.

Email #25

2006-02-01T11:58:00.000Z

To SENDIST:

Thank you for our telephone conversation and for saying that you will accept email as written confirmation.

I can confirm that I will be available to appear at the hearing on any weekday during the proposed fortnight commencing 08 May 2006, also during the fortnights either side.

If the witnesses I want are not already called by the LEA, then I will be asking for them to be summoned, so am unable to confirm dates on their behalf.

Best regards

Cheryl

Parent

Email #24

2006-02-01T11:56:00.000Z

Many thanks for this, Mrs Baggage.

I will ensure it is passed on to Mrs Caseworker-manager - with regards to the issuing of the proposed statement, I will be drafting this tomorrow morning and will try to get out to you as soon as possible.

Best regards,

Mrs New-caseworker

Email #23

2006-02-01T11:42:00.000Z

Dear Mrs New-caseworker

I wonder if you could please copy this to Mrs Caseworker-manager as I do not have her email address, and thank her for the very positive telephone conversation last week.

Its quite long – I need to say my piece about the anticipated Statement, my school choice (as Mrs Caseworker-manager and I discussed) and, also mentioned by phone, my position as regards Tribunal.

Statement

The advices which resulted in County's decision to statement were made against a backdrop of very high support at junior school level, and I hope you will recall from the provisional planning meeting, how:

The help the junior School currently gives to my son goes way beyond SEN+
The SENCo stated (and teacher and Ed Psych confirmed) that the level given was still insufficient to his needs in a junior school

They also unanimously agreed that his special needs, (including inability to recall faces, difficulty in unstructured or crowded environments, inability to read social cues, fidgety and distractible nature) meant that even more provision would be needed to allow him to access the curriculum in a Senior School setting.

They confirmed that he needed an adult companion at all times in order to access the curriculum during structured periods and to negotiate the unstructured periods - break times etc.

In other words, that they were already treating him as if he was on a band A statement, that this was insufficient to his needs in a rarefied, small school environment and even more so to a senior school setting. (Have I told you that, even with this level of support, he has currently lost his place on the end of school trip to the Isle of Wight, based on rules about numbers of detentions? Sometimes it feels like he lives in detention)

At that meeting I mentioned my fear that he would enter senior school and be excluded almost immediately for misreading/over reacting to some situation or other, and the comment I got back, in your presence, was that without the required level of care, this was as good as guaranteed to happen. They all seemed to be in agreement on that point, so I am forced to push for the care that those experts with most direct experience of his needs have said is not simply desirable, but necessary.

To explain my personal awareness of how easily this can all go horribly wrong; his older half brother moved to Seaford in 1996, was spoken to in a disparaging (he read threatening) manner by a small group of boys on his first day at SHCC, and very nearly got excluded in the first week for smuggling a rock to school in his pocket 'for protection', which, when the other boys approached, he began waving around. In that case, however, there was no statement at the time; diagnosis of ADHD/Aspergers being very much in its infancy.

As to Son, a group of children once rowed with him in year 1. He refers to it as 'The eight on to one incident.' He remains, in year 6, convinced that some of them bear him a grudge from that and he continues to avoid them and treat them with distrust. Part of the disability is an incredibly long memory and a determination that other people’s opinions are as immutable as scientific facts. He is not antisocial; he wants to fit in and wants to be mainstream, so his lack of understanding and the messes it gets him into cause him genuine distress. He has the capacity to access the full curriculum, with support. He wants to be a mainstream child, I want a mainstream curriculum, which I appreciate is a subtly different goal from his.

With the great number of staff and pupils at a senior school, plus the expectation that pupils will, in the main, be more adult and with better social skills (but not adult enough to remember who they fell out with last week), the provision of varied/various staff in the playground and corridors can in no way be expected to cover all eventualities where an Aspergers child is involved. He, and the school, need someone on the fringes, observing, who is Son-centric.

I again attach the provision list made by Sussex University for its Aspergers students. As peers at that stage are more adult and understanding, classes smaller due to the higher level of education, etc, I believe this is a fair standard to set as a bare minimum, for assisting an Aspergers sufferer to survive and learn in the louder, rowdier, hormonally charged rough and tumble of a packed senior school.

Excuse me, without the provisional statement in my hand, I remain terrified.

School Choice

Referring to any standard descriptors for the syndrome, there is no doubt that access to a curriculum and social learning, through reduction of stress factors and emotional hotspots, is greatly increased by:

monodirectional traffic between classes
lack of nooks and crannies and squeeze points in the geography of the school and its halls
lack of distractions as would be provided by open land (or with SHCC even a main road) between separate school buildings on or off site.
minimal numbers of people to encounter in unstructured periods, such as break time.
reducing other stressors such as loud noises.

For this reason I am asking for the P School. Its departments each occupy a dedicated wing - once off the central stairwell, all traffic goes in the same direction to or from class, via unusually wide corridors, on each floor. The break times are staggered. There is no end of session bell. In case of emergency no classroom is remarkably distant from the stairwell and the offices of the head or senco. The building was designed as a whole, without add-ons through the years, and the predictability of structure and atmosphere seems purpose built for a mind which cannot function at its best without logic, routine and sameness.

There is also the point that there is only one turnstiled and guarded exit from the building. Even if he flipped out, he couldn't do a runner.

I also believe that without such structure, one-on-one support will need to be more restrictive and immediate, further disassociating him from his peers and reducing future opportunity to offer him more freedom or independence, if/as his skills develop.

Is there any way, please, to have this school named on the statement, as the only building designed to best cope with my son's special needs? I don't ask lightly - I am facing another six to eight years unable to work or forced to work from home, to be available to attend school when there are issues, and I would plump for the nearest school in an instant, if I felt it met his needs.

Tribunal

I am caught between the devil and the deep blue sea, forced to keep my options open for my son's sake. I have run out of time, as he is so close to entering senior school and we are already eating into essential transition time. There is nothing militant in my actions and I really appreciate the forthcoming way that you and Mrs Caseworker-manager have dealt with me.

I am advised that I can change the grounds of my appeal, but not until I have a final statement in my hand. I am asking you please to issue the provisional statement as soon as possible, so that we can begin the formal negotiation period and get to the final statement. I hope that we can see this process completed prior to Feb 27, the cut off date for our evidences to be presented against the current appeal.

I understand that it is the responsibility of the County Council, not myself, to advise tribunal if they intend to issue a statement, my tribunal application therefore moves forward until I have a final statement in my hands and can act on that accordingly.

Really sorry, hope you understand.

Cheryl

Wake Up Call

2006-01-25T07:45:00.000Z

ROFL. My head is in such a spin that I have forgotten why I chose this title, when I first decided to 'do a quick post' over an hour ago.

Oh yeah, maybe that's why.

I really need to start carving my time into chunks again.

The kids are getting antsy at the time I spend on the computer (I wouldn't slope off to the darn thing if they weren't totally involved in their own stuff in the first place - but no, I guess I'm meant to be on call.)

I have all these T-shirt slogans whipping round my head (and yes my mind works in a way similar to Zilla's), so I'm imagining innuendo so the T shirts can be worn in front of the pure of heart without causing offence, yet aren't so tactful that nobody at all gets the point.

Have you seen the one with a lollipop on it and the slogan 'It aint gonna suck itself'? Marketing genius. Thats the level I seem to be aiming for.

Then I joked with ME Strauss that I wanted to be an honorary member of the SOBs and she offered me full membership. I feel neither successful nor outstanding (least of all successful) so in the past two or three days I doubled my readership. Bloody Statcounter went on the blink and didn't pick up the figures, but Webstadt did, and they are picky. They only list figures for individual visitors, not pages views nor return visitors.

I've got enough out of them to know I doubled my readership and enough out of statcounter to know that I seriously reduced my returners and page turns.

So. It wasn't worth it, but heres how you do it, if numbers are worth more to you than friends: Go to MSNBC Newsweek, read the top story, read a couple of the related front page stories, and do a post linking to them all. Newsweek has a Technorati link page showing what bloggers are saying on the subject and as long as you are among the earliest or most recent to post on the matter, people click through in tens and hundreds. They don't stay, they don't come back, but they click through.

Meanwhile, if your indepth political hot potato of choice doesnt suit all of your regulars, you slowly lose the guys that matter - especially if you have a brain warp like I did and post on the exact same subject three days in a row. Hic dur blurble and sorry.

Anyways, I feel equipped to take advantage of ME's lovely offer now, because I've done 'successful' as defined by page ranking systems etc - I just didn't like it.

The BIG NEWS today (and the reason I went off on one about education) - I got an unofficial phone call from the County Council this morning, to tell me that, owing to additional information provided by the Educational Psychologist, panel had looked again and were going to give my son his special needs statement after all. WHOOPEE!!!!!

Of course it has nothing to do with me standing in the school office for two hours yesterday, photocopying evidence for a tribunal. Of course not. Nothing could be further from the truth, and we are all happy to breathe a sigh of relief and put the last three or four years of shenanigans down to a communication error, because that ways its nice to everybody and everybody can be nice to each other.

Well I say that, but theres no way in hell that I am going to let go off my right to tribunal until I see what support they have put in place. If it still runs short of what the school thinks he needs, then I may just keep on keeping on.

So - T-shirts, visitor numbers, accolades and the bizarre sensation akin to putting down a heavy bag (my brain and my arms feel all floaty) are the things that have amused me today. Them and eating constantly, for something to do, to contain the excitement.

OK so I COULD have written a formal letter, paid a couple of bills and filled in a couple of essential, date-specific forms by now. For could, read 'should'. I guess I will have to do all that in the next two hours, so the kids don't berate me for still being on the computer when they come home.

But I think I'll just go and have another cup of coffee and another slice of toast, first........................

P.S. The image has no relevance AT ALL. I just like it. It makes me feel better.

The Sausage Factory Mentality

2006-01-23T07:43:00.000Z

Husband had a day off work today.

Maybe you think its a little early to be speaking of that in the past tense, but its now half past three and the children are home from school. Life is noisy and structured again and complete freedom of choice is gone for another day.

I know too many mothers who outperform the men at work yet still joke that they go to the office for a rest. If you ever happen to hear that line, believe it.

I went to collect the children on my own - after all it's freezing cold out there and Husband took them to school today in the first place.

Our son has Asperger's Syndrome - aka Absent Minded Professor Syndrome and for that he is different from many. Daughter, in spite of emerging from the same gene pool, is his polar opposite; neat, structured, willing, tidy, pleasant, conscientious, patient. I love them both to bits although neither is representative of their home environment - I keep joking that Daughter is a throw back to my Mother In Law, who we visit as infrequently as possible. Nonetheless, all things considered my two seem to represent the extremes being highlighted by the recent article The Trouble With Boys, ie the way that the current school system is ignoring certain learning styles, speeds and needs.

I'd argue the toss with Newsweek about that title - the trouble isn't with the boys at all but with the schooling system. I'd also dispute the byline that boys are any more kinetic than girls. Girls have just as much desire to act on things, its just that the female brain seems, by training or inclination, to run an audio digital checklist somewhere between the opportunity and the decision to move. A checklist that goes along the lines of 'would the teacher like it, would mummy tell me off, have I been told this is appropriate.' That's exactly what they are saying the boys do, come puberty. "Would I be laughed at?" is a terrifying thought that runs constantly through the heads of most teenagers, whatever gender, and I think that in all cases the supposed opinion of the immediate peer group holds more sway than that of any adult, male or female.

I leave it to you to discuss whether girls are more sensible or simply more biddable and whether or not the two conditions are the same. Girly girls are certainly easier to educate (as in, not so much work), but you can decide whether being able to rationalise before acting, when that process relies on considering the opinions of others, makes the young female brain more inclined toward leadership, or servitude.
Perhaps we should even be training/freeing females (take your pick) to be more impulsive; not that this would please any educators who have reveled in increasing classroom structure and less need for creative thinking on their part.

Back to my own children. As an example of how male and female brains are built differently (and they are, females form multiple slim connections between left and right hemisphere whilst males tend toward one chunky connection like a fibre optic cable), we have had to give up on family conversations on the way to and from school. Instead we have half way markers, and speak on the topics of choice for one child, then the other.

This morning on the way to school, Daughter, 9, spoke on the pom-poms her class is making at school, using two circles of card and some wool. Son, 11, wanted to talk about renewable power sources, cold fusion and eliminating greenhouse gases, nothing remotely related to the day ahead.

On the way home from school after a day of input, Daughter recounted how she sat next to her best friend at lunch, how she got a hug from the first aid lady after getting a football in the face during (soccer) practice, and how I would need to wash her muddy school plimsolls.

Son made a minor comment about a girl who wrote him a love letter, but that was the end of any feedback from his school day and then he wanted to design memory downloads so you could 'remember' how to fly a helicopter, (like on The Matrix, except he hasn't seen the movie) and wondered how we could train people to access every memory they have ever stored so that the right ones could be copied, zipped and downloaded.

We are all on several sliding scales between extremes and there is no definitive male, female or even human baseline for attitudes or learning styles, independence, tastes, values or opinion. Some of those factors are hardwired and some aren't, but that's not the point.

The scale of relevance here is that some of us will always see the detail and some will see the bigger picture and most will be somewhere between the two. The fact that these inclinations fall into two camps broadly comparative to gender does not in any way make the correlation a rule.

It is the job of the educator to make the material of interest to the extremes and to everyone in between, to appeal to those who need first to be enthused that this is relevant to them, as well as to those who pay attention unquestioningly.

To suggest that an entire gender, let alone children in total, should automatically be of the latter persuasion is unbelievably crass.

The Trouble With Boys

2006-01-22T07:41:00.000Z

I've found a brilliant article over at Newsweek about boys failing at school.

It's really very indepth and goes on for a few pages, but made me reevaluate the problem with linear schooling as I saw it.

Right now I am fighting for a statement of special educational needs for my son who has Aspergers Syndrome. If he is eventually awarded the assistance that the Educational Psychologist says he needs, the likelihood is that he will be given a female teaching assistant, but now I have read this article I wonder if that is such a good thing.

I especially loved the observation in the article that young men starting out at senior school, 11 to 13 or older, are entirely preoccupied, like teenage primates, with finding their place in the pack. Their world view is totally wrapped up in whether this or that activity makes them look weak. If asking for help appears weak then they just don't ask.

I am fascinated by the amazing effect, in one study, of providing every boy on one program with a male mentor, because somehow then, academic success ceases to be girly, weak, irrelevant and becomes something that earns them the respect of a 'strong' male.

Yes ok so it goes against the pc view of all people as equal, but this is about teaching a child in the throes of testosterone addled misconception. Sometimes you have to step into their world to reach them, and that doesn't mean admitting defeat or in any way subscribing to the male superiority theory. It just means accepting that, during puberty at least, male and female hormones result in you effectively trying to teach the same thing to two different species.

Its not fair to penalise them for not being girls.

Addendum: A feminist view, here.

Bl**dy Men

2006-01-14T07:28:00.000Z

Or rather more specifically, one bloody man.

Husband has blogged a very short but completely true conversation from last night. Do NOT ask me how my Aspie Son's mind graduated from the torments of true love, via the intricacies of Star Wars on his Gameboy, to the potential pleasures and dangers of masturbation. It just did. This is the kid who looked up from playing 007 over Christmas to thoughtfully comment that "James Bond, he's a bit of a sex pest really, isn't he?"

Apparently wooing a girl in every port is amoral, in Son's world. Its not enough of an issue to stop playing the game; just an observation, so it seems I have a deep, romantic little soul here, with an inbuilt tendency toward (at least serial) monogamy.

Anyway, here's the latest as reported by Husband (the evil swine):

This evening my 11 year old come out with a classic…..

Sitting playing his X-box he looks up at me blogging and the conversation proceeds as follows.

SON “Dad if you wank can it kill you”?

After picking myself off the floor…….
ME “it will make you go blind”…..
SON “Your joking”.
ME “Look at me I have to wear glasses”
SON “ No honestly can it harm you”?
ME “ Every time you do it God kills a kitten”!
Daughter (9) screams “it was you that killed my kitten”! to her brother running crying from the room….
Taken ten minutes to calm her down and apologise.

This is mostly true. Daughter also screamed that she hated both of them, wailed all the way to the other end of the house then wailed her way back to just outside the living room door, to a position suited to shouting sobbing protestations from a safe distance. Scarlett O'Hara, eat your heart out. I was cracking up. My ribs hurt.

Husband in sweet, helpful voice: Oh, darling, its not true, and look, mummy's crying too! (I was, sort of)

Daughter, enraged: She's not! She's bloody laughing! Waaaah!

She lamented her way up the house again but slowly came back. Once I had her by my side to talk to, this is how it went:

Me: Darling, rotten daddy was just winding Son up. Do you know what wank means?

Daughter stares blankly

Me: It means playing with your private tickly bits.

Daughter stays wide eyed

Me: And sometimes when boys are growing up, they wake up in the morning and their willy sticks out and feels even more tickly, and then sometimes they play with it.

Daughter (with a big smile like she's got the point): Oh! Daddy does that!

Me: Eh? What? When?

Daughter: You know, when he's lying on the sofa with the telly button (does action of one hand clicking button, other hand defensively clasping crotch)

Me: Oh that! No, thats a bit rude, but wanking usually involves going into your pants and getting it out so you can tug on it properly. Its private.

I have to say that there was more to the earlier discussion, specifically I had remarked that fiddling about can only make little boys go blind if they poke their own eyes afterward before washing their hands. Because of this, Daughter led our current conversation on to wonder, in hushed and gossipy tones, whether her brother had washed his hands recently.

She then forgot all about her lost (and presumably deceased) kitten and skipped off happily (smugly, even), pausing only to eye her brother up and down and point at him in a "haha you're mucky and rude!" kind of a way.

Kids.

The Love Letter Saga Continues

2006-01-13T07:26:00.000Z

From here.

Son went back to school yesterday and like a secret agent tried desperately to find a chance to palm his reply to the young lady without anyone noticing. He never found his opportunity, in spite of her finding three or four non-reasons to hover quite close in unspoken hope during breaktimes.

They were in each others breathing space, in public, unable to say a word, and apparently it was torture.

He and his letter of reply went back to school again today, but, somewhere along the line, parted company, and this is where he realised quite how expert he had been at speaking in code.

The letter was handed in to his teacher who saw it was addressed to "?" and saw the self effacing way he had belittled his move up to the top maths set. In truth his admirer had been on the same table as him before he was moved up and had made a lot of how clever he is and how sad she is. He had replied that her handwriting was wonderful and that the silly maths test might have made him 'look like Einstein' (sic) but that top set wasn't all that wonderful.

Teacher asked him about the letter. He dared to make a lunge for it and insisted it was very private. She concluded, from that, that there were deep feelings involved, and that these were to do with top maths set not being wonderful.

There followed a very long (if one sided) heart to heart while she tried to get him to talk about his fears, stressed that he should bring worries like this to her attention, but managed to get no feedback from him at all barring a Bart like insistence that it 'wasn't him'; that his mother (me) had written most of it anyway, entirely against his wishes of course. Thanks Son.

She didn't buy that and so it went on and she was reduced to examining possible scenarios out loud. "Well now, if....." and all that.

She was doing her best and in the end gave him the letter back, saying he wasn't to bring any more like that into school but was to talk to her, instead.

After school he told me all about his thwarted love life and his annoyance at realising someone else must have found and read the letter, to find his name on it and give it to the right teacher. He was imagining worst case scenarios and generally cringing, but by the time we got home I had a rough picture of what really happened.

I've just got off the phone from speaking to Teacher, who was mercifully still in the building after hours on a Friday. It took quite a while for her to come to the phone although the secretary who went to get her was back in the office almost immediately, and I suspect she steeled herself by completing other things before picking up the handset, expecting a different tone of conversation.

Meanwhile son was furious that his business was being spread to all and sundry, but once Teacher realised that the whole thing was to do with respecting the wishes of an admirer from the lower maths set who had sworn undying love and also sworn him to absolute secrecy, in short that his total lack of cooperation was to do with a lady's honour, she started expressing relief, then laughing, and ended up aww-ing and cooing about how sweet it all was.

Son currently remains stony faced (may he never discover poker), trying to decide whether to admit his own relief that his teacher isn't even more angry (to him, plain speaking of concern/forcing him to listen = angry), or to berate me for the next 48 hours solid that now the entire teaching staff will know and it will be all my fault.

I think I got away with it.

Email #22

2006-01-11T11:31:00.001Z

Dear Mrs School SENCo (and whom it may concern)

At the provisional planning meeting you mentioned the urgent need to plan transition for Son to go to Senior school, particularly the stresses of a lunch hall as an unstructired situation, came up.

I have put Son on packed lunches. I know that at this time of year, each class eats packed lunch indoors in their own classroom, and this is probably the ideal time to begin to introduce him to practice eating with larger groups, before the weather improves and they are all outdoors with even more pupils.

If there is an adult in with class 6G at lunchtime (or if there could be) could we please allow him to eat lunch in with his peer group (instead of in the special needs room) in rehearsal for transition? I know this is an experiment.

Many thanks

Cheryl

P.S. Son seems to insist on learning the hard way, in anything, so if he wants to leave part or all of his lunch I am fine with that. I understand this is a current bone of contention.

Oh The Drama

2006-01-11T07:25:00.000Z

Son is 'off sick' today. At eleven years old and in the final year of junior school, he has received his first secret, 'tell no-one or I'll die' love letter. In very flowery lettering, after all the warnings to tell nobody, she declared that she loves him from the bottom of her everlasting heart. Quote. He is to find out who she is and then come and see her about going public.

I've had two days now of him veering between demanding that her wishes be respected, and sitting there staring at it mumbling things like 'Oh my God this is shit scary.' Yesterday he realised that even the paper was scented.

I've watched him procrastinate as hard as he possibly can about writing a letter back, although in his worldview it would be unthinkable to just walk up to the girl that he has been told (but can't prove) wrote the note. A written reply it has to be, and he hates writing.

Yesterday, inspite of her warnings, word had obviously crept out from her side of things and he was inundated with pupils, even from other years, asking him if he was in love with Ms X. With no written reply to pass via her friend who is playing postman, he decided to fend them all off with 'That's private information and I can't tell you.'

At least the fear of being bullied and belittled by some of the nosier boys in his class has abated, albeit only under the new sensation that every pair of eyes in the school will be on him until they meet and hold hands; or not.

Today, waking to realise that he still hadn't put his thoughts to paper, he developed the kind of angst that goes to the stomach. Grey, listless, panicky and veering constantly between wanting to go to school and wanting to hide under a rock whilst doing an excellent impression of a drama queen throughout for a solid hour and a half, he wore me down. I sent his sister to school by taxi and phoned in to say he had stomach cramps and was off sick.

I was looking for the picture here, which about covers it really, when he asked if he could use his dad's computer. That was it.

There is now a 208 word love letter ready to be printed off, composed, corrected and completed in under half an hour. School would be so proud; he certainly is; being decided that he has stated his feelings plainly. Well plainly enough that if the letter gets stolen he won't be a laughing stock.

It starts with a smiley, ends with yours happily and tells her how impressed he is - that it 'took a lot of guts'(sic) to write the first letter, which remains secret as requested.

Well, not that secret obviously, now his rotten mother has blogged it - but he doesn't know that.

The stomach ache is gone and replaced by a silly grin. He can't wait to get to school but at this precise moment feels it will have to wait until tomorrow because going in late, today, would be 'too obvious.' His words.

Meantime he has gone in search of his personal CD to listen to some music - something fulfilling and uplifting and levelling, something that makes him feel like things are all working out. In his case, that's Frontier Psychiatrist by The Avalanches (Crazy in the coconut - that boy needs therapy.)

I love him!

Email #21

2006-01-10T11:29:00.000Z

Hi Mrs ISO

Yes please, I'd like a little help. I expect this to go to tribunal because really I think that if County were going to look again, word would have got out before Christmas, but I am waiting for a copy of the letter to County from school, and also to find out if/when the Ed psych wrote in with her own statement, so those items could have delayed things a little, if Mrs New-caseworker waited to receive them.

I was told I could have a copy of the meeting notes that my advocate wrote up for your files, and would appreciate that as soon as convenient. If tribunal involves attending a meeting (I don't know whats involved) then I would definitely appreciate advice and possibly moral support/company, in short as much help as I can get.

Many thanks

Cheryl

Email #20

2006-01-10T11:28:00.000Z

Dear Cheryl

Thanks for the copy - please let us know if you require any further support and if not what the outcome of the appeal is

With best wishes

Information and Support Officer
PARENTLINK

Email #19

2006-01-10T11:25:00.000Z

Dear Mrs New-caseworker

Christmas and form filling got in the way, but I want to personally thank you for attending the meeting late last year, about Lewis. I appreciate it was quite a way to come and ran on outside office hours; so, thank you.

I also want to let you know that I now have a receipt from the SEND tribunal team for my application, although an appeal number is yet to be advised.

I was unable to take a copy of the application for myself (no shops in Seaford with a photocopier and school was closed), but the initial form has a very small box for reasons. For your information I said in as many words that:

Lewis has Asperger syndrome with attendent dyslexic/dyspraxic difficulties

This is the second time application for assessment & statement has gone to stage 2 yet received a note in lieu

Lewis is about to go up to senior school.

Both the Ed Psych and Senco at his current school have said and are prepared to say again that he needs a statement.

The note in Lieu was apparently awarded based on some sign of academic strengths

These are unlikely to be shows of true potential, compared with the 98% certainty that he is actually a gifted child

These improvements in a restricted area of the curriculum would not in any case have become evident without the school consistently helping him at a level well beyond SEN+, including, this year, 12.5 hours per week of paid one-on-one, plus at many other times being the primary focus of the TA supposedly in attendance for the benefit of whole class.

I have recorded the Ed Psych and SENCo's opinions that this level of support is in itself not enough - their opinion being that he needs even better provision than that in a primary school setting, and yet more to access any education in a larger, freer senior school setting. In other words, I guess, that if his current statemented-style level of provision were actually sanctioned by a statement, it would still need a better one.

I do hope that if it comes to tribunal we can handle this amicably, as you can see from my wording (6, 7) I would love this to be settled with no blame apportioned.

It would delight me if we could avoid this necessarily adversarial process altogether and I know your department will have received a subsequent letter from Chyngton School, so I have to ask, did you manage, yet, to convey the strength of the Educational Psychologist's statement to your superior? Or the extra information that came up concerning Lewis' so-called strengths and the levels of support the school is going over budget to provide for him in order to keep him in a classroom setting?

Was there any possibility at all that the committee might look again in light of this information rather than going direct to tribunal?

I very much look forward to hearing from you.

Wishing you a Happy New Year

Cheryl

P.S. Personal FYI - It seems the photographs mentioned at the meeting are working. Last time I checked he has come a lot closer to finally knowing all the names of the thirty children he has shared a classroom with for the past six years, but still has a mental block about one of the two Teaching Assistants, although she has only been in his classroom since September. (I would imagine he still hasn't got the first clue who many other staff are, or whether they have related to him briefly in the past.)
In an ideal world this kind of basic support wouldn't eat into his academic day, but then in a really ideal world, he wouldn't need it. I just hope its written in to his provision for senior school because classes and teachers change so fast there that he won't have a clue.

from private vent blog #2

2005-12-15T08:44:00.000Z

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

2005-12-11T08:46:00.000Z

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

2005-12-09T08:27:00.000Z

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.....

2005-12-08T19:22:00.000Z

... 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

2005-12-08T11:23:00.000Z

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

2005-12-07T07:21:00.000Z

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

2005-12-02T07:18:00.000Z

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.

Being Cassandra

2005-11-30T07:15:00.000Z

Thank God for Astryngia and her miraculous way of digging up the sort of vital information that parents of Aspies need, yet seems purposely hidden in amongst un-parent-friendly gobbledygook, the jargon steeped secret language of the 'professionals'.

Looking at the way the SEN Code is simplified into basic leaflets so that teachers can understand it, each sheet with no more then five summarised points like a Powerpoint presentation, I wonder how even our educators are supposed to get hold of the latest findings.

Anyhoo, that's how I know that this all encompassing frustration, this urge to become squeaky and tearful in pained disbelief is called being Cassandra'd.

Son has a new teacher. She has spoken with him, come to agreements with him and generally set herself up to manage him properly. This is as much to do with her personal pride as anything, but her admirable determination to excel seems to exclude me. Close home-school communication doesn't fit into a career path where the emphasis is on single handedly saving the day. Admitting that there is anything to discuss or anything that a parent could add to the plans she already has in place is just not in her game plan. I found out today that I am being sidelined - that 'close home school communication' now means me getting 'told' (well after the fact) rather than being involved.

I have just had to challenge her assumptions, ask her bluntly whether she sees the points I raised in an email as an attack on her (excellent) school, or, as I intended, as concerns that Son's differences can disrupt the flow of even an excellent school, and cause him distress as much as anybody else. Its about the boy being too much for the system, not about the system being below par. There are such fine lines to tread.

Thank God this school actually has been excellent for a good few years since he was diagnosed; that he wasn't written off. Thank God I have experienced being treated as part of a team who all want the same thing, because the sensation of shrinking in height was tangible, the dark pit of chaos and fear. The old, pre-diagnosis feeling of being treated like some sort of weirdo pushy mother who should be dismissed condescendingly as an annoyance and disruption. It flooded back in a split second and threatened to overwhelm me.

Catch 22 is if you let them see your total frustration, become squeaky or red faced or apologetic or even angry, if you become a gibbering wreck in response to their cold blindness, you only underline their original conclusion.

I have Parentlink on my side. Well, correct that, on my child's side, but part of that support for him requires that his mother is treated with due respect and not reduced to a quivering wreck of no use to anybody. Parentlink is the name for our local LEA Parent Partnership Service, and every LEA has one. Bloody invaluable.

Teachernet says:

Working in partnership with parents is a very important aspect of the Code of Practice. A strong partnership is required between the school and the parents/carer. Every effort should be made to encourage parents to work with the school and other professionals, to ensure that their child's needs are met as early as possible. In order for them to play an active part, you should provide relevant information so that they can reinforce learning in the home. With the SENCO and your support, parents should be able to:

recognise and fulfil their responsibilities as parents and play an active and valued role in their child's education;
(more stuff about understanding the forms and procedures)

For Astryngia's benefit (I'm sure she's seen it) the page on gifted and talented pupils says:

Teachers should aim to make learning challenging and enjoyable, so that all pupils, including the gifted and talented, achieve their full potential. Gifted and talented pupils need to be given opportunities to study some, or all, subjects to a greater depth and breadth and, sometimes, at a faster pace. However, it is important to bear in mind that, whether gifted or talented, a pupil is first and foremost a child who will need encouragement and support in order to develop as a whole person. This support is crucial where there are marked discrepancies between a child's gifts or talents and their emotional, physical or social development, or where there are specific learning difficulties.

There are hoops to jump through, procedures to follow. Never mind if you can see your goal two steps away; as a parent of a school age child, you are part of a team. If it involves holding hands with all these professionals, telling them they are all wonderful and expert and invaluable and life savers (sometimes its true) and skipping in circles singing Here We Go Round The Mulberry Bush all at the same time, then watch me. Its slow, its frustrating and it makes me want to cry sometimes but at least its a way forward.

Aspie - Normal Translation

2005-11-24T08:11:00.000Z

Maybe that should be the other way round.

I don't think I have Aspergers Syndrome.

I DO have less than perfect social skills and prefer a structured environment. Not in my house - it's a tip - but in my head and my dealings with others. I am capable of extreme creativity, of opening up my feelings and the like, but I need to feel complete and absolute control over the situation to allow that. I love people and crowds and multiple input and constant feedback and validation, and yet hermitage suits me too.

I am one of those weirdos who respects, for example, Simon Cowell. Yes he is rude and blunt but his focus never wavers. He is completely convinced that the whole focus of the competitors in X factor is to learn and improve. So many times he and Sharon Osborne effectively say exactly the same thing to a performer, but she will pad hers out with words about 'liking them' and 'appreciating their hard work'. Simon just can't see the point of that. When he speaks, how far you have come is irrelevant compared to how far you have to go. Absolute, blunt honesty. Structure. Predictability (in as far as his mood or the performer's emotional state will never change his focus.)

Call me nuts but I get a sense of safety from that. The guy might be incredibly insulting, but he doesn't lie. Is he Aspie? I'd lay money on it if I had any.

That's the crux. I feel safest in a bullshit free zone, where there are no undertones to a communication, no layers of consideration beyond the point that is 'officially' at hand. In face to face communication I too often forget that others have multiple agendas; to be blunt, I forget that they are not up to speed; that other factors get in the way for them.

Am I an Aspie? Computer says no. (Joke - Little Britain again - click on picture for soundbite mp3)

Where's the cut off line where someone does or does not have that condition, anyway? I could probably reach out and touch it from my place on the sliding scale.

Still, through a site called About.com I found an excellent forum for Aspies at WrongPlanet.net.

I've been reading the forum thread about fitting in to a school (which one member rightly pointed out should be about fitting in at a school, because otherwise it means managing to get your whole body to fit inside, like Alice at the White Rabbit's cottage.)

I so wish I could join. I so want to be seen as one of the family, part of the team, able to converse. I want to be accepted by these people.

Why? I produce Aspergers children. My daughters escape diagnosis, my sons do not, but they have male-female equivalent brains. The multiple channels between left and right hemisphere in the female brain mean that I and my girls can hide amongst the ~~weirdos~~ normals with more success. We never quite feel like part of the gang and end up as leaders or outcasts (although an outcast who neither cares nor notices becomes a leader very quickly - security is magnetic.) However we are not so blatantly unfitted to the sausage factory process that is our low budget, 'cram 'em in and push 'em out all looking the same' education system.

This is my gift. Sitting as I do, so close to the borderline, I am bilingual. I get, and overuse, analogy, a 'normal' skill. I understand a lot of what the normals are saying, if they don't put too many layers into it. I am crap at office politics, at sniping and one-upmanship. However, I speak fluent Aspie.

Things that Aspies don't really 'get':

dishonesty,
shallow or changeable opinion,
mood swings,
fuzzy word choices (body language and intonation do not factor so the precise words chosen are crucial.)

I guess most of all I want to plough into that forum and play translator. I want so much to convince these people that they should be proud, not browbeaten, that others attacked them. That the fear and isolation they feel faced with a bunch of 'normal' (bullying, sly, manipulative, changeable) kids is what each of those so called normals actively works to avoid feeling by trying frantically to establish themselves as 'better' (a.k.a. more homogeneously interchangeable with the pack) than someone else; that every time even an adult belittles someone else it is not about attack but about defence.

Aggression is born of fear. Fear is born of insecurity. The Aspies so need to wake up and realise that they are not subnormals trying to live up to normal expectations, but lions trying to live like mice. The mice are only in charge because there are more of them, but we need to help both species to learn that lions exist. Not always better, not always worse, but different.

Its ok to be a geek, its a special gift to be able to switch from hearing and sensing more than others can take in, to focusing so completely on a task that nothing else gets in the way. Why doesn't our society value our geeks? Why does what they can't do so well cloud our vision of what they can do better, instead?

OK so I have two goals. Motivation and translation. Its not enough that the Aspies find each other, or those with a high enough IQ to appreciate them. I want to tip them off to the basic workings of the less focused mind - how to walk through the world of mice without either squashing things with their big lion paws, nor stopping to take offence or feel hurt when some mice start belittling them for not being small and squeaky.

I want to be a bridge and a validator. I want to be their mum.

Still Here

2005-11-22T19:13:00.000Z

Still smoking. Like the magic porridge pot my 50 gramme pouch of baccy still has dry stuff in the bottom and so I'm just keeping on keeping on. I'm starting to think about drinking lots of water, but not until I've got the kids to school. A couple of pints from the cold tap probably isn't too wise until I'm back indoors in the warm.

Are my UK friends all stocked up and prepared to spend next week at least, stuck indoors? Haha, we're not. A month ago the news was all about the worst winter for a decade (remember 1996?), now some helpful souls are mumbling about the worst since records began in the 1800s.

Anyway - got a claim form to fill, then an appeal to write up re son's schooling next year, then a letter needs sending to the County so they can dish his special needs Note in Lieu out to all and sundry, then a meeting to organise, a website to look at rebuilding and I'm half way through an online dreamweaver course with the HTML one standing ready, so I'm not around much, this week.

I console myself that most of my American friends will also be around less and less with the work of Thanksgiving to do, so its perfect timing, if it has to happen.

I may go down my Da Silva downloads - they have a real nutzoid way of looking at life - the ones I found try to draw punters in not with the prospect of changing their own attitude, but with the prospect of using some sort of mind control over circumstances and other people, so the lower level chat rooms are full of people claiming to have 'imagined' X into liking them, or Y into giving them money.

I didn't hang around to see if the attitude gets readjusted at the upper levels, but their very early audio files for getting into a relaxed state are fantastic and they have a built in safety switch (from my perspective) at the point that they start suggesting we can reach other planets with our minds. Then the back of my own mind sticks its tongue out and starts chanting 'Cuckoo, cuckoo!' Instant wake up call.*

I don't care. The earliest tapes are just about getting you so relaxed that they can plant these silly suggestions in the first place. Although my mind won't have them, its still very restful up until then.

So, stress levels first (in a manner that doesnt involve sleeping for a week) followed by lots and lots and lots of paperwork - unfortunate as I generally smoke more at my own keyboard, so probably followed or interrupted by more work on the stress. Oh, and someone's bringing the kids home for me today and will expect a cup of tea, so I have an hour with bin bags and laundry and bleach to squeeze in there somewhere before three. Jolly fun.

Yup, this week, unashamedly, it's all about me. I'm trying to be strong and resist the urge to play comment fairy when I should be sorting my life out. Sorry.

Have you noticed, all the best people seem to be in their only little bubble of WTF at the moment? Deja Vu - we all had this back at the eclipses. Then it was about changing outlook, now it seems to be about facing the mess. Its nice when theres a cosmic pattern, when you can see the rest of the class scowling over their own exam papers too.

Advice for the day: Try and smile. If nothing else, it scares people. :-)

*If that offends anyone, then sorry, tough. I have enough rubbish in my head without letting other people poke their own faiths and beliefs in there while I'm not looking. I prefer to establish personal conjecture only when I'm wide awake, thank you very much.

Oh Bugger. Add one more to the list - finish the T-shirt shop. This to happen as soon as possible, which will be when I'm far enough into my study courses to be happy with my artwork, which means after all the school related stuff, but still.

Tut, tut, tut.

Email #17

2005-11-22T11:21:00.000Z

Dear Mrs Baggage
Thank you for your e-mail; I will discuss the particular concerns you have raised with my line manager. I have asked Lewis's school to let me know the time and date of the meeting to discuss the Note in Lieu and provision for Lewis, as I will endeavour to attend this. In the meantime I will ensure that the Note in Lieu and accompanying advices are circulated to all those who provided advice, and to Parentlink.

Mrs New-caseworker

Email #16

2005-11-22T11:17:00.000Z

Dear Mrs New-caseworker

Thank you for the assessment papers and Note In Lieu for my son, dated 16 November and received on Friday 18 November 2005.

Please accept this email as my permission/approval for the new Note In Lieu and related reports to be issued to all interested parties, as soon as possible.

I do have some very worrying concerns, such as the quantity of advice/guidance given on the previous Note In Lieu which is missing from this new one, with no apparent reason shown.

I am also concerned that my son's personal opinion that he is improving is being given any weight at all - he is anxious to 'improve' and to fit in, and his response to such a question would depend on who asked and what day of the week it was. Aspergers syndrome, as part of the autistic spectrum of disorders is a lifelong condition that cannot in itself 'improve'; only the way in which it is managed can be improved and success should not be taken as an indicator that the management could safely be reduced.

As we previously discussed, I know the (small) school to have been taking measures well beyond SEN+ to see him achieve any progress in his education, unmarred (or marred to the least possible degree, given resources) by distractibility or overfocussing or confusion and distress and defensive violence.

I am already disconcerted that this 'management' involves timing his reward periods and time outs to coincide with lessons where his difficulties would be most obvious - for example for the second year running he is to help with the technical side of the Xmas production in some way, mostly because he can learn the songs etc in class but cannot cope with sitting still in normal assembly hall lines. Without even more support than he currently receives they have opted to spare him from the bustle and confusion and distress of that situation (in a school with only 200 or so pupils), although this means that the curriculum is already being adjusted around him and costing him eventually vital practice at managing himself in crowds or tight spaces.

I am extremely upset at the suggestion (in the new Note In Lieu) that the curriculum should be adjusted for him, as there is no clear explanation of what this means. The idea of him attending mainstream school is for him to have full access to the curriculum, with whatever support he needs to access that.

I feel that similarly nothing has been put in place to prepare for the increased frequency and volume of stress triggers in a larger, senior school environment, nor to prepare for the likelihood of OCD or depression presenting themselves at onset of puberty, although both were listed as highly likely by the expert who diagnosed his syndrome - apparently the conditions too frequently go hand in hand.

Sincerely

Cheryl

Speechless

2005-11-10T07:11:00.000Z

Son, some will know, broke his arm and is in plaster.

Others will know that he has Aspergers and is ten years old.

Why, when I know all these things, does it surprise me that he would wait until his father is away from home, to drop a penny down inside the plaster cast like its some sort of flaming slot machine? That he would veer between thinking its funny and thinking its dangerous, claiming he has no memory of doing it and then insisting its a penny, and making it set off his junior metal detector like its a party trick?

He has asked me for my eyebrow tweezers or a screwdriver - he feels he could extract the offending metal if he just had something to prod down the gap.

I am running out of padlocks and high places - God help me.

At least he has a hospital appointment coming up on Monday. A penny against sweaty, enclosed skin can't stain him green or give him blood poisoning between now and then;

can it?

Sock Monster

2005-11-09T07:07:00.000Z

Like every family home, this house has a sock monster.

Son (age 10) seems to have suffered the most from it's shenanigans this year and for the past three or four weeks his sock collection has dwindled mercilessly.

You know what its like, if you save up family sized washloads - moreso when one style of item is in short supply - you end up counting how many go in the wash and doing a double check under beds and behind things to make sure you have as many (in this case socks) for the wash as possible.

You would expect my husband's socks to suffer the most - there are only two places were he removes socks from his feet, but these are at the sofa or beside the bed - he either comes home bewailing his hard day at work and slips socks and shoes off whilst angling for three quarters of the family sized sofa and control of the TV remote, or he waits until bedtime and the items end up under jeans, the newspaper crossword, a tea cup; you name it, as they begin their nocturnal migration to the darkest nether-regions of the world under the bed. In his mind the laundry basket is a bullseye - a target to aim bundles of stuff at on a weekend when I have that laundry-manic look in my eye.

Still, no, it's been Son who has managed to lose all but five or six odd socks out of the two bumper packs we bought for the start of school this autumn and whatever else survived the year as still wearable. I sent him to school in his Batman slipper socks once last week - that's about the only pair that always seems to turn up intact.

Husband doesn't believe in the sock monster. He believes in messy housekeeping (that would be me, then?), disorganised kids (that would be Son?), and a general curse on the home. He regularly berates Son for never keeping his bedroom tidy, never using the laundry basket, etc etc, whilst Son scowls and swears he isn't guilty. My darling other so quickly forgets that its normally his own stuff that disappears by magic, that his favourite grumble, especially on weekends and early mornings is "You can't put a bloody thing down for five bloody minutes in this bloody house."

Unfortunately, when he's late out the door for work and in a total flap, it never seems to be the right time to tell him that perhaps having a single place for some things, or not wandering round the house with his electric shaver every morning might be erm, better planning. Weekends I have learned to look him in the eye and say "Well lets tidy up together, then" although the phrase has to be used sparingly as it guarantees he will think of something we need from the shops, or else 'just' check his email for a couple of hours.

Husband has gone away on yet another training course. He left on Tuesday but took until Monday night to announce that he was out of decent socks etc, so I did a washload, and just before bed we sat on the sofa sorting enough pairs for his trip. He never sorts pairs otherwise, just chucks them all in his drawer and fumbles for two that match when he gets up. I noticed a couple of pairs of Son's socks had emerged with the load, so that was something. I left the lot on the sofa, meaning to finish the job in the morning.

Tuesday morning comes, and Husband leaves.

I turn to the pile of smalls waiting to be sorted and..... its not there.

The point of the story is this: that Son and I put two and two together and went and raided Husband's sock drawer. No pairs in there, as I said, so this involved tipping the whole contents out onto my bed.

Result? It was like child sock Christmas. Every missing sock was there at the back of the pile - at least five pairs of identical grey school socks and plenty more, even a couple in an olive green, a colour that Husband would never buy for himself.

No, their feet are nowhere near similar in size or any other way. No there is no way that Husband can actually say he looked at anything he threw in the drawer, except to briefly acknowledge that it was grey (or at least not pink or white,) and sock shaped.

So now I have a second reason to look forward to his return. Something to drop into the conversation on Friday, I think, just as a by-the-by. What fun.

The worst of it is that I can't get angry at him. When I watch this man with a Mensa level IQ look completely blank and bewildered; when the cogs move so slowly as he works to shift the blame that you can actually hear them grinding if you stand too close, then all I manage to do is marvel. Homer Simpson would be so proud.

Ouch

2005-11-03T07:04:00.000Z

Sorry I didn't read any blogs today - I wanted to, but at 12.15 I got a call from the school.

Son was on his school trip to a local fort, listening to a speaking display, when another, larger group from the same school came into the room and were milling around so that he couldn't hear it anymore. He turned to go back to his group leader and tripped over something (he's not sure what, but thinks it might have been a foot stuck out,) landed awkwardly against something else and broke his wrist; greenstick fracture with the bone squashed like a bent drinking straw and his hand forced into a claw.

They took him to hospital but I had to get myself there behind him, and detour to the school to pick up his little sister en route.

Triage, X-ray, Consultant 1, Consultant 2 (orthopod), temporary half plaster, up to the ward, ward admittance and all the same questions all over again plus some more; anaesthetic pads ready for the drip, anaesthetist's interview, and then they snuck him in to surgery at the end of the day, 7pm this evening.

Mercifully no wires, although I had to sign consent for them, just in case.

Plaster for five weeks - through his Birthday, through the school play where he's doing the lights - he should get his arm back just in time for Christmas.

At 9pm I had to leave him at the hospital, because whilst he'd stopped demanding we go home (because he's nearly eleven, for heaven's sake) and was beginning to think he really rather wanted me there, he didn't want his little sister, who was in tears of jealousy because the day had exhausted her and she was surrounded by people with comfy beds. Husband was still on his way home from a two day training course and unreachable - I wasn't even sure if he had his doorkeys.

Poor Son had his fall just before lunchtime and had eaten nothing since breakfast at 8am. School wouldnt let him eat or drink anything from his packed lunch 'in case'. He remained so sanguine and matter of fact about his injury that one or two people questioned the diagnosis. He left theatre and the recovery ward with a bravery award certificate from each, yet when his sister started blubbing about her urgent need for her bed, a single tear formed in the corner of his eye, as he told her that now she knew how he felt, watching the rest of the ward have their dinner time before he went down. He was starving.

All that trauma, and, typical male, it was his stomach that broke the dam in the end. Having been the perfect patient all day, he fussed until they brought him drinking water, swigged down a whole glass (even though he was still too woozy to sit himself up, and even though they had warned him to sip) then declared that as proof he was well enough to eat. He consumed the packet of cheesy curlz from his lunchbox in record time for a kid with plaster round one hand and a needle in the other (I had to rip the bag right open for him and lay it on his chest), and was bewailing the ban on his chocolate bar and the loss of his 10-hour old ham sandwiches when I had to leave.

I have just phoned the hospital and discovered that yes, he kept up the requests until they gave him toast. No, against the expectations of the ward sister he had managed not to be sick, and he is now, finally, asleep.

I should be there, but my biggest worry now is how to get back there to get him home again. I have just spent over £40 in taxis and feeding his sister from vending machines, oh and two comics to make the six hour wait a little more bearable for them both. The first taxi trip, obviously, was due to emergency, the second due to the fact that coming home by bus with a tearful, exhausted little girl in tow would take something like three hours with a change in the middle and a walk at the end even if the buses were even still running - they stop at 9.

Thats a good week's shopping money gone and I'm going to have to dip into the Council Tax money to get Son home tomorrow.

Don't ask me whether it's faith in God, or plain shock, that finds me unable to work up the panic that the financial situation deserves, because I really couldn't tell you, but if I'm offline for a couple of days, I'll be fussing round my boy, or diving down his wardrobe trying to find clothes that'll go on over the plaster. At this point I don't even know if his school polo shirt will come off over it.

He still thinks he's going to collect his sister from school tomorrow to prove he's alive, and then go to his bigger sister's house for the weekend, for the fireworks. One step at a time.

Have fun.

Be right back..............

Insert Title Here. I'm Clueless.

2005-11-02T07:02:00.000Z

I was determined not to write about family, to think of something witty, but the well is dry. Has anyone else noticed that for the last two days every simple little task or idea has been hampered in a million tiny but annoying ways? Or is it just me?

On the upside, the kids seem unaffected.

Girl has been told about the Chinese myth that dragons swallow up the sun in an eclipse. She has decided the eclipse is recent enough for the dragons to still be around, and this makes the walk home from school a long one, full of oohs and coos at cloud formations. Apparently the shadows on her bedroom ceiling look like the Queen of Hearts holding an umbrella (the umbrella is the lightshade). I don't know where I got such a creative kid from; she must be an aberration or a throwback. She's happy, whatever, which given our household is quite a feat.

Son (the Aspergers sufferer) has been sidetracked from appearing in the Christmas show yet again. This suits him just fine and the teachers even better, because although he loves singing, the two attendant requirements - sitting still for long periods of time and performing in front of people, are just not his cup of tea and cause him tremendous stress. Son's stress tends to be contagious. This year he is to help one of the male teachers with the lighting. I wonder if they are beginning to realise just what they've done.

Its lovely to see him so totally enthused (or, if you look at it another way, obsessing about something to do with the real world for a change) but they had to advise him of this special duty at the same time as rehearsals for the show began, so that he knew why he was excused/excluded from the practice. Now he keeps wanting to nip over to see the teacher he will be helping. Seeing himself as a work colleague, he constantly wants to brain-storm and make sure he is up to speed with developments. There is nothing to develop until the show has been finalised and lighting options can be discussed, but he goes anyway, just in case.

He keeps mentioning to me, with some awe, that there are others as good at electrics as he is, and then he alternately decides this either means he is the luckiest kid in the whole school, or that he must have a spark of genius that sets him aside from the rest and that the teachers have spotted something truly special in him. I watch his head and heart swell successively and find myself perched like a hawk in case the superiority theory takes hold and I have to advise him that its probably because the other budding electricians know how to sit still. Its been a long time since I've seen him feel this special.

The other day I was late leaving the school because Son ran over to have another quick word with the long suffering teacher whose idea this was. The teacher asked him whether he had told me about his maths tests. "Oh no, I forgot" says Son.

He apparently did two tests and got 100% in one and 98% in the other. The school is delighted. Son's reaction? "Oh hey, yeah, well, its cos I know it, thats all, but doing the lights,...wow! It means maybe the Headmaster will thank me after all four shows, because he always thanks the lighting man and the piano player and I might get my name said out, and....."

Daughter's reaction? "Yes but look at that cloud - its a man eating a baby elephant! And it's my turn to talk."

I have an aspie kid and a 'normal'. One doesn't know how to share nor how to shut up. The walk to and from school is therefore divided into talking turns, with a no-mans land where we cross the big road and they both have to shut up. One day he'll get the hang of it. Probably.

My own reaction, and probably the reason I couldn't think to do a blog post yesterday, was something along the lines of "That's nice dears, hic durr blurble, I'm a little teapot." I do find mental vacancy so therapeutic, sometimes.

Sons, Husbands And Others

2005-10-23T07:01:00.000Z

Well one particular one of each, anyway; two mine, one not.

Son, 10, has joined a forum for gamers. This is brilliant. For the first time I see him rush home from school and beg to check his email. Then I sit patiently through 'how do you spell....?' over and over. He wants to write. He wants to spell. He has a passion.

Yay hurray!

Even his school is so impressed that in his reward time before lunch and just at the end of the day, he is allowed to post to this forum of his. Its clean, well managed and it inspires him, and thats all any of us want. Even his bad spelling fits right in, there seem to be plenty of (presumably) older boys in the same boat.

Such is his enthusiasm that another lad in his year, another of the generally less enthused pupils, has also joined and spends his reward time posting to the threads. Herein lies catch 22.

When they both post from school, they post from the same ISP. Today he got a sharp warning from the forum moderators. He stands accused of opening multiple accounts and multiposting, because (very fairly) they figure that the same ISP means its the same person. They have penalised him (taken posting points off him) and a warning is a big step towards being banned. He is gutted.

For the first time ever (because as you know mums, what-mums-say and what-mums-think are mortally embarrassing) he has let me take over the keyboard and send a reply, using his account name, in an effort to clear this up. Sadly it is now the half term holiday, so I can't get school to back me up or confirm their ISP for another week.

Fingers crossed.

Am I An Over Fussy Mother?

2005-09-30T06:57:00.000Z

My ten year old son is tickled pink - he has found a game on the internet that has him chuckling away out loud.

His favourite 'buddies' for this game (as you can 'buy' new buddies without using real money) are George Bush and a large purple Teletubby. Somehow he has opened a whole lot more options for projectiles - grenades, babies etc.

HERE

So, is he displaying alarmingly evil tendencies, or completely normal ones (as far as any horrible ten year old boy can be said to have normal anything)?

Should I be ignoring it until he's bored, or having an apoplectic fit?

Would love to know.

Eating Crow and Carpet, in Humble Pie Hat

2005-09-26T06:55:00.000Z

Went to see 'the teacher'.
Explained that if Son doesn't get his statement of special educational needs he will sink without trace as soon as he hits senior school.
She agreed completely.

Expressed fear that the Education Authority would ask for proof that more help was needed than previously recommended, and that said teacher would indicate that none was used, nor needed.
Got corrected. He has his own desk, facing the wall as he likes it, and is kept company by a teaching assistant to keep him on track - all the stuff that costs extra money and that we want formalised so he can access the curriculum. The only things missing were his headphones - used in the past as earplugs, to deaden the noise of the classroom.

Explained this fear was partly based on Son insisting his homework had to be handwritten. It turns out that lots of children do their homework on the computer and are allowed to, as is he. The teacher's comment in his homework book was also based, she says, on knowledge of even tidier work he had recently done at school.

This, I guess, is why his note in lieu stipulates close home-school communication, because if news travels via Son it can be heavily filtered.

After all that fear - back on the same songsheet now. I'm still not sure that one of us isn't singing sharp, or flat; but we seem to be looking at the same piece of paper.

Maybe I need to take up meditation. Or possibly medication, hmm.

P.S. Ref BigSon post, below - if you look you can see his broken nose and broken, 'lopsided' shoulder. You can't see all the fisherman's scars up his forarms where spiked fish or crab have expressed their annoyance. He's 21. One day I'll scan one of his younger photos, from when he still looked like a cross between a choirboy and a member of the Royal Family / Christopher Robin.

At A Loss With School Again

2005-09-25T06:46:00.000Z

Last year we tried to get Son statemented for Special Needs. His hand-eye coordination is appalling, he has Aspergers and dyslexic tendencies. Nobody has 'dyslexia' any more, officially, just tendencies.

At ten years old he still has to ask me how to spell simple words and his writing is near illegible.

His last year at school saw quite a few breakthroughs - thanks to the encouragement of that teacher and some excellent teaching assistants, he did consider an academic future. She let him display his powerpoint presentations to the class, and even sent him round other classes to share them there too. He picked up on lecturer-speak, 'I have prepared', 'you will see'; all that, and decided he wanted to be a teacher. It was enough to make me cry.

This year, as I think I already said, his plans progressed and he decided to do all his homework (for a complete change). It became a pet project of his to see every piece done and returned.

Last week he did a book review ahead of the homework being set, because he heard the teacher mention it. It was rejected. When the homework was set he had to do 100 words, hand written, this in spite of the fact that up to now school has allowed him to use the computer; allowed him to use amenuensis (dictation) and by that method write a whole lot more, and has done everything barring the Education Authority's official recommendation on his Note In Lieu (the thing you get if you fail to get a Special Ed Statement) that he be given a tape recorder to do his work orally.

Fired up as he was; determined to do all his work as he was, he ignored the headmaster's concession that he could simply do the review on the computer. He composed it in Word, just to get the spellings, then printed it off, sat down and reproduced it in his homework book by hand. Effectively he did the whole exercise twice, to conform to the letter of the assignment, with the writing out taking forever as he slowly struggled to copy digit by digit, keep them roughly of a similar size to each other and watch his spacing. I was really proud - I have never seen his work, albeit still a spider scrawl that goes up and down and all over; looking so neat.

I got his homework book back on Friday, ready for more work. The teacher's comment was:

"You make some really good points, but please keep your writing clear."

He is now looking at a very simple piece of work for this weekend and in the light of that comment, muttering that he can't really be bothered.

I don't think I can be very rational if I go to see her - I will either lose it, or go all squeaky and weak and sycophantic under the influence of adrenalin overload. I think I am going to steal his book and go see the SENCo (Special Educational Needs Coordinator) and ask her if she can point out little things like his Note in Lieu, his IEP (individual education plan), any disparities between them, and the comments of other teachers in his current statementing application. You know, stuff any teacher who gave a rats fart about the job would have read before she started.

If this woman screws up his chance at getting the help he needs by pushing the idea that he doesn't need any of what was stipulated by anybody else, I think I will let her know just what I think of her in front of her class - and I really don't want to be barred as an aggressive parent.

Anybody reading, who knows how I can handle this through the English system with some measure of diplomacy and without leaving the woman feeling cornered or resentful (but still in charge of my son) - HELP!!!

Speechless

2005-09-20T06:38:00.000Z

This year, for some unfathomable reason, my ten year old's sense of achievement has been stirred. He suddenly wants to produce schoolwork, including extra curricular, unrequested extravaganzas of self-initiated work that mirrors the class topics.

Good work gets shown to the class - paperwork goes up on the walls and PPSs get shown on the wall screen, including stuff you did at home.

The kid who used to look at a four-question homework sheet like it had the plague, suddenly spent four hours researching World War 2 and making up a seven page Powerpoint presentation, complete with flying bullet points and moving graphics.

An hour of that time was spent on the phone to his Gran, and both left the conversation with a sensation of being special. They bonded.

In fact, most of his presentation was to do with the little things she told him - born in 1930, my mother was ten when we went to war and fifteen when it all came to an end.

She told him (and he quoted) that:

Some children were evacuated, and some of those were used as unpaid slave labour on the farms when they arrived - treated as good only to replace the farm hands that had gone to war
Some children (like her) stayed in London with their families ("If we go we'll all go together") and that for them there was a kind of club you joined to collect newspaper and shrapnel for the war effort. You started out as a Private in this official club and went up the ranks according to how much you had collected. It meant she tailed the ARPs etc, waiting for a bombed house to be declared safe, to clamber in and get the shrapnel - her and a whole bunch of kids, who would compare finds to see who had got the biggest bit. It put some fun and purpose into facing blown up houses.
She ended up as a Field Marshall.
There were queues everywhere. If you saw a queue you joined it, no questions asked, because it meant there was something worth having at the other end.
Because every scrap of good meat was for the human rations, the pet shops would stock horse and whale meat, for the pets. There were a lot of imaginary dogs where she lived, people 'created' animals, so they could bump their diet up with a bit of horse. The pet shop always had a long queue.

(No I am not going to make some scathing comment about the reports that some New Orleans residents have disdained fresh food and water because it wasn't burgers and Coke.)

He took this in to school on Friday morning, on his own memory chip, having first done a grand presentation to us at home, so I know exactly what ended up on the finished piece. He even removed the point that dressmakers would ask the butchers for the net that the meat arrived in, as it could be bleached and was the only material around for making a wedding dress (unless you got your hands on a rare parachute silk - although those had their own black market for making women's underwear.) He thought that was gross, too yucky to use.

His teacher didn't have time to look at it that day and ended up keeping his chip for the whole weekend. Then she was in and out of class yesterday and he finally got it back today. Since he completed his mini project on Thursday night, he has waited five days to see whether he would be allowed to share his effort with the class. So much tension and excitement, and hope.

No. Apparently his teacher said it was unsuitable for two reasons:

Too many exclamation marks.
Some of it wasn't true.

He asked her which bits weren't true, but she said she couldn't remember.

Post Script due to comments:

Lewis is Aspergers and dyslexic, with a bad case of the "I can't so I won't" and trouble reading faces and inferred intent. He has a 'Note In Lieu' at school and does a lot of work on the computer there because his handwriting is so appalling. Last year they 'discovered' his brain when a teaching assistant regularly took dictation for him.
Up to now he has been encouraged with House Points for good behaviour and teachers are free to award them in extra amounts to kids who struggle.
He has NEVER recorded them or paid them any attention because you mark your own points on the board at break time or the end of the day and too many times he has amassed enough for teachers to wipe them back off the board, calling him a liar - so he just doesnt play.
This year, if he does every single piece of homework, he feels that he will be presented with £5 cash, in assembly, by the headmaster.
I didn't think this would inspire him but it has, I guess because homework sheets are tangible and can't be called imaginary - not that he has EVER done a single piece of homework outside of school hours.
He has also started trying, like this instance, to put in even more hours.
Perhaps she was stopping him from getting ego issues with it, from becoming obsessively carried away, but I really do have to go in and see, don't I, I can't let it lie.

Forget the pegs, we hit the bottom of the barrel

2005-08-30T06:36:00.000Z

Further to Lewis' latest jabs at my personal appearance, it would appear that he noticed they had an effect, because he has now reached new heights/scraped new lows in this little battle of wits. I do wish he didn't have such an excellent poker face.

Have you seen the Thunderbirds movie? Remember Rose Keegan playing Transom? That otherwise thoroughly beautiful woman whose 'I'm a baddy' prop was a really dodgy set of teeth?

Well if anyone can find me a shot of her, in that role, displaying those gnashers, I would be grateful. It just seems that, barring a short film clip, there are no fixed shots of that to be had - anywhere. Her promo shot is tight lipped, as is her photo on her artist profile (which is sad really, she could probably do with showing her real features) and where she has not been mysteriously dropped from the cast list altogether, she appears at best, with back-of-the-head shots. Its wrong.

Anyhoo, her character's teeth are something like a cross between these and these (sorry, blogger picture upload is on the fritz, will edit when it works again) - framed startlingly by proper, full, bee-sting lips of the starlet variety. The lips, I know, are her own. The movie was on TV last night.

Lewis: Ooh look mum, she's got teeth like yours!
Me, scowling: Do WHAT?
Lewis: Oh no, well, don't mind, I mean they are just as big as yours, but she cant get round them; your face fits yours.
Me: Pardon? As Big?
Lewis: Well maybe as big as yours, but she's smaller, so she doesn't fit.

I have an overbite, and have developed a slim version of the gap you can see on, ooh, Jilly Cooper or Madonna. Yup, thats it, I pretty much have Madonna teeth. Nonetheless, when my first husband bitched about everything, I did once, young and insecure, admit I could put them in a brace. I was about to shut him up with a few observations of my own, when his reply, out loud in a pub (and to the raucous laughter of his equally charming brother) was "Put 'em in a brace? You could put 'em in the back of a lorry!" What a wanker.

So you'll pardon me and understand if my youngest son's latest jibe has left me grumpy, bad tempered and with a desire to learn ventriloquism/chew on a brick.

No, forget the brick thing. The NHS the way it is these days, I'd end up with more gaps or metal caps.

That boy is gonna pay, this one is going down on the maternal list of insults that come out as 'funny stories' along with the nude baby photos, the very second he is old enough to bring a girlfriend home. Just you wait, kiddo.

Down A Peg Or Two

2005-08-28T06:32:00.000Z

Apologies to those rare few who recall my novice posts and have already heard me compare myself to a fisherman's friend - not the cough sweets, the craggy old man sketched on the packet.

It is sadly true that, although of almost pure Welsh descent, I have London skin and hair - it looks best with a layer of pollution. Since we moved to the coast just under a decade ago, my hair has resolutely determined to look like the stuffing from a horsehair sofa, barring copious amounts of gloop which will settle it for half a day at best.

Add to this that my silver hairs (not grey, I bypassed grey and went straight to the colour of angels wings) start out as curly as pubes. The fringe, which, for fifteen years was my one patch of silver, is now sleek and glossy. Everywhere else, however, my dry but wavy hair is bolstered into bizarre shapes by an erratic, underlying corset of pube-like coilsprings. Some arrange themselves on the top and I look like one of those Barbie dolls that got lost at the bottom of the toy box. Dry and whispy bits are not supposed to stick out at funny angles even when you've just combed them, but tough luck on me.

So I am growing it. I refuse to resort to old lady bouffant a la Thatcher, and anyway, long hair usually weighs itself into submission, which is just what I am hoping for.

Lewis often tells me I embarrass him. Thats his prerogative, just as its mine to do the best 'embarrassing mother' routine that I can possibly muster. Today, however, he reached new heights in this war of wide eyed sarcasm.

We were discussing having his friend Haydn back round to play one more time before school restarts. (In England, Autumn term doesnt begin until the first week of September; probably because we don't do Thanksgiving.) It went on, as follows:

~~~~~~~~

Lewis: Well, okay, he can come round here, but, just don't be so friendly, you scare him.

Me: Lewis, be serious, did Haydn say I scare him? How?

Lewis: Well no, you just creeped him out a bit.

Me: ???

Lewis: He just thought you smiled too much and kept offering him things and talking to us and werent being like a proper mum.

Me: Oh, oh well okay, I'll leave you two more to it, next time. That ok?

Lewis: Well, its okay, its just that hair, and when you look all bushy and you keep smiling, it IS a bit creepy.

Me: Go on..................

Lewis: Yes and the way you're so friendly to everybody and keep saying hello to people and you look a bit mad with that hair and then you smile and say 'Hello Stranger!' ALL THE TIME, and you're just really embarrassing and why cant you be like normal mums and not smile and not talk first?

~~~~~~~~

I tidied my hair, pumped it full of conditioner, got it almost glossy and tucked it behind one ear, but no. I am, he says, too old for young woman hairdos. He looked horrified.

Poor Lewis, it seems a'proper mum' to him is one who doesn't know all the kids in his class, can't talk at their level and wouldnt want to, wears tidy, boring hair, and never smiles. He's got six more years at the very minimum under my roof, I hope he has a longsuffering nature!

(And no, I am not going to tell him the 'mad woman hair' comment got to me, but I am wondering how I would look bald, with maybe a few scalp tattoos.)

Two Milestones And A Memory

2005-08-28T06:29:00.000Z

Two milestones slipped past this week, and I have only just realised.

Milestone 1

Lewis, aged ten, having finally allowed desire for sweets to overrule his fear of crossing roads alone, has made it to the local sweetshop not once, but four times in the past two or three days. The Aspergers kid who would sooner sit in front of his computer, the one who had no interest in anything at all unless it either:

A) involved soldiers, or
B) could be downloaded to his personal memory stick

has now got a feeling for independance that involves being outdoors. This is HUGE news. Right now I am sitting here on a lovely sunny day, with the front door wide open, because Lewis has taken Imogen down to the sweet shop. They've gone on their scooters, and for the first time in ten years I am a hands-free parent.

My first reaction, after breathing out and feeling strangely refreshed, was to try and count back - ten years since Lewis was born, but also as he is around a decade younger than his brother, I had a new baby to worry about last time we got to this point. In fact the last time I had no-one else to be alert for was twenty two years ago before my eldest, Alex, was born.

Admit it, thats one hell of a milestone, for me too; off the hook for ten minutes after 22 years.

Milestone 2

The second one was Imogen, a week after turning nine years old, went out with her big sister yesterday to go shopping for her late presents. Alex knew Imi wanted the Bratz foldaway scooter (I hate Bratz, but the scooter is cool - no sign of over made up pouty tart faces on it or anything like that), so instead of buying it for her, gave her £50. The deal was that she had to spend it all on proper stuff, that day, so it wouldnt go home and disappear in drips and drabs.

My child came back with scooter, 'real jewellery' (a watch, purse and pendant set from Argos), fluffy topped pens and a lilac desk organiser, and a battery operated potter's wheel; all her own choice. Just like Lewis she has visibly been through a transition. She knows she is older, her confidence has rocketed and its a strange thing to look upon.

Memory

Lewis has only Aspergers - boring genius professor syndrome. His older brother, Andrew, also has ADHD and the big memory was how, even when Andrew was fourteen, I would have my heart in my mouth allowing him out of the front door. He would keep talking to you, peel a satsuma and cross a main road backwards, all at once. I remember getting him a youth social worker after he was excluded from seniors. One day the guy stood on my doorstep telling me Andrew really only needed more choices, that I should allow him options and practice at being responsible. Meanwhile, Andrew, bored of waiting for their day out, had nipped into the garage. All six foot of him was right behind the social worker, balancing a solid metal rake (heavy end up) on his nose, like some circus act, with both him and it swirling round at balletic but dangerously acute angles as he tried to keep the act going whilst the rake tried to succumb to gravity.

To begin, this guy was insulted and disconcerted by the way I kept glancing behind him, fear written across my face, but deciding it was simply proof of my psychotically overprotective tendencies, he ignored me and kept talking, stressing his point harder. Once he did finally look round (after I nearly grabbed him to get him out of the way) he never suggested it was my fault again.

Isn't it lovely when you wake up to realise that humiliations which were a normal part of your life have not continued, but are now safe, sanitised and repackaged as 'the past'.

I've worked out what my problem is

2005-08-20T06:05:00.000Z

...well, the latest one, anyway.

I have a long list of things going on that the back of my head is telling me ought to make me really, really worried or angry or guilty - you know, things that really should give me that sick sensation like walking to school for a public dressing down because I got an extension on my homework project and still didn't do it.

I OUGHT to be wailing, whimpering, gnashing my teeth and possibly resorting to eyelash fluttering or fainting spells. Puke.
I just can't be bothered.

Do you get that? Its like watching life happen on a big TV screen.

The question now is whether I am either dangerously disassociated, or floating in a little calm puddle of faith and trust in God. Interesting conflict of opinion, that, and its all going on in my head, like two Einsteins across a table. I tell ya, theres chalk everywhere.

No its not schizophrenia - possibly split personalities, because it seems that my two lines of thought are battling it out between themselves and my own front brain is disassociated even from that, the conscious me just getting on with getting on. Oh, and they don't get let out to play in the real world, so I guess that means they are safely metaphorical.

Can you imagine having split personalities, all of them called Einstein, all of them identical barring driving principles? That would be the final condemnation of an uncreative mind. No, if I ever lose it, there'll be a Lola, a Candy-Mae, a Cruella, a mousey librarian and all the facets of my character that never get a day out. At least.

Hopefully Bulb won't stop by in his role of Psychiatric Nurse, because, to quote him, "psycho nursing involves telling psycho's they are weird and forcing medication down their throats." Nice.

What is weird, anyhow? Surely the most unstable and scary person imagineable must be one totally convinced that they are NOT weird - that they have all the answers, convinced they are the solitary professor in a worldwide loony bin.

We're all damaged and different - give me the people that know it.

The whole point of this post is/was to explain the last one. I am surprisingly, perhaps scarily okay. I really want to get stressed about finances and bad debt and potential for court cases and all that, I WANT to open a red and rude letter from company X and get aeriated and panicked, I just can't. The only thing that makes my shoulders sag under the weight is having to choose my words and play nursey to the men in this house.

Gary is the son of a policeman. His dad is a good man, not a dyed in the wool wife beater (although, surprise, the police force apparently has the highest proportion of them), but like the entire force, he spent his days taking flak from oiks and replying politely, taking any residual resentment and potential for ulcers home to the family. He was also threatened (again, as were they all) with demotion or, more subtly, lack of promotion, if his kids didn't lead exemplary lives. It doesn't look good trying to wear a uniform that says 'pillar of society' when the whole block know what your teenage son did last Wednesday.

Gary as eldest child had more than his fair share of dire warnings and strict admonishments, amounting to a very Victorian upbringing which, to be frank, is tiresome. 'We' don't have problems. In his little world, only 'he' has them. Its all about him and we are never ever a team where money is concerned, because he has this silly thing going on that the man should be able to provide for his family, that the entire burden is his preserve. He is the one that suffers from this lack of sharing - I could do with a hug, someone to share plans and methods to change things, for sure, but Gary could do with someone to share the guilt. It doesn't matter what I say, he wont see that in me, and goes off in a corner to mentally beat himself up.

I gave up feeling sympathetic years ago.

Then theres Lewis, the ten year old poster boy for Aspergers syndrome.

The last real clash Gary and I had was a couple of years ago when Gary would get up for work without me, and watch the world news while he ate breakfast, whether or not Lewis had followed him to the living room.

He would then wake me just before he left the house and I would fumble to the kitchen to be confronted by Lewis, fully awake and running on overdrive, with plans (that I simply HAD to hear in detail) to get the SAS to hide behind the fence at Saddam Hussein's house.

By the time we were nearly at school, and his little sister was dragging her heels behind us, unable to get a word in, the plan would have moved on to include giant lasers, or ways to establish British world domination without bloodshed, using equipment which Lewis would have to design and create because it didn't exist yet.

I have a picture on my wall that Lewis did at school during that time, entitled 'my dream house.' His dream house has:

guinea pigs
lizards
soft toy lizards
a cat
a swimming pool
a bouncy castle
perimeter laser guns with sensors.

And that, dear readers, is why I don't, perceptibly at least, indulge in worrying. Too many people do it too well already, it would be overkill.

What I do is simpler, I change things. Yes it means I'm like a puppet on a string, waiting for the worry to erupt into verbal acknowledgement, or for other people's attempts to change things to go belly up and make it worse, but like a Stepford Wife on valium, I step in smilingly and sort it all out, or if the damage is done, lead by inspirational example as we all learn to be cheerful with less.

Just know this, take away my cigarrettes and I'll probably kill you.

Hic

durr

dribble.........................

Note: Humungous thanks to Allposters for turning a blind eye to me using the piccies from their brilliant fridge magnets, again, and not slapping my wrist :-)

Pissed Off

2005-08-19T06:27:00.000Z

The phone's been cut off. Its still taking incoming calls but today any attempt to dial out gets a call diverted message. I am avoiding hanging on for it to connect until Gary and I can discuss whether to blow off the phone bill, or the council tax.

I hate British Telecom. We would have switched the line rental and broadband to Telecom Plus by now, but theres a catch - they will only accept transference of a bill under a certain value.

BT keep promising to stop charging us for rental of a handset they had back almost immediately, to cancel all the added extras we dont want or need any more like call barring, have twice sent out bills that never got here, then charged us money for the privelige of a duplicate. Worst of all they have decided to change their terms and conditions - instead of red reminders or ability to pay in installments or within a few weeks, they now apparently slap late payment charges straight onto the account, without having told us a blind bloody thing about it, so you think you have freedom to juggle, then Bam, things snowball.

Oh, there is a booklet of info that comes out with every bill - if you use BT, please always scan it for small print. The lady (in INDIA!) at one of their callcentres said it would have been explained in one of them. Probably in with one of the two bills I never got. Thats what you get when departments arent even in the same bloody country. At least T+ is all UK, all in one place. Did you know, apparently even British Gas is French these days?

Money is tight at the moment, I admit - the other half earns a pittance in any case. I wouldn't change him for the world, just the system. Humiliatingly, for starters, he earns something like £6,000 less than the guy he works beside in the same job, because of the difference between being an Officer Instructor and an Instructor Officer. As it's vocational work both of them are in any case paid like manual labourers - tutors and workshop supervisors are on the same payscale, it doesnt make any financial difference whether you are teaching CCNA or supervising the gluing of rubber grommets. It sucks. I want him to get his teaching degree and get out of there - he has enough credits to get through it in double quick time, but he just loves helping the bottom rungs of society - he prefers people who value their opportunities to, say, gum chewing teenagers who want to nick all the metal mouse balls and drop paperclips and chains into the computer housings. He's done the school thing. He lives to teach, to enthuse.

There are a couple of creditors wanting our blood at the moment and I seriously have to go get paid employment out of the home - not easy in a hick backwater town for anyone, harder when one child has Aspergers. Its a hidden difficulty - what they call an educational need, so theres no DLA or extra cash, Lewis, our ten year old, just needs the world translated to him 24/7 or he freaks out. Even registered childminders are not prepared to cope straight off the bat (heck I have yet to meet a teacher who can relate to him inside the first three to six months) - not that I could earn enough to afford one. I need one of those gold-dust school-time jobs.

Lewis is the capper on all of this. Everyone has squeaky times, financially, if they have kids, and we'll get through, but cuts have to be made. So far he has completely failed to grasp this, and the 'can I have's have been flying thick and fast as usual. Until today.

Gary is on two weeks leave and has now taken to his bed. He's not just sulking, but actually asleep - coping with the kids is harder work (obviously) than with a room full of students. Thanks guy, nothing like teamwork.

I made the mistake of telling Lewis that, for a couple of months, we really might have to cancel the subscription to Sky TV. This has set him off on one and now his sister is in tears, on her birthday.

Why? Because he is going round the house almost hyperventilating and obsessing about saving his TV - calculating what every item is worth (from a ten year old's perspective) and trying to take charge, even interrogating me about whether we get child benefit and why its not £100 a week when his mate Hayden says it is, what I'm doing wrong to get less and what I think I could do about it. All he needs is a clipboard and a Hitler moustache.

Om.......................

He has just turned to Imogen and told her in a very authoritative voice to brace herself, but the first thing to go will have to be her guinea pigs and the cat.

Nice one, Lewis.

Excuse me, I am just going to find a corner, sit facing it, and rock, humming 'I'm a little teapot' until the fairies come and take me.

Email #15

2005-08-10T11:14:00.000Z

Dear Mrs Baggage

As promised new SA form and Consent form for you to complete and e-mail back, as soon as possible.
It would also be most helpful to have these new completed forms signed and posted for the file.

I will put these forms with the forms dated 15 July 2004

SEN Casework Administrator

Memory Meme

2005-07-13T06:25:00.000Z

BadAunt has tagged me for this long and complicated meme – so it’s her fault! Its even her fault that I have to tag five more people at the end of it. Any problems, you know who to visit!

What I was doing ten years ago:
July 1995 I was sleeping in the front room of a two bedroom flat, because I had my two older kids, plus their larger, resentful step brother (his mum had done a runner to Newcastle, taken his baby sister and left him behind), plus Gary, plus Lewis who was then eight months old. We had to give up the goldfish to make room for the cot because they had a six foot tank. Carried them to the pet shop in a bucket, the oldest being a six incher called Sodom, whom Gary had owned for years. I wasn’t working but was Secretary of the Tenants Association.

5 years ago:
July 2001 I was one month off becoming a grandmother, tossing up whether to report my daughter’s boyfriend to the police because she only turned 16 that April, and whether to sue the Health Authority because they treated her like a fussy hypochondriac and told her it was irritable bowel syndrome until she was gone 20 weeks. I was PA to the Town Clerk and also Mayor’s Secretary, and would have been organising the stalls for the annual town ‘Fun Day’ and the brass band etc for the Clean Beach Award.

1 year ago:
Working from home for a company that went belly up because one of the Directors went bankrupt, then shadow directed allegedly just long enough to put the bills and paperwork in a.n.other’s name whilst simultaneously stopping the payments, then buggered off to Spain leaving the piggy bank empty. I think it was around this time I was volunteering all my paperwork to the DTI. I keep ALL my paperwork – emails, msn messages, the lot. I was also fighting to have Lewis statemented as he had just been diagnosed with Aspergers, and taking Imogen to hospital because her hamstrings are worryingly short.

Yesterday:
Monday 11 July – Packing for Gary to go away, attending my youngest’s school sports day in the sort of intensely humid heat only this green, pleasant and generally wet land can give off when the sun shines. Blogging, dossing about. I didn’t do much at all.

5 snacks I enjoy:
Apple
Banana
Dark Chocolate
Crystallised ginger
Cheese & onion crisps

5 songs I know all the words to:
Don’t Come The Cowboy With Me Sonny Jim – Kirsty Maccoll
Paradise By The Dashboard Light - Meat Loaf
The Christopher Robin song – Cheryl Hall
Big Yellow Taxi – Amy Grant
Everything from Grease, Carousel, Wizard of Oz, South Pacific, Charlie & The Chocolate Factory etc etc etc

5 Things I would do with $100 million:
Panic – that’s 100 million chances to make a mistake
Buy a house
Have a holiday
Pay for education
Give a lot away – not because I’m nice, just because I’m not trained for that responsibility and I don’t think I could sleep.

5 locations I would like to run away to:
Nope. Blossom where you’re planted. Visits sure, no running away.

5 bad habits I have:
Procrastination
Smoking
Spending too much time on the internet!
Stating the obvious
Being blunt

5 things I like doing:
Reading(blogs included)
Writing (ditto)
Playing with my kids
Arguing a point
Laughing

5 things I would never wear:
Crimplene
Nylon
Track suits
Hairspray
Hoop earrings

5 TV shows I like:
Star Trek
Little Britain
Dead Like Me
Doctor Who
Never Mind The Buzzcocks
(Did anyone say they have to be showing at the moment?)

5 Biggest joys of the moment:
Family
Pets
Friends (bloggers included)
The sea
The hills

5 Favorite toys:
Computer.That’s it. I’m not a gadget addict, so pick from joys/likes

Imogen

2005-04-19T06:21:00.000Z

Imogen is my eight-year-old saving grace. A little odd, for our family, she is amiable, affable, easy going, forgiving, hopeful, friendly, patient and all the rest. She wanders round in her own little cloud of quiet optimism and is the reason that her brother was tested for special needs, instead of the family being tested for hereditary insanity.

Look at Lewis on his own and I would forgive you for thinking he is being dragged up by a mother who only remembers him every so often. Look at him side by side with the perpetual winner of the annual 'most likeable child' competition at school, and you see things in a different light.

To be fair I do worry that Imogen excels at nothing except being happily and unobtrusively in the background, and that her constant certificates for 'smiling' or 'caring' or other mannerisms are hastily made up by teachers who cant remember a thing about her except that she never goes against the flow.

She's not Pollyanna (thank God, I think I'd puke), but heres an example, today.

Imogen has repeatedly told us that she has after-school Art Club this term. She has been excited about it constantly for a full term, since January when they first discovered it was oversubscribed and split the children into two groups. She has been particularly emphatic about how much she is looking forward to it, on Tuesdays. It was going to be Tuesdays.

Today was to be her first day, as no school clubs reconvene on the first week back after a holiday. It was her sole topic of conversation all the way to school this morning, and........... it turns out they split the group into two HALF terms. She has walked past the teacher leading the class every day for six weeks before the Easter break and the bloody woman has never once mentioned it was Imogen's turn already.

We only found all of this out after scouring the school, thinking she had got the wrong room, when we finally went and asked the secretary.

Imogen went grey and very quiet, you could see the total heartbreak and panic on her face, the disbelief. She tried not to look at anybody at all on the way out of school.

Tears? Just one, and that only when she quietly mentioned that she wouldn't get to finish her picture, the one she had started on the first day, before they split the group; the one she had been finishing, in her head, every day for the last fourteen weeks.

So know we are going to try starting a bucket for papier mache and maybe, if I'm really unlucky, do a bit of salt dough as well. What else could I offer? How could I not offer? She's sitting there, waiting for me to finish typing, looking all renewed and hopeful.

Here we go............

Bollocks!

2005-04-08T06:51:00.000Z

This is a steam valve post, asbestos clothing recommended.

Not last night, but the night before, we had a power cut. It happened at midnight long after my husband had gone to bed (he's not really an old fart - he gets up at 5) and as I was doing a last few things on the web, very slowly and stupidly, because by that time of night I usually have my eyelids propped open with matchsticks.

I forgot to mention - if Gary gets up at five, I am up by five thirty, as his idea of tiptoeing round is to find six or seven reasons to come back into the bedroom, half of them requiring the light on and a lot of under-the-breath grumbling.

He also leaves all the other lights on, washes his hair, bangs around in the kitchen and watches a bit of Breakfast TV news 'quietly', and if that doesnt grate on my nerves until I get up, then he has the knack of leaving the bedroom door 'almost shut', you know, that position where the latch hits gently against its casing with no perceptible rhythm. Its like chinese water torture or that moment in some TV shows when they announce the winners after a looooong pause. It drives me mad. Just as I am beginning to relax and think it wont happen again - tap!

Funny thing about me - I am great in a crisis, I'm a real gumboots girl, the bigger the disaster the better I cope; practical, optimistic, caring, a whirlwind of positive activity and support. Its the little things that turn me into the demon bitch from hell.

Anyhow, the powercut; the lights, the computer, everything went off with a pop at midnight, on a very dark night. This is a family home (well thats a nice way of putting it) and its the Easter holidays and this is not the sort of place, at the moment, that I would invite anyone to. OAPs and the blind wouldn't stand a chance. My left thumb is still sore, probably from fumbling in the dark for a wall corner that was closer than I thought, but how my insteps survived plugs and plastic toys is anybody's guess.

Mercifully there were smelly tea lights left out on the fireplace (there are a few strange advantages to not putting things away, it seems) but with all the streetlights off and the total darkness, it was a game getting there. I only have ceramic tealight holders and it was too far to go to the kitchen for a saucer, so the light I managed to create was very dim indeed and, held close, seemed to being a better job of scorching my corneas that casting any illumination on the room.

It was at this point, in absolute silence, that my ten year old son woke, crept to the front room and walked straight into me. I have never been so terrified in my life.

So, with him sticking close in a move-your-elbow-and-he'll-have-concussion sort of a way, and by the light of a quarter inch flame deep in a china pot, I found the electricity cupboard which doubles as the coat cupboard, checked the readout on the meter at the furthest darkest most flammably packed corner, ascertained that there was no power coming in to the house (before realising, doh, that the streetlights weren't on, so I could have guessed without checking), fumbled to the other end of the house, found the phone book, found the emergency number, rang it very slowly using the keypad like braille, got an automated message giving me another number, rang that, and found out that 'men were on their way but no-one had any idea how long it would be'.

Oh great.

By this time its about twelve thirty, so I take the limpet slowly back to bed, tuck him in, have a short, urgent, whispered argument with him about why I can't leave a naked flame in his bedroom just to make him feel better; trip, stumble and fumble my way out of his personal plastic soldier bombsite and into my own room, half wake the other half to let him know his alarm clock isnt working (he's really good at waking up without it, so long as he knows he's without it) and collapse gratefully into the beckoning pit. The last irritation, I believed, was the waxy scent of the tea light after I blew it out, which remained right beside me on the bedside table, just in case, along with my lighter.

You know that glorious, overtired feeling when there seems to be an age between ticks of the clock, and in each space muscles rush to unwind and meld with the bed, sleep hormones flood your body so that breath by breath there is less of it still feeling like its attached to you..... bliss.

Tick...spine unlocks,....tock...warmth sweeps over,.....tick....legs are asleep,.....tock.....head goes fuzzy, ...tick....."Mum?"

"Er, mum?"

"What"

"I'm scared"

(in gruff, slurry voice) "Don't be daft, go to sleep"

...Tick...

"Mum?"

"What?"

"Someones outside with a torch.......... I think we've got burglars"

So what did I do? I got up, of course, went to the window and had a look. No torches, no burglars, but a (battery operated?) burglar alarm on the house opposite is dolorously winking a tiny white light, normally completely unnoticeable. Gentle conversation ensues, whilst husband lightly snores and occasionally adds to the suspense by appearing to be about to grunt or snort instead.

Waking Gary up is NOT a good idea. Once he's awake, he's awake and he lets you know about it, all night. He could enter the world championships for solo prostrate mattress trampolining, and the grunts would make a weighlifter proud.

This is going on a bit, so, anyway, settle son down, settle self down, count to ten and start again.
"Mum?"

End result: at five to one in the morning even Gary (who's half awake impressions of Father Jack ought to be legendary; fuck, bollocks, grrr....) agrees to let the sprog share our bed for the night, for the sake of reduced peace rather than none at all. So I'm lying there waving one arm about in the air and using my lighter like a Barry Manilow fan so that son can crash and stumble toward the light. He gets into our bed by climbing over the end and walking up the middle.

Five minutes later the lights come on.

This ought to be the end of the story, except that the house was immediately lit up like Battersea Power Station and involved me (who else?) getting up and going round turning things off.

Son goes back to his own bed.
Son decides he's still a bit scared of the dark now, gets back up and turns his bedroom light back on.
I lie there trying desperately not to notice the warm yellow glow from the hallway,
And the power goes off again.

When it was finally repaired at coming up for 2 am we were back to three in a bed, son and husband both sideways trampolining in the search for space and me clinging to the mercifully solid edge of the mattress like a spare plank.

5.30 am yesterday morning I woke to find Gary fumbling for socks, one overheated child making his unconscious way to the middle of my pillow away from the cold patch where his dad threw the blankets back, and the cat on my head, or rather nested at the top of same pillow, pretty much in my hair. I didnt even have an inch of space to roll over.

Yesterday wasn't so bad, considering. OK I was on auto pilot, a few million more braincells than usual refused to fire up, I probably made some serious bloopers and I was aware of a slight shiver of muscular fatigue, all day. Being a mother strips you of all pride however, particulalry pride in your ability to function as a member of society, so I slipped back in to new-mother-zombie-mode (once learned, never forgotten) without a flicker of guilt or shame at functioning at the level of a mental patient.

Catch 22 with autopilot, for me anyhow, is that my body clock defaults to the previous day's settings, in other words last night I was wide awake until 1 am and half awake until sometime around 2, again, and today I am a little more irascible, a little more inclined to feel that the world and I should be back up to speed, when we're so obviously not.

Perhaps this wasnt the best morning to decide to answer an email I had tactfully ignored until now. Perhaps today would be a good day to remember that I have the capacity to kill people and destroy lives and relationships with the demure lifting of a single eyebrow, and put a conscious effort into refraining from exercising it, irrespective of the feel-good factor.

On the other hand theres an eclipse today, which my friend Annie says is like a full moon with knobs on, so maybe we are all a bit twitchy and my own private meltdown will go unnoticed amongst everybody elses.

Eclipses are to full moons as guys are to women.

Get it?

After all, they're just big girls, with knobs on.

Email #14

2005-04-05T11:11:00.000Z

Thank you for your email. I have forwarded this to Ms Caseworker-manager who is dealing with Lewis' case.

Kind regards. Mr Caseworker

Email #13

2005-04-05T11:09:00.000Z

Dear Mr Caseworker

This is to let you know that I have called Sendist in Darlington, who put me on to Mr Adeshiyan in London.

I explained that when I applied for tribunal I was under the impression that no note in lieu had been issued. Now that misunderstanding has been corrected I see we are free to re-apply for statementing in May 2005 and not six months or more into the future.

He is sending me a cancellation form in the post, so this will slow things a little.

If you like I can fax you a copy of my cancellation, once I have filled it in.

Best regards

Cheryl

My Ten Year Old

2005-04-02T08:20:00.000Z

Living with a kid with Aspergers causes as much stress for him as it does for me. Somehow I feel inferior, and I struggle to keep a veil of parental interest across my face whilst he lectures me on his latest theory.
God alone knows where they come from.

In the past two weeks he has come back to me, time and again, with his developing theories (which seem to work themselves out in the back of his head whilst real life goes on regardless) about:

Liver cells re-grow. You can lose a bit of healthy liver and (he tells me, I don't know) it will grow back. So he wants to identify and extract the gene and use it to allow people to re-grow limbs.
Fingernails might snap under pressure but they are quite strong and flexible, so he wants to design a way to allow skin to take on some of the properties of fingernails, to resist injury.
This one is his pet project, because its just for fun and not for saving lives (he's hot on saving lives and sometimes it gives him a headache) : black holes are supposed to be gateways to other dimensions (actually he called them something much more scientific, but I forget) so he wants to harness that, design them, and make it so you can step in at this end and out in China. We had a big discussion about whether you would need a really weak field or a really small hole, to achieve that.

Oh yes, and we also had an argument about whether spaceships would need to be anti-gravity or impervious to gravity, ie function in a non magnetic fashion to start with; the differences between speed and manouverability in a vacuum and in gravity and whether the vacuum is really a vacuum or whether its really thin gravity because otherwise why don't all the planets just wobble off. Or something like that.

Anyway, thats what a genius, dyslexic Aspergers kid does with his easter holidays, behind and in between watching Ed Edd & Eddie, beating up his sister, enjoying the satire and irony in Buck Rogers or The Simpsons (you know, the adult political stuff), beating up his little sister and playing adult computer games (they have to be adult - he's too good at them). Just for fun, you understand. Well maybe for fun, I suspect its a life-long obsessive concern for the safety of not just the human race, but individuals, but one that he senses it's advisable to dress down. He has a big heart and big plans. I wonder where he'll be in ten years.

Lewis again

2005-03-18T06:19:00.000Z

Found out today that my ten year old son had an 'incident' at school yesterday.

This is to be expected.

He has Aspergers syndrome, but owing to some confusion over the evidences provided to East Sussex County Council, instead of being statemented in time for the start of this school year, he got a note in lieu, something which does not provide extra funding.

His favourite classroom assistant, Zoe, (at one point the only person in the school who understood him, according to Lewis) was the casualty of that, her hours were reduced from full time to two days a week.

Bless her, she hung on in hope for as long as possible, but had to quit this Tuesday gone.

This, according to Lewis, has changed everything, although he wont verbalise it. He feels his (lovely) teacher doesn't properly understand him without Zoe to translate and things are on a downhill slide, blatantly obvious in less than two days.

So, Thursday, another child starts picking on Lewis during a break time. This is fairly normal, or it used to be without an interpreter hovering in the background to give him essential tips on social interaction, if needed, before it got to 'smack in the teeth' time. His reaction, given that he feels isolated, misunderstood, picked on etc was probably not that outrageous, but he apparently gave as good as he got.

Upshot: both kids get detention, in separate rooms.

Lewis, as you can imagine, thought this was unfair, and on a matter of principle, refused point blank to go to his detention. He demanded that someone go to fetch, in his words "One of the Morrow-Nobles" (thats Zoe, or her sister who is a full time teacher there for another year group). He just wasnt going to budge until told to by someone he could accept the instruction from.

Eventually the Special Educational Needs Coordinator (SENCo) told him she was just going to stand in the corridor with him until he calmed down and went to start his detention.

His dead-pan answer? "Well you'd better go and get your sandwiches then, you've got a long wait."

I repeat, the kid is ten.

She knew enough to walk away. Without someone to lobby, he gave up and walked to detention after all, but if anyone expected a normal child, this reaction of his would have only piled on the pressure, maybe resulted in a restraint hold and a forcible march to an increased detention. He would have been kicking and screaming about his human rights for the rest of the day, complete with irate language. Heck I wouldn't put it past him to phone Amnesty International.

Thank God, when the SENCo told me about this she was laughing at it all. I was so relieved that he hadn't alienated himself from yet another adult, that I forgot to be angry until half way home; angry that, with the proper support, he wouldn't have been thumped in the first place, nor, with his gigantic social blinkers, pushed into a position where he thought that extreme measures were the only way out. Angry that he then had to go through all that stress and upset for the sake of a five minute detention.

Easter holidays start today. The SENCo will be at work next week, trying to sort out all the paperwork surrounding Lewis, either to re-present the evidences for the current statement application, in April, or for a new application, in May.

Good 'ere, innit.

Email #12

2005-03-12T11:06:00.000Z

Dear Mrs Parentlink-lady

What a tremendous amount of work in such a short space of time.
I have a couple of questions and one suggestion.

The first section appears to be repeated at the very end of the document. I would guess the empty table at the end is a format, for the teachers' use? This wasnt immediately clear to me, but then I am not used to these forms. In that case, to save them having to reproduce a blank, could it be on a new page, reoriented to landscape, to allow for bigger boxes and typeface?

The same element appears to suggest that a breakdown in the tabular format is only required of the level of help given at year four, not at year five. Thats great if the school are going to say they feel he needs that level of attention anyway and would be giving to him if the funds existed, unless that can safely be assumed.

I strongly suspect that the teacher's idea of the amount of help currently being demanded at year five disagrees with the amount listed on the senco's notes - as I say, I believe the senco took the form at absolute face value and listed only what was specifically requested on there, rather than the the total disruption caused / 1:1 attention required, current or projected.

I defer to you to interpret Ms caseworker-manager's suggestions and decide whether year five support needs to be re-assessed, but I thought that was what she meant. That said, the rest of the assessment papers were based on the child's behaviour within the framework of support provided at year 4, so redefining that alone would seem fair.

SUGGESTION: Lewis had to change classes early in year three, his behaviour up to that point was increasingly unacceptable and they changed his group as a 'new start' to coincide with the introduction of his teaching assistant, who was then with him for the rest of year three and all of year four. Splitting year three into two rows on the behaviour assessment section might be best; it should show up a sharp change on behaviours and a crucial turning point.

Please dont be too hard on the school if they havent gone for the outside help that you mention. The Deputy Head at the time went to a lot of training herself, introduced a lot of SEN awareness training into the school and ultimately left to become Head of a special needs school - they had their 'outside help' built in. She was the person who found Lewis his assistant, her own daughter, so communication was more than excellent there. The school was trying to get Lewis statemented before the last school year ended, to stop them having to reduce Z's hours, so any thoughts of further support have been put on hold this year, with the statementing process still at hand.

Hope that all makes sense!

Thank you

Cheryl

Email #11

2005-03-12T09:58:00.000Z

Following the meeting (when it was fresh in my mind ) I made some notes that I think could help in the presentation of info to the panel again as Mrs Caseworker-manager suggested

I will be contacting school and EP on Monday- and see what they think-but would welcome any thoughts you may have before then

(Parent Partnership Officer)
Parentlink

Meeting re LEWIS

1. There need to for clarity about provision in the past (Y4) when I understand support was extensive and the progress this achieved. It needs to be compared to when there was less support. Colour would help comparison

Additional information (some examples)

 RESOURCES- eg work station, computer for recording, visual timetable, fiddle toy, literacy programmes etc

 TRAINING -ie consideration at regular meetings, whole school training, circle time for class

 Specific programmes undertaken:
Jump ahead
Structured spelling programme
Social Use of Language etc
 Allocation of additional responsibility eg taking register, counting number of dinners, taking messages, helping with younger children
 Additional breaks from work (how often, doing what)
 TIME OUT arrangement-how often was this used and how independently?

2. This needs to be compared to current (reduced SAP) levels of provision and additional information
Additional information (some examples)

 RESOURCES- eg work station, computer for recording, visual timetable, fiddle toy, literacy programmes etc etc

 TRAINING -ie consideration at regular meetings, whole school training, circle time for class

 Specific programmes undertaken:
Jump ahead
Structured spelling programme
Social Use of Language etc
 Allocation of additional responsibility eg taking register, counting number of diners, taking messages, helping with younger children
 Additional breaks from work
 TIME OUT arrangement how often was this used and how independently?

3. Then the progress can be charted and evidenced
Changed of support resulted in (or contributed to) PROGRESS academic
This is evidenced by SCORES for spelling, reading, maths,
This is clearly more difficult, but some aspect could be quantified
Eg disruption to class (calling out, arguments with peers, hiding under tables, incidents when others were hurt etc) could be:
1 for low level to 10 for highly disruptive seriously effecting learning of all class

Finally
3. The role of outside agencies and how they contributed

Who gave what advice and what was the impact?

Email #10

2005-03-09T09:54:00.000Z

Parentlink to the school:

HI

Mrs Baggage has contacted our service for support, information and advice about Lewis.
The particular issue relates to his Note in Leiu.
Mrs Baggage feels that Lewis needs are such that a statement is required to support him in school.
The LEA have stated that 'The proposed level of provision for Lewis does not indicate support at statement level( N in L )'

Mrs Baggage is interested in speaking to the LEA -a meeting has been arranged with (SEN casework manager) on Friday 11th Feb at 11:30 at County Hall
She has lodged notice of her intention to appeal against the LEA decision not to issue a statement

At this meeting will discuss

How much help* Lewis has had in the past (was this full time 1-1) and how effective this was

How much help* Lewis gets now and the current effectiveness

The progress lewis is making over time

* help or provision includes a planning of work, grouping, teaching strategies, training etc as well as support 1-1 or in a small group

The N in L hasn't at this time been circulated. (J have you seen it?)

How closely the N in L matches Lewis and the provision he needs
To assist in discussions Mrs Baggage is
Bringing copies of his current IEP (detailing provision)
Examples of any behavioural problems since he has had less support (to compare to when he had more support and also as a measure of progress)
Other evidence of progress from his SAT's scors, spelling test results etc

Please contact me should you wish to discuss this further

(Parent Partnership Officer)
Parentlink

Thanks, Caroline

2005-03-08T08:22:00.000Z

Thanks to Caroline for tipping me off to a truly bizarre site, nobodyhere.com .
Is it a blog or isnt it? I dont know.

Anyhow, Seriously freaky is the toe dream, you have to see this. Very clever and just yuck.

If, after that, you are feeling a little sadistic try this: Bear. Bear is pink but somehow very masculine, and I like the way he cringes slightly. You'll see.

--------------------------
My contact at the County Council sent me out copies of everything to do with the statementing process, yesterday. It all arrived today. Bless him, its nice to know theres one good apple in the barrel, even if this is still one huge, hellish mess.

Haha-de-bloody-haha

2005-03-07T18:44:00.000Z

A joke from my resilient, ebullient eldest son, who has gone from end-of-the-world-get-me-out-of-here to life's a beach, in two short days:

Did you hear about the circumcisionist who slipped?
He got the sack.

A joke from East Sussex County Council, who were weeks late sending me a letter announcing intent to issue a note in lieu for my younger son, in which letter was a list of intended provisions and a note on how to appeal etc:

'Oh no Mrs White, the Note in Lieu was sent out to you in December with the letter announcing it'.

Yeah right, I am rolling on the floor, my sides are splitting, not. Thats why, 9th January, even the Educational Psychologist hadnt seen a copy.

KILL.....................

Email #9

2005-03-07T09:51:00.000Z

Dear Mr Caseworker

Further to our telephone conversation today:

I accept that, on the email version of the original letter announcing intent to issue a note in lieu, it does appear to say that a copy was included. I do remember a list of suggested provisions but nothing that appeared to be definite or cast in stone. I would be grateful to see that list of provisions again. Your letter gave me to the 15th December to express disagreement and up to now I had taken that to mean that there was a period of grace and negotiation before things were formalised.

When I went to the meeting at School, on January 9th 2005, I was given to understand that the Note in Lieu had still NOT formally been issued, that the Educational Psychologist had no copy and so I was further led to understand that the list you originally provided was of intended points and not a 'final' official piece of paper (trying to avoid using the word 'statement' there!).

This was underlined by ongoing communications between ESCC and the SENCO asking for clarification on certain points, which again I was led to believe had been requested IN ORDER to formalise the note in lieu, the finalising of which had been delayed following the need for certain extra or more complete evidences.

Have I been thoroughly misled/confused?

It is worth pointing out that, if the note in lieu was issued that long ago, Lewis has already been suspended for three days since then for uncontrollable behaviour in the playground.

I am completely confused here and would appreciate hard copy, through the post, of everything you now say has been sent to me, so that I can start to understand and I look forward to the formal response you mentioned in your email of this morning.

Gratefully

Cheryl

Email #8

2005-03-07T09:50:00.000Z

Thank you for your email. A formal response will be made in due course.

Regards. Mr Caseworker

Happy Daze

2005-03-05T08:30:00.000Z

I never wanted this to be a 'personal' blog, but a heroic gas man turned up at 4.30 yesterday and fitted a new fan on the boiler. We have heat and hot water.

The most bizarre thing is that when I was having to boil pans of water for the washing up, everything was done, carefully scraped and rinsed under the cold tap first to make the least mess in the precious bowl of suds which, given the recent awful weather, started going cold as soon as it was filled. This morning there isnt an inch of space in the kitchen because we all breathed out and caught 'it-doesn't-matter-itis'. The sink is blocked with stuff that wasnt scraped from the stacked plates before my darling husband landed them in the bowl to make space and all in all its time to get back down to business - rediscover tops grunged with the spills from five days of constant hot drinks. No more excuses that I cant face using cleaning fluids with cold water or worse, neat, with nothing but a cold hand-wash afterward.

Not only did the boiler man come and rescue us, there was a long, helpful and reassuring phone chat with someone who is helping me sort out the mess and confusion around my youngest son's special needs statement.

His older brother upset me, thoroughly, for two days solid, but that has a happy ending too so today I am in an incongruous puddle of peace. The little issues, which will probably matter tomorrow, are insignificant today, my internal warning system has shut down. It over heated with the last few days of big issues and it needs a reboot.

It feels strange, like treading water, but I know my life well enough to make the most of it.

The older son thing requires its own space, so the telling will be separate, if it happens.

Email #7

2005-03-04T09:47:00.000Z

Dear Mr Caseworker

As you know, I claimed my right to a Tribunal rather than lose that right, and not because of a definite intention to make use of it.

As far as I am aware a Note in Lieu has still not been issued, which makes it 'early' for mediation, nonetheless this is a path I have to go down now because of the time constraints on finalising a tribunal application, if eventually needed.

Please confirm that the ESCC and the school are still in discussion over clarity/interpretation of the submissions and that the note in lieu has not been finalised. I have to assume, because of the ongoing efforts in this case, that the notice of intent to issue may have no bearing on the content of an eventual note in lieu - I am therefore at a loss to know whether I would agree/disagree with the provisions, or the school's declaration of ability/inability to provide at the stipulated SEN level.

PLEASE WOULD YOU accept this email as my permission and request for Parentlink-Lady to have access to copies of anything she requires regarding Lewis' case. I would be very grateful if you could send her a copy of the paperwork that has been put forward to date, both the evidences originally submitted and the subsequent communications to and from the school.

Gratefully

Cheryl