31 March 2006

Coming Up For Breath

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

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

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

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

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

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

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

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

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

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

Fuming is not the word.

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

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

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

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

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

Anyone got any good ideas on where to emigrate?

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

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

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

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


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

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

It's a start.

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

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

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

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

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

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

Humph.

Tags: , ,

12 comments:

Ally said...

Oh dear. I don't blame you for being frustrated. Is Parentlink like our local Parent Partnership that we were told about on our adoption course? Independent advocates?

And I am outraged by the database thing.

Cheryl said...

Yes its the local Parent Partnership. I always forget the non-County name for it!

Cheryl said...

And I have just looked at theyworkforyou.com and searched for the phrase Common Assessment framework.

Apparently it comes under health and apparently it will be instigated across the board, not just for schoolkids, but the last Q asked in parliament on 20 March was when this would be instigated. Apparently its only on a white paper.

So how come the County is running it about our kids already? Its all a bit police state and I'm confused and angry.

Kim said...

sounds absolutely frightful! What an irritating day. (((Cheryl))), oops careful, I handed you a martini with that hug.

Stegbeetle said...

*hugs* if you can manage with a Martini in one hand! Care for another? Sounds like your son may have a major future with NASA - I'm sure he'll remember his Mum when he's rich and famous!
The paperwork that goes along with an SEN is probably more frustrating that any amount of dealing with the child in question, so good luck as you wade waist deep through the mire of bureaucracy.
Incidentally, Cheryl. Has anyone ever mentioned that in your profile photo you look very like Jane MacDonald? I don't know your opinion on the lady but this is intended as a complement!

Cheryl said...

Compliment very willingly accepted, thank you!
Sadly the truth is more like this:
http://madbaggagerambling.blogspot.com/2005/12/who-do-what.html

Michael Manning said...

Very cool to vatch up with you here!

fineartist said...

Oh sweetie, what a frapping nightmare, and it just seems to get more crazy as you go along. It's like, one step forward ten steps back.

You know what though? I know that you are strong, intelligent and determined and it WILL be alright. It has to be.

I can only imagine how frustrating it all must be though, so I'm sending you warm thoughts, kindness by the bucket loads from the universe and a ginormous hug. xxx, Lori

jane said...

I don't know how you manage to keep up with all this Cheryl. I have a feeling your son is going to end up at the right school & it will be due to your persistance. If only ever special needs child had a mom like you.

Le laquet said...

Hang on, the LEA is in charge of the school and if it's on his statement of AEN then the LEA can just instruct the school to take him even if they are over subscribed ... can't they? Can't they? Bloody, bloody stupid-sucking education system!

The local dumping ground ~ you're trying to avoid that for a reason (lots of reasons if it's like our local hole) they surely realise that he wont get the support he needs if he goes there? God I'm frustrated enough you must be at "screaming pitch!"

Breathe deep, keep going, come and scream at us anytime!

Abby said...

Hello there! Thanks for mentioning me on your blog! I might check out all of your favourite blogs too. :)

The database thing. Arrrgggghhh. I have a relative whose son was saddled with an Individual Education Plan that said things like "Unusually he brings a bell into school each day" and "He wipes saliva on his hand and then on the desk". My relative challenged the IEP with my help Googling what *ought* to be on an IEP, from the internet. :) And I think it will be rewritten. But oh what fun for that kind of detail to be available to the police later on. Great. I'm usually apolitical but that gives me an incentive to be more political!

Writer Mom said...

Optional ending #3: He invents a wormhole that leads to a better world.

Your son's mind fascinates me so much. And YOU are so incredible. This must have an extraordinary ending.

I know you will never give up.