09 February 2006

Fuck The System, It Sucks

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.

16 comments:

She Weevil said...

I presume you have been provided with the leaflet "SEN a guide for parents and carers" but you might also like to look at "SEN Code of Practice" Section 2.7 states that "professionals should recognise ... the need for flexibility in the timing and structure of meetings." I would write to them asking them to bear this best practice in mind and asking that given the timing of their decision with relation to the holidays, you are given more time to consider their draft statement.

I hope this helps - if the links don't work I can email them to you.

Have a big hug.

She Weevil said...

You might also want to copy the letter by email (stating so in your letter) to the cabinet members with responsibility fro children and adult services href="http://www.eastsussex.gov.uk/yourcouncil/about/committees/meetings/cabinet.htm#subtitle3" East Sussex County Council

She Weevil said...

Sorry buggered that one up - not very good with html tags

She Weevil said...

East Sussex County Council

Cheryl said...

You are a sweetheart.
There IS tribunal.
Catch 22 - every day brings us closer to senior school. Until this is settled, no school is selected. Until a school is selected no 'transition' can begin (handover between the SENCos, private orientation days so he's not so scared of the building, etc). It should have started already.
They have me over a barrel. And that sentence is way too graphic, for me.

She Weevil said...

Have you been in contact with the parent partnership people? Are they any good? Being on a barrel just gives you a better vantage point.

HUG HUG HUG HUG

Writer Mom said...

I wonder if I may copy, tweak, and repost this for my own blog?
Yesterday, I tried writing my frustrations upon receiving in the mail all of the 'observations' paperwork from Jack's December evaluation.
The school system asked if I might send this along to them.
There is no way in hell I'm sending them this psychologist's assessment!
She had him down as emotionless on paper as a TV set.
"Throughout the course of the day, Jack did not interact either with myself or his parents, nor make eye contact...Spoke gibberish...I couldn’t understand a thing this kid did..." <--I paraphrased.
I confess, found myself in the puddle yesterday afternoon. It feels like a snowball of paperwork that began with a preschool teacher upset he wouldn't put his feet in paint, and rolled downhill to us being 'recommended' for DNA fragile X testing...DNA testing? What the f*ck? 'Would you just LISTEN to me???' Apparently not. My name was even misspelled five times.
Bottom line, her observations were so off (and she kept them to herself--didn't come up in our face-to-face interview), why should I trust that anyone else knows what my son needs? If they can't see why he does what he does (because they don't realize there IS a reason), HOW CAN THEY POSSIBLY educate him?
He's set for ANOTHER round of evaluations in March. If we're LUCKY, he'll be in with other kids in time for spring break. They assure me this is all going to work out fine, stepping into a classroom after the other children have been there two months...(breathing breathing).
Why is it so Effed up???

*Thanks for getting me off the floor.
I've got phone calls to make and a backbone to polish.
Good luck to you! And when your son wins the Nobel Prize for his work in genetic memory, I'm going to the world press with the story of his wonderful mother.

birdychirp said...

FUCKERS!

Not constructive I know, but I can so relate...

Cheryl said...

Birdychirp - very constructive. Its good to feel I am not alone in my outrage. Sometimes, as much as good new ideas, I need someone to scream with me. Appreciated!

Writermom
I have learned to be grateful for every printed word that maligns my son, for every official description that paints him worse than I know him to be. It hurts, but you have to look at it this way:
For one thing, schools intervention is never adequate. If they are busy inadequately providing for worse disabilities than are really present, they may get one step nearer to getting the balance right and allowing him to flourish.
Secondly, if it is an obviously OTT diagnosis, it plays to a teacher's self image - "Oh but he's not like that with me!" which can actually enthuse someone to care more about him and prove themselves the better educator, the miracle worker, and ultimately become one of his defenders. He's going to need them.
Hugs back at you. xx (I take it that by 'tweak' you mean remove the obscenities! Be my guest)

Writer Mom said...

No, no. I'd probably add more. :) I could just change the name and country.
(Actually, I'm gonna put up the Jack story today. Maybe parents sharing will show educators, evaluators, politicians what they're putting us through? Maybe?)
*I'll send the papers. They PROMISED me that they won't evaluate him until he's gotten comfortable with the adults.
We'll see. Hugs back.
Can we all write the cabinet member?
I'll do it.

mommyguilt said...

Run with She Weevil. Ask for an extension, since you JUST got the paperwork, and then fight tooth and nail. Our children have to at least have US fighting for them. WE'RE the ones who know what they need and where they need it. It seems as though the school systems are of the mind that if the child is not excelling - regardless of the reasons - that it's a reflection on the schools, the the SCHOOLS aren't doing well...Well, DUH- if they're not freaking helping our children, then NO, it IS their fault.

We have this new law now that if our children are not in academic jeopardy, they are not eligible for any kind of services through the schools. Well, poop on them. We have to either find some insurance that they can go through or suck it up, watch our child suffer until they ARE in academic jeopardy and THEN take the services. GRRRRRRRRRRR

I am right there with you....of course, that helps a bit in my particular situation, but in general it sucks.

Cheryl said...

So disability which restricts normal activities (these include learning) is no longer defined separately? Your Government has given up on helping cirizens reach their full potential, so long as they do not fall too far below average? Don't they realise that an attitude like that will gradually drop the average?
Unbelievable.

Astryngia said...

Oh wow - just been catching up with your posts. I want to make some reassurances about 'transition'. It's not so bad! Honest!!

But then some of what you wrote resonated so much....gotta take a breath to keep the pain and emotion in check...

I PROMISE you that it won't be that bad for him. It's much worse for US!!! We want them to be understood and make things as easy as possible - but they need the independence of finding their way in this wierd world...!!!

If you haven't yet chosen a school, ASK each one what their normal and usual practice is for the transition from primary to secondary.

Find out who is in in overall charge of transition and don't even mention special needs. Our school was really very, very good for ALL children - and that provided a really good start cos he didn't have to be 'different'!

There is a booklet available from NAS (you can print it off from their website but send for a couple of copies of the booklet to pass round) - you can then talk to SENCOs and see which ones follow the NAS guidelines about communication between parents and school (or are prepared to!).

If I'd known then what I know now, that's what I would have done.

fineartist said...

I'm sorry Cheryl, damn, just when I thought they were getting their poop in a pile they pull this crap on you. Man oh man, how exasperating.

Big hugs, Lori

Just another American Expat said...

Wow! Another person who actually spells out “Fuck“!

zilla said...

Well, shit. I'm all caught up with you now, and I wish things were going better. You've got your chin up and your elbows out; Son couldn't ask for a better champion.

And you're right about The System, and systems in general, too. Up their asses with a red-hot poker, I say.

I'll be hoping. If there's anything else I can do (send you a snootful of vodka, perhaps? -- oh, sorry, that's MY crutch) let me know.