Monday, December 06, 2004

Email #2

Dear Mr Caseworker

Thank you for all your help this morning.

Lewis was diagnosed by Doctor Rene Nassan as having a HIGHER ASD, not a basic autistic spectrum disorder.

I believe this changes the criteria by which his needs should be assessed. Whilst at a cursory glance his difficulties could be said to fall within the category for school action plus when compared with the East Sussex SEN matrix for ASD in general, when compared with the matrix for Higher ASD, I believe the evidences point to difficulties as described under Statement Band B.

This extreme difference takes into account the higher verbal ability and desire to communicate (however innappropriately) which quantify the higher condition distinct from ASD, and which require different handling.

I would be grateful if you could look into this. Before I choose what course of action to take I would be very grateful to hear which matrix was used to assess his educational needs.

Yours sincerely

Email #1

Dear Mr Caseworker

Son – Statutory Assessment Decision

Further to your letter Ref SEN/SAPNIL of 30 November 2004, received 04 December 2004, I am writing to advise you that I disagree strongly with the information being circulated.

My first thoughts:

I believe the evidences are missing proper example of Lewis’ behaviour prior to the current level of care and as this care has reduced since last year, example of the problems that are resurfacing without constant supervision. I accept partial responsibility for that. The evidence also seems to avoid mentioning the lengths that the school staff have gone to, to allow him to access the curriculum – providing him with his own table in class for three years running in spite of gentle and regular attempts to reintegrate him, providing him with headphones against the occasions when class is too distracting and he cannot attend to his work without blocking out other sensory input; I am sure there is more.

I believe that the guidance on provision fails to stipulate how that provision should be made and therefore fails to take account of continuity of care and the damage that can be done to the education of an autistic spectrum sufferer without continuity.

Today, for example, Lewis is refusing to go to school. This has happened a lot since he lost access to an adult during some break times. Whilst he needs to socialise with his peers he is yet incapable of doing that seamlessly and has already managed to get himself knocked out; chased into the toilets by a boy who then booted the stall door and hit Lewis’ head. With his quasi-obsessional behaviour this has caused him endless distress, after a long break from such fear he is once again convinced that someone is going to ‘get him’. Give him a weekend to mull it over and the fears grow, so that Mondays are usually the worst for this kind of behaviour.

He also in any case attracts the attention of others with difficulties, as he is only able to properly notice those peers that cause him concern. You could say he was hypersensitive to potential danger, at the expense even of noticing potential friends.

This is all happening in an excellent, small school where Lewis has spent several years becoming understood as an individual so that many of the staff know what methods of communication do or do not work in getting their point and any education across to him.

I have two issues:

1. Evidenced by a higher level of support last year than this, I can confidently state that less than constant supervision/access to communication allows old issues and problems, insecurities and behavioural issues, which hamper his education, to resurface. In Lewis’ case supervision equates to method of communication – to deny him access to someone who understands how his mind works is to deny him the right to clearly communicate.

2. It is essential for his education that at least one adult has a working relationship with the boy, someone he knows well enough to hear without his doubts and suspicions hampering the interaction and you are right that Chyngton School has worked hard to provide more than one person with the skills to interrelate with Lewis. However for the provisions you list to survive into senior school, where his ‘overload situations’ (crowded areas, strangers, new situations, excessive sensory input) will be multiplied many times over, I ask you please, to stipulate continuity of care and how that care is to be supplied. Point three of your guidance notes is crucial – it aims to allow Lewis to function well enough to receive the support offered by the other points. How, if this or any of the other provisions is offered by a person or in a situation that triggers overload, is he to be able to access this help?

My concerns do not involve Chyngton School, I cannot praise them highly enough. They would agree entirely, I am sure, that finance has forced a reduction in care for Lewis this year, and that this is not ideal and is less conducive to his education – however I accept totally that they are in a situation where they cannot afford to provide ‘the ideal’ so much as the most urgent provision, and provision is needed for other pupils.

My concerns revolve around the transition, in four terms or so, to senior school, how that can be managed, how we can provide him with a method of communication that works well enough to stop him getting into an awful lot of trouble there. I also fear that most schools will try to manage where another could not, that they will delay a new request for statementing until year eight or later and that he will fall through the year nine hole, where most difficult children are excluded, or will simply become one of the low achievers, against his potential. If that happens it will damage the self-respect and hope that Chyngton has worked so hard to build into his psyche and it will deny him his education up to the point of exclusion as his mind cannot properly function in distress but obsesses on the causes of a situation. It will then deny him proper access to exam options and his education as a whole.

I have to say that his older half brother used to get into trouble deliberately in order to gain the privilege of working in the corridor, where it was quiet enough for him to actually think. I do not wish Lewis to be put into a situation where he denies himself access to the larger curriculum in order to find the only way to concentrate on a smaller part.

Please, please stipulate continuity of care, and how that its to be provided.

Best Regards

Thursday, December 02, 2004

Special Needs Showdown

Well now I‘m angry. So bloody angry in fact that the adrenalin has jellied my arms and I cant mentally divide fury from panic from desperation. Its like I have slowly and methodically pushed a reluctant elephant uphill for the past three years and somebody’s just suddenly airlifted it back to the bottom. All the physical stress is beginning to register, the sheer bloody exhaustion, on top of the gobsmacking, mindboggling attempts to work out what the hell is going on, and why.

To explain, I produce unusually gifted sons. Actually I suspect my daughters of being slightly other than the benchmark ‘normal’ (I have two of each) and quite honestly, hallelujah for that. It didn’t give the older ones the ‘foot up’ that state school is designed, like the workhouse, to give only to the truly meek and grateful. Streamlining and subject choices and all the things that allow one to concentrate on subjects that excite came far too late for them, but I am not about to rail against our cash starved make-do-and-pray education system in general.

That my twenty-year-old son is ADHD with an initial assessment of Aspergers (probably he has both, the ADHD overrode the other diagnosis simply because the tablets worked) and also dyslexic tendencies is bad enough. That he has a lightning mind that could understand anybody’s office systems, computer network etc in record time, could sell sand to the Arabs and can mend just about anything in the world, yet works as a crab fisherman because that’s the only job where hyperactive tension and a flair for gynaecological language is appreciated if you don’t happen to have any qualifications, well that’s just making the best of a huge waste of potential.

God forbid, in this day and age that you should say that anyone has dyslexia. As soon as ‘being dyslexic’ became something the schools system had to provide for, the State element to age 16 changed their special needs rules and announced that no-one on this earth could be safely said to ‘have dyslexia’, only dyslexic tendencies. So what if your child has very high intelligence, a reading age ahead of his years, yet can spell helicopter by memory but not ‘the’ or ‘cat’, if his appallingly abysmal writing skills fall within the accepted range for his year (rather than for his potential) then you get sod all in the way of help. By the way it does seem that ‘the accepted range’ even through senior school includes completely illegible gobbledigook.

Andrew, my older boy, was expelled at the age of thirteen, in year nine, IN THE MIDDLE of the statementing procedure. As we then found out, early year nine is when most of the ‘troubled’ ones get booted and if your child is not excluded immediately as the year begins there is a snowballs hope in hell of finding a suitable placement in a suitable school.

Handy hint:
How to see if your school has a good caring attitude towards the children as humans rather than data absorption machines – check the number of spare places available in their year nine, coming up to Christmas. If they are packed to the hilt and oversubscribed yet the schools seems happy, you know you’ve found a good one. This is because they end up cheerfully taking on and helping the kids that the bored, self involved, ‘anything for a quiet life, shut up and listen’ type teachers in the other schools have given up on and kicked out. Sometimes all a kid needs is someone to listen, to feel that they are seen as a person and not a half-height annoyance that ought to fade back into the conglomerate creature called the pupils, or else clear off. There are teachers in this world who feel that their break times are for Internet shopping and discussing weekend plans and woe betide the child who interrupts that. I did a stint as a teaching assistant so I can swear to it.

Andrew ended up in a very expensive special needs boarding school. The alarm bells should have gone off when it became apparent they had plenty of spare spaces, although this wasn’t the impression they gave and once the LEA’s money is committed, you are stuck. It was 1997 for crying out loud, not 1897. He lasted less than a year at Philpotts Manor.

When they suspended him they sent him home in the clothes he stood up in. Everything (and I mean everything) else, bought new only a few months ago, ‘disappeared’ and they refused responsibility. Best weekend clothes, full school uniform, PE kit, sports kit, Wellington boots etc and when your child is already 6’ tall with UK size 12 feet we are talking mans clothes at mans prices. Plus, Andrew being Andrew, and impressions being everything to him, he had smuggled all his very best clothes and gadgets to school to try and fit in with the other boys, his home wardrobe was empty of all but tat.

They put him in the top bunk of a tin framed bed that was designed for kids under twelve, so that, as a hyperactive even in his sleep, he was constantly falling to the floor, most times even taking this flimsy contraption and the boy beneath with him. They refused to believe him or the other boys that it was the bed and not his wilful behaviour. Of course the tour we were given showed only the new solid pine beds, all as it turned out downstairs for the younger pupils. In the end they made him sleep on the floor!

They gave him a nasty weaselly housemaster fresh from running a drug rehab in Liverpool or somewhere, who absolutely insisted that everything was deliberate. ’You have forgotten your pencil case again deliberately, have this/that punishment.’ If Andrew protested that it wasn’t deliberate he was forcibly removed from class. He dislocated his shoulder a couple of times, falling out of bed, and this fact was ignored when the housemaster would put him in a half-nelson restraint – he always seemed to pick the bad arm, the slimy bastard.

Yeah right. I knew a man with fists once, used to say I was crying deliberately to wind him up more. That’s blatant criminal abuse, and so was that housemaster’s attitude. A person with ADHD can no more teach themselves to do what their serotonin levels will not allow, than I can stop crying if a man is screaming in my face and has just thumped me one. The abuse is identical in its power crazy evil, soul destroying effect and my Christian principles struggle with ever forgiving the housemaster, much harder to come to terms with than the actions of the comparison male, simply because he took his Hitler sized ego out on a child.

I digress. Andrew’s younger brother, Lewis, aged 10, has just (finally!) gone through the statementing process. He is diagnosed Aspergers and with very strong ‘dyslexic tendencies’.

The LEA is playing a numbers game and, I am told, on the sly, has come up with a note in lieu, probably reasoning that the excellent if incomplete help he gets from his junior school can keep coming from the school’s budget and is ‘good enough’. They agree he has the disabilities, they are just apparently arguing that the school is coping nicely at the top level of SEN care, so there’s no need to bolster that. The shits.

In just over a year my son hits senior school. Having been noticeable (and small and cute) from the off, he has slowly earned a personal understanding with the Headmaster, the Senco, the Caretaker/ maintenance man (a godsend, him) and many of the teachers and classroom assistants, at least the ones that have taught him before. They make room for him, give him leeway, he has his own headphones and his own desk in class, so he can block out noise and distractions in order to do some work. He has had the same classroom assistant for three years and she translates the world for him whilst also translating him for the world. After a long hard struggle for all involved, its lovely. Oh its not perfect, anyone new coming in causes tremendous upset – he cant tolerate change and is obsessive in his habits, is hyper sensitive to humiliation and will take a ‘correction’ from someone trying to be a new broom as an end-of-the-world scenario.

Put that child into a senior school environment, ten times larger and busier. He will need at least the first year to come to an understanding with the personal assistant they give him, if they give him one at all, and if (and only if) he or she is understanding and capable of seeing the world from two angles at once well enough to translate, only if that person intends and is allowed to stick by him through his entire schooling (locally that will be on two sites, with upper and lower school teachers) they still have no hope of saving him from all the mishaps and misunderstandings and attendant feelings of hopelessness and alterations to character and defence mechanisms that will happen in the meantime.

Even if that assistant has, by some miracle, the kind of respectful ear amongst the teachers that one can earn in a junior school, the place is just too big for everyone to be aware of every child with quirks. He already cannot remember the names of the children that like him, we rarely build relationships outside of school because he can never remember the ‘nice child’s name for me to seek them out. Ask him about people that do not like him, or said something mean to him once a year and a half ago and he can quote you chapter and verse; but its not too sensible to do that too often as the depression builds, he cannot see how people can change their minds once they have made a definitive statement. In his head, animosity once expressed, is permanent.

If I walk him to senior school, any senior school, without a statement as rudimentary protection, I am volunteering my own child up to be made into dog meat and a psychiatric client. I wont do it. I am putting this here, now, against the day that I have to take East Sussex County Council to Court, or that they take me to court, for refusing to screw his head up even further by sending him to senior school unprotected. So ESCC education department, on your way home from your nice offices and your nice meeting rooms in your nice cars with your nice paychecks, off to have your nice Christmas, realise that you are, however inadvertently, torturing me and threatening to torture my son in a way that will ruin his life and the family and make hell and Satan himself proud, for the sake of a miserable few hundred quid a term.

I will not have two Mensa candidate sons end up illiterate and on the scrap heap with no education, no self respect, no hopes and no social skills because someone, possibly just one person, wants to box clever with the cash books. You cocked up once; I think it fair to have expected the system to have developed since then.


Tags: , , , , ,