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Something Really Made My Blood Boil

edited December 2011 in Not Sports Related
As some of you may know, my son has some behaviour problems. He has amongst other things re-active attachment disorder (RAD) and Attention Deficit Hyperactivity Disorder (ADHD). He is dyslexic as well with a reading age of 8 years. He is currently being assessed for autistic spectrum disorder (ASD). 

He is a fantastic lad but he can be extremely challenging especially as he is now about to turn 13 and is physically very strong and getting stronger on a daily basis

I have fought long and hard to get him support in school and also help with anger management etc. After being told aged 6 he wouldn't even meet the criteria for an assessment, by the time he was 7 he was awarded a full Statement of Special Educational Needs(SSEN) which was originally per week 1 to 1 support of 25 hours in class and 5 hours lunchtime supervision. 

He now boards weekly at a private school which specialises in emotional and behavioural issues and dyslexia. His education is funded by the state and we also receive Disability Living Allowance from the state at the highest level for the time when he is not boarding.

It has taken years of fighting bureaucracy, ignorance, incompetence, intransigence and lack of funding to get where he is. I gave up work for almost three years to fight this fight and it still continues.  When he went to his current school he had, in their words, learned nothing in the state sector - he was 8 years and 5 months old. His reading age was assessed as below 6 (which means "can't read), yet his underlying reasoning age was assessed as 13 years plus.

In so far as it is possible to project the future he has the correct schooling for his needs, is expected to reach a minimum reading age of (I think) 10 plus which basically means he will be able to read without assistance. His school do GCSE's to A Level and students regularly go on to Uni. He is expected to be in a position to take advantage of this opportunity provided of course he wants to do it.

What made my blood boil was a conversation with a neighbour who's youngest son is 9 and attends my sons former state school. He has a very similar behavioural profile as my lad, is continuously being excluded from school for behaviour which amounts to "fight and flight" or uncontrolled outbursts. 

She tells me that the school won't put his name forward for a SSEN assessment - apparently there are children more needy than him. He is falling way behind his peers and yet it seems it is his mothers inadequacies as a parent which is used as an excuse for this child not being given the support he needs. I spent a couple of hours with the family tonight (my son is friends with her elder son). She is a single mum (father has been denied unsupervised access due to physical violence). She is partially disabled and although she has help from her mother, she clearly is struggling to cope with this lad who is perhaps - more challenging even than my son at a similar age. The boy has some prescribed drugs to help him with his lack of control - I shudder to think what he would be like without them.

I have offered them my wholehearted support to assist them in getting him an SSEN.

Frankly this child needs to be in a specialist school/unit where they can help him to learn in a therapeutic and nurturing environment rather than being dealt with as a naughty child. 

The time spent with the lad tonight and on other occasions showed quite clearly a very sensitive, intelligent boy who has massive self-esteem issues to go with the other areas of concern. He needs nurturing and building up, not threatened and undermined. His loving mother needs help to bolster her parental authority, not treated like a sad inadequate. She needs to be helped to regain confidence in her ability to parent him and regular respite to help her keep her reserves of energy fully charged as he is a boy who's survivalist energy has ground her down so that her tanks are empty.

I am just angry for them that they are being failed by the system. Surely it was for those who cannot easily fight for themselves that our state safety net was provided? 

I know from other threads that some Lifers have experience of caring for children with special needs so any wisdom you might pass to me that I can pass on would be really appreciated.


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    edited December 2011
    The system exists for the benefit of those whom work within it rather than those it is supposed to serve and should be challenged whenever it is found wanting.

    My experience, albeit at a less severe level I suspect than you and your neighbour have experienced, is that as a parent you need to shout and keep shouting to achieve anything within the special needs system and be there for the child at all times. But I'm teaching my grandmother to suck eggs as they say telling you that!

    I'd say your neighbour is lucky to have you in her corner.

    I wish you both all the best in getting the right support for this little lad.
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    My wife is a social worker who has recently started working a 'child in need' department having moved from working with physically disabled adults. I can't personally offer any advice but I can say that this is a similar story to many she's comes home and talks to me about. It seems that certain local authority and state funded institutions automatically say no the first time anyone asks for help. It is only those with the where-with-all to fight their corner or with a friend/relative who can fight their corner that eventually get the help they are so often fully deserving of.

    I don't understand the full reasoning for this, but it is doubtless partly a response to the finite funding these organistaions work with and the people who would abuse the system for their own ends given the chance.

    I agree though that this approach hurts the most needy who are surely the one's the system should be looking to help most, it frustrates and angers my wife on a regular basis and it usually does me when she tells me about it later in the day. Anyone who has to go through these fights has my upmost sympathy and respect.
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    Not much help, but it is far harder to get a statement now as schools no longer get the extra cash for pupils with statements to finance the 1-1 hours. This coupled with crippling of local authority provision for specialist teaching services in the last couple of years makes life difficult for those children with additional educational needs.

    As has been said make yourself a ,polite,nuisance about this issue and hope for the best.

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    Firstly Bing you have my sympathies. Fighting to get a child the right SEN provision is exactly that- a fight that it really should not be for those clearly in need of alternative education or additional support in a mainstream setting.
    I have spent over half my teaching career in SEN and I have to say there needs to be an open and honest debate about the way forward with special needs education in this country. Sadly with funding issues, proposed fundamental changes in 2014 ( which should help, but might end up being a cop out) I fear that the fundamental overhaul needed will not happen.
    I will write more on this if I get time later, because there are huge pressures on the system which needs explanation.
    In the meantime, good luck to you and your neighbour.
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    Mate you have to fight for everything, I have three kids (Alice 11, Ellie 8 and Harry 4), the two older ones are doing fantastic at school, especially Ellie who is on the gifter and talented register. Yet Harry from the very start was diferent he was late at all his milestones and we have very little help, the only thing he has been currently diagnosed with is hyperflexibility/motion of the joints, affecting his ability to walk sit and do simple tasks like grip a pen.  He should now be at school, his case workers did everything they could to convince us that "inclusion" at a normal school was the best thing for him, our chosen school refused to take him on grounds that their facilities did not meet his needs, especially being in nappies.  We have trapsed around so many schools since and the only one that wanted him and made us feel welcome is a special school 25 miles away, the support now say they agree with our decision.  Shame they could not tell us this earlier.
    As for a Statement we went behind their backs to start the process as everyone tries to put you off, just go for whatever you need, Partnership for Parents can be a great help, if you need anything else inbox me and I will ask the wife. 
    Harry is 4 and a half and has the following words, that he uses on a daily basis, no, please, like, hello, hug and kiss.  He can only walk for about 200 yards before his joints force him to sit down and the specialist just say it is too earlier for any diagnosis.  All I know is that I love my son and would not wish him any other way, but it would be nice to not have other people treat him like shit when they discern he is not "normal".
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    you have been there and done it pal, give thyis mum all the support you can and help, from experience i know how hard it can be to get anywhere with these ignorant twats at local council level, and school level,


    she needs you mate


    jump straight in and get that kid an education he deserves

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    Good on you Bing for trying to help this family. The process will exhaust everyone, not least because it is now designed to NOT spend any money, and yes that does mean that the weakest will go to the wall. The only thing that LA's now respond to is the threat of legal action and exposure in the press. The rest of the time, the LA's are very busy working out ways of raising more stealth taxes from the elderly and highly vulnerable. We're moving back into the future, and I reckon we will all be having to choose which battles we want to fight. All the best Bing.

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    I can offer no help, assistance or advice. I can only wish you good luck. Your next door neighbour should feel very lucky to have someone like you who is willing to help her and give assistance when she so obviously needs it. Good on you Bing. 
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    Bing, simply being an understanding friend is invaluable, whatever else you manage to achieve.

    The global problem is, as has been mentioned before, the finite resources available. Institutions such as schools are not able to access funds according to needs. The state works out an average amount, and expects all institutions to manage within that. The move to Academies makes this problem worse because schools can no longer get the help of their local authority if they have an unusually high number of pressing cases.

    It is a bit like funding maternity leave, if 20% of teachers in an Academy all fall pregnant at the same time, the school is basically scuppered in funding their absence given that the overall budget probably only allows for 5% of staff on maternity.

    Perhaps the present government thinks that all of these difficulties of need will be sorted by the charities.

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    I think the default position being no, as pointed out by Exiled, is due to those crying wolf. It seems many parents cannot just accept that their child is a herbert (clearly NOT the case with Bing and his friend). Good luck to your friend and you Bing, she is lucky to have you helping out.
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    Echo the comments about her being fortunate to have you in her corner. Good luck. The system can stink.
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    Getting an SSEN is a must. My nephew grew up with dyslexia and associated short term memory difficulties and the main problem was getting him assessed. Once this was done, all that was offered was a couple of hours a week personal tutoring or a school that was a catch all for a variety of disabilities, physical, behavioral etc and we rejected this. My sister, single parent got him burseries to a private boarding school which had provisions for his problems. He got O levels, has a decent job, lovely wife and has made us proud. Despite his Surrey roots he is of course a Charlton fan.
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    Bing, good on you for being so helpful I wish I  had neighbours like that, as do probably many others. Only advice I can give is to persevere with it. The local councils are not given statements very easily at the moment it is terrible I heard that bexley are not giving them at all anymore, not sure how true that is but nothing surprises me with them.

    cfgs good luck with the statement, sounds to me like you should get some help, even if it means the LEA contacting you asking why your child isn't in compulsary education then have to answer your questions when you say why. 

    with DLA, SEN and all other help it seems as though you always need to appeal, it is as if they decide that if you really need it you'll fight for it, but maybe I'm just being paranoid. 
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    Times are changing as social and health costs are being cut back in all directions. My daughter went through the statementing process when she was 8 and ever since Kent CC have been very helpful, but this was only after a massive amount of negotiaitions between my wife and the relevant Council personnel. This was though quite a few years ago and from what you say the process has stagnated significantly.

    My only advice is that which I received a few years ago and certainly helped us at the time. It was to keep arguning your case, or in this instance your neighbours case, on a factual non emotional basis. Whilst you might want to scream and shout about all the injustices, simply state the facts and ask what you need to do. Easier said than done I know, but keep patient and determined in your quest. Best of luck. 

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