Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Angel of Mercenary

Someone rear-ended my car yesterday while I was waiting in a queue of traffic. My 8 year old ASD son was in the car with me at the time; thankfully he wasn’t hurt, though I am now nursing whiplash.

We went to see the GP, the two of us, because although he seemed uninjured, it’s not easy to get him to explain where or if he is hurting and I thought that if I was in pain, he may very well be but not be reacting. After the collision, he just sat there in the car, staring straight ahead, saying nothing at all.

So what do you think the GP’s very first words were after we sat down and told him we had just had a car accident?

He said, “Well, you know I’m going to have to charge you for the consultation, because we count these as private appointments. It’ll probably be around £50, because if we get contacted by the insurance company it can create a lot of paperwork.”

So, to recap, I am sitting, in pain, in his office, with my autistic son, after a car crash that was no fault of our own and before asking us if we are hurt, he asks for payment. Does this mean if we can’t afford to pay he won’t examine us? I had said nothing about it being in case we wanted to make a claim, I just wanted to make sure that we did not need medical intervention.

Shocked at his attitude and by the collision itself, I burst into tears, told him his receptionist didn’t mention a charge (although she knew we had had an accident) and I didn’t care if he wanted to charge us for the consultation, I just wanted to make sure my son was okay.

He then, completely unembarrassed, explained that the reason they charged was, “firstly, because we’re entitled to, and secondly because we have to fill out forms.”

Entitled to? If I’m not mistaken, are we not entitled to a medical examination because he is a well-paid NHS doctor, we are on his list and that’s why we pay National Insurance?

He then magnanimously gave us both a perfunctory exam to check movement and said he wouldn’t charge us this time (as if we make a habit of having our car rear-ended) but he wouldn’t fill out any paperwork either (which I had not asked him to do in the first place as I hadn’t even considered injury compensation). He said if we wanted to make a claim we’d have to come back for another examination which he would charge us for.

Later, at home, I couldn’t work out if I was more upset by the accident or by the doctor. While I understand that insurance claims create paperwork, his attitude was appalling. He could perhaps have explained that should we wish to make an insurance claim there would then be a charge rather than giving the impression that if we wanted to be examined we would have to cough up.

Is this what our increasingly litigious society had created? Angels of Mercenary rather than angels of mercy? Doctors whose first thought is their wallets rather than their patients?

This same surgery has also recently introduced an automatic phone system on a local call charge. This means if you have an inclusive call package, you end up paying extra as it’s an 0845 number and then you have to wait in a queue, racking up the call cost before being told you’re 18th in line for a connection. Previously, you’d get a busy signal if it was engaged, hang up and try again in a few minutes which I think is infinitely preferable. I wonder who benefits from the revenue the lo-call number generates? Dr Mercenary, presumably.