But that was me pulling strings, the school certainly weren’t prepared and when I asked the school for a statement, I didn’t know what a statement was in those days, I mean I was so naïve. Had I known then what I know now, I would have pushed for it but I didn’t. Her statement would, had she had it, we only had about three months to run, before she actually technically left her secondary school and they persuaded me, went to tribunal and the tribunal said, “No she doesn’t need a statement.” I even got [doctor] from the [hospital] to come down to the tribunal. Even then they refused to give it to her. As I said, if I had known I would have pushed, even if it only lasted one day I would have pushed. But I didn’t know. So they persuaded me that it wasn’t worth it, blah, blah, blah. So we let it go. I know now that had she had that statement, it would have helped her in college. It would have helped her basically for the rest of her life, although technically the services supported, within the statement, finished at age 16. The implication of the fact that she had a statement would be with her for the rest of her life. So anybody out there if you are told by a school not to go for a statement, go for it, push hard, and get it, even if it only lasts for 24 hours, it will have an enormous influence on the rest of your childs life.

Mind boggling. I mean because I am American anyway. And then David said to me, it doesn’t matter, he said he never was in the process of it. He looked at it and was ohhhh. And it was, it was scary. But you know I felt that it wasn’t too scary that I didn’t think I could handle it, we could handle it, or that we needed somebody to guide us through it. You know, when they asked us for our evidence that part where they say parental evidence, I think I gave them fifteen pages of typed, you know, I mean we were so on top of it by that point that even though it is difficult, even though it was slightly confusing in some places because at first I wasn’t sure whether or not they had the ability to pull him from the school. And that was something that I was really concerned about, because it really was important that he stayed at the school he was in. And I didn’t want them to say, well no, we judge that he is not going to get the support, he needs to go here. And when that didn’t happen it was much easier.

We are coming up for a review and again I am like ee hee hee. But the people involved because they are, because we have been involved with them more than once you know the SENCO with the school, and the educational psychologist, has always been available through the school. And whenever they have come in and they see me they make a point to say hello me. And because they were so contactable I guess and the doctors and stuff that are involved, they have always been very supportive. I guess they have made it easier, you know, all along, and I guess that it takes out some of the worry about the process, because you do feel like you are bogged down by paper work a bit, you know, and by procedures slightly. And at first we only got fifteen hours and we fought five more, and five more and we gave no evidence and because that went through so easily – they didn’t fight us I guess is the point I am trying to make which gave me more encouragement and I feel more empowered to deal with now this one, because we are going to ask for another five more hours.

Without a doubt, without a doubt because we really, really do think that he could progress so much further and really reach, because he is not reaching his total potential just yet. That five more hours we really do think is going to make a difference. A bit more and I would be hey… but you know you take what you can get.

So your next thing was to get a statement?

Yes which isn’t as easy as it sounds [laughs]. You know getting a statement is a whole other battle, the same as getting a diagnosis. You are constantly pushing forward and asking to be assessed, asking to be seen, what do they think? And everybody else seems so laid back but you are living with it, day after day. They just see you once a month, you know, you do feel you are just a file on their desk. But with the statement, it is a very formal procedure you have to go through, and so you fill out the paperwork and you send it off and initially I just assumed that he would get one. I didn’t realise that people were turned down all the time and you know you have to really, really, really, really be struggling before they will even consider assessing you and unfortunately the school… I don’t know if I am being unfair if I say they weren’t terribly cooperative, but they just gave the line that he appeared to be coping which as far as the LEA is concerned means “well he doesn’t need a statement then”.

So we kind of like left it another six months as you have to and went through the procedure again and of course in that six months it was getting harder to get Callum to school and the signs were much more obvious and the teachers did have to admit they were struggling because just the procedure of getting him into class at 9 oclock in the morning was difficult because he was so upset. He had to be pulled away from me. He was in tears. We had to go in early so it didn’t upset the other children because it was starting to upset the children in his class and that needed an extra teacher. So it was requiring more hours of their time.

And then all of a sudden three months later the head teacher phoned me up to exclude Alex and it turned out that this was in the October and all of Alex’s support that he received at school action plus which is supposed to be five hours a week (and the ten hours extra help*), but he wasn’t even getting that. The specialist teacher team had said that Alex needed help moving around the corridors. If you think you have got 1300 children in a school that was built 50 years ago, in corridors that are too small, and he has a real hypersensitivity to sound so every time the bells were going it was irritating him. And the other boys in the class were kicking him, tripping him up, Alex had a bag. He has a laptop, he has all, you know, PE kit. So he turned round and bashed one of them and so he was excluded for that. But my question was, “Well where is his LSA where is his support that you say that he doesn’t need, but it is in this report from you know, the LEA says, he needs help in the corridors.” “Oh we have taken his support away. It has gone to the year sevens.” And I said, “No, no, no, that is Alex’s support.” (Again the headteacher was a relic from Thatcher’s Britain; very autonomous and Dickensian.*)

Anyway I had had enough by then. I contacted the Children’s Legal Centre is [town] and a very good solicitor there took the case on and we took the school to the SENDIST Tribunal for disability discrimination and a finding was recorded against the school.

Well I have got a statement review next week and obviously I am not looking forward to that. There is, you constantly fear, that hours are going to be taken away or services are going to be taken away, or there will be some budget cuts that will come in and affect you. It shouldn’t be like that. It should be about helping Robert now in order that he can contribute to society later, so that he can get a job, he can work, he can live an independent life which is what I want for him. All I want for him is what any other child can have and what his sister can have. I just want him to have the same normal ordinary things, an ordinary life, that other children can have.

He just needs a bit of extra help, particularly now in order that he can access that. That is all I want for him. I don’t think I am asking for too much and I just want the services and bureaucracy to help me to get that for him. And it is not easy. It is a struggle, it is a fight. But there needs to be more awareness of the issues, there needs to be more understanding and a greater commitment to person centred planning.

And using that, not just in terms of the sort of older children, but use that with younger children and try and get the different authorities. We have local strategic partnerships we have all the mechanisms in place pool budgets, commissioning, we should be able to do it but it just isn’t happening on the ground. And it should be happening and it isn’t. I find it, really, really difficult that policy decisions are being taken nationally and locally which are not moving on inclusive education, they are not moving on pool budgets and they are not moving on what is best for children and it is going to take a long, long time. Maybe it’s a generation but I don’t want this generation of children to miss out.

And I think a lot of the time the education system puts, not always their own fault, puts so much sway on maths and reading and writing and all that stuff and that is all because of government initiatives and performance indicators and everything that they all have to do the numeracy hour and the literacy hour and get the kids to do these things that there is not so much focus on the social skills and all of the aspects of self help that people actually need to learn because a lot of the time most of the learning that goes on at school is in the playground. And of course if they sit under a bench or hide away in the toilet, or go in the library, they don’t get any of those kind of things and a lot of the time they don’t give people cover in the playground because it is always somebody sat next to them in class and then it is throw them out into the yard and get bullied or do the bullying or whatever it is and back into class again, whereas in reality you could teach structure and he means that and she is doing that within the frames of social environment so … and that was never given to Luke, because Luke has always been so brilliant in a lot of ways, Lukes never been seen in need of any particular help more than an odd bit of social skills stuff. And so that is how he came out.

Joe struggled through school I have to say. We have been through about three and he is now in a mainstream secondary school with a SERF unit attached to it, Special Educational Resource Facility. And I mean we have our moments. Not to say that they understand him fully and it is perfect. They don’t and it isn’t and I go in an awful lot and have an awful lot of talks with him and an awful lot of things go on but in reality Joe is an extremely difficult child. I wouldn’t like to teach him. I wouldn’t like to teach him on my own never mind in a class with another 30 odd. So even though he has got a support worker, it is constantly saying, stop talking and keep still. Are you listening? And as well as teaching him all the stuff that a kid with Asperger’s needs which is all the social stuff and a lot of the time because ADHD accompanies, autistic spectrum thing, Asperger’s or autism, people in the education system or in the medical profession only see the ADHD and they see this great big buzz of activity and don’t realise that underneath it is still the same confusion as someone that is sitting in a corner with their face to the wall.

And all he does is throw himself in as the class clown and make a great big noise and a great big mess and get himself kicked out of virtually every class. Whereas it is because he doesn’t understand the language and because people use idioms and metaphors and they don’t speak clearly enough and because he has got such extreme sensory problems Joe really has such acute hearing and smell and vision and visual distortions and perceptual problems that that really rules his life, but people usually only see his ADHD stuff because he is just this big dangly 14 year old with a dummy in his mouth most of the time [laughs].

In fact that is one of the great complaints I have about the way autism is dealt with and any mental condition like that, it must be the only kind of condition where the cure is national curriculum. The intended cure is the national curriculum. There is no treatment. There is nothing any one does. There is no. Sorry I will rephrase that. There is something that can be done. There is lots that can be done but there is nothing that the state is prepared to do, other than administer the national curricular. They simply lower the age. There is nothing else they do. If you are ten years old and you are autistic. Well we will teach you the national curriculum but we will treat you like a 3 year old. And they do the little tick boxes. Done French, yes. Done English, yes. Done history, yes. Done anything for the child. No. But that isn’t in the tick box, so it doesn’t matter and it is completely, it is completely ridiculous. A total waste of time, money, and everything and it is nothing to do with money. It is to do with caring about the children.

You need a certain amount of money to run a school I suppose but people with autism need, they need training, therapy, help in understanding their condition, strategies for coping. When they go to school I don’t think they even tell the children they’ve got a condition. They don’t say, “Look you have got autism. This is what it means. This is what we need to do.” They don’t even tell them that. They just say, “You have got to colour that in.” And if your disability gives you a spatial awareness problem that means you can’t colour things in, then, “Oh he is refusing to colour it in. Right I will pin him to the floor. We have got a refuser.” That is the way they deal with. But they don’t say to the child. “You have got autism. Part of your particular form of autism is a spatial awareness problem. Let’s see if we can do some special training to help develop this.” They don’t do that. It is just treat them like normal child though at lower level. And if they can’t do it you punish them. That is not the way it should be.