I have M.E, FMS and suffer from chronic anaemia. On top of these problems I am also on a medication regime which includes 4 different medicines which cause fatigue. Meanwhile, my son has autism and ADHD. It’s 6am and he’s only just fallen asleep. At 9am I am supposed to home educate him.
Almost 3 years ago I had to remove him from school. He was being bullied, every day having to cope with being called a “retard”, “mental” and a “moron” and having children doing horrible things to him such as pulling his trousers down in the playground. In addition to this the school had made the aim of him writing just 3 words per day. He was quickly falling behind his peers.
When he was in Infant school, a wonderful school with a play based curriculum, he coped relatively well. They accessed a lot of advice from the local special school and he spent one day per week there. They used several interventions. Giving him his own desk, a reward box, TA support, a special box, sensory toys, a laptop, a private white board, visual schedule and many other things. Despite consistent meetings between the infant school, ourselves and the junior’s regarding his transition, as well as the infant school giving the junior school all of his equipment, the junior school did not put any of these interventions into place. We made frequent complaints to the junior school who told us he was settling in fine and much better than they expected. Of course this was in the first month when little work but many settling in activities were implemented. Then things took a turn for the worse and his Independent Education Plans began to reveal that there was trouble in paradise. Yet, they still didn’t reintroduce the interventions previously used and had lost the equipment given to him. We bought some equipment ourselves and took it into the school, but it still hadn’t been used properly. Things came to a head when his teacher in a very difficult meeting, angrily told us he was unteachable it was then that we decided to remove him from school.
Due to staff cuts, and funding shortages, my son only received his final diagnosis last year. When he was 5 we requested for him to be assessed for autism. When he was 6 we finally had an “Options meeting”. This was where they would perform a pre-assessment to decide whether they thought it was worth putting him forward for full assessment. Me, my husband, and my son’s SENCO, attended a meeting with a CAHMS doctor. She said to us that he was probably autistic, but due to funding cuts and the fact that we were coping was there really a need for him to go on to full assessment, could she not, instead, write a letter saying he was probably autistic and could we not use that instead? The three of us insisted that it would be entirely inadequate. We were then placed on a waiting list for the formal assessment. Due to staff repeatedly leaving and often not being replaced we had to wait another 3 years for this assessment to begin, which then took 9 months to complete. All this while he was having the struggles in his life and had to leave school at the age of 7. Eventually he was given a diagnosis of classic autism, for which he met all diagnostic criteria, and combined type ADHD, he had to fulfil 6/18 of the criteria for this diagnosis, he met 15. The staff dealing with him could not believe it took so long for such an obvious diagnosis to be made, unaware of the structural problems which had delayed this. As well as his diagnosis it is thought that he may have dyslexia and dyscalculia, though it has been decided that it is not worth the expense of testing because the interventions will be the same either way.
When he was 8 I became too ill I decided I could no longer physically cope with home educating him. He spent long days being taught by the internet, or lying in bed with me for his lessons. Everywhere I went I was told he couldn’t be statemented from home. I was told that he would have to go back to a mainstream school where they would eventually statement him. That was an impossible answer for us. There was no way we could place him back into the same situation again. So we struggled on: him having an education that was inadequate but better than the alternative and me struggling every day to do my best but feeling incredibly ill. Eventually when he was 9 and undergoing his formal assessment his mental health nurse looked into the situation for us and discovered that he could be statemented at home.
In the summer we began the statementing process. This is still ongoing. It has involved assessments with both an education psychologist, and a paediatrician and we have had to fill in many, many forms gathering evidence from the last few years from the wildest places. Midway through this process, we were told we had to begin searching for a school. I emailed every single school in the area. Almost none of them had places. Eventually we found a couple which did. We looked around the schools, one of them immediately brought up the matter of money. Did we know that the schools have to find the first £6000 of a statement now and that taking on statemented children is a large burden on school budgets? They were unimpressed with his level of need to an extent that we did not want to place our child in that situation. The next school we found were much more enthusiastic. My husband visited the school who told him they would take on my son before the statement was completed and help us fill it in. They had numerous facilities that could be used to help him with his autism and they would love to have him. This sounded like the answer to our dreams and shortly afterwards we sent him for a visit to the school. He loved it and they continued the rhetoric to him, telling him he’d be welcome there and would he like to come back for a trial lesson. As he left my husband left the proposed statement with them so they could better understand his needs. The next day I emailed them asking when he could go in for his trial lessons. They emailed back. Some issues had been raised from reading the proposed statement and so they would need to have a meeting with me. The meeting was scheduled for a month later. In statementing time this was significant, it meant that they would no longer be able to help us write it.
I went along to the meeting, still hopeful, but nervous. They hadn’t realised his needs were so significant and they weren’t sure he could keep up in a school such as theirs where different years worked together. It wasn’t long before that conversation happened. They wondered if we knew that funding had changed for statemented children and did we know that they would have to foot the bill for the first £6000 which would be a huge burden on the school’s budget. My heart sank. I asked them to be honest with me and tell me if they thought they couldn’t fulfil his needs. They couldn’t legally answer this directly but told me that statements don’t work the way we think and that if he was, for instance, given a statement for 1:1 support for 20 hours a week, this would probably actually involve about 5 hours of 1:1, some small group work and the rest being used for other children within the school who need help. Knowing how much I struggle to get my son to stay on task, the fact that he can’t write for himself, and that even with a predictive text writing programme on his laptop it still takes him an hour to COPY a paragraph, and hours to do so when he is making the information up from scratch, this would be entirely inappropriate. They also wondered if he wouldn’t be better served by attending a special school to help him get into a special senior school which he would clearly need. This sounded like a pragmatic way of giving us more reason not to send him there. Nonetheless, I had no other options and so arranged for him to have a trial lesson, which was arranged for over a month in the future. I tried to calmly tell my son that he probably wouldn’t go there but we had to keep our options open, however, they had sold it to him so well at his previous visit, my warnings were not going in. He went for the trial lesson and my husband had a chat with them were again they attempted to dissuade us from sending him to the school.
As our last option we managed to get a meeting with our local special school. Alas they only gave us 10 minutes of their time and so we have little understanding of whether the school is appropriate or whether they can accommodate him. They don’t really want to talk to us at all until his statement is complete. His Educational Psychologist said that he is possibly too intelligent for special school, and that the chances of him making progress there are very slim, but that at least he wouldn’t have to cope with being called a “retard” and the transition would therefore be easier.
This lead to me to write to our MP. I told him that we were concerned that schools were being dissuaded from enrolling children with SEN due to the funding changes and explained what had happened to us. He wrote back to us with one letter from one of the ministers with the DfE who assured us this wasn’t happening, despite us having direct experience of it ourselves, and another letter from a senior member at the LEA who again told him this wasn’t happening, despite us having direct experience of it, but also that they were preparing a statement that they thought we would be very happy with and that we were to expect to receive it by mid-December. It didn’t arrive. I’ve also written back to my MP informing him that this isn’t the case, and that we know it is happening because it’s the very reason we can’t find a school for our son. We have not been offered assistance as a result of these letters, I have simply been managed and fed spin which goes against my direct experience. Yesterday I emailed the LEA asking them when we would finally receive it and they said, miraculously, that they just happened to be working on it that day. Hopefully we will finally receive it soon and we can begin again in our search for a school, though this time we will only be looking at special schools, which are few and very far between.
My son turned 10 a fortnight again. I cannot believe that we started all of this so long ago and yet we’re still so far away from meeting a resolution. He is now on medication which stops him pacing the hallway and spinning as much but which has done nothing for his concentration and absences which is why we made the decision to try medication in the first place. I am sick and exhausted, and scared and frustrated and perpetually guilty. I used to believe that every child had a right to an education. I used to believe that the state systems would not leave someone who is as sick as I am to home educate a child, badly due to lack of energy. He is barely socialised because I can’t get him out of the house. I’m reliant on my husband taking time off work and my father who has several life-limiting conditions himself. My husband also has a disability, and recently had to have an operation on a flesh eating enzyme emitting tumour. None of us are coping. None of us are being adequately supported for any of our varying conditions and needs. We are a burden on the state who act as if their only commitment is to manage us and make us go away. Every step along the way we have tried to act like dedicated parents, we have crossed every T and dotted ever I. We have fought tooth and nail for every little thing we have received and we have received very little.
Right now I am so exhausted. I don’t know if either I or my son will be capable of teaching and learning today, which is another little step backwards on a long path of moving backwards. I am not receiving carer support from the state: because of funding cuts I no longer fulfilled the criteria. But the good news on everyone’s lips is that I have another slightly older son who can be a child carer! My doctor wants me to push adult services again, I don’t even know if I have the energy to do the pushing anymore. Most days my son now even has to make his own sandwiches, and if I don’t have a drink handy (normally something woefully bad for you like coke) I can go a whole day without a drink. None of this is adequate. I’m quite sure our human rights are being trampled on and I’m beginning to wonder if this government believes that people with disabilities are even human enough to be owed them.