This is the third in a series of posts that describe how we got to where we are today. You can read the first post about the long process of getting my son’s ASD diagnosis here and the second post about my fight to get my son an EHC Plan here here.
My son has Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD). He is diagnosed with Hyperacusis which means noises hurt his ears. He struggles with even small changes, crowds, noise, smells and lights. He has a very literal understanding of language, doesn’t understand social situations and suffers from anxiety. He went to a mainstream Primary School. This is our story:
Where we live most children go to school nursery the September after they turn three. My son was nearly four when he started. I knew he wouldn’t cope with full days so once he had the place I told them he would only be coming in for two hours a day. He went with a little girl who has been around since they were little and who was his comfort at school. The school constantly tried to tell me he would be behind academically if he didnt attend full time. I stood my ground. Hek some days I didn’t even take him, we went to the museum at quiet times and we went for walks in the woods and he could read fluently before his class started phonics. I gave up on Nursery in the end. He wasn’t happy and it was easier for me to have him at home.
When he started reception he was nearly five. He was with his friend again and the teacher was fantastic. He had a lot of problems but the teacher knew how to deal with him which was good. It began to be apparent that he was going to need extra support at school so this was also the year I took him to the GP to start the process of getting a diagnosis. You can read more about that in this post.
When he started year one the problems worsened. The teacher didn’t understand him at all, he was kept in at break for refusing to work and he was sat in the corridor at the naughty table. He ended up causing havoc because he had no break. He even managed to pull the hand dryer off the wall in the toilets because he was swinging on it. The reason he refused to do his work was that he couldn’t finish it if he made a mistake on the page or if he was worried it would go wrong but he couldn’t communicate that to his teacher so she treated him like he was naughty.
I remember clearly the time his teacher marched him to me crying after school. She handed me a piece of paper and told me he was being a nightmare. He had refused to do his work, been isolated all day and was allowed no playtime. She gave me the work to take home and said he needed to do it before tomorrow. The work was simple, it was drawing pictures of a story in order. I took my very distressed child home and after a lot of cuddles asked him why he didn’t do the work. “I cant draw a chicken” he said. He was that worried about getting the chicken in the first picture wrong that he couldn’t bring himself to do the work. I just looked at him and said “would you like me to show you how to draw a chicken?” he nodded and smiled and did that piece of work in two minutes. I took it to school the next day and the told the teacher the problem was he didnt know how to draw a chicken and she said that he had said that but she told him not to be silly and just try!
He started to hate school and getting him there became a huge struggle. Music lessons, assemblies and play times were too loud and hurt his ears causing him to start refusing to go to them and he was often in trouble for holding onto the door frame screaming that he didn’t want to do things. The school forced him. Tables were thrown, he had many meltdowns and didn’t do any work.
I tried to talk to the teacher and was told it was my negativity about school making him not want to be there! She wasn’t there every morning when I was lying to him, telling him it was great and he would have a good time!
In year two my son had a lovely teacher. She took the time to try and understand him. She got him writing for the first time and his biggest achievement that year was being able to cross out a mistake and carry on! This meant he could do some work at last. He was however split up from the little girl he had been with since he was tiny because the school deliberately split friendships and changed the children to different classes. He did not deal well with that because he was suddenly in a class of children he didn’t know. The tables and chairs were often thrown across the room and playtime, PE, music lessons and assemblies were very difficult for him. He didn’t eat at school because he hated the dining room.
He continued to climb the school fence, have meltdowns every day and I literally had to carry him to school kicking and screaming every morning. We had a few massive battles over homework before I decided to make a stand and refuse to make him do it.
In year three I put him in to a forest school with his sister one day a week where he thrived. There was a very high teacher:pupil ratio and only 12 children in the school. There was plenty of space, trees to climb and all activities were optional. Running away and hiding in a bush for a bit of time out was perfectly acceptable and his older sister was there to look after him. One day a week he was now happy. I would have loved to send him for the whole three days the forest school was open but it was very expensive and I just couldn’t afford it.
He went to his Primary school the other four days and found it increasingly difficult. He had a lovely teacher and a wonderful teaching assistant who really cared for him but he really struggled to be in the classroom and the playground and hated school. I had to drag him to there every day kicking and screaming and holding onto anything he could while I fought to get him down the street. The teaching assistant had to hold onto him while I left. He tried to escape over the fence many times. He was always in trouble and was so, so sad.
In year four he had a great teacher again but he hated the teaching assistant! She didn’t understand him at all and shouted at him all the time. She used to wind him up by doing silly things like turning the computer off while he was using it and making him do all his writing again because it wasn’t neat enough (it was hard for him to write because it hurt his hands). In the end it was so hard to get him to school that I had to keep complaining and the teaching assistant was eventually swapped with another class.
The new teaching assistant was amazing and she became the reason I got him to school for the next two and a half years of school. She took him off on his own on trips, gave up her lunch break to look after him in the classroom and acted as a one to one at the same time as doing her job. I will always be grateful to her.
This was the year he was finally diagnosed (waiting lists round here are really long!) and the school started to put little things in place to try and help him. I was told they were starting to sort his EHC Plan.
The SENCO at the time was lovely but she didn’t do her job right. The head teacher didn’t agree that autism was a real thing and thought autistic kids were naughty and refused to spend extra money to help them so my son didn’t get the Educational Psychologist assessments he needed or the help he needed. I have written in more detail about this in this post. I had parents tell the teachers to move their children to the other class because they didn’t want them near my son because he was so stressed at school that he constantly went into fight or flight. He even had an Occupational Therapist come in and do some work with him. She concluded that he was too stressed because of the environment
In year five he went in expecting things to be the same and to have the few strategies that were implemented in year four such as not eating in the dining room, being allowed inside at lunch time if the playground got too much and going into school five minutes early. On the first day I was told that they had expected he would grow out of his issues over the summer so all the measures put in place to help in year four had been taken away.
The head teacher had also declared that no child was allowed to not be in the dining room to eat and no child was allowed to go inside at lunch time.
My son clearly destroyed the classroom because he was so overwhelmed and couldn’t cope with all the noise and he didn’t understand social situations and he couldn’t deal with change.
I was told to pick him up for lunch time every day because he couldn’t cope in the playground. I took him home for a month and then told them they had to sort it out because it wasn’t legal to make me bring him out of school.
When he started staying at school for lunchtime again he was pushed over by a dinner lady because he shouted when she pulled his hood off. The head checked the CCTV and point blank refused to let me see it and said he lied.
He was frequently grabbed and held down by four teachers when he was upset. He was shouted at (shouting hurts his ears) for having meltdowns. He was made to eat in the head teachers office and she blanked him the whole time. She even complained to me that he was destroying school property by hitting his head off the wall!
I was called into school more times than I can remember, to find my poor distressed little boy crowded by six members of senior staff and I took him away from that place as much as I could.
He also had to leave forest school that year as his sister went up to high school. I informed the Headteacher at his primary school that he would be attending full time again and she told me she had hoped he would be doing more days at forest school and thought it would be better if I home educated him. When I explained that Im a single mum and I need to work she said I should quit work because my son was a nightmare at school! I nearly punched her that day but instead I went home and cried.
Now, you might ask, at this point, why on earth I kept sending him to this school and believe me I considered pulling him out every hour of my life at the time. I was however advised by the Educational Psychologist that if I moved him to another school then the whole process of getting him an EHC Plan would start over again and he wouldn’t have the evidence needed to get one, so it would be more likely to be refused. Knowing there was no way my son would be able to go to a mainstream high school, I felt I had no choice but to send him to his Primary School but believe me when I say that I fought so hard to try and get him a diagnosis, an EHC Plan and to get my baby out of that place. I made several formal complaints and complained to the school governors but this never worked because the school governors were long time friends of the head teacher who didn’t believe in Autism!
So year six came along, as did all the usual problems. My poor baby wasn’t happy at all. He struggled greatly with the environment and the other children. I was called in to see his teacher who told me he had been googling how to kill himself on the school computers and that she thought he was depressed. I have written about this part of our journey in this post.
Half way through year six my son got an EHC Plan! I haven’t really focused on our fight to get this as I have written another post about it which you can find here.
With the EHC Plan came a new one-to-one teacher who he initially wasn’t happy with because he was so used to his class teaching assistant and struggled to make the transition but he got there and the new one-to-one became his friend at school. He still wasn’t happy because he wasn’t in the right environment but at least he had her to help him and ease the stress a little for the last four months of Primary.
Incase you are wondering, this story doesn’t have a great ending because I didn’t manage to fight my son out of that school. It upsets me to this day that he had to endure seven years of hell at school because the system is not setup to actually help children like him. So many children like my son are stuck and struggling their way through mainstream education and to put it frankly, it just isn’t fair!
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