Time for Week 12 of my 'Not Fine In School' series. The idea of this series is to share real experiences of school and education from those families who have found the whole system far from 'fine' or even 'fit for purpose'. I chose to publish posts on Mondays because I know how stressful the beginning of the week can be. For many, the difficult times come on Sundays as the child realises they will need to return to school the next day, and the anxiety rises quickly.
There are too many children experiencing distress within our current education system. Some families are told that their children are 'fine' once they are in school, but the families experience behaviour and emotions both before and after school which would indicate that the 'fine' is simply the child's way of masking, of trying to fly under the radar.
Then of course there are many other families whose children do not present as fine in school. Many children, in fact, who cannot make it to school at all. Lots of parents and carers will have experienced the build up of stress on a Sunday in advance of trying to encourage their children back to school on a Monday. Lots of parents and carers who are called back to school after a short period because their child is not conforming or coping.
I think, on the whole, people do understand that children who are stressed or distressed for any reason are unlikely to be in a position to learn well. We, both parents and educators, need to act as detectives to begin to figure out what is causing the stress and anxiety. Is it the environment, the staff, the other pupils, the topics or subject matter? So many variables, and a system that is attempting to be a 'one size fits all'.
This series is a chance to highlight what is going wrong; how the education system is not simply leaving children behind, but actually chewing them up, spitting them out and then attempting to forget about them. Some parents spend years battling with the system, trying to get what is right for their child, and others are battled by the system, drained of all energy and left wanting to turn their backs on it completely. Provisions where staff truly understand seem to be few and far between.
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Our son is 9 and has been diagnosed with PDA. He started attending preschool at the age of three, at the local school his brother was already attending. He went for two full days each week. No concerns were raised about him during the year he spent there.
Soon after he started in Reception Class we began to receive phone calls from school about his behaviour. This was during playtime and lunchtimes. He was running off and being rude to the lunchtime staff. We managed to scrape through reception with the use of reward charts etc. He was meeting all the expected targets and was described as a very bright little boy.
Then Year 1, boom! He started hurting other children and staff, running off, shouting, screaming, destroying the classroom and other children's work. School tried so many strategies but nothing worked. We were on the brink of him being excluded.
No one could figure out why our son was behaving the way he was at school. We weren’t seeing the extreme behaviours schools were seeing. I was called in one day mid meltdown and it was like watching a different child - I just didn’t recognise him. At the start school suggested I speak to the GP. The GP said he was just a 5 year old boy stamping his feet and that school needed to deal with it. School then said they could make a referral to the school nurse which they did. She told me she would make a referral to the paediatrician and that we were looking at around a year's wait. She got me to fill in the Conners questionnaire which I did (but wasn’t happy about as I did not think we were looking at ADHD). Because the results of the Connors did not indicate ADHD the school nurse said he did not meet the threshold to be seen by a paediatrician (which was ridiculous as we hadn’t thought it was ADHD in the first place). It took them 8 months to decide he didn’t meet the threshold!!! School was at breaking point with him - I had a parent shout abuse at me because of something he had done to her daughter and the situation was just horrible and so stressful for everyone involved.
I was wondering if it could be Autism so started finding out more about it. There was just so much that didn’t fit for our son though. When I was looking into it I came across PDA - I had never heard of it so looked it up and had that classic light bulb moment - it was like the description was written about him. The mood swings, the demand avoidance, the Jekyll and Hyde behaviour, the fact they can present differently in different settings - it was all our son. I discussed it with my husband and he was in total agreement. The next day I was in a meeting with his Head Teacher and I asked him about PDA. He had just been reading up about it and he agreed too. He was due a meeting with the paediatrician about another child and he told me he was going to tell the paediatrician that he desperately needed him to see our son. After a long fight to see the paediatrician, our son was diagnosed with Autism (PDA profile) at the age of six. School put in strategies based on this diagnosis but it still wasn’t enough.
We applied for an EHCP and during that assessment the Educational Psychologist advised a specialist setting, so we began our search for a special education school. However, as our son is a bright boy, specialist schools told us they could not meet his needs as he was not behind academically. So we were stuck between a rock and a hard place - mainstream schools couldn’t meet his needs and special schools were saying they couldn’t meet his needs. It was such a hard time in our lives, feeling our son just didn’t belong anywhere academically. We were so shocked by the lack of educational provision available.
Even with a diagnosis professionals have still questioned the PDA. A worker from the autism team said she wouldn’t work with him if he had PDA????!! A Headteacher of the school the LA recommended in his EHCP said “PDA isn’t diagnosed in our area”. I told her he was diagnosed and she questioned why the paediatrician had diagnosed him! The same headteacher also said that in the past the school had been seen as “the school for naughty boys”! Needless to say we told our EHCP coordinator there was no way he was going there! She told us she didn’t know where else could meet his needs but the LA then refused him a place at an out of area private specialist school stating his needs could be met locally!!
We went round every specialist school in the area but none were suitable. I must say looking round the specialist provisions we were shocked at the lack of understanding around autism and how many schools, even specialist ones, were just “containing” children rather than actually helping them. Some were so depressing too - I came out a few of them in tears - it just felt like some of them were places where nobody really cared about the children. They were just seen as problem children.
Luckily we ended up finding a mainstream school with an autism base where he has been for a year. We still have difficult periods with him but he is thriving at this school due to his amazing teachers who have such a thorough knowledge of ASD and because they use PDA strategies. The thing that drew us to the school he is in now is that when we looked around the SENCO had such a good understanding and acceptance of autism. She absolutely loves her job and says it’s a privilege to do what she does. Little things mean so much - for example - our son was very reluctant to go into school this morning. When we got into the building he hid under a chair in the reception area and wouldn’t come out. His teacher came through and was asking him what activity he would like to start the day - she gave three options of things she knew he loves doing. She also said she could feel his heart was beating really fast and asked him if there was anything she could do to help him. She offered to give him a piggyback (luckily he is only small for 9) which got him out from under the chair and into the classroom.
I must say his EHCP has been his saving grace. The Ed Psych spent hours and hours with me and acknowledged PDA. His EHCP is heavily influenced by her report which has so many PDA strategies in it - it really is a fantastic EHCP - we feel very lucky to have got such a good Educational Psychologist who totally understood the situation and made some excellent recommendations. Although she was deeply saddened by our son’s story and felt that if more professional support would have been put into school sooner we wouldn’t have reached the position we did.
We also had involvement with CAMHS - in an initial telephone conversation the worker said he had spoken to the SENCO at his school and that our son sounded like a “smiling assassin”! I kid you not!! We then had an appointment with CAMHS which was not a positive experience as they were discussing everything in front of him and were asking me about all his difficulties in front of him. I ended up writing down on a piece of paper and handing it to her that he had been diagnosed with ASD and PDA. They then said they wouldn’t work with him as they don’t work with children with ASD?!
I am already dreading having to find a secondary school for our son after the difficulty in finding a primary school. The education system is so outdated. So much emphasis is placed on sitting nicely, listening and conforming, and that if you don’t do that you are seen as “naughty”. So much could be done within mainstream schools to help our children cope with school and to help them be more included.
Thank you for reading. Over the coming weeks there will be more examples of families being failed by the system. They won't all be the same as this one but they will all share common themes. It's important to remember that most of those families caught up in the system currently will not have the time or energy to be able to write about their experiences just now, so these will be only a very small representation of what is going on out there in the arena of education.
For the other posts in this series please click the links below:
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