Monday, 4 October 2021

Not Fine In School. Week 3.

The phrase 'Not Fine In School' describes the current situation for too many children in this country. Of course it is widely understood that the unimaginable and catastrophic events of the past couple of years have led to an increase in the numbers of children struggling, but I think it's important to recognise and talk about how school attendance issues are not all down to the pandemic.
A black background with a multicoloured heart logo in the middle, with the words not fine in school, experiences of a broken system
I'm sure it is no surprise to regular readers of my blog to hear that I believe there is most probably a reason why a child would not want to, or not be able to, attend school. I'm guessing we would all agree that education is important, and I also suspect that most would agree that every child is an individual, with different characters and needs. So a one-size-fits-all approach is not going to suit every child, in fact far from it. It feels like our school system is becoming more demanding and less flexible as the years go on, and the cracks are most definitely beginning to show.

I've been contacted by, and spoken with, many families who have children for whom school is not a good place. Some children manage to attend but are then exhausted and have meltdowns afterwards as a result of the environment, the social expectations or the workload. Some children struggle to make it out of the door in the first place. Either way, it's clear to see that school is not working for those children and we need those in the system to look at the reasons why and provide alternatives.

This blog series is an attempt to highlight some of the issues when it comes to attending school, and to try to start conversations around what is or isn't being done well. If it's the latter, then solutions need to be worked on, and if the former then sharing good practice is always helpful. 

I'm positive that there will be other families out there who relate to the experience being shared by one family this week, especially in terms of having to chase for answers, struggling to get hold of SEN Officers and not finding suitable schools.

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Challenges in the education system began at pre-school for our family.  I had to do the walk of shame everyday to discuss our son's behaviour at a young age. He loved playing but hated sitting on the carpet, or being asked to do letter shapes and the more structured activities. We were anxious about how he would cope in reception but actually that was the best year he ever had in school! I am sure this was because of the teachers in Reception, the way they worked with the children and that most of the time it was play led. Year 1 then landed with a bang and we struggled with his first primary school for the next three years. 

We really couldn't understand how a very articulate and bright child struggled with reading and writing. His behaviour was challenging and the school couldn't or wouldn't find an alternative way of getting the best out of him.  Their behaviour policy had to be a one size fits all – after obtaining his red card on a Monday morning which would last all week there was no incentive for him to behave as he had already lost all the lovely incentives that most of the other children would get on a Friday. 

After asking the school repeatedly for help we decided on a private assessment for dyslexia when he was 7.  The assessor had an MBE for her services to dyslexia and diagnosed him as severely dyslexic and offered many strategies in her report.  His Year 2 teacher at the time just huffed and said all he needed to do was try harder!  In Year 3 we found out that he could play at the back of the class quietly as long as he didn't disturb the other children, his work was never displayed on the walls and looking through his books at open day just sent me home in tears.  It was then we decided to change schools for the beginning of Year 4.

The new school was smaller, very nurturing and they tried very hard to help our son, with his dyslexia in mind. Year 3 was ok but he still found school very difficult.  We always thought that his behaviour at school was driven by his dyslexia but as time went on he became more and more challenging at home too and we weren't asking him to read or write anything. Year 4 saw exclusions and many issues at home that were very challenging.  

He has been under Great Ormond Street hospital since birth and I reached out to them for help because he was starting to refuse blood tests and appointments that were vital for his health. They referred us to the psychosocial team and eventually to their CAMHS team who decided that we had to have local CAMHS support. This took a long time and was very hit and miss but eventually they agreed to moving us to the Neuro pathway for an assessment. It was quite a few months before we managed to get the assessment and one day while we waited I had had a light bulb moment when I stumbled on the PDA Society website. He ticked every box for PDA and so I put myself on a parenting course which was a life saver. I had previously been asked to attend a CAMHS course for children with anxiety but on day 1 when I asked about anxiety associated with autism they clearly stated that the course would not cover that. CAMHS did eventually diagnose him with Atypical HFA with a PDA profile and ADHD. I still believe if we hadn't got the right person on the day the diagnosis wouldn't have happened.    

At the beginning of Year 6 he started to school refuse and had a high level of separation anxiety. Over the next three months we struggled.  I made him go to school, sat in school with him for hours, came back at set times to show him that I would come back, but nothing helped.  His behaviour was very volatile and the school were struggling to cope. When I woke him up in the morning his first words were “I'm not going”. He would refuse to get up, or get dressed, would be very tearful and plead with me not to take him. I dreaded every morning as he did. He finished a week before the Christmas holidays started as we thought that the lack of routine and Christmas activities would raise his anxiety, and he was happy not to go to school. We tried again in January, but on the second day as I left him screaming and walked out the school gates he jumped out of the Head's window and ran out of school to follow me.

At this point the Head and I agreed that this was not doing anyone any good, especially him.  She spoke to the Local Authority (LA), I spoke to GOSH and he was signed off medically unfit for school. This was January 2018. The next months would have been a nightmare without the support of the school and especially the Head, who I am very grateful to. I read so many horror stories where the parents are left to fend for themselves and get no support.  This was the opposite case. When we had moved his school I hadn't given a thought to crossing county boundaries – the school was in a different county to where we lived but that didn't put off the Head who had to work with an LA that wasn't her own but still always managed to find the right people. The school worked hard to put everything together to apply for an EHCP assessment. This was refused, in one way we were astounded but in another, seeing all the posts about how often this happens, we weren't surprised. 

The Head was incensed and got on the phone immediately to the contacts she had made at our LA and we had the decision overturned without having to appeal. We finally got agreement that he could have an EHCP.  The whole process took months and although we visited a specialist school in county that looked brilliant, without an EHCP we couldn't apply. The EHCP did not come through until October (despite all the legal deadlines that should have been met) and by that time the school we wanted didn't have space. By this time we were on our second SEN officer. Unfortunately he didn't tell me at the time that no space is not an answer, and had we named the school on the EHCP they should have taken him. He then put out a request to other schools but despite chasing for weeks and weeks we had no response. We also went back to the original school we liked and met with the SENCo at the school. She said that she would review the paperwork again and that all should be fine. 

School holidays always seem to slow everything down even further.  After the Easter holidays I chased again for many weeks. When I finally got hold of SEN Officer number two and he said that they had had a re-organisation six weeks before and he was no longer our SEN Officer. When I suggested that either he or the new SEN Officer should have informed us I might as well have been speaking in another language.  So we then had SEN Officer number 3. She spoke to the original school who said that they still had no space and they didn't feel they could meet our needs. She then sent out more requests to another set of schools.....  

During this time we had been working with CAMHS and our son had been put on some anxiety and ADHD medication which made a big difference to his and our lives.  He was not the same child who had been school refusing but still had no desire, or in reality, had a fear of going to school.  We were offered home tuition, which he tried for a couple of terms for an hour a week and then some online learning for an hour a day – again not really successful for him. 

Our priorities had a slight shift as GOSH wanted to prepare our son for transplant as his kidney function was getting very low. CAMHS worked really well for him and with a Barnados's buddy we were able to plan a transplant for February 2020.  This took months of hard work from CAMHS, GOSH and our family.   

At the beginning of December 2019 I started my vigorous chasing of the SEN team again. With the 2 year anniversary of not being of school approaching I wanted to secure the right school place for a transition after the transplant, with the hope that he could transition in the summer term for full time in September 2020.  CAMHS had also raised concerns with the current school choices that had been put forward by the SEN team and they felt that they were completely wrong for our son. I had been having that conversation with the SEN team and in December I finally had a response which was sent two minutes before the SEN officer went on two weeks leave. I know this as I responded within minutes and received an out of office. She actually stated that she felt it unfair on the school that our son was on the school roll for, when he wasn't attending, and that they felt that they needed to do a full re-assessment on his return. She also omitted to say that it was over a year since his EHCP had been done and that that should be re-assessed.

I can only say that I was on the ceiling at this point and I decided to email the situation to the Head of Children's services. I didn't get a personal response but his PA responded very quickly and I was called by the Team leader.  We then agreed a plan.  We were appointed a very experienced SEN officer. The SEN Officer and the educational officer came and reviewed the EHCP at our house where we talked through the challenges and gave them a proper understanding of our son and the situation. The SEN Officer agreed to smarten the EHCP, apply to appropriate schools and said that she completely understood the situation and what was needed. Needless to say I still spent the next few weeks before transplant chasing and trying to get them to commit to deadlines. They applied again to a number of different schools in January.

The transplant took place at the beginning of February. My son and I were recovering in London at GOSH for five weeks and shortly after we got home, lockdown began. This was not part of the plan and our son had to be shielded until August so he wouldn't have been able to do this transition this summer.

Despite many emails and phone calls we are no further forward.  The SEN Officer said that schools weren't responding during lockdown.  My last conversation with her was that some of the schools had responded with a no and she felt that they were reluctant to take a child who hadn't been at school for nearly three years. I am also concerned that nearly 3 years down the line they don't know which school would be right for him. They say the next step is naming a school that will have to take him but my worry is naming the right school. They are supposed to be the experts but I still feel that when I put the pressure on they just have a flurry of activity applying to schools, without really knowing its the right place

I am sure that this is a county wide problem. Surely the LA's should have checks and balances in place to highlight children that are being failed – is there not a limit on the time they should take to find a suitable school? Should the government have a SWOT team who work across all LA's to ensure that they are working consistently, that there are enough schools to be able meet the needs of our children and understand what is lacking?  I completely agree with the statement made the other day that the LA's should be just as accountable as the parents for children not being in school. If the amount of money that is spent on refusing EHCP's and going through an appeal process and taking parents to court when their children cannot, not won't, attend the school that they have been shoe horned into, was used for putting right the gaping holes in this system then I'm sure that something could be done about this horrendous problem.

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Thank you for reading. There will be more examples of families being failed by the system in the following weeks. They won't all be exactly 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.

If anyone feels up to sharing your family's 'not fine in school' experiences please email me at stephstwogirls@gmail.com. I understand how difficult it can be for families to talk about this topic. Staying anonymous is necessary for many families for fear of reprisal. But this issue, of the outdated, failing system, is huge and should not be brushed under the carpet any more. 

For any parents and carers needing help right now, I highly recommend the brilliant Not Fine In School website (notfineinschool.co.uk). There are many supporters behind the scenes and in the linked Facebook group who have been, or are going, through difficult times during the school years. Plenty of knowledge is being shared which could make a real difference to other families. If the system is not fit for purpose we need to shout that out loud. Please help, by sharing your story or sharing this post to get the message out there.

For those who are keen to help others with this situation, I also suggest looking at Square Peg. They are making a difference in terms of raising awareness across different media formats and also with legal challenges around attendance policies.

For the other weeks in this series please click the links below:






For more information about PDA, please read any of the books in my post 
Books about the Pathological Demand Avoidance (PDA) profile of autism 
Stack of book spines, all books about PDA listed in the post link given

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.


What is PDA (Pathological Demand Avoidance)?


Ten things you need to know about Pathological Demand Avoidance


Does my child have Pathological Demand Avoidance?


The difference between PDA and ODD


Strategies for PDA (Pathological Demand Avoidance)


Pathological Demand Avoidance: Strategies for Schools


Challenging Behaviour and PDA


Is Pathological Demand Avoidance real?


Autism with demand avoidance or Pathological Demand Avoidance?




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