It's somewhat ironic that I finally got around to starting my blog series 'Not Fine In School' when my own daughter appeared to be 'fine', enjoying a new setting, but that after a few weeks, it turned out that she was in fact not fine at all. That's a post for another time though, and the full story of her education will be in the book about PDA that I'm currently writing, due for publication next year.
Meanwhile, I've had lots of emails from other parents and carers, describing how their children have not been fine in school, and I'll continue to share them here on my blog to highlight this issue of the school system. A system that doesn't suit far too many children currently.
Increasing anxiety can often lead to what has been labelled 'school refusal' where a child is no longer able to attend school - but as I've mentioned here on my blog before, that term is one I tend to avoid using. It suggests the child is to blame, when really the lack of suitable provision is the real issue. In this article, Fran Morgan asks 'Is school "refusal" really refusal?' Other terms which could be used instead include 'school attendance barriers'.
The Not Fine in School website has a great advice sheet for parents of children who are struggling to attend school.
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The other day, I was looking back on some Instagram posts and stopped abruptly at one of my son, beaming in his school uniform, about to start Year 5. The accompanying text said I was happy to finally see him excited to be going to school, buoyed on by having what would be the best teacher he’s had so far.
Cut to five days after that photo was taken, and my WhatsApp messages with friends show just how wrong it went – and so quickly. He didn’t want to go in. He couldn’t deal with it. The school refusal had started again. And just like that – we went from happy to hell again and that familiar feeling of being let down once again by the system.
And in our long journey in getting an autism diagnosis, this is not the first time it’s happened – and sadly, probably won’t be the last.
Firstly, no-one in that system pointed out my son might be struggling. I constantly got told that he was ‘highly sensitive’ and needed to learn to share. I was informed about his outbursts. I was not-so-gently told that maybe my parenting was the issue – and yes, even got sent on a parenting course.
When I took my son, aged 5, to the GP because he was hearing voices in his head, it was the first time anyone had mentioned the word autism to me. What followed is nothing out of the normal – a 3-year wait for to be assessed, which also involved being sent on the aforementioned parenting course just to make sure it wasn’t my fault. Thanks system!
The day he got his diagnosis was pure relief. I knew I wasn’t a bad parent (despite many fellow parents implying I was). I knew he was struggling, despite the school’s insistence he was fine and just ‘emotional’. I think they overlooked him, because he’s intelligent - always above average in class, his ‘issues’ weren’t affecting his schoolwork so they couldn’t be bothered.
The day he got his diagnosis, I thought that light at the end of the tunnel was finally here. I laugh at that now – as it was really just the beginning. You’re given nothing – or at least I wasn’t - just the website address of the National Autistic Society. So began operation research. I’m a journalist so this came easy to me, but I often wonder about those parents without that aptitude or time or energy – things that are often lacking when you parent a kid with special needs. I found groups on Facebook; a local charity, who have been a godsend; read endless books – all just to understand my son more AND to work out how I could support him.
Here’s where I expected school to pull up its socks and really dig deep to give my son the help he so desperately needed. And while my son’s experience wasn’t as bad as some, it’s been pretty horrendous. I was on a knife-edge the entire time he was at primary school, waiting to get that call to come and calm him down (the perils of being a freelancer, working from home) or for the teacher to beckon me over at pick-up time to talk about the latest ‘incident’.
The school told me outright that he wouldn’t get an EHCP and that I could apply on my own, but it probably wasn’t worth it. Undeterred, I sought the help of a professional who could help me navigate the difficult system. I ploughed my heart and soul into it. The first call I received from my local SEN officer ended with me in tears, when she exclaimed it was not only one of the best written applications she had ever received, but that she could clearly see how much he had been failed already.
But that was just the start of it. This was during the pandemic so everything took longer, and assessments were over the telephone – not sure how an educational adviser can really tell how a child is doing by having a conversation with him and me over the phone, but hey…
When he was finally awarded his EHCP, the school told me he had obviously got ‘worse’ over the years. No, your eyes were just closed because he was doing so well academically.
Why don’t schools care about welfare? It’s not just something that’s important for the SEN kids out there – all kids function better in an educational setting when they feel included, accepted and safe. It’s a question I’ve asked myself continually over the past few years.
My son started secondary school last month. It was an extremely tense time, not least because, of his own volition, it’s a grammar school. He worked hard to pass his 11plus – even though exams terrify the heck out of him – and he wanted to be challenged and learn more. I went to a grammar school, and I know they are a pressure cooker, but we went along with it.
How’s it going? So far, no school refusal but it’s early days – and I worry he may have peaked. However, I see a school with things in place, that understand children are more than just a tick box on that Ofsted report. He has a great learning assistant and has made friends. And even though the pressure is on, he seems to be thriving – perhaps it’s because he finally feels accepted? Perhaps because he knows he is cared for.
We had a big heart-to-heart the other day about primary school and the big transition into secondary. What he said broke my heart. ‘Mum, I hated EVERY day at primary school. They didn’t care about me. The kids were mean to me. It took every bit of strength I had to get into school.’ Inside of me a little bit died. Those years that are meant to be happy school years have been nothing but hell so far.
However, he is embracing secondary school. He loves the routine. He loves his learning assistance. He loves learning new stuff and he loves that there are many accommodations made for him to be able to learn.
I’m not expecting this to be a happy end to the story though – I know there will be bumps in the road, some bigger than others – and yes, my heart still drops when I get a phone call from the school, however, for the first time since my son started at school, I have this small fluttering of hope and I’m clinging onto for dear life as it may not last for long!
The system nearly broke my son and me. It’s a system that takes guts for parents to navigate and a will of steel for children with any neuro diversity to get through. I’ve explained to him that school isn’t everything. That his tribe is waiting for him out there somewhere. That he will find his place in the world. But all I’m hoping is that for this small, but important, part of his life, the system can finally find a place for him. We’re not asking for much – many of the things that make neuro diverse kids happier, also make neuro typical kids perform better. It’s just time it started seeing children as actual human beings, rather than statistics.
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Thank you for reading; it really helps if you can share on social media to get the message spread further. Over the coming weeks there will be more examples of families being failed by the system. 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 blog posts will be only a very small representation of what is going on out there in the arena of education.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). There are many supporters behind the scenes and in the linked Facebook group who have been 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 make a difference, I also suggest getting on board with Square Peg. They are making great strides in terms of raising awareness across different media formats and also with legal challenges around attendance policies.
If you feel able to share your 'not fine in school' experience please email me at stephstwogirls@gmail.com. I understand how difficult it can be for families to talk about this topic and for some there will be a need to stay anonymous, which is totally fine. This issue of the outdated, failing system is huge though and it should not be brushed under the carpet any longer.
For the other weeks in this series please click the links below:
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