Children and adults alike are affected by the simple fact that our education system is at breaking point. For too long, little thought or attention has been given to those for whom the mainstream system does not cater. 'Inclusion' is a term bandied around to try and make everything sound better when in truth what often happens is an attempt to fit square pegs into round holes.
Most parents instinctively know when their child needs more support and attention than the 'average' child. Sadly, resources are stretched and children are often left in settings which are not suitable for their needs. This week's post reflects what is happening across the country in various mainstream schools - children waiting for diagnosis and staff unable to cope.
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My son is 6, and we are awaiting ASD assessment. He also has a speech disorder and emotional/social developmental delay, diagnosed at 2. We have been extremely lucky to have had exceptional support from first his nursery setting, who helped me fight to get an EHCP in place for him in time to start primary school, and we now have a SENCO there who is doing her utmost to support us.
But I’ve always known there was more to it - as you know all too well, I’m sure, the outside professionals who actually do the diagnosing/make the decisions seem to want to categorise your child. So when I would describe one of my son’s very much on-spectrum traits, they would assume that meant he did other things a certain way too. I spent 4 years trying to explain that just because he exhibits trait a, doesn’t mean traits b,c and d apply to him too, but without knowing why.
Then, back in February (during the last lockdown), my son’s aggressive meltdowns reached a new level. During one which lasted over 4 hours, he repeatedly hit and kicked me so hard and for so long in the face that he broke my nose. And I didn’t know why he was so angry, or why seeing me bruised, bleeding and in tears didn’t even make him stop (I now understand meltdowns much better).
We were again very lucky though, in that we were able to quickly access help from a local organisation who deal with crisis management for families for children with severe additional needs. Our caseworker came for a home visit a few weeks later, and within 30 minutes of listening to me she asked “has your son been assessed for PDA?”.
I’d never heard of Pathological Demand Avoidance before - none of the professionals I’d met over the last 4 years had ever mentioned it. Yet, as soon as I learnt what it was, it was like a lightbulb had lit up - the description was so accurate, it could have been written about my son.
“Finally” I thought, “now I understand what I was seeing within his autism that nobody else did”. But with it being so obvious to me straight away, I was confused as to why it hadn’t been mentioned before.
It turns out PDA as an autistic profile is not recognised everywhere, including in Cornwall (where we are). So although I finally have the missing pieces to help my son as he needs, the professionals making the decisions about his future won’t acknowledge it.
As I said before, the SENCO at his current school is doing the best she can. But my son has been struggling in mainstream school since last September, to the point that he has already been temporarily excluded twice, and has only been in for a couple of hours a day since they went back in March. He has regressed against all his EHCP outcomes, and is spending what short time he is in school separated from the other children (too many aggressive meltdowns when with the class) - just him and 1 or 2 teachers in a room, doing their best to keep him happy and calm while he plays. Any attempt to bring in some sort of learning, even well-disguised, triggers his anxiety. So he’s getting no benefit, educational or social, from being there.
I started the battle of applying for a place at specialist school in May, and the school SENCO supports me on this. Although I have tried my best to prepare myself for this to potentially take years of fighting, it’s still been disappointing to have had our first “no” from the county caseworker (denial of taking the request to panel). And even the SENCO has openly said to me that it doesn’t sound like the woman has actually read the reports at all, from the reasons she has given as to why.
So, when you say the system is broken, I know exactly what you mean. I’ve even directly asked the question of county “tell me what part of my son’s current situation you think is acceptable, or even remotely sustainable” (no answer of course).
But I have to keep fighting, so I will.
Thank you for taking the time to read my son’s story. I hope to use it one day to tell people just how broken the system is. But I haven’t got the spare emotional energy to do that yet.
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Thank you for reading. There are many more examples of families being failed by the system. Not all exactly the same as this one but they do 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 you feel able to share your 'not fine in school' experiences please email me at stephstwogirls@gmail.com. I understand it can be difficult for families to talk openly about this topic - for some there will be a need to stay anonymous. This issue of the outdated, failing system is huge and should not be ignored any longer.
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, 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.
Square Peg is an organisation making great strides in terms of raising awareness across different media formats, and also looking into legal challenges around attendance policies.
For the other weeks in this series please click the links below:
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