Having children with SEND makes life more complicated in so many ways, especially for the many parents who have uncovered our own neurodivergence as part of the process.
But it doesn’t have to be THIS hard, does it?
Unfortunately, it seems like it does, at least according to the whistleblower from a local authority who recently told ITV News that everything we always feared was actually true.
They – or at least some of them – really are working against us. But at least we now know that we ARE being gaslit.
Sometimes as a SEND parent it can feel like you’re taking part in some kind Truman Show experience, where all of the case workers you have to deal with on a regular basis are actually actors creating drama for your exciting storyline.
At least then it would feel like there was a point to it all.
Our story
My youngest son is 11 and has been in mainstream education so far. But he has found it increasingly difficult, especially in Year 6, culminating in SATs-related burnout and school refusal.
We had found an ideal specialist school that would not only meet his needs but also offer him a route to qualifications and a future he wouldn’t get from mainstream.
However, our LA decided that his needs could be met in a specialist provision within a mainstream school. I should point out at this stage that my oldest son, 13, has been in that provision for almost two years now and is thriving, so it’s not the case that these kinds of settings can’t work.
We applied for mediation and entered a four-month nightmare of miscommunication and frustration
But it wouldn’t have worked for my younger son because he would have been learning in mainstream classes.
After this school was named on his EHCP we requested a meeting with the LA to discuss it. This was refused. So, we applied for mediation and entered into a four-month nightmare of gaslighting, miscommunication, incompetence and frustration.
The only date that was ever confirmed for our mediation turned out to be a Bank Holiday when no-one else would have been able to attend apart from us and the building where the meeting was meant to take place would have been closed anyway.
That pretty much sums up how mediation went.
Because this was getting nowhere, we also appealed and began the tribunal process. This was scary but felt like the only option left.
This was at a time when my father was entering the final days of his life, which was already hard to cope with my own AuDHD, while dealing with a law firm hired by the local authority.
To say I didn’t have the bandwidth to deal with them at that point would be an understatement.
In our desperation, we also reached out to our local MP, who has a decent record on SEND, and asked for his help. This was a slow process – of course – but did turn out to be useful in the end, if only because it compelled the local authority to actually tell us more of what was going on in their decision-making, for the first time.
A constant battle
And then, all of a sudden, the clouds cleared.
We received an email from our EHCP coordinator telling us that a place ‘had become available’ at the specialist school and would we like it? Yes, we would.
So there is a happy ending.
We didn’t need or actually end up having either mediation or a tribunal to get our son into the school he needed to get into.
He’s now had some transition sessions there and has told the staff there that “This is the school for me.” Not every outcome is as positive as this.
She was warned at the EHCP review that getting it would be ‘a fight’. Like every single step she’d taken to that point hadn’t already been a fight.
It’s all a fight. We’ve been fortunate that we’ve been able to battle for our boys’ needs and rights to get them into the educational settings that, hopefully, work for them.
What hope do children have in a system set up to work against their needs?
Right-wing newspaper columnists would probably call us ‘sharp-elbowed middle-class parents’, and there is a point in there underneath the sneering.
Many parents of SEND kids can’t endure this Sisyphean task of pestering and advocating. They might not have the time or energy, they might be neurodivergent themselves, or they just might not know where to start.
So, what hope do their children have in a system that is set up to work against their needs?
It shouldn’t be this hard. But there’s hope in community. If you can find other SEND parents, they are an endlessly helpful and knowledgeable resource as well as an empathetic ear and source of relatable stories.
Whether it’s people you follow on social media or other parents at a group like Spectrum Gaming, it can be life-changing to find your tribe. I’ve seen it and I’ve felt it.
It might not take away the challenges of trying to get support from people who laugh at you behind closed doors, but it can help you at least not feel so alone when your own personal Truman Show takes another confounding and bewildering twist.
