Inside-out knicker-trousers... and other tales of joy

So I've been wanting to write about this for a while, and I have a feeling it may be a touchy topic, especially amongst my fellow parents of kids with special needs.

First up, I'll let you know where I'm at, since I haven't blogged in a while. Life is still chaotic- nothing new there. Raising four kids is fairly full on; my life is spent mainly removing knickers from inside-out trousers that have been left to walk themselves from the bathroom to the wash basket, spending hours cooking meals that are wolfed down in minutes, practising my ninja-reflexes since B's current favourite activity is throwing every toy he can get his hands on after playing with it for approximately three seconds, and attempting to maintain some sort of sanity during the dreaded GCSEs. I was working for a few months as an SEN planning co-ordinator for the local authority while applying for educational psychology training-which almost killed me, by the way- the whole process was brutal. 'What doesn't kill you makes you stronger' is actual bullshit- 'What doesn't kill you makes you fatter' more like; I swear I ate my body weight in Haagen-Dazs during interview month. Anyway, it was worth it- I was offered a place at Exeter Uni to study the professional doctorate in ed psych (think PhD with slightly less academia and slightly more on-the-job training). I'm slightly shitting it as to how I'll accomplish that level of plate spinning for three years. I guess there's always Haagen-Dazs...

I've also been drowning in admin for the boy. Things were getting a little hairy at school, cue almost-crisis intervention multi-agency assessments to try and figure out next steps. Unfortunately, he seems to break all the boxes when it comes to support- the usual process involves assessing, referring, gathering evidence to support the referral, hitting whatever criteria ticks are attached to that support, and then finally gaining input. Which may or may not prove useful anyway. As my fellow parents know, trying to access any sort of additional support services takes a hell of a long time, and can elicit feelings of ice-cream binge-inducing frustration in its purest form. And that's when a child's needs fit neatly into a particular service or support. B's needs change daily- sometimes by the minute. One day we may be faced with a small fiery ball of rage hell bent on destroying everything and everyone in his path, another day he might be completely out of it from seizures, and yet other days involve hawk-eyeing him to make sure his sensory interests (think dropping heavy things on his head, running full pelt up and down the room, squishing his fingers in drawers, and other similarly dangerous activities) aren't the literal end of him. So by the time you get one service to offer some support, his needs no longer fit their criteria. Rinse and repeat, forever. Leaving us winging it. 

So back to the school thing, he's essentially a walking (running) liability waiting to happen. They struggle to keep him safe, and not because they're shit- far from it- but because his needs are so exceptionally high that even a specialist provision is also winging it. We recently had to ask the LA for additional funding to put an extra person in the room at school just to ensure he doesn't damage himself while in their care. They agreed instantly- which speaks volumes in and of itself. Anyway, we're kinda of at a crossroads in terms of working out what next, and those decisions are really hard. Hard because I wonder if anywhere will be able to effectively manage him and give him the education he needs. Hard because I'm acutely aware that resource is finite and limited and needs to be used as efficiently as possible to meet the needs of all the kids like B. Hard because I don't want to constantly fight. 

Which leads me to my next, and possibly most controversial, point. That little word, the one which carries with it fatigue, and anger, and instantly puts us in a battle zone. Fight. You hear it all the time in relation to accessing support for the most vulnerable among us.

'You'll have a fight on you hands.'

'Everything's a battle.'

'I'm so tired of fighting.'

That aggressive, combative language doesn't stop there. We often refer to ourselves as 'warriors' for our children, and social media is saturated with inspirational quotes from the Mama Bear-esque school of thought. I've been thinking about this a lot lately, and my stint in the LA shed light on things from a whole new perspective. Right at the start of our special needs journeys, our language and outlook becomes infused with this kind of rhetoric. The battle language. The defensive position. The ready-for-war attitude. We often forget that actually, while the system may be well and truly broken, the people in it generally exist to support families like ours. We spend so much time and energy being angry, trying desperately to change the system. We kick off because we feel backed into a corner, we hit out at the very people positioned to help us, and we jump to extreme responses as a first port of call because frankly, we're exhausted by it all. 

And ironically, I'd argue that those responses don't do justice to us, and don't magically unlock the support we need for our children. If anything, they do the opposite. Tribunals are hugely costly for the LA, and seem to be becoming more and more common. Now don't get me wrong, I'm fully aware there are situations where tribunals are absolutely necessary. But it should be a last resort, not a first line threat- the waste of resource is adding to the overall issue. Sensationally involving the local MP and forcing the hand of professionals through poor publicity is not a sustainable or fair way to negotiate the system. Plus, these people are humans, and in general humans would rather work with co-operative, reasonable adults than angry arseholes. 

Imagine a world where we didn't view the LA, or other professionals involved with our children, as the enemy. If we entertained the idea that they were actually in it to support us, and not hang us out to dry. Mutually respectful dialogue, conversation around how we can all work together for the good of our kids. 

Don't get me wrong. I've walked this walk for almost 12 years and I am under no illusion that we do indeed have to work within a framework that is unfit for purpose. I understand the frustration, I know the LA can infuriate the hell out of people, and I've had to apologise for angst-ridden sweary outbursts in meetings on more than one occasion. (I know you're all shocked by that revelation.) And there are and always will be people in the system who just don't give a shit or seem to understand the struggles we face on the daily- I'm in no way downplaying that, or suggesting for one second that we roll over and are grateful for any less than is necessary for our children to thrive. But I just can't help thinking there's a better way than the equivalent of turning up to the PTA meeting armed and ready to kill. By shifting our attitudes just that little bit and viewing the professionals involved with us as keys and tools to help, rather than enemies to be fought, surely we'd achieve better outcomes not only for our own children, but for our whole broader community. 

The inconvenient truth is this: Our war isn't with them- the professionals, the local authority, or the school. Our war is with the shit our kids have to face daily; the screaming meltdowns over sock seams, the seizures that take over with no warning, the hyperactivity which has them up at God-knows-what hour every morning, the incessant exhaustion at the thought of dragging ourselves through the day. Maybe in blame there comes some sort of relief, or some hopeful sense that if someone is culpable for the chaos then someone can also make it go away. And we all know our lives don't work like that- that for the most part it's a marathon and not a sprint. Surely the only way to finish that race, and finish it well, is picking our battles and picking them wisely. Going in all guns blazing to every meeting ever can only end up in emotional exhaustion.

Remember who the real enemy is. And by all means be angry- this shit is entirely unfair. Treading water every day while we watch the regular families around us swim gracefully on by. Holding our babies as they seize for the fifth time that day. Watching our kids struggle with seemingly insurmountable challenges- all within a system that doesn't facilitate the unicorn and rainbows stuff promised by the government in its SEN reforms a few years back. Be angry at central government for not delivering what they promised- and channel that into your vote to promote meaningful change from the top. Be angry at the generic shitness of it all-scream and cry and rant all you need.

But directing that friendly fire at those designated (and usually willing) to support us creates collateral damage and a whole shit ton of unnecessary walking wounded. Buckminster Fuller- a super cool scientist who discovered a new element (creatively named Buckminster Fullerene) had this idea that You never change things by fighting the existing reality. To change something, you build a new model that makes the existing model obsolete. 
So let's do it. Let's build a new model; undoing the harmful us-and-them narrative really isn't all that impossible. Swap out the aggressive battle rhetoric for mutually respectful conversation- relationships are important, and no less so here.  Start any interaction with professionals on the premise that they give a shit and want to help- instant reframing. Go into meetings knowing you're ultimately all on the same side. Build bridges, apologise when you're an arsehole, and above all, continue to consistently advocate for your child. Respect breeds kindness. Kindness breeds empathy. Empathy breeds understanding. And in that climate, anything is possible....

Build a new model that makes the existing model obsolete. 

Flip the narrative.




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