Off Piste

When people first discover I have a son with significant and complex needs, their instinctive reaction is often a slight but detectable head tilt, and a fleetingly brief expression of discomfort rapidly replaced by a somewhat sad, somewhat constipated (I can never quite figure it out) half-smile. Then to fill the thick, awkward silence I've just induced comes, 'I'm sorry. That must be hard.' 

I'm not in the business of tiptoeing around issues and my inner monologue regularly goes AWOL at the most inconvenient of times, which I'll admit, sometimes gets me into trouble. Bull in a china shop springs to mind, but anyway, in scenarios like I've just described, I think it's probably a positive thing. 

Truthfully, it is hard. Truthfully, as any loving parent would be, I'm frustrated by how difficult everything is for my child. I abhor above anything his medical issues- the brain damage; the unpredictable seizure whirlwind that sweeps through at random leaving a litter of broken skills in its wake. This stuff sucks arse. Yes, this stuff is hard.

But why are you sorry? And seriously, why, when you convey this to me, do I suddenly feel the urge to pass you the Dulcolax?! As I understand it, apologies are offered in one of two situations. One-when you've fucked up and need to make things right. Two- when someone's died. Unless I'm missing something, learning of a person's disability or learning they care for someone with a disability ticks neither of those boxes.

As much as I know it's probably not reflective of anyone's explicit intention, this knee jerk response speaks volumes about how, even in our enlightened, socially tolerant (!) 2016 state, we still view disability as an awkward, clumsy taboo. Apparently it's something that needs shrouding in sorries because we inherently see fuck-ups and grief. 

My son, and the countless others like him, are not fuck-ups. And trust me, honestly, there are times I need to remind myself that. The grief thing is tricky, and I can't help but think that perhaps if our culture wasn't so goal-orientated and competitive, the grief wouldn't be so much of an issue.

 As parents of disabled kids, we often find ourselves grieving the child that wasn't - the boy that met all his milestones and hit all the arbitrarily imposed tick boxes for a successful life. And by grieving the child that wasn't we so often miss out on the child who is. The boy that's right in front of us. I don't want to be that parent, so slowly (much more slowly than I like to admit) I'm stripping away those stupid restrictive boxes and pre-determined pathways that dictate what life satisfaction looks like. I'm going off-piste, and if disability is ever going to be viewed through a positive lens, I need you to join me.  

When I was visiting the States a couple of years back, a friend took me to Multnomah Falls in Oregon. Having lived in Wales for a few years and walked the Brecons most weekends, I was a little bit excited about seeing a giant American version. For all my States mates, I apologise profusely for what I'm about to say and please don't hate me forever, but.... well, it just wasn't all that great. The landscape was stunning, but the Falls themselves? They'd done that 'let's make is safe for tourists and put safety fences up and tarmac down' thing, and, as much as I tried to get past it, that kinda killed the whole experience for me. Was it safe? Yes, totally. Could you buy a nice latte from the cafe at the bottom? Absolutely. Could you pee in a sanitised environment? There were even loo seat covers. Was it genuine, and authentic, and raw, and real? No, not so much. 

Going off track is never the easiest or safest thing to do. There's the very real chance that you'll fall off a cliff, or step on a snake, or get bitten to death by huge red ants. You might even have to re-route a few times, or climb through a field of cows, or get bitten on the arse while you're pissing in some stinging nettles. And this is my life, most of the time. Negotiating shit I have no clue about, facing up to situations way beyond my skill level and, for the most part, blagging it. BUT. And here's the beautiful but. Going off track makes you feel alive. The itching, the lack of caffeine, the constant re-routing all pale in comparison to the incredible sunset you just saw from the best vantage point ever (a vantage point completely vetoed by the health and safety tarmac brigade). Or catching a glimpse of that rare bejewelled bird who steers well clear of the tourist areas and seeks solace in the wilderness. Or seeing those crazy colourful little flowers that struggle to push through the cement of the easy paths. These are the things we miss when we're constantly craving the easy way, the way most everyone else chooses to go. 

For me, craning my neck and straining my eyes in the direction of where everyone else's child is and where my kid 'should be' does nothing except blinker me to all the amazing stuff right where I am. This week B gave his carer a kiss. Completely out of the blue, when we were playing together in the lounge, B smooshed his face up against his carer's cheek. And smiled. I wish I could convey how mammoth that is for us, and for B. A kiddo with autism, who rarely seeks out contact or interaction- that kiddo kissed his carer. An unmistakeable and deliberate show of affection. That was my ultimate sunset view. This week he's also been persevering (something he's not great at) at trying to turn his little trains on. They have the most bastard fiddly switches, not great for kids with fine motor issues, and this week we've been working on helping B to turn them on himself instead of just doing it for him. Every time he hands us a train we say 'pointy finger.' Do you know what he does? He only bloody sticks out his index finger! He gets it and HE STICKS OUT HIS FINGER! That's my beautiful rare bird right there. 

Every day I realise more and more that he has as much to teach me as I do him. Patience, love, respect, and how actually, going off the beaten track is maybe, despite all the shit bits, the most liberating thing we can ever do. Thank you B, I love you. 

So next time someone mentions disability, please don't perpetuate the pity party. Instead, come join us. The crap stuff is crappier, but the stuff you experience going off piste is more life-inducing than you can even imagine. After all, the higher the mountain, the better the view right?


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