Summertime Seuss

Today I am suffering with acute bureaucracy fatigue. It's a condition characterised by eternal phonecalls to people who hold imperative keys for life support, reading up on legal rights and the SEN code of practice, trying to hold your shit together while facing the millionth diversion in the road of accessing aforementioned life support, and walking the fine line between megabitch and softly softly catchy monkey. 

I think i'm fairly on point when I say that most parents find the summer holidays somewhat crazy. For working parents, there's the matrix of childcare to sort. For those at home, there's the frightening prospect of keeping all your children (and yourself) alive AND entertained for six weeks. SIX WEEKS. For us, this six weeks resembles something of a desert road, stretching on into a horizon we can't quite see. It takes us a ridiculous amount of hours to arrange appropriate support for our family to survive the heat of summer. It kills me to need outside support to function, but B requires constant 1:1 line-of-sight supervision for safety reasons, and last time I checked, they hadn't cloned another one of me to look after the girls. Cue the Schedule of Destiny. Weeks in the making, this is not something to be sniffed at. In fact, I think most parents of special needs children probably have better research and organisation skills than MI5. Now there's a career plan. Anyway, back to the S of D. On Tuesday, B attended a holiday club, based at his school but run by some new care providers in town. The company running last year's club folded, for mysterious reasons unknown. This happens a lot with care providers. It sucks. And unfortunately, beggar boroughs looking for contractors of provision for disabled children are not often afforded the opportunity to be choosers. And because of the distinct lack of competition, the losers end up being our kids. The very people whose needs are supposed to be being met.  

Back to Tuesday. On picking B up, I was offered no immediate conversation with regard to his day. When I inquired, his 1:1 told me 'he's been absolutely fine.' That was it. B had at this point reached his limit and needed to leave, so I ran out of fishing time. I was given no indication of seizure activity. I didn't know how much he'd eaten and whether they'd needed to tube feed. I had no clue about the activities he had taken part in, what he'd particularly enjoyed or disliked. And then, on arrival at the car, I discovered he was wet and dirty. The kind of dirty which was fairly bedded in and had obviously been knocking about a while. Bearing in mind the massive prep work that had gone into these guys being offered the privilege of taking care of my child, this was not OK. I'd sat in meetings with management. I'd answered a million questions and filled in a million forms. I'd emailed seizure care plans, feeding plans, behavioural plans, medical emergency plans, and general information on my beautifully complicated boy. A vague one sentence feedback for a child who is entirely non-verbal, has a plethora of complex medical and learning needs and had spent a whole six hours in their care was NOT FUCKING OK. 

The ranty, sweary, life's-not-fair parent came to the fore at that moment, and later I sat with B, apologising for the shitty world he happened to be born into. As though it was my fault. But as his parent, it really does feel that way sometimes. I promised him I was trying my best. That I was fighting his corner. I really, really hope he knows that. And at that point I had two choices. 

Option 1: Suck it up and accept less-than-preferable care provision. Assume B doesn't really get it and be grateful that someone else has him for a few hours. Fly under the radar. Accept it's never going to be different. Me versus the system. I mean, he's still alive at the end of it, right? And even if he has had a shitty time, he can't tell me, so I can realistically crack on in blissful ignorance. Right?

Option 2: Step up. Again. Be the voice B doesn't have. Speak out. Call them on their crap. Firmly set the boundaries of the expectations I have when I hand the care of my child over to someone else. Repeat the same things I've said a thousand times. Suck up that B might not have any provision if I do that. Fight, even in apparent futility. Fight even when I know the provision is massively outweighed by need and so there's no real accountability for the care providers to get their shit together. 

There will always be kids whose parents choose option 1. Honestly, I understand that. This chaos demands every ounce of energy every minute of the day. The admin, the emotional rollercoaster, the physical meeting of care needs- it's all costly. And for some parents, there's nothing left to give at the end of that. 

But I'm a feisty bitch. My personality is naturally a little confrontational I guess. I can't settle knowing I haven't tried my absolute best at something. I find it hard to sit still, or relax, in case I happen to be wasting a moment of my life in which something awesome could have otherwise been accomplished. I know it's not an altogether healthy place to be, and I'm working on it, but in this scenario it's pretty good. 

So I took a deep breath and emailed. It was fair, calm and constructive. I've learnt along the way that an insulting email minus any actual outcome targets is entirely useless, serving only to get everyone's backs up while earning you the label 'nightmare-bitch-parent-avoid-at-all-costs.' Not so helpful. Their response was less constructive, centering around the feelings of workers rather than addressing the very real concerns I'd raised and being B-focused. Next step. Option 1 or option 2. Always the choice. Every time shit hits the fan, or it gets harder, or I hit another barrier, I remind myself again why I am chasing option 2. 

In a wider context, taking the harder option and often shooting myself in the foot in the process feels right. If we start settling for less-than-best in the context of those who can't fight back for themselves, we surely start down a very slippery slope leading to all sorts of abuses of the most vulnerable among us. We also begin to dehumanise people. When the effort I put in to someone is dependent on what I can get back, their worth is reduced to some kind of fucked up economical exchange. B operates on a different level. Sure, he might not be able to communicate well. He is affected by complicated epilepsy which means he needs constant line-of-sight supervision. The people looking after him need to be shit hot on a million subtle complexities regarding his care. He is, as I mentioned before, costly. Emotionally, financially, time-wise and resourcefully my baby boy is expensive. It would be easy to settle for the least draining option. Palm him off to whoever will have him. Shrink back and decide any option is better than no option care-wise, and that I'm never going to be able to change the monstrosity that is the system anyway. But I refuse to dehumanise B to that. He is a person. Yes, he has difficulties and yes, he poses a challenge to a world so manically driven by productivity and accomplishment. But here's the thing. We as regular people so often exacerbate that same mentality. In the subtle society-approved dinner party questions we throw out on meeting up with friends. In the self-evaluation of our lives. And in the hopes and dreams we so often don't even realise we have for our kids until they're totally blown out of the water. We idolise the high flyers and forget about those on their literal knees, wiping shitty arses and caring for the unfortunate pitiful inconveniences among us. 

'What do you do for a living?'

'Have I reached my goals? Am I settled financially? Am I in a good job? Have I managed to get on the property ladder? Do I have a decent standard of living?'

'I really hope she gets into a good university.'

'He needs to find a nice woman and settle down.' 

Honestly, on a societal level, I don't even know where to start with valuing people for people. It's so inherent in our psyche that all the other peripheral shit is tangled up with our perception of worth. How do you start unravelling that? For me, I'm pulling the small thread that is B. Making sure that the care he receives matches his inherent worth as a human. Individually, not as part of a mass of 'people with disabilities.' And I'm going to make much more of an effort to hear people's stories. Care about the road they've travelled. Listen to their hopes and dreams and make those human on human connections. The connections where circumstance fades away in the strength of shared humanity. Imagine the richness of experience we could share in a world free from social class lines, and easy neat boxes we use to categorise and group. I choose to keep pulling that thread, even though the mass of knotty chaos seems overwhelming, and even when it feels like I'm the only one pulling. 

To end this slightly off tangent heavy post on a more accessible note, here's a couple of extracts from my favourite author ever. A super wise guy with incredible talent for rhyming, I give you Dr Seuss. 

Horton Hears a Who is one of the most insightful books on people I think I've ever read. An elephant finds a speck of dust on a clover, and on that speck is a whole planet of small people. His friends think he's crazy and want to boil the clover to end the ridiculousness, but Horton stays faithful to protecting the little speck planet. And this is why. A person's a person no matter how small.

'From sun in the summer to rain when it's fall-ish, 
I'm going to protect them no matter how smallish,
For even though you can't see or hear them all, 
A person's a person, no matter how small.'

Oh the Places You'll Go chokes me up every time I read it. My littlest is a huge Dr Seuss fan, and every night we read an epic rhyming tale together. Whenever I read this one, she always asks why my voice is wobbly and I have watery eyes. Dr Seuss talks about life, about how it doesn't always go to plan, and about how we can choose our responses in that. Kids book? Yes. Philosophical gem? Absolutely. 

'And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.

But on you will go though the weather be foul.
On you will go though your enemies prowl.
On you will go though the Hakken-Kraks howl.
Onward up many a frightening creek,
though your arms may get sore and your sneakers may leak.

On and on you will hike, and I know you'll hike far
and face up to your problems whatever they are.'

So, Dr Seuss, thanks for the life wisdom. Here's my little response. 

Yes, I am tired, and the weather be foul, 
And I'm constantly hearing the social-care howl.
But I choose to get up and stand tall and crack on.
Though the road that I'm walking seems way way too long

If I look really hard on this dark lonely street,
I'll always find someone amazing to meet
Their arms may be sore and their sneakers all wet,

But their stories are some of the best I've heard yet.


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