Predictably Unpredictable
At home, we have no idea how B will behave from one moment to another. It's a real struggle to put into words the utter chaos that causes without sounding completely hyperbolic. The nearest I can get to an (entirely non-pc) description is it's like having a big, non-verbal toddler on crack. But even then we're barely close.
Hands up parents who remember that helicopter phase? You know, the bit of life where you can literally do nothing for fear of your small person completely trashing your house, themselves, or some other child in the vicinity in the three seconds it takes you to express pee the bladderful you've been hopping about with all bloody day? I remember those days well. The number of times it would suddenly go quiet, and we'd rush upstairs to find scheming toddlers smothered in Sudocrem, or a flooded bathroom, or them suspended from the bunk beds MI2 style, about to die. I was a pretty laid back parent, and yet my heart remained permanently lodged somewhere between my chest and my mouth for the entirety of the toddlerhood period.
Fast forward ten years... we're still in that phase. B needs eyes on him, 100% of the time. Turn your back for a second and expect definite devastation. And that's in our home, where it's as B-friendly as possible. Current stresses include the penchant for burying his face in the curtains, resulting in the whole curtain rail falling down in comedy fashion, upending and spinning of anything vaguely spinnable, and posting all the things in all the places, including himself. Homework books down radiators, cars down tubes, plates in the tiny gap down the side of the washing machine.... if you ever need a place to stash dodgy gear, I will happily loan out my child-he has serious skills in the magical disappearing department. He also climbs. I've found him on the dining room table before, batting the light as though it were a giant toy ball on a string. Add into the mix he could have a seizure at any given second and you can see why we live in a state of permanent exhaustion.
Take him out and the ante is seriously upped; you have to now factor in random environmental features-people, animals, play park equipment. I'm one of those try-anything-once types. Except I tend to remain ridiculously optimistic despite the trying-it-once almost always going completely tits up with B in tow. So I guess you could say I'm a try-anything-once-and-keep-bloody-trying type. A couple of weeks ago we went to visit friends who also have four children. Obviously eight children to four parents isn't the best ratio, but these are friends we've known a while and who are completely cool with trashed houses and mad kids. I *thought* it would be fine. Ish. (I'm not completely stupid.) I did a quick reccie on entry, and immediately spotted at least 76 areas of potential hazard. I moved what I could before B noticed it, properly showing off my lightning Ninja reactions as I caught a within-reach glass chopping board inches from the floor that he predictably pulled off. S and I tag teamed him the entire time, and even with that constant one-on-one supervision, the puppy still got picked up by the tail at least three times (funny-not-funny, but mostly funny), B managed to piss the other kids off on multiple occasions, and all adults were smacked and/or run into at speed.
So. If life was a computer game. Level 1: B at home. Level 2: B in someone else's home. Level 3: B in a public space. Fast forward a few levels and you get to Level 6: B at school. We are incredibly fortunate to live near a very good special school, which makes life significantly easier in that respect. But even within the walls of an environment specifically designed for him, and with teachers trained up to the hilt in various creative teaching strategies, we still get reports home on a regular basis along these lines: 'B has been very uncooperative and has spent the afternoon pinching and pulling staff, and targeting his peers.' Crude translation: your kid's been a fucking nightmare today.
Level up again, and we get to respite provision. The outcome of the dreaded review came through, only four months after the actual review. *eye roll* It was mixed news. Our funding got upped. Yay, you might think. Well. Like I said, mixed news. After a brief chat with the social worker, it was apparent that out of the three possible setting provisions locally (yep, three - I shit you not) B was appropriate for... wait for it... drum roll please... none of them. Not one respite provision was willing to take him on. His needs are such high level that even places designed to accommodate complicated children deem him too much of a risk for their more vulnerable children and therefore we're left without any residential respite options. Thanks to that, translation of the budget into actual help falls squarely on our shoulders with regard to recruiting, training and retaining staff. Because obviously we have nothing else to do and all the mother fucking spare time in the world. Plus there are emotional ramifications to contend with; being given additional funding in a climate where funding is scarce, and for the most part budgets are being slashed. Finance is granted only if it's absolutely necessary -knowing your kid met criteria for an increase reiterates again just how nuckin futs this life we never expected is.
I don't say this to elicit pity. I don't write my shitstorm of a life down in the hope you'll feel sorry for me and others like us. And I absolutely don't want you to think I don't love my kid; that he's some sort of unwanted nightmarish inconvenience. I love my boy more than anything. He isn't the issue. The woefully underfunded support system (or lack thereof) is the overwhelming stressor when it comes to children with complex needs who don't fit into nice easy care provision boxes. All I want is for people to have a little more understanding of the chaos we face on so many levels in looking after a kid so predictably unpredictable. I mean, admittedly, it's funny. There is funny shit to be found in a life so completely off the beaten track. Who else has to fish their child out of the toilet because water play, or remove their firmly wedged child from down the side of the TV because small spaces seem fun, or consistently use the phrase "B, please don't lick the wheel. Mouth off.' because spinning things feel weirdly nice. Exactly. But holy hell, it's exhausting. I used to love spontaneity and making mad decisions off the cuff. However, living with no remnant of predictability on any level is perhaps more than I bargained for.
If you hear one thing from this post today, let it be this. When life is so predictably unpredictable, don't abandon us entirely. I know it's not neat and tidy. We'll possibly embarrass the fuck out of you on a trip out, and we'll definitely trash your house if you invite us round. Keep us in the loop, even though our loop is much messier. Knowing what I know now, I'd swap unpredictable chaos for dreary routine anyday. But then again, breaking the mould is kind of fun.... sometimes, at least.
Comments
Post a Comment