Friday, 11 April 2014
The Squeakiest Wheel
So I know you’re probably sick of my rantings about the injustices of raising a special child, and I can imagine some of you thinking that it really can’t be as bad as I make out, that surely in the year 2014 we’d have some near decent provision for special kids in our community. You’d think right?
I recently took all four kids to the Oceanarium in Bournemouth. It’s currently school holidays, which, incidentally, makes me want to throw a flailing tantrum and bail on life for two weeks; something I resist strongly until my husband walks through the door at the end of the day. I hope he knows how lucky he is to have me ;) The Oceanarium is one of a handful of places I can take all four kids by myself; small enough to let the girls free range while I shadow B, with enough entertainment for a good hour or so. That plus the journey there and back, usually on the peasant wagon due to S needing the car for work, means we can kill about half a day. Genius.
At the moment B has a penchant for smacking people. We have to give people an extra wide berth while pushing him in the buggy due to his insane Go-Go-Gadget-Arm ability; he’ll reach out and touch (hit) everything as we pass by. Honestly, I think it’s another stage of development- have you ever seen a mum trying to shop with a toddler in tow? Don’t touch! Put that back. Stop fiddling. Don’t poke a hole in the chicken packet. The bubble wrap is very cool but not for popping. I know they look like balls but we don’t launch apples across the shop. That milk is too heavy for you to- oh, let’s move along, quickly. No, the toilet rolls are not soft play. You catch my drift…Now it’s kinda cute when a very small person waddles up to you and grabs your bag or your skirt; you smile and gush, the parent apologises, and the oblivious child toddles on their merry way. When that toddler masquerades as a six and a half year old boy people’s patience and tolerance seems to rapidly dissipate. It does have it’s funny side for those lovely people who choose to laugh though; I had a good bit of banter with a guy who mistakenly thought he’d got lucky with a PDA from his wife but actually experienced a B special- direct hit, point blank butt range. No such luck Mr Middle Age, work harder on the wooing perhaps.
B has no sense of personal space either, which I have found to be a big problem when out and about. Inebriated dyspraxic zombie just about sums it up nicely. And the thing is, I’m not sure quite what to do about it. Only ever venture out in the dead of night when no one is awake? Keep him restrained in his buggy the whole time? Answers on a postcard please. The nastiest reaction I’ve had was from a lady he barged into while running over to his favourite fish tank in the oceanarium. She looked at him like he was something on her shoe, scooped her child into her bosom and shot me a scathing stare. Ouch. I normally have some quick-witted response up my sleeve for such situations but I was so wounded by this woman that words utterly failed me.
So, even in one of the few places accessible to us as a family, I still have to contend with people’s judgmental ignorance and opinionated conclusions on my ability as a parent and on my children’s behaviour, and their brazen gawping when B’s conduct splurges outside of their nice neat normality prejudices. Whatever the hell normal is. Answers on a postcard please…
I still, wherever I am, have a major issue when it comes to changing him. I need to find the girls to let them know I’m nipping down to the loo, I have to go and collect the change bag from the buggy, and then I have to negotiate a slow and stubborn, or fast and furious (it all depends on the day, or the weather, or some other unfathomable reason as to which) B down to the baby change. Therein lies the fundamental problem. B is not a baby, and yet the only facilities for changing are baby ones. The bizarre presumption that all disabled over-2s are toilet trained is a poignant reminder that the remnants of a society where disability was shunned and hidden are actually much more prevalent than we imagine.
No doubt the Daily Mail would instantly run an incensed press story if McDonalds suddenly decided to demolish their toilet facilities in favour of more seating. There’s actually a lot of law on the provision of toilets in commercial public use buildings, and the only disability regulation I could find included in the swathes of legality was the requirement that places make ‘reasonable provision.’ Reasonable is not a word that should be used when writing regulation and law; it’s highly subjective and wide open to interpretation. The real-term result? Shit provision for disabled people, in turn leading to increased stress for carers, in turn leading to less disabled people accessing mainstream activities, in turn leading to an inaccurate perception of the proportion of disabled people in our communities. And as we all know, out of sight so often means out of mind. People who are out of mind don’t get a look in when the funding is dished out by the local authority. Potholes and press coverage though, now that’s a different matter.
It’s still as true today in 2014 as it ever was, that gem of a phrase; the squeakiest wheel gets oiled first. The problem with that is we get fed up of squeaking. Squeaking takes energy. We are knackered, too knackered to shout. And we do feel like a bloody broken record, as though people will get pissed off by our persistent whining. Unfortunately it seems like we need to press on in our quest. 2014 does not in any way offer equal opportunities for lovely people like my boy, and until that happens our community needs to keep squeaking. Oil the wheel baby, oil our wheel.