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.
Awesome writing, as usual, Mrs P. Keep on squeaking x
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