"If you don't stop messing about then I'm going to buy you a chair like that so you won't have a choice. I expect he's there because he was naughty too" says a woman walking past Smiler and I to her six (ish) year old child.
I have to confess, I didn't challenge her. She'd gone past, neither Smiler nor Petal had heard, and some days I am just not up to educating someone who (in all likelihood) knew she was lying to her child and couldn't care less.
But I wondered. Did she mean he'd done something unacceptable in a past life, and his disabilities are some kind of revenge of the gods, punishment for past transgressions? Or that he'd refused to eat his breakfast this morning and I was establishing dominance by refusing to let him walk? She clearly viewed Smiler's wheelchair as a containment device, a prison of sorts - but this isn't true.
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Smiler soon demonstrated I was right to have faith in his determination - with sufficient motivation of course. Within a month of the chair being delivered I lost him in a supermarket - not only did he scoot away down the aisle at a fair speed (and quietly) he then managed to navigate the corner independently - a fluke perhaps, but he still did it. I'll never forget the emotional confusion of being terrified that I didn't know where he was mixed with the guilt of having taken my eyes off of him and the pride that he'd managed to do it - all overlaid with mild hysteria at the thought of how this was the first time I'd lost any of the kids and it was this one - the one who couldn't walk.
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We are lucky enough to live close to a fair size supermarket and a new local library, but even though they are a less than ten minute walk away, we wouldn't attempt it without the chair. Although on a good day, if time is not a factor, Smiler could potentially walk there, he wouldn't be able to make it back, so there seems little point! Our thinking is more likely to be that we'll push him there, he can potter around the library holding hands, then back in the chair for the walk home. The same if we needed some shopping - best to push him both ways and perhaps a wander around in the middle if he is so inclined.
Yes, it can be a pain in the proverbial. We've been unable to get on buses because the (only) wheelchair space is occupied. Lots of activities have to be brought to Smiler as he cannot get to them. Although we try to do as much 'normal' family stuff as we can, sometimes the logistics defeat us. Not often, but sometimes. If we can find a way around (or over, or under) then we take it.
Sometimes we don't take the chair with it us - if we're going in the car somewhere maybe. His glasses needed adjusting last week (they actually need adjusting every week) so we jumped in the car and went to the optician. Smiler held my hand from the car (parked in an accessible space), walked to the optician where he sat (and giggled as I spun him around) on the office chair (oh the fun!), once his glasses had been reshaped to fit a little better again we walked back to the car.
Smiler falls over upwards of ten times every day (yes really) and I don't mean he trips or stumbles - I mean he ends up either face first or flat on his back on the floor. Every two or three months this results in some injury to a foot or ankle or knee or hip to the point that he can't weightbear, and spends a week or two on wheels, needing to be lifted by us to transfer from his car seat into his wheelchair and so on. The balance, coordination and concentration required to use crutches are simply beyond him, so without his chair Smiler would potentially be stuck in bed, unless lifted and carried around - easier said than done!
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It must look odd, one parent pushing an empty wheelchair while another holds hands with a (very nearly almost) teenager, but you know what? Stare all you want - even if he can only walk ten steps before he needs to get back in, that's fine with me. And if ... when the time comes that he doesn't walk, that wheelchair will enable him to get out of the house, go into shops, visit a park - far from a punishment, far from a prison, it will be his freedom.
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