Monday, 4 August 2014

the secret life of a child and a wheelchair

"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 uses a wheelchair - not all the time, but if we're out of the house and he isn't sitting in it then he'll usually be pushing it (which provides him with a bit of stability), or else one of us is pushing it and he's holding the other's hand.  Mr Manley is lanky enough that he will often push with one hand, so that he can walk almost abreast of our son, chatting as they go.


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This is Smiler's fourth wheelchair - at least his fourth that has has that typical shape, big back wheels, handles on the back, foot plates.  During the assessment for the first of these I was told they wouldn't be supplying this style - their preference was for an 'attendant' chair, with little back wheels.  Their position was that Smiler's understanding and coordination were not at a level where he would be able to make use of the wheels to propel himself.  I stated and explained our preference, complete with relevent photocopied research. I quoted legislation and NHS rhetoric regarding opportunities for independence.  It was when I started enquiring about the cost difference between the two options that the mood in the room suddenly changed, and it was agreed that big wheels would be ordered for this chair, but this did not mean the same decision would be made at the next assessment, for the next chair.  I was satisfied - it was the lack of opportunity that I was railing against, knowing that without the chance to develop that coordination with the motivation of independent mobility that it was entirely possible Smiler wouldn't.

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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these days


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 took a long time to get Smiler on his feet, and we don't know how long it will last.  He has scoliosis (curvature of the spine) which may well deteriorate during adolescence, necessitating major spinal surgery.  Smiler's feet and ankles require support from splints, insoles and orthotic supportive footwear - as he has growth spurts these weak joints may requite more support, or surgery - potentially serial casting.  Smiler is hypermobile, which means in effect that even those joints that are properly formed (which rules out his hips, ankles, jaw, wrists and elbows) are 'loose', and vulnerable to bending too far and dislocating, another threat to his walking.  It's possible that once fully grown Smiler's ankles, knees and his will simply not be able to take his weight, so he'd be unable to walk or stand. He had major orthopaedic surgery back in 2009, and when the surgeon looks at every set of new xrays he uses words like 'precarious'.  These aren't distant possibilities, akin to winning the jackpot on the national lottery or being hit by a meteor.  No one will ever give you odds but the combination of these mean that it is more likely than not that by adulthood Smiler will be in his chair whenever he is out of the house.  I'm hoping he'll still be able to move independently indoors - he learned to get around himself when he was almost five, which made his life much less frustrating, so even if he reverts to his old bunny hop/scraping knees style of movement I know this will have a massive impact on his ability to cope with daily life.  But if he can't - well, then we'll deal with it.

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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6 comments:

  1. Your posts make me smile.
    he is a wonderful boy.
    made me smile in the top photo above the wheel chair I see the fast lane of the garage x

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  2. I struggle with people who say things like that. It's just so utterly thoughtless.

    Beautiful, challenging post. We should not have to fight so hard for our children. But you do it with grace.

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    1. It is thoughtless - I always wonder how they would feel if I made an equally careless remark about their child - I suspect it would not go down well at all. I just hope that their own children don't hear such comments too often (though I fear otherwise) and instead pick up on the more positive messages that are out there instead.
      Thank you for the very moving compliments.
      Take care
      Lucas

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  3. Oh Claire - I didn't even spot that until you said! He is speedy at times, but definitely runs on fruit and sandwiches, not petrol!
    Thank you for reading, and taking a moment to comment - I think he's wonderful (most of the time) too, but then I'm biased!
    Take care
    Lucas

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  4. I know exactly how you feel. My daughter has cerebral palsy and scoliosis, she is a very active child but will quite often suddenly collapse or be in intense pain and this can also depend on whether she is having a good or bad day. We get very very strange looks when we are pushing an empty wheelchair with her going alongside us, we also get very strange looks when she is in her chair. She also has insoles in her shoes. Well done you for holding your tongue as I know I would have struggled. my daughter is only 7 and there is no way we could manage without her wheelchair as we have started to do our backs in by carrying her. We have never had a negative comment but lots of people comment on how funky her chair is as its pink with orange flowery wheels

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  5. Hi Ros, I love it when I wrote something that inspires that reaction in someone else - you know, the nodding as you're reading and recognition from someone who had been in the same boat! I think you have to develop a bit of a thick skin over the years as otherwise you'd just end up crumpled up in a corner indoors, and some days I'm much better at ignoring comments / looks than others. With the wheelchair / walking thing I try to remember how little I understood about disability before it was personal, and hopefully how ever many years down the line it won't be such an uncommon sight so the general public will understand that needing the chair can fluctuate. Your daughter's wheels sound fab - we've been looking for some funky wheel guards for Smiler's chair but they never quite make it to the top of the list, you know?
    Take care Roz!

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