Sunday, 11 November 2012

Perception.

We took tLP's powerchair to Florida. And I'm forever thankful that we did. Freedom and independence, and the ability to help rather than hinder (doorway hovering aside). How much better to be able to push a wheeled suitcase yourself rather than having to be pushed alongside the suitcases? We would have struggled without her assistance.

And when the choices are powered chair, standard issue NHS manual chair, or buggy, the powered chair suggest a child who is in control, able to make their own decisions, and who is used to wheeled mobility.

The NHS chair seems to suggest child with a broken leg, child with a temporary disability. And for tLP, it suggests child incapable of doing anything for herself, who should have everything brought to her rather than making the effort to propel herself. I'll ignore the super whizzy manual option, because we don't currently have one which does everything she needs it to do properly.

Put tLP in a buggy and she pulls her sleeve over her hand, sucks her thumb through it, and reverts to babyhood. And the general public ignore her size and see an overlarge toddler, occasionally suggesting she is lazy and should get up and walk.

Happily, with functional arms, decent vision, and a reasonably symmetrical(ish) body, lots of options are available to her, and she and we can choose according to the needs of the moment or the day.

Being a little afraid of personal liability issues, we went for the smaller slightly lighterweight chair rather than the tank; a good decision as space might otherwise have been a little tight in both taxi and hotel rooms. And the inevitable foot-squashing is only very painful, not land-you-in-hospital-and-limp-for-weeks painful. But still, she had her little yellow zippy thing, and we had a happy girl.

We have fewer choices for Mog. Whilst I know there are technologies out there that would enable her to drive a powered chair, even with minimal vision and maximal seizures, it's not something we've pursued since she outgrew her BIME buggy. Her energy is limited; she tends to doze as we push her around and then wake up when we stop moving, to check whether what's happening is interesting or not.


So we have supportive, comfortable, wheelchair, slightly outgrown (new one hopefully coming next week!). Infinitely repositionable buggy. Or three wheeler. Not expecting much snow in Florida, we went for the wheelchair option. It's a biggish beast for a not-that-big-really girl. She's ten, she wears clothes a couple of sizes larger, mainly to accommodate stiff limbs and extra padding. The chair though is just ever so slightly too wide to fit through standard doorways with ease, once her switch has been added. And it's long and tall and deep, and if she's cold then she needs a full-sized blanket (or three) to snuggle in.

One small child in small yellow wheelchair; it's too small for her really but we'll hang onto it as a back up for as long as we can. And one leggy girl in long black wheelchair; no longer a feed pump but with communication switch and various bits of kit hanging off every possible hanging point.

People respond to tLP. She's a very chatty person; she likes to know the ins and outs of everything, and assumes everyone wants to know all about whatever it is we might have been doing. We're working on a filter. It hasn't worked yet. And people are drawn to small child zipping along in a chair which at first glance looks like a junior mobility scooter, until she demonstrates the rise and fall and extreme maneuverability. Mostly, they smile, make a positive comment (or one they think is positive), and then get to listen as she pours out whatever's currently on her mind. She's very keen to include Mog in all this, will draw people over to her sister, make sure they know Mog's on holiday too, talk about how unfair it is that Mog got to go on Thunder Mountain and she had to watch; we try to get her not to tell people all about Mog's latest poo, but, as I said, no filter and a big assumption that everyone things things are as interesting as she does.

Still, I wasn't quite prepared for the comment from the lady behind the desk. A nice chat; tLP demonstrating the chair's finer points. "And how old are you, honey?" "Seven." "And how old is your baby?"

Rewind... Yes, Mog's sleeping, she's reclined in her chair, and she's all snuggled up because the air conditioning makes her feel all cold. But side by side, how can you really think Mog's the younger of the two, let alone a baby?

Tia

2 comments:

Emma Hughes said...

Long time reader - first time commenter :-)

My sister E is more similar to Mog than LP, but she now has a power chair. 95% of the time she isn't driving it - either we are from behind or walking next to her using the front control, depending on situation. We didn't' get it for her to drive, more for carrying heavy equipment, but she does drive it a little in big open spaces. E has vision issues, as well as CP.
The funniest thing about power wheelchairs is that somehow just by her sitting in it she became visible again. Like a wacky magical trick.
When we first took the chair to the shops (with my sister in it!) someone spoke to her - actually to her, in an appropriate way, and completely ignored me. It was a very strange situation.
We now exclusively use the powerchair, and the social aspect is a big part of it. People still stare, that's inevitable, but now we can threaten to run them down if they stare too long.

Anonymous said...

Cringing at a memory right now of something I said to someone in Shelter charity shop when in a muddle/surprise reaction to a grannie who was carrying her grandaughter around suddenly telling me she has CP when I'd just said who's a little sleepy-head and complimented her. Cringe cringe.

On the subject of technology and chairs, do you think the exoskeleton suits being developed would be suitable for LF when she is older? I'm thinking of the one Claire Lomas wore when she did the London Marathon. I read that she is doing a tour of the UK now with various mobility aids. Wonder if she'll be vising any of the schools in Oxford. http://www.justgiving.com/Claire-Lomas

Y

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