Wednesday, 21 July 2010


What does independence mean to you?

For me, it's the power to make my own decisions, the freedom to make my own mistakes, and the knowledge that I am the one in control. True, I also happen to be an adult living in my own home, caring for my children, carving out for myself pretty much the life I chose to live. But it's that in control bit which is the most important.

This morning, Mog slept. Our carer arrived, and Mog slept on. So our carer helped Little Fish. Little Fish is five years old. Your average five year old girl is probably mostly able to dress herself without much help from her parents. Little Fish needs a little more help than that. So our carer turned herself into LF's facilitator.

I heard some words, a fair bit of discussion, and then lots of giggling. And Little Fish then turned up in the doorway dressed in a very fluffy fleecy winter all-in-one set of pyjamas. She'd sent the carer to the wardrobe, directed her to the correct shelf, instructed her on where to find underwear, and then picked the sleepysuit. And our carer, in her role as facilitator rather than overseer, allowed her to do that and simply helped insert legs and tweak zips. And Mog slept on.

And then they went back to the bedroom because Little Fish decided that the other peoples in the world might point and laugh, and she then chose an entirely appropriate outfit for the day, from a memory of the clothes she knew she had in her wardrobe, and remembering to instruct the carer in bits and pieces which are slightly different to the average five year old. And Mog slept on.

It might not be independence as most of the world sees it, but self-directed care; I'm all for that. Great.

And then Mog woke up, and we went off to the wheelchair clinic to try out a dynamic chair. And we came home, and Mog wanted to see how her switch might work with the dynamic back.

And although what you might think you're seeing is a girl having fun and messing around with bubbles, what you're actually seeing is a girl in control of her own environment. Choosing when to blast herself with a cooling drip of bubbles, and when to stop. It's a different kind of independence. But it's no less exciting.



Lisa G. said...

Yay we love independence and self direction! I love your posts and your girls.

k said...

oh goosebumps with those last sentences! it is a different kind of independence, and very exciting indeed.

(now where is the photo of LF in those PJ's?!)- you left us only with a mental image.

Alesha said...

wise carer - to allow that freedom.
smart Little Fish - to know what was appropriate.
cutie little bubble girl (I mean MOG!) - blowing bubbles for the camera!

the advances they are both making are very cool! not as easy to measure, perhaps, but great leaps nonetheless!

Thanks for sharing,

Hazel said...

Someone in that book whose name I've forgotten that we had to read at Manchester said pretty similar, can't remember the exact words, but something on the lines of how independence isn't about struggling for however long to put your own socks on, it's the freedom to decide that someone else can do that for you... Sally French probably or someone like that.

Doorless said...

How awesome! LF being given the grace to choose her own attire and Mog with bubbles she can activate. Love the new chair and am enjoying your girls!


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