The little big things

imagesOlive  managed to put all the rings back on a building pyramid today.  It was a real milestone.  We don’t know exactly how or what Olive sees in detail, but having her make a connection like this and see ‘enough’ to do it is a big deal.

When your kid has a visual impairment, specifically a cerebral visual impairment (CVI), the developmental path is a jaggedy one.  There are lots of things about seeing that, as a baby and toddler, represent more than seeing itself.  Making connections between objects and words, or objects and functions are all part of figuring out what the world is about.  When those objects are less clear, or completely obscured, those connections aren’t made as easily.

Olive does fantastic things.  To think that 9 months ago she couldn’t see much at all.  She spent the majority of her sitting up time facing the floor.  Her head would move towards, or in the direction of, noises, but you could creep past her undetected with ease.  Now, she’ll spot an object, pick it up if she can and put it…well…somewhere?  She also gets around really well and has enough vision to be curious about the stuff in a room, or the people, animals and all that.

Faces?  Well, that’s a work in progress.  Faces are tricky things to figure out if you don’t see them quite properly.  In fact, faces are a whole ballgame in themselves when it comes to VI.

A consultant at Great Ormand Street Hospital that we see regularly said something once that has stayed with me ever since.  In one of the many tests that Olive has undertaken when in hospital she observed that Olive “responded to my silent face”.  The words just hung in mid air for a while and really made me think.  I’d never heard that phrase before.  I expect it’s an occupational term, but it sounded so weird.  It meant, of course, that Olive was responding to what she saw, not a noise (a voice) attached to it.

A silent face?  Who ever thinks of a face as being silent, or loud, or audible in any sense?  I had fast-tracked a layman’s understanding of the terms that surround VI, such as MRI scans, white matter, the visual cortex, neural pathways, corpus callosum et al. Their scientifically sinister undertones accompanied us on the road to finding out what was up with Olive’s vision.  But it was the ‘silent face’ that ‘done me in, guv’.

A world without sound is a different world for kids that don’t see very well.  Removing the sound changes the rules.  And faces…they are so…important.  Bringing the notion of a silent face into our family brought with it a sobering recognition that Olive’s world was…different.

Olive can see a silent face now.  Maybe not clearly, but enough to smile and reach out a hand to say hello.  Enough to recognise features and tell mum from dad etc. And so her path to seeing stuff continues.

There are lots of children with VI that face the same challenges as Olive.  There are also those who don’t have the potential for their vision to improve at all.  Moreover, many have conditions where their site is degenerating.   They all share a common ground of having to adapt to a visually impaired world as they grow, seek independence and find the gumption to get over the hurdles.   That’s why I am running the London Marathon 2014 on behalf of the RLSB to help visually impaired and blind children live life without limits. 

You can help me, and them, via the sponsorship link above and know that you are making a real difference to some seriously special people!


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