Epilepsy in a growing child is just like the sword of Damocles. Hanging over you, waiting, you don't know when, but you do know that one day it's going to fuck your shit up.
A few months ago I decided I would like to try to put together a series of photos about life with a disabled son, the problems that arise and stuff like that. I'm not 100% clear on the brief myself but I thought it will become more apparent as time goes on. Eventually I was thinking I could display these in a gallery setting of some sort, I just need to develop the concept further until I'm happy with it. I'm only got nine photos so far and I'm not even sure I'll keep all of them but I thought I'd start sharing some of them here. This is the first photo I took. It's very dark and without context it's probably hard to see what's going on. This photo was taken at 3:07am. John wakes up most nights and it can be a struggle to settle him back down to sleep. One way I try to do this is just to climb onto his bed, sit him on my knee and cuddle him. Doing it this way I can attempt to stop him throwing his arms and legs round and he settles down agai...
Have you ever looked at the cost of special needs equipment verses the cost of similar equipment for non disabled people? Unless you have reason to then probably not. Let's start with a buggy. Is there a 3 year old out there that doesn't ride in a buggy? Ok there probably is but they are in a tiny minority. So what do you pay for a buggy for a non disabled children? Well you can get a decent, lightweight branded buggy that will give your child a comfy ride for £100-£150. You'll have loads of choice with that much to spend. Want a full travel system then you can be looking at around £500-£600. Again you'll have plenty choice and be looking at some of the top brands with loads of features to provide comfort, convenience and it'll probably fit in the boot of a standard car. Now, let's say you need a buggy for a disabled child. It's a whole different story. Fortunately our local wheelchair services provides a basic buggy. And when I say basic I mean basic. Want...
When I say car, I mean van. When I say van I mean shed on wheels. I shouldn't really complain though. Whatever we get it will be bigger than the current car so we can fit more stuff in.
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