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.
As accessible as the world is trying to be it'll never be truly accessible. For most places, reasonable adjustments just means level or ramped access and maybe a disabled toilet. Some places go a bit further and allow more space for wheelchairs. Some go the extra mile and install a changing places toilet. We had a trip to Devon recently for a family wedding. The first motorway services was pretty good and had a usable changing places toilet. However the second services we stopped at, the changing places toilet was closed off. Well, they'd put a barrier in the way. The lock was smashed off and the hoist didn't work. We moved the barrier and used it anyway. Two person lift in lieu of the hoist and blocked the door with the chair. Thanks to traffic, roadworks, accidents, etc the journey took over 11 hours so it's not like we could get away without stopping. As anywhere truly accessible usually books up well in advance we had to find somewhere where we could manage. Maybe w...
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...
As a parent to two kids with additional needs it seems like I spend too much time chasing other people to do their job. If all these supposed professionals just did they job they get paid for with prompting that would reduce my stress level by approximately 57.3% All together over the last two days I've spent about an hour on the phone to the GP surgery and then about another 45 minutes filling in forms online and about half an hour in the pharmacy. All because the surgery decided to take my kids of their books without telling me. That's over two hours of my time that could've been better spent scrolling through reels on Instagram. Anyway, here's a photo I took recently of somewhere nice a calm.
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