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On half term

By 12th February 2024 July 28th, 2026 No Comments

First day of half term. We’re making dens (lol, also using the hoist as a key structural piece, which is not what it’s for, but it delights me no end to use this wildly expensive piece of equipment for something as frivolous as den making).

Half term is tricky… it’s not easy to find quiet, accessible activities that would suit our boy (because all the usual places are booked and wildly busy). A friend mentioned how half terms don’t look like they expected before we had disabled kids… and honestly? Same. I thought I’d be taking my kids snowboarding, or to the beach or just… a quick jaunt on a plane across the channel to see Europe.

But honestly, the logistics are too hard. Figuring out insurance I think would need a lot of fandangling, making sure we had all the right equipment, and knowing where to go if anything happened… it feels like a lot, and emotionally? I don’t have the bandwidth.

So we’re at home. Building dens. I know Kai would rather be at school… it’s more fun at school than at home, but here we are. Doing our best.

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