Following up on yesterdays sensory win, here we are today with HATS! (Yes, we’re all very fancy. It’s not like we don’t have an entire room full with expensive sensory equipment 🙄).
But you know what? Mikaere loved this morning. Dressing up with beads and hats and “kings shawl”, looking in the mirror, us making a big fuss – it was magic with many smiles and lots of delight.
Physio is not fun. Being forced into positions and moved about and not having a choice in what is happening to your body – that is not fun. Stretches can hurt, and Mikaere isn’t able to negotiate or talk back or even say that hurts, I’ve had enough, or any of those things you and I have the option to say. There’s no autonomy for him. No independence. We watch him closely to try read his body language and facial expressions, but that’s not the same. It’s not even always accurate (could you imagine getting through the day just communicating with facial expressions? How well would you be understood, do you think?)
And so we try to make physio fun. We try. It’s not always successful. He’s not always keen to have bells shaken in his face, or bang the drums or whatever. It was nice today to change it up, to do something different and joyful.
And I forget that it doesn’t have to be fancy. Some beads, an old hat, a piece of large fabric and a mirror, that’s what worked today.
So, hurrah for hats! What magic sensory tricks are you guys using right now? Share your tips and tricks with me, so I can try them with Mikaere?
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#physio#sensoryPlay#hats
