I was never raised in an environment where I was praised for my very existence, even if supposedly I was very easy to take care of, a fast learner. So it’s not like I’ve grown accustomed to being coddled or heavily encouraged by positivity, but I discovered early on — like, within the first year — that it is absolutely essential to honor the little gains you make.
- wearing flip flops
- putting your hair in a ponytail
- wearing any shoe that’s not a gym shoe
- putting on socks
- tying a ribbon, or apron (any kind of straps)
- keeping your leg straight as you stand, and not hyperextended backward
- raising your arm up overhead
- walking, with both legs swinging straight across under your hips rather than up and around
- keeping your wrist straight
- peeling afruits and vegetables
- cutting meat at the dining table
- and much more!
Here’s an idea. If you don’t have an affected side, to better understand what your loved one is forced to do every day — without the escape of just untying themselves — try going for an hour or two (or if you’re really hardcore, a whole day) with an arm tied behind your back. Or with an oven mitt duct taped to your arm. Try it and see how little you’ll be able to do — and remember that for us it’s like that, but worse. Because it’s involuntary, and more frustrating because the limb you want to use (the one you’re simulating with your hand behind your back or in the mitt) is right there, limp, free to do what you want — but unable to.