Dear family and friends,
Grayson seems to be slipping farther down the competency scale lately, especially in verbal expressions. I am lucky to get even one word answers again. In addition, he is not willing to stick with an exercise, game, or activity more than a few seconds and this is proving a real challenge for our new caregiver.
It's tricky to know how to fill his waking hours with more than just motoring him through the basics of waking, eating, drinking, brushing teeth, showering, shaving, hourly toileting, cleaning hands,… repeat.
The goal is to fill the remaining time with enough routine AND enough challenge to strengthen him physically and mentally to lead him to be the best he can be – whatever that is.
During cycles of improvement, even tiny improvement, it is rewarding and motivating to us. That helps bring out our patience and creativity as well as hope. It's natural to feel that we are building on a foundation and that the progress will stick.
During an extended time of regression (or suppression) it is can be frustrating and a little discouraging. The progress doesn't really stick at all. It comes and goes and cannot be depended on.
So we are always aiming at a moving target – in the short run and the long run.
If it is unsettling for us, I can imagine it is even more challenging for a young caregiver. We draw on 27 years of loving him; she has had only a month. She is, however, quite bright and a fast study. She will learn to dance to his music.
In hope,
Regina
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