Hi everyone, I don't post often but love reading everyone's input.
We're now in our 5th year since diagnosis, and I thought I'd share a few helpful tips I've discovered recently.
1. If you use a letter board to help your 'patient' communicate, don't necessarily default to a QWERTY layout, as our speech therapist did. J was a 1 finger typer, and I thought he struggled to find the letters. So we tried an ABC layout and it was much better!
2. J has started writing letters on my hand as a quick and easy way to communicate. I hold my hand open in front of him, and he spells out words by writing the letters on my palm. A Y for yes and an N for no. Seems to be easier for him than thumbs up/thumbs down. He manages to communicate fairly complex wishes.
3. Get an electric toothbrush and a waterpick. This looks like an electric toothbrush but squirts water out of a thin nozzle. Great to clean between his teeth now that he can no longer floss. And I can't floss his teeth for him! It's also great for rinsing out his mouth after brushing his teeth. We used a syringe to inject water into his mouth after he could no longer such through a straw, but this is better. I add a half a capful of mouthwash into the little water tank of the waterpick too, and that has also helped with his mouth hygiene. The waterpick does shoot water out at quite a force so be careful. It can be a bit messy so we do this in the shower, if possible, as J likes to shower 2x a day.
Hope these little tips help. Love and light to all of you.