Sound advice.
My son has his fave movies based on true life of those with the same severe disability.
"A Test Of Love"
"My Left Foot"
"Gabby" short for Gabreilla
Those are his personal spirit lifters.
Also he recommends them to new people in his life so they can be educated and he doesn't have to answer the million ??????'s
Everyone here has been so kind. I am checking into everyones links. Their is so much more I don't know then I do. I will keep you posted when I start to get a handle on the nature of the disease. It helps knowing others have walked this road with their kids before us. Not knowing what to do or say, all I can think is may God be with us all.