I would like to hear from parents of DMD boys over 18 (life after high school). My son is 19 years old and finished high school with honors. He is not interested in pursuing online college and we didn't push the issue of the "future". Since graduating high school he has become more "isolated" mainly due to the fact that all of his friends have all moved in different directions, and are not as close to anyone of their old friends as they used to be, but also because when they do get together, he doesn't have the same kind of "new" experiences to share.
He's been very active in playing poker tournaments (which his brother took him to) but after a recent hospitalization (on a ventilator for 8 days) his poker playing days are most likely also a thing of the past. His spirits are good and he seems to be mainly focused on spending time with the family, which is great, but due to the fact that we are a divorced family, it does make it a little more complicated. He lives with his dad and brother, but seems to desire more of the female "nurturing" we give (although,it annoys him at times). And we get along fine for the moment, but it gets a little stressful sometimes between the rest of us.
I'm mainly interested in knowing how other families are coping at this age. My son never asked any questions about the future, but have rather always had the "OK, let's do this a different way" attitude when he came upon yet another loss of function.......... and he's not aware of the life expectancy for DMD (as far as I know).
I'd love to hear from anyone,