My other kind of random thoughts about this-- because my family is much like Dee Dee's I think, in our philosophy about disability:
The early adolescent years are VERY hard, because with greater demand on self-advocacy as an age-appropriate thing, you are also seeing a direct collision with challenges to their own self-acceptance and construction of their emerging adult identity-- they are simply uncomfortable in their own skins a lot anyway-- and disability makes it a thousand times worse.
As a mom, I have the heart-breaking job of convincing my DD that she has to accept that her life is harder than most people's, but that this is NO reason to feel sorry for herself (even if underneath it all, I still feel angry sometimes or sorry FOR her struggles). I'm awfully proud of her for managing it better than I do, honestly.
I openly celebrate my daughter's self-advocacy. As much or more than her academic successes, if that makes sense. We celebrate those steps toward independent management, and point them out when they happen. I don't know if that is right or wrong, but it is something that we do by instinct.
