He was supposed to stay a child forever. I know "all parents" pass this benchmark as their children turn 18 and go off to college or find jobs, etc., but it is different for us caregivers. And, no, it's not a mourning or grieving process. Each of us knows by now, more or less, how our child will fit (or not fit) into the world. So I'm not shocked that Robert will not go on to college. I don't feel unhinged or upset about the fact that his peers are.
What concerns me is his eventual departure from school at about age 21. School provides normalizing social context. And then the real world steps in. The real world that some acquaintances and other truly uninspiring or unpleasant people or relatives have been tsk-tsking you about for some time now. Now is the point at which your child becomes truly isolated. And how will you fill the gaps?
That's the real "plan" in transition planning. The rest is, well, necessary, but just the exoskeleton. If the State of Maryland does anything for Robert, it will be the provision of medical and nursing care. Some cockamamie day program that has nothing to do with including him in the society around him. Unlike other children, no other relatives can really take him out or have him over. There's too much specialty care involved.
But he was supposed to stay a child. Where I could protect him, where I didn't have to expose him to ugliness. Whatever we've done for him, we've made him, I think, feel good about his life, about himself, about his personhood.