One aspect of rearing a mentally disabled child that I don’t see talked about much: For your own sanity, you need to be able to change your reasons for being a parent.
Of course, that’s true to a degree for all parents — for example, countless folks have thought they were rearing a new member of religion X/political belief Y/culture Z, only to find their child goes their own way. But most parents realize that their main purpose is to raise the next generation of adults. And a severely mentally disabled child is never going to become an adult in the way that a mentally able child, even one with physical disabilities, will be able to.
Changing my reasons is a process that I’ve mostly but not completely managed. Why did I want kids originally? Well, in part because it was clearly expected of me, and in part because I’m the latest in a long line of lifeforms that successfully reproduced and biology didn’t plan to stop with me. But also, I looked forward to seeing a new person grow up and eventually take his or her place in the world as a competent and responsible adult. I didn’t expect my child to change the world — I certainly haven’t, and that kid shares half my genes — but I expected them to at least be able to take care of themselves and others.
I’m not going to get that.
If I’m lucky, I’ll get a grown person who doesn’t injure others even when he’s mad, does basic household tasks, and knows how to use a toilet. Maybe he’ll even be able to hold a job, with a suitably sheltered workplace.
But most likely, he’ll always need someone to look after him. I’ll never be able to put him down as my designated decisionmaker in case I become incapacitated. He’s not likely to marry. If I have grandchildren, it won’t be because he married, but because he raped someone — or someone raped him. He’s never going to be an independent adult, competent to manage his own affairs. (Yes, it’s possible that he could still surprise me. But let’s face it: he’s almost eight, and it’s getting less and less likely.)
So I’ve had to change my mind after the fact about why I’m a parent. It’s no longer because I want to add one or more competent adults to the world. It’s simply because my actions created a new person, and I might as well enjoy watching him explore this place to the best of his abilities, and help him discover it further. I have to believe that my son’s life has value and purpose, even though he’s not going to make any direct intellectual, social, or economic contribution to the world.
After all, he’s already caused one person to earn a degree in working with autistic kids, because she found teaching him so rewarding. Who knows what else he’ll do?