Our children are not born to fulfill our lives, or to make right the things that have gone wrong for us. They make their own choices and create their own futures.

This is as it should be.

Parents who fail to grasp that rather obvious point can sometimes do a lot of damage to the young lives they are shaping. For example, I can think of a guy I used to know who lived in emotional pain and had self-destructive behaviors because of his father’s disapproval. (The father’s plan had been for him to attend The Citadel, which he chose not to do.)

I’m wondering, now that final tweaking and wordsmithing of WATB is over, how long it will be before some reader sees the book in those terms. In reading other people’s books, I can be very critical if it appears that an author has neglected to think matters through (just see the one-star reviews I’ve posted on Goodreads). So now the doubts are taking root: Have I adequately justified the campaign to help Joseph? When will readers begin complaining that his mother and I sought to make him into something he was not–and worse, that as a frustrated student of medicine, I was using his untreated condition as an excuse to play doctor?

This is one of the questions specifically tackled over on the FAQs page, and in the book’s epilogue if nowhere else, but the basic facts of the story ought to be sufficient, seems to me. When he was little, Joseph was in great distress on a continuing basis. I don’t think there’s a parent alive who’d be content to leave a kid in the shape he was then. When he finally attained peace within himself, and then, with help, when he slowly began acquiring skills such as the ability to walk, no one we knew at the time suggested that this might somehow be a bad thing. It was pretty evident that he thought the changes were good!

But experience shows that the debate is inevitable. The only unknown is how soon it will be raised, and whether this story can drive it to a new and potentially more constructive plane.

Unfortunately, life with Joseph continues to provide illustrations of why disability is in the interests of no one, least of all the child. This month, Joseph will have a dental appointment. He hates going to the dentist. Yeah, I know, nobody thinks it’s fun to sit in that chair. But Joseph fights it! He fights it with everything he has, and believe me the guy is pretty strong. When he was smaller, I tried to hold him down while the dentist pried his mouth open and dealt with the risk of being bitten. In recent years, they’ve had to bring in an anesthesiologist to fully sedate him. That means he cannot eat for eight hours prior to the event, and he’s an hour or two recovering afterwards. Oh, and it means an extra outlay of about a thousand bucks. Just for routine cleaning and x-rays. Consequently, he doesn’t get dental care as often as the rest of us do, and there are predictable consequences of that.

Dental visits are just one example of why I hate disability. Yes, it’s a continuing burden for me, but that is trivial next to the suffering imposed on my son. I don’t want my son to suffer. When somebody tells me that I’m wrong in seeking to impose something unnatural on him, what I hear does not sound well-meaning. If the question comes up during a reading or an interview, I hope to be able to discuss the matter calmly, in a way that can be understood by the other side. This post is a practice run at that. Feedback is welcome.

Tags: disability, interventions

This entry was posted on March 13th, 2011 and is filed under kids. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.