Over the years, this blog has discussed politics, and writing, and puzzles. There were times where I would regularly jot down every random thought that entered my head, and there were far more frequent times when the blog wasn’t updated at all. Not that long ago, I exhaustively discussed my participation in a weeks-long trivia game. You just never know what you’re going to get around here.
Well, now this blog opens a new chapter, in which I attempt to dissect, digest, and generally figure out the single most pressing issue of my life.
My son Alex is 14 years old, and he has Fragile X Syndrome. This means that his X chromosome is literally broken. This has imbued him with all kinds of disabilities, both physical (low muscle tone, poor coordination) and intellectual (his reading skills are limited, and he plateaued in math about eight years ago).
I have very little clue what is supposed to happen to Alex when he is an adult… particularly after my wife and I have died.
We have waded hip deep into the world of special-needs trusts, Section 8 Housing, Medicaid, the services supplied by the Department for Developmental Services, and a host of other topics. We go to seminars, we attend webinars, we read news stories, we dig through Web sites. (By “we” I mean, primarily, my wife.) The whole endeavor reminds me of the “subtraction stew” that Milo and his friends eat in The Phantom Tollbooth. For every fact we consume about caring for adults with disabilities, it feels like we understand less and less.
And so, we turn to this blog. The plan is to delve into subjects related to the future care and feeding of Alex and kids like him, and explain them to you, Imaginary Reader, in a straightforward manner, so that in so doing, I might come to understand all this better myself. Also, hopefully my declaration that this is an Important and Ongoing Project will spur me to do the research that will need to occur if this is going to work.