Project Alex: A New Chapter

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.

Stay tuned.

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  1. Kath
    Posted November 5, 2014 at 1:22 pm | Permalink

    I look forward to reading your thinking as you try to navigate all this. While the specifics of every situation are different, I understand the general feelings involved. If you’d ever like me to put you in touch with my parents, I’d be happy to.


  2. Posted November 5, 2014 at 6:00 pm | Permalink

    Thank you for writing about this topic. My son, Justin, 13 also is a full mutation and our journey are all unique but similar. I live on Long Island and have met many amazing people on our Fragile X journey. I am currently a Board member of the National Fragile X Foundation and am the incoming VP of the Board. My wife and I started the Fly with me Fund several years ago to help families get the services they needed but could not necessarily afford themselves. We have found sharing and being apart of this special community the best source of strength in both good and bad times. Please feel free to email me if you wish to continue this conversations. Brian


  3. Eric Berlin
    Posted November 5, 2014 at 7:51 pm | Permalink

    Welcome, Brian. We’ve never been terribly active in the Fragile X community — perhaps that will change if this project takes off.


  4. Patrick Quinn
    Posted November 6, 2014 at 9:27 am | Permalink

    Eric, your writing is a good conduit for opening doors. The service delivery system, as you know, requires skilled navigation and more than a little bit of luck… we have to keep turning over those rocks. In the meantime, be sure to engage the transition coordinator (s) at Alex’s school. We need to press for meaningful future life experience; and no one should ever be discounted from the possibility of employment. More to come, love and regards, Pat. Quinn.


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