Sunday, January 27, 2019

How did the story end?

I started writing this particular blog in September of 2004. At that time Explorer #1 was 7 and #2 was 5. They are adults now.

The early years before this blog are a blur now. I think by the time I started writing we had developed a reasonably effective approach and seen some progress. The years between 2000 and 2004 were harder.

We aged a lot in those years.

Now this blog is infrequently updated. That’s partly because of my related book project, partly because adult Explorer challenges are personal, and partly because the complex educational and financial (SSD, etc) challenges we deal with now are managed by my wife — and she doesn’t blog. We’re specialized that way.

So the story continues, but the blogging is less frequent. For the few that have followed this blog I feel like I should provide a summary of sorts. For those who are starting on a similar journey it might help to know one ending, then maybe go back through past posts and pick out things of value.

In general our Explorers have done well. They are both adults, for now both have guardianship status. We have, to date, for the moment, avoided the catastrophes parents of special needs children justly fear.

#1 has cognitive disabilities. Once he was an “explosive child”. Now he reads and even writes a bit, albeit largely on his phone. He has two part time jobs (no benefits) and he has longterm disability status and thus some potential security after our deaths. He’s been a reliable employee. His self-regulation and planning ability continue to improve. He loves his family. His diet could be better; it’s a typical non-college US diet (i.e. terrible). He needs more exercise. He remains a pretty good athlete for someone who rarely practices. 

#2 is on the classic autism “spectrum". He is in a post-secondary transition program and is a B/C student at our local community college (he’s fine with a C). Sadly he has shown zero interest in learning coding —  the one path I think could lead to his financial independence. He is usually delightful but struggles with novelty, travel, and changes in routine. He has screen time issues but works them. His self-regulation continues to improve. His work capacity is limited, but growing. His diet and exercise are better than the US average. He is kind, sweet, compassionate, and a typical middle sibling peacemaker. His great strength is persistence. He has a bad day, but the next day he tries again.

Were I to have read this in 2002 I think I’d have felt relief. The story doesn’t end until the narrator dies; it could all change at any time. But for now, well enough.

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