Posted by Trixter on October 2, 2007
My eldest son Sam, you’ll recall, is autistic. (Technically, it’s PDDNOS, which is a fancy way of saying “we don’t know” in an official-sounding capacity.) He has many issues, such as being lost in his own world for periods of time so long that he’s simply unavailable. Up to about a year ago, he would spend between 50% and 80% of his time in his own world, which makes it difficult to teach him how to read, how to write, how to behave… anything, really. Especially since, when you try to pull him out of his world and back into ours, he gets frustrated and angry. So naturally he’s fallen way behind his peers in school by several grade levels, and will most likely live with us for a few decades instead of going to college. I’m ok with this; I came to terms with it many years ago.
Once in a great while, there are moments that can floor you. For some unknown reason we haven’t discovered yet, there are a few times each week when something happens and he’s running at full capacity, for just a few seconds or so. For that brief time, when all synapses are firing, a mental window opens up and you can see that, yes, there really is a regular kid trapped in there. Sometimes they’re subtle, like using a slang phrase with perfect intonation at an appropriate time (autistic kids can’t empathize, so this is major); other times, it’s a fleeting moment of understanding, usually unspoken, about something you both saw or heard. (Laughing at the same slapstick routine at the same moments is a personal favorite.) You can never see those moments coming — there’s no warning or triggers we can notice — but for a parent, they are worth everything in the world. If I could sell every piece of software and hardware I own to predict when that window will open up, I’d do it without hesitation. If I could live completely without technology to force that window to last longer, I would start the Amish pilgrimage this very second.
About a year ago we were able to find a medication dosage that finally started to make some progress; it keeps him just a little bit more in the here and now, about 30 more minutes a day, with less consequences (for us) when we try to pull him into our world. This is just enough extra time to get him reading at a 1st or 2nd grade level. His reading is stilted, spotty, full of 5-second pauses, and doesn’t flow well. But it’s reading, and when he’s not frustrated, it is functional.
After a lengthy battle with the children to get them to bed, I was about to retire for the day when I heard noises coming from their bedroom area. Thinking it was Max, our younger son who has a motormouth stuck at 8500 RPM, I went over to tell Max to pipe down and get to sleep. I froze when I realized it was Sam. He was reading a 1st-grade level book, out loud, to himself, in bed. This act alone is a monumental first. But what knocked the wind out of me was that he was reading when his mental window was open, and what came out was a perfect understanding and command of the meaning of the sentences, their tone, their inflection, cadence, everything. The delivery was stilted, but the comprehension was easily a few years beyond his peers (who usually read aloud in near monotone).
He eventually noticed me standing in the doorway, and asked me why I was crying. I told him I had forgotten how beautiful the view through his window was.