“Begin at the beginning,” the King said, very gravely, “and go on till you come to the end: then stop.”
― Lewis Carroll, Alice in Wonderland
It arrived in the mail last Saturday, and we read it (as we usually do) with a bit of tongue-in-cheek solemnity. The psychologist who evaluated J on a very, very cold Friday two weeks ago sent his report regarding his condition. Newsflash! J is autistic. He also exhibits a moderate level of mental retardation.
Stop the presses. I need to take a deep breath before I let that sink in…again.
Sarcasm doesn’t help, I know, but it does bring levity to the inevitably thick feeling that always comes attached to the constant confirmation of what one knows. In a nutshell, J is a (take out your salt shakers, please) very well-mannered, self-aware, pleasant young man who is autistic. His score would have been higher if we didn’t collectively work as hard as we do to improve his skills; I don’t regret the efforts we’ve put into making his life (and everyone else’s around him) a little easier, even if it might impact what services he can receive as he gets older.
I’ve filed the report with all the others. I read it, yes, quite thoroughly, and I noted what was different (even if slightly) from previous ones. Every report indicates that J has reached a plateau, and every plateau that is recorded is different from the ones before. In my humble opinion, J simply takes breaks before climbing a little higher, stepping a little farther ahead. I am not intimidated by plateaus as much as I am intimidated by professionals’ certainty of a plateau being the end of the road.
Our satellite navigation thing always says “recalculating.” I am not daunted by recalculations. A little annoyed by the time it takes to achieve a new “flight pattern,” but not daunted at all. I grew up in the days of foldable maps you got from the AAA or the garage down the street. As a matter of fact, I was raised in a society where directions are far from technical, and people don’t seem to get lost…we simply find a different way of “getting there.” Back home we often give directions by saying “take the second road on the left after you get to where the old oil drums are on the right side of the road…not the ones painted blue…it’s the ones painted yellow. When you take that second road you’re going to see a tree. My cousin’s car hit that tree about five years ago on a night when it was raining and the tree is gouged but it still flowers every summer. A few feet farther down the road past that tree, there’s a driveway…don’t go into that one…you have to keep going…going…going…and there’s a dip in the road and it forks almost immediately…stay on the right…you’ll see a fence…” It’s not recalculating so much as narrating your way through a maze as you go along. The system has worked so far because J is so much more than the sum of his parts…
The report comments on J’s outfit and his facial hair. This was funny, but it was also meaningful. J has a very distinctive style that he feels very proud of, and he chooses his clothes, and he has a say in how his hair is groomed. The psych, by the way, didn’t notice J covers his ears because J has improved vastly in this area…to the point where he didn’t give the impression that he has any sensory issues other than touching things to determine their texture. The whole “he’s got hypersensitive hearing and he covers his ears to regulate” flew over the entire staff’s heads because J behaved like the type of person that doesn’t do that around strangers. I wonder what would have happened if he’d still been attached to his four boxing gloves…
All in all, the results of the test were to be expected. When the scores were compared, J’s teacher and I answered in pretty much the same way. Our scores for J were exactly one point apart, and -after discussing it briefly once the report had arrived- we reached the conclusion that that one point counts for very little. She sees his social side more than I do because he has peers he interacts with over there, and I see the self-help side more than she does because I have only ONE person to deal with whereas she has a classroom full of them. J is consistent, and he is by far more advanced than the last evaluation he was subjected to indicated at the time.
Every assessor assesses progress, and then assesses that it cannot possibly continue. They see Super Mario Bros. when they should be looking at Donkey Kong. Once in a while a barrel comes out of nowhere (usually from the hands of a gorilla that is trying to waylay us,) but we keep trying…even when the game gets reset. Once in a while, we put down the controller and forget that we’re playing. Once in a while we start over from scratch. Once in a while we forget we have a console to play with, and we return to the basics.
So we’ve hit another plateau! So it’ll keep happening over and over and over again. So this is the story of our lives, and we have the same diagnosis we’ve had a million times over. The prognosis is the same, and yet from a different angle. We can’t explain the many plateaus to every diagnostician because we will be looked at like we’re imagining things.
The thing is this: we do a lot of pedaling through mud, but the mud splatters and gets moved, even if we don’t move forward. We use up a lot of energy; we get tired; we get frustrated; we wonder why we’re doing it; we throw our hands up in the air and say “what the heck are we doing???”
We’re not stopping. Muddy bike, gorillas with barrels, diagnosticians who see only one picture instead of the album… The reason J looks like he’s not as badly off as he should be is because we don’t stop. The reason J keeps hitting plateaus is because we don’t stop. We move sideways when up and forward isn’t possible.
We’re not stopping…