two steps forward, one step sideways….

There is a certain phenomena that most of us parents of kids on the spectrum are familiar with. It’s the progression/regression dance. We see our kids do this over and over again. By the time your child reaches our son’s age, you may even be expecting it. Our Macaroon is turning seven in just a week or so, and he’s been doing it for as long as I can remember.

When he was a baby, before I paid attention to my concerns, it was a handy thing that he forgot things like, how to break into cabinets, or what was in a drawer, or that I stashed treats in certain spots. It was worrying too, obviously, as I really found when I couldn’t teach him body parts, or how to hold a spoon, or the worst, when he said “mama” one time, then never again.

Once he hit school age, I could really see the pattern emerge, though. I’m not talking about just the casual school environment that he was in during his first preschool year. It wasn’t until he was in a real one to one situation. We’d see him gain skills, and then plateau for ages. We were baffled about that, until he’d suddenly fall off, and start showing behaviors he’d progressed beyond. For him it’s things like potty accidents, chewing on everything, grinding his teeth, and weeping over everything. And then, after we’d start despairing, and asking what in the world was going on at school, he’d shoot forward again with progress.

By now, we’ve come to expect it. We have handfuls of chewy tubes onhand for when his chewing/grinding fits strike, and make sure we tell him to go to the bathroom about every half hour. Sometimes new things crop up, or ancient habits resurface, like his old penchant for eating books or magazines. I try really hard not to react too much to it by now. I just remove the offending item, tell him that it’s a no-no, and redirect him with something new, and preferably, indestructable.

Other parents report another phenomenon we witnessed during one year. During this one year, Macaroon would spike these inexplicable fevers, invariably resulting in him getting sent home for the required 48 hours. I’m talking like 103 degrees, with no other symptoms. Zero. Nothing to help pinpoint the source of whatever was going on. However, these instances were invariably followed by a sudden spike in him evidencing new skills or learning. After these fevers, for instance, were the first moments he showed us how high he could count (nearly to 100), that he knew all his colors, all his letters, and that he could sight read certain things. Then, just as strangely, the fevers ceased. We haven’t had a single reoccurrence in two years now, and I do have moments of regret about that, despite how disruptive to routine it is to have to go retrieve a child from school at unexpected moments.

In all, these filips to the learning curve for a chlid on the spectrum ought to be viewed as “things beyond the parent’s control.” It isn’t easy, but if you sit back, or keep a datebook (or journal) of the child’s typical and atypical behaviors, you may realize what we did: we can’t beat ourselves up for this stuff. The human brain is so little understood. We hear it all the time, that we’ve barely scratched the surface of the brain’s workings and potential. For the autistic brain, we only know for certain that some particular pathways are missing that exist in other (so-called “neurotypical”) brains. I’m betting that the autistic brain has a multitude of pathways that the NT brains do NOT have. We have not begun to understand the differences, and, I think, it’s safe to say that it’s not as important as trying to understand our kids as they are, and to help them understand us as we are.

As my son gets older, and can read and write on his own, I hope to get him to track his own state of being every day in a journal, and perhaps his perceptions of the people around him. And if the rest of the family logs their own emotions, wellbeing, and so forth, we can compare things now and then. That, to me, will be a pretty useful tool.

For now, and for those out there who don’t know what’s going on with their kids, I hope that parents and families can take this advice to take it all with a grain of salt and dash of patience. Every squall passes,  and sometimes, the storm simply washes everything clean. Patience and persistent love. After all, my Macaroon started coming to me to have me kiss his boo-boo’s, just out of the blue one day, and still does it, on his own, because it seems to be something that he has learned to love and need.