The Price

Everything costs something, though I don’t like the idea of “cost” so much. It implies price, which implies putting a higher or lower value on whatever it is you value. I understand there’s a hierarchy of needs, maybe even of desires. Conversely, cost can be a good thing, because cost necessarily involves worth.

I like to think about price in terms of relationship. True relationship involves reciprocity. And what’s got me thinking about this, primarily, is Jonah. He’s always keeping me on my toes, that one. I’m almost constantly in the process of evaluating and reevaluating the way I think about things, about him, in terms of what he needs (or doesn’t).

J’s making great strides in so many ways. They’re working him pretty intensely at school, and there’s been real academic progress—though I find it strange writing about my five-year-old (almost six) using the word “academic.” His writing is becoming, well, almost legible. He can usually recognize every letter of the alphabet and numbers up to 20. And here’s an exciting one: he’s starting to recognize words. He can sound out short words if he takes his time. Hearing your child read for the first time is nothing less than magical.

So on the flip side…

Jonah’s been in high gear since Christmas. Considering he’s on the high gear end of things generally (and not so generally) speaking, this fact must be carefully considered.

Other than the “I hate school” mantra he’s finally working his way out of, he’s been chewing on the knuckle side of his hands, coming home with red scaly patches that we massage every night with hand cream. He bites at his lower lip; sometimes it bleeds, sometimes he develops a chapped, red line beneath it, like an elderly woman’s lip liner gone awry.

We get reports of “crazy in his body” or “Tigger all the time.” He has to leave circle because he’s a danger to others (rocking back and forth, putting his feet—with shoes—in the air while rocking from side to side). Sometimes he dumps work or just won’t do it. It’s hard, staying focused on a task. The effort produces a sensory overload, and J’s brain/body respond in strange and fascinating ways. Sometimes he slips into this falsetto, cartoony voice that either speaks nonsensical phrases or repeats short scripts from one or another of his cartoon fascinations—accompanied by a “loosey goosey” kind of flopping about. Most often he ends up on the ground, only to get up and start again.

Yesterday at the park, this is the way J introduced himself to a father and his two young children. They immediately headed in another direction. It’s kind of heart breaking, because he wanted to interact. He was interacting. They just didn’t know what to make of it. Frankly, neither do I.

I’ve read several posts on autism mama blogs lately that reiterate the belief that “behavior is communication.” Then what’s J trying to say? We’ve been trying to figure this out from the moment he was born (I’m not exaggerating here). How can we help him start to recognize his own needs so that he can get those needs met in a constructive way? And what exactly do we mean by constructive? I’m not trying to make him “normal” (as if that were possible), but honestly, when he acts like this in public, it’s easier to either shut him down by commanding him to stop or point him in another direction (away from the people he’s trying to interact with) than it is to enter into his world and try to help. That’s my struggle, and I’m not always proud of how I respond to it.

J’s IEP is coming up. In the next few weeks, there’ll be a lot of talk about what he can’t do, about the assumed benchmarks for his age and grade level, about his interactions with peers. I will inevitably cry while talking about him with his occupational therapist and his classroom aid and intervention specialist. As hard as it can be, I’m grateful for the reality check it provides. Not just in terms of Jonah, but also—probably more importantly—for me. I don’t know who needs therapy and educating more, J or me.

The two of us are forever inquiring into each other’s worlds. He’s always working to make sense of my sometimes volatile, ever-shifting emotions. I’m trying to figure why his after-school snack choice is sending him to the dark side as he screams at me, “But I DO want cheese! AND pretzels!”

It’s ironic really. John wondered aloud the other day (something I wish he’d do more often) how he ended up with two such intensely emotional folk. He says he’s no good at knowing how to help us. I know we can be confounding, but Jonah and I both name him one of our favorite people on the planet. It goes to show how hard it can be to help, and love, the ones you’re with.

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One thought on “The Price

  1. Jennifer, my heart goes out to you. I don’t even know what to say, except, this particular post really affected me. Please don’t hesitate to call if you ever need a listening ear.

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