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  • Posted on November 19, 2012 at 9:00 AM

I got a call to pick up Ben. Apparently, over the last few weeks, Ben has been pinching, hitting, and biting. It had gotten bad. He was inconsolable. I needed to pick him up and bring him home.

As soon as I entered the room I knew why.

I’d been to the classroom before and it seemed like a good fit for Ben. There was a lack of certain sensory accommodations, but I gave them recommendations on how to change that. The room was a bit isolated, which meant that it would be quieter than his previous classroom, especially since it would also have fewer students and less traffic outside.

For the first few weeks, Ben did beautifully. He made some progressed and was able to show abilities that his previous school would never have expected of him. But something had changed.

I knew what it was as soon as I entered the classroom. I could hear it. The heat had been turned on. Now, the room was full of a loud, angry-sounding buzz.

For those without sensory processing disorder, this might not seem like such a big deal. Sure, you hear it, but you don’t listen to it. Your brain recognizes the sound, determines that it is not important, and filters it out from your conscious experience of the room. Ben can’t do that and that makes all the difference in the world.

Ben hears it, he listens to it, and the sound causes him pain. Every moment of every day he’s in the classroom, he’s being harassed by a sound he cannot tolerate, but one which he cannot control. To make matters worse, he doesn’t have the words or the communication skills to explain what he’s experiencing to those who don’t share in them.

I’ve seen this time and time again. My sensory processing disorder is much milder than Ben’s, but I knew that if I had to stay in the room, the stress of that sound would cause me a headache within an hour. I can empathize with Ben, because I can understand what he’s experiencing on a personal level.

Ben can’t say he hurts. He can’t say the sound is too loud. He can’t express this with words or pictures or any other form of easily recognized communication. So, he covers his ears. If you make him take his hands off his ears to do work, then the sound hurts him. He will quickly grow frustrated and angry. His ability to cope will lessen as he’s continually exposed to the painful stimuli. He’ll act out. He’ll melt down. It’s inevitable. It’s cumulative. It wears him out and his behaviors wear out the patience and tolerance of those around him.

It’s not enough to understand the theory of sensory processing disorder. For Ben, it’s not a theory at all. It’s an experience. The pain the sound causes is very real. That it “shouldn’t” hurt doesn’t matter. It does hurt. That’s all Ben knows. But he can’t say that. So, I have to say it for him. I have to teach others to empathize with the way Ben experiences the world. That sound is the trigger that will set Ben off like a bullet from a gun. Without intervention, that bullet is going to hit a powder keg and explode.

In fact, metaphorically speaking, that’s just what happened.

The Inner Narrative

  • Posted on October 12, 2012 at 8:00 AM

I have this quirk, though I’m not sure how much this particular quirk is shared by others. I live most of my life in my own head. I’m surrounded by stimulation. Most of it is mundane and easy to navigate, so I can go about my business on auto-pilot. Inside, however, there’s a narrative going on that is quite removed from what my external body is experiencing. It’s like an advanced form of daydreaming, and I have been told that it goes along quite well with my life as a writer. I have heard other kinds of artists share similar experiences.

Maintaining a semblance of outward normalcy while keeping this inner narrative inside is a skill I learned in school. Teachers repeat things. I would guess that over two thirds of my class time (before college) was “wasted” with repeated information. I realize that most people learn better this way. But, for me, repeating information orally doesn’t really work. Either I got it the first time or I won’t get it at all. Repeating it—unless I didn’t actually hear it—doesn’t increase the chances of my consuming the information. So all this repetition left me bored

To alleviate that boredom my brain entertained itself, which it was inclined to do anyway. I learned that if I maintained the appearance of paying attention, then I’d be left to ignore the repetitions. If I slipped—smiling at something that amused me while the teacher was being serious, for example—then I would be called upon to participate. Blah. I must admit, however, that I didn’t really perfect this technique until the eighth grade—and the memory of that incident still makes me smile. Just in case anyone is under the impression that I don’t have a mischievous side.

I’m quite familiar with my own inner narrative, and I’ve adapted this skill so that I can continue my narrative while living out my rather mundane (relative to that narrative) existence.

Here’s the thing: I have three children and I know two of them are “like me” in this regard, except that neither of them has yet learned to internalize this narrative. Both Willy and Ben are as I was when I was little—sharing their inner narrative orally with anyone who will listen, whether the timing is appropriate or not. So much so that they have trouble turning it off. I can relate—I still have trouble turning it off, especially when I’m trying to fall asleep.

Then, there’s Alex. Alex is my dear boy, my conundrum. While I’m not fond of the puzzle piece as a symbol of autism, Alex is the child of mine that gives the most credence to its validity. Nobody really “gets” Alex. It’s not that we haven’t made connections with him. But there’s a part of Alex—a big part—that continues to be out of our reach. Without the communication component in place to a greater degree than it is, Alex cannot share his inner narrative with us. And, because words are something of a “foreign language” to Alex, I’m not even sure talking would empower him to share that narrative—his narrative may very well be experienced in a totally different form.

I think about Alex and puzzle pieces. It seems to me that Alex has a “language” all his own and that to communicate with us requires translation. He struggles to translate for us and we struggle to translate for ourselves. But it’s more than just the language, it’s like he has a culture all his own, too. And this is rather easy to explain: We consume language and culture by absorbing what is around us, and it shapes and influences who we become. I’m not an American because I was born an American; I’m an American because I’ve lived my entire life as an American. But Alex doesn’t absorb language and culture the same way, so he hasn’t been shaped and influenced the same way.

The question, then, is how do we bridge the gap? How do we learn to communicate with him, to share who we are with him, and to help him share who he is with us? How do we help him to his internal narrative?