Recently, I’ve been talking with someone who has a different perspective when it comes to assessing what children with special needs can do. In the context of what we’re doing and why we’re talking, those differences are part of the value. By sharing them, explaining them, and discussing those differences in a safe, neutral environment, the hope is that we will be able to broaden each other’s understanding and, eventually, share those insights with others.
As a parent, I concentrate on what my kids can do and why they can or cannot do something in a particular environment. If something isn’t going well, I quickly assess the what and the how, and then I jump to the why. My thinking is that if we understand why, we can address the situation in a way that has the desired results. For example, it is very frustrating for me that we don’t know why Alex doesn’t talk. Is it because of the autism? Is it because of the brain cyst? Is it because of something else that we know about, something that has importance we’ve failed to recognize? Or it is because of something that we don’t even know about yet? My thinking is that if we understood the why, then we might be able to change the circumstances surrounding the what to address the why, whether that would be triggering latent speech abilities or finding a successful alternative communication system.
The person with whom I’ve been speaking concentrates more on the what then the why. The why is important, but in his mind understanding the what and the where—the behaviors and when and where they occur—thoroughly is an important step that shouldn’t be rushed. A quick assessment isn’t enough, because the what and the where (as I understand what he was saying) help to reveal the why.
He concentrates on what kids actually do, and where they do it. To him, starting where they’re at is about what they do. But what if where they’re at and what they do doesn’t reflect what they can do, what they could be doing if we could address the why?
Alex can talk in clear sentences, at significant length, in those rare moments where—whatever it is that makes those moments possible. The words are there. I’ve heard them. I’ve heard him speak paragraphs of words, structured in meaningful and appropriate sentences, with clear diction. The behavior does exist, but it’s not really his behavior since this has happened maybe four times in the last five years. Most of the time Alex’s vocalizations just come out as single, repeated syllables or his words—maybe a few times a day—come out as garbled fragments that sound as if they’ve been distorted through some audio equipment. Occasionally, he’ll sing snippets of song lyrics which may or may not come out more clearly.
The ability to speak is there. But there is some sort of interference. (I think I’d love to sit down with Sam and see what insights he might be able to offer.) The interference is the why, and if we could alleviate it, then we could have more of the what. But the interference, in a way, is also the what. And then it all gets tangled in my mind and I don’t know where to go from here.
From a strictly scholastic perspective, I get why knowing what Alex does (the behaviors themselves) is important. But I still think knowing what he can do, what he could do more of if only… That’s important too.