The View From His World

I like to be understood. We all do. If I get the feeling that the person I’m explaining my point of view to doesn’t full grasp what I mean, I immediately start to break things down to its most basic level. I usually know that the point has gotten across by the time my wife holds her head and exclaims:

Enough with the analogies! I get it.

The feeling that people aren’t comprehending what you’re trying to tell them can be maddening. Even with a dictionary, encyclopedia, and Powerpoint presentation, it can be almost impossible to get the right information to come out of your mouth the right way.

My son doesn’t have any of those resources at his disposal. In fact, being non-verbal, he doesn’t have any words at all. For the entire six years that he’s been alive, all he’s had is hand motions, iPad communication programs, and the hope that those around him will be able to figure things out. As time has gone on, we’ve tried to do just that.

So many of the questions I wonder about Lucas’s ability to communicate center around me. Even those that seem to be about him are still really about me. They’re about how I can understand him or how I can figure out a better way to make his life easier. While they might superficially seem to focus on him, they’re really more about my own frustrations with trying to figure out his needs. That doesn’t mean that they’re not about how to make his life easier, it just means that they’re more from my perspective than his.

Through the years, I’ve learned to anticipate his emotions and wants ahead of time. Without the ability to ask for a particular snack or nudge me to bring him up to bed, Lucas looks for us to figure all that out. We’ve gotten better in decoding these desires, but there are still plenty of times throughout the day that I’m left wondering what exactly he’s thinking.

That’s the point of view that we lose sight of sometimes. As parents of special needs children, we think about our role in their lives. What can we do? How can we make communication easier? How can we deal with the frustration of not being able to understand?

When you turn it around, though, the entire situation takes a sharp turn. What about him? What about the frustration he must feel when he’s desperate to take a nap and someone hands him a bag of fruit snacks? How maddening must it be when no one knows what you want? Even harder, what about the times when he, just like every other six year old, is sad and doesn’t understand his own feelings enough to know why he’s upset?

If I was in that situation, it would make me want to bang my head and throw myself on the ground. Sometimes, he’ll do just that. For a long while, I simply saw it as a tantrum or an extension of his Autism. I would tell myself, “That’s what kids with Autism do. They hit their heads when they get upset.”

As he grew and I got to know him better, I realized that it wasn’t simply something he did because of Autism. Sure, it plays a role, but it’s how he expresses his agitation over not being heard. It takes the place of being able to say, “No, dipstick! Not fruit snacks! Put me to bed!”

Things like food and sleep have become easier to decipher as he’s gotten older. Through his school, therapy, and pure observation, we’ve learned to communicate better and better with each day. However, there are still moments that leave me baffled. By seeing the world through his eyes rather than my own during situations like that, I’ve changed how I handle them.

A perfect example would be when he suddenly bursts into tears during a TV show. Happily watching Sesame Street in the other room, Lucas’s laughter would suddenly morph into agitated cries. Early on, I would run in and immediately make it about me and my lack of understanding.

Lucas! What’s wrong? What’s the matter? That’s Elmo! Why are you crying? You like Elmo. It’s just part of the show. What’s wrong? I don’t understand.

His sobs would grow bigger and then, just as quickly as they started, they would end and he’s be clapping to the show again. I would leave the room in a state of confusion. Despite the fact that he’d be better, I’d let it bring me down and leave me feeling sorry for myself because I couldn’t figure out why it was happening.

Now when it happens, I dart into the room like before. But now, I sit on the floor and hug him. I might try to reinforce “that’s just Elmo”, but I never repeatedly ask him what’s wrong. He’s not going to answer me. Even if he could, he probably wouldn’t be able to put it into words anyway. All that matters is that he’s sad and I’m there for him. He sees that and I know he appreciates it.

That’s what’s most important. As things stand right now, my son lives in a world that many of us can’t even comprehend. To the world as a whole, his inability to communicate with them is the issue. But to him, the whole world’s inability to understand what he’s trying to communicate is the real issue.

As someone who gets insanely crazy when the person I’m talking to doesn’t can’t comprehend the plot of a TV show I’m trying to explain, I can’t imagine what it would be like to see the world through his eyes. When I try to, I’m left in awe of how strong he truly is.

I hope one day he will learn to speak his mind and express himself with ease. But even if that day never comes, I will do whatever I can to let him know that he’s not alone in his world.