When people learn my son is non-verbal with autism, they immediately think of how hard it must be for me. I am met by sympathetic looks and sad sighs. Poor Dad. His son can’t understand everything he says.
Truth be told, I felt that way in the early days. I mostly worried about how I could make sure Lucas understood all that I was trying to say. It’s a daunting task for a parent, still uneasy about having a kid at all, to learn that his child might struggle to communicate his whole life.
So, yeah. Poor me, right? I have a very important person in my life and, in many cases, he probably won’t fully grasp what I’m trying to tell him. That sounds difficult. How hard it must be for me.
Yeah, but what about him?
That’s right. What about my son? Unlike me, he isn’t just limited in his interactions with one person. He is limited in his interactions with everyone. One small communication challenge in my life is the prevailing challenge of his entire life.
Let that sink in for a second because many people never think about it that way. They see a child like Lucas as a difficult task to manage. He’s a cautionary tale to those who ask me conspiracy theory questions. He’s a checklist to administrators who never met him. He’s a puzzle piece to those who are so desperate to attribute his personality to an easy-to-understand symbol.
He’s none of those things. He’s a person. He’s my person. The struggles he faces are ten times harder than any I will ever be able to claim. I struggle with teaching him things, he struggles with learning them. It’s not even the same ballpark. He works harder than anyone I’ve ever known.
As the years have gone by, Lucas and I have developed our own language. We communicate through words, mannerisms, pictures, and devices. It’s a relationship unlike one I have ever had with another person. It’s unique and beautiful and completely ours.
I learned the importance of these non-verbal conversational skills long ago. It plays out every single day in ways that most parents, whether they have a child on the spectrum or off, can relate to.
My son is often eager to have his playtime iPad during dinner. In my house, though, it’s a rule that we don’t use devices at the table when eating together. He knows to step away and put it down if there’s food being served.
Of course, he hates that rule. What kid wouldn’t? To be honest, I hate that rule and I’m the one who made it up. So when the time comes to put his device down, my son doesn’t go quiet into that last goodnight. He rages against the dying of the backlight.
Now, early on, ripping away the device would earn a massive backlash. He would scream and yell, desperately trying to get it back. As his father, though, I would stand firm. Rules are rules. They need to be followed.
I’d watch him flail around in frustration and it would seem that he was just being spoiled. Compared to other children, that’s what it looked like. He wants his iPad. He can’t have it. He goes buck.
That was then. Today, I know better. Today, I go out of my way to let him understand what is happening.
No more iPad, Lucas. Ready? 5, 4, 3, 2, 1.
I countdown with my fingers as I do this and he stares at me. Sometimes he lets me count all the way down, defiantly keeping his eyes fixed on me. Most times, he hands me his device before we reach three.
Now we eat. After, we get iPad. Eat and then iPad. First, eat. Then iPad.
When I say eat, I touch my mouth. When I say iPad, I swipe my thumb across my hand. When I say after or then, I move my hand in an arc like a rainbow. Not sure why I do that one. It just feels right for the flow.
You’re probably thinking that solves it. After all, this blog is about understanding my son. By showing him I understand, he must angelically sit at the table and follow orders, right?
Nah. He’s a little wiener. He’ll let out an annoyed whine and begrudgingly take his seat. Then, he’ll try to shove as much dinner into his mouth so as to minimize dining time. All he wants is to get back to his device.
Know why? Because above being a non-verbal child with autism, he’s a child. Children want what children want.
The difference, though, is that he doesn’t melt down. He doesn’t think his iPad is gone forever or that his father has no idea what he wants. I’m not leading him to the table in silent anger or ignoring his pleas. I’m making sure he understands what is happening.
When put like that, it’s easy to see the importance. Who wants to go through life feeling like those around them don’t understand their wants and needs? Imagine being in a place where no one speaks your language. Imagine that place being your own home. Imagine losing your favorite toys or being pushed into a car with no knowledge of what is happening to you. It’s like a Twilight Zone episode.
I love my son and I would never let him live like that. Does it mean he “gets” everything I try to tell him? No. There are plenty of attempts on my part that are met with confused looks. However, he knows that I’m trying and he knows to trust me. Dad wouldn’t take away his device to be mean. There’s a reason and he’s trying to explain. Whether understood or not, he sees that I’m making the attempt.
No matter how little a child seems to comprehend, it’s important to let them know that you’re on their side. They might know more than you realize. But even if they don’t, that doesn’t matter. It’s my duty to make him feel heard, even if he never says a single word.