No One Needs To Speak For My Non-Verbal Child

People like to make other people feel better when they think something is wrong. While we might all bemoan the downfall of civility and how rude some can be to others, the fact of the matter is that the Internet is full of sentiments designed to make you pick yourself up, dust yourself off, and start all over again.

It’s not just specific to the online world either. People, in general, will try to lift your spirits when things are down. Sure, it might be a social pleasantry more than anything else, but an attempt is an attempt. Any issue that people might perceive as dragging you down is counteracted by their positive words and thoughts. Kumbaya.

Unfortunately, this whole good-vibes game can go too far at times and you wind up staring at a meme like the one I nearly scrolled past on Facebook during the opening days of Autism Awareness Month. It was your classic words on an image and it stated simply:

Non-Verbal People Understand Every Word You Say. EVERY WORD.

dontspeakAs the parent of a non-verbal son, I guess this post was supposed to bring some relief to my seemingly painful life.  These assurances graphically designed by a complete stranger who has never met my child instantly sums up such a massive question in such a simple, childish, and dismissive way. It was almost like a slap in the face wrapped in a makeshift Hallmark moment.

And it really made me angry.

Let’s just start with the obvious. My parenthood is neither painful nor does it require relief. When I say that I accept my son as he is, I’m not trying to fool myself and others. I mean it. That’s not to say that there wasn’t a time early on when I struggled to deal with our new journey.  There was. That said, a disingenuous quote like this would have done nothing to make me feel better. In fact, it would have made me worse – especially in the long run.

Why? Well, there’s the fact that it’s not true at all. Non-Verbal people don’t understand every word you say. I know that sounds pretty shocking. But it’s not. It’s actually the most logical thing to say because…

Verbal People don’t understand EVERY WORD you say.

If this happy quote was true for my son, then Lucas would be the first seven year old in history to understand every word that adults say to him. It’s nonsense. Of course, you can always revert back to the mindset that the words aren’t meant to be taken literally. They’re just exaggerated for the sake of “feels”. Sadly I would agree. That’s a big part of the problem.

It’s the attempt to narrate the “true” thoughts of my child that crawls under my skin the deepest, though. My boy has a ton of ways to communicate with me and he uses them all. He uses the Proloquo speech app on his school iPad, PECs, hand gestures, and more to tell me what he needs. They all get the job done and we tend to be on the same page more often than not. On the rare occasion that I don’t know what he wants, we work together to figure out an alternative that he’s happy with. It works for all of us.

One day, I hope that he has the ability to share deeper thoughts with me and communicate on a more advanced level. I want to know his hopes, dreams, and the things he thinks about.  But when that day comes, I want him to be the one who tells me. I don’t want someone else to pretend to know what’s in his mind and tell it to me now. That’s not helpful to anyone, no matter how warm and fuzzy they think it might make me feel.

dabI hate how a feel-good statement like that treats non-verbal people like you would treat someone who passed away. People tell you that Uncle Jeb is drinking a beer in Heaven for you and everyone smiles. It’s a comforting idea and a safe enough guess because, well, Uncle Jeb is gone. My son, though, isn’t gone. He’s sitting next to me. I talk to him every day and, in doing so, I can see what he understands and what he doesn’t. That doesn’t always require words to express and, as someone who is around him a great deal, I take pride in being able to understand a lot of his unspoken language. It’s actually part of what makes me feel so important in his life. No one needs to make up a narrative to help me through something they might think needs fixing…especially, when it doesn’t.

This is all tied up in the big picture issue I have with this whole “EVERY WORD” statement.  It’s one that many people without children on the Autism spectrum might not understand. It’s something that I never understood until I had Lucas.

So what if he doesn’t understand everything?

Sure, I could easily embrace the idea that every non-verbal person understands everything. It sounds nice. But to accept these words as my morning cup of positivity would be to accept the flawed premise behind it. I would have to concede that if he doesn’t really understand EVERY WORD, then that would be a terrible thing. It says that everything is only OK if the person I believe my son to be isn’t true deep down inside. If he doesn’t secretly understand everything around him, then he would be less of a person.

Not only is that not true, but my boy is more of a real person than most verbal people I’ve conversed with in life. His love is real and not part of a complex social game to get what he wants. His happiness is real and not a tool to make others feel comfortable.  The words he does or doesn’t speak aren’t what make him real. The person he is.

Maybe one day he’ll be able to tell me what he truly understood back when he was seven years old. If so, it will be his story to tell and no one else’s. If that day doesn’t come, then so be it. I’ll always love him just the same. I love being a Dad and nothing ever needs to help me feel better about that.