Accepting the possibility that your child could be non-verbal starts fairly early. As a new parent, you eagerly await that first “da-da”, but the waiting presses on. Soon, other children are delivering little monologues about their favorite TV shows and your child still sits silently.
You welcome professionals into your home and into your life, but none can give you a definitive answer. In fact, most default to the worst-case scenario in order to minimize your expectations. It sounds awful, but the ones who don’t do that are the ones that end up messing with your head the most.
I still think about that one neurologist who told us that Lucas was a “Johnny Come Lately” and would eventually just catch up. Not only was he wrong about that, he was wrong about how to use the term “Johnny Come Lately”. Looking back, I can’t believe we paid him.
The thought that my child wouldn’t speak didn’t seem to be one that I could properly wrap my head around. His teachers would educate me on the differences between “verbal language” and “receptive language”, but still it made no sense. He can understand things and even communicate with me, yet not use his voice? How? Why?
For a parent, it’s hard to ask “why” about anything your child does. We’re supposed to know everything about them. Other people are supposed to ask us “why”, not the other way around. Making matters more difficult, others still do ask you why. The only answer I could give at the time was a frustrated, “I don’t know.”
These professionals always touted the use of communication devices for my son. They’d speak about all the doors it could open and the success stories that they had with other families in our position. One day, hopefully, my boy could use an iPad to speak with me. We could rip down the barriers of communication and push forward. I was promised a lot of rose gardens.
Do you know what I figured out when they first told me that? When they said he might communicate with a device one day, this was the very first thing that popped in my head:
I’m going to use it to ask him why he doesn’t speak.
A sly smile formed in my mind. The experts would drone on with their speeches, unaware that I was mentally plotting my genius approach. I had found the loophole to raising a child with Autism. How smart is that? Why hasn’t anyone else thought of it? If your non-verbal child uses a communication device to interact, use it to ask him why he doesn’t speak! Genius! People are going to be impressed.
I was like a little kid who figured out that, when offered three wishes by a Genie, they can just ask for more wishes. I had outsmarted all the efforts and beaten the system. Now, all that I had to do was wait for him to use that device or, in the very least, understand what I’m saying. Then we can find out.
I don’t know what I expected, but I pictured all kinds of scenes. The overall gist was that I imagined asking him why he was silent, and he would press buttons that correspond to, “I’m not really sure. I guess I haven’t thought about it before. Let me try.”
Hello, father. Four score and twenty years ago…
I would cheer and then we’d have a party.
That’s how my imagination presented it. My rational mind knew that was a long shot, but a small part of my brain said it was a sure-thing. To be fair, I had been put through the wringer with worry. So I might not have been thinking completely straight about it all.
Today, Lucas uses a communication device and various hand signals to converse with me. Sure, it’s still somewhat superficial and limited to requests at the moment, but our deeper discussions are done through looks and unspoken understanding. And, yes, I have asked him why he doesn’t speak and have tried to get him to copy my own spoken words.
It has happened on a few occasions, but I can remember getting him ready for bed one day and doing my usual babble routine. My voice fills the room with songs and lectures. The hope is that he hears me and can pick up words along the way. It’s also for my own sanity. He’s my captive audience and can’t beg me to stop like his sister does. From there, I would then say something and ask him to repeat.
Let’s get into bed. Lucas. You say. With your mouth. Bed. Can you say bed?
I point to my mouth and then point to his. Sometimes I’ll take my hand and lightly squeeze his lips.
You say it. Can you? Bed. Or just “buh”. Buh-ed. Bed. You do.
His reaction is the same that he has had anytime I have ever asked him to do this.
Lucas begins pointing to his mouth and tapping his lips. He doesn’t repeat or try to make sounds. It’s quick, hurried, and frustrated. It’s almost as if he’s saying, “Yo. I get it. Mouth. This is my mouth. I can’t speak. I’m not speaking. Let’s move this bed process along.”
I inevitably feel bad for asking and tuck him in with a kiss on the head.
I know that this next story is barely even comparable, but it makes me think of when I was around five and attended a gymnastics class. For the life of me, I couldn’t figure out a somersault. Much like the world views his speaking, the skill seems straight forward and, today, I can do one. Sure, I’m not Sonic the Hedgehog, but I can tumble if asked. At five, though, it was like asking me to do trigonometry.
That day, everyone asked me what the issue was. The teacher was frustrated. The grown ups were angry. No one could fathom why I “wasn’t trying”. After all, this stuff is easy. Just roll, right? Wrong. I couldn’t. It was impossible.
Even worse, I couldn’t explain why. People kept pestering me about it and I had nothing to tell them. I just couldn’t do it. I was working on it and, hopefully, one day I’d get it. That was it. Leave me alone.
And that’s where Lucas is. And that’s something we all need to respect. The frustration in his face when he’s pointing to his lips pulls me back to that gym coach rolling all around me and claiming that I could do it too if I “really wanted to”.
The funny part is that this is supposed to be the sad part of the story. This is where I say that I ignore this burning need to know because I love my son and want him to be happy. However, while that is somewhat true, it’s not completely true.
The truth is that that I ignore this need to know because, well, I don’t really need to know. I have watched Lucas grow, learn, try, and evolve through the years into a boy far more independent than I ever dreamed possible. I have seen children, with words, who don’t accomplish half the goals that my son has in his little life. Language, while an important thing, isn’t the most important thing. I wish I realized that then. Then again, if you told me this at the time, I never would have believed you.
This thing that I assumed would be such a giant missing piece of his life back when we were planning strategies has become just a small part of his whole picture. He’s so much more than a voice or a vocabulary. He’s a person and one of the best I’ve ever known.
Maybe one day, he’ll tell us what is holding him back from using his voice. Maybe he won’t. The point of all this communication effort is to help him one day function in a world where he might not be able to use words. That’s why we teach him to use his device, not so he can explain himself.
He doesn’t owe me or anyone else an explanation anyway. He just needs to be the best he can be. I’m proud to say, he’s accomplishing that goal more every day.