My son is 13 years old and, as of today, he still hasn’t spoken his first word. No da-da. No ba-ba. Nothing like that, at least not on purpose.

I add that last part because, technically, he has said “da-da,” but never deliberately. Lucas makes many sounds throughout the day. Grunts, hums, and babbles that express happiness, agitation, or simply his mood. Occasionally, these sounds mimic words, though they aren’t intentional.

One of my favorite memories from that was witnessed by my daughter too. We were in the room with Lucas, as he was playing with his Scout talking-dog toy. Scout let out his familiar bark and asked a question we had heard many times before.

Arf. Arf. Lucas…will you give me a hug?

To this, my son replied, “Nooooooooooo!”

We laughed out loud. The placement of this noise was perfect, but it wasn’t said as an answer. It wasn’t deliberate, but it was perfect. Olivia and I still joke about it to this day.

scout

All of this can be confusing to explain to people and, truth be told, it’s confusing for me too sometimes. Lucas can make the actual sounds that create words. He can’t, however, do it on purpose…I think.

Confused? I know. Let me give you an example. We can be in the car and he’ll be bopping and babbling in the back seat. A stream of grunts, sighs, and moans will come from his smiling mouth and it becomes the soundtrack for the drive.

Then, out of nowhere, I will hear him say, “Da-da. Da-da.”

Every time, I call out, “Lucas! There you go. You did it. Da-da! That’s me. You say…da-da. Go. You can do it.”

That’s when the sounds stop short. He looks at me and touches his mouth. To this, I eagerly push him to do it again.

Yes! You say. Da-da! You just did it! Do it again. Da-da! You can do it!

His gaze stays fixed on me. His fingers pluck his lips and nothing comes from his mouth. Not one noise. The boy who had been making sounds the whole drive is suddenly quiet as a churchmouse.

OK, bud. Never mind. Go back to your iPad.

With that, he continues swiping and babbling.

“Da-da-da-da…”

Autism, Appetite, and Learning To Adapt

Lucas doesn’t communicate verbally. He never has and, I’ve come to accept that my non-verbal son might never speak. Amazingly, I’m fine with it. Had you told me that when he was one, I would never have believed you.

Full transparency, I’d rather Lucas be completely non-verbal and have receptive language than repeat a few words and not know what they mean. That’s the most important part. He never has to say anything out loud, but if he knows “watch your step” or “don’t touch the hot plate,” it means more than being able to say “hi” with his mouth.

Still, it would be nice to get that “hi,” simply to know he can do it.

So, we work on it. Even now, as a teenager, I still try for that first word. Our goal is, and always has been, “hi.”

I’m lucky in that Lucas will listen to me and allow me to show him things. In fact, he seems intrigued during our moments of learning. I’ll take his iPad, place it face down, and we get to work. He’s always into it, even if he’s rushing to get back to the tablet time.

We’ve worked on physical concepts like raising one finger—a motion he struggles with. Teaching Lucas to wag a finger to say ‘no’ was a lesson in patience. Unable to lift just one finger, he holds all of five together. So his “no” is more of a hand shake like an animated Italian boy saying ‘capisce.’

So we work on that. I teach him to make his fist tight or rotate his neck. There are many physical things that I help him with. It’s how he learned to fist-bump, which I love seeing him do.

It’s the verbalization of “hi,” which I work on the most though. Since he was tiny, we’ve gone about it the same way. It’s the only method that has seen slight success through the years.

word board

Lucas does the hard-H sound. It’s like someone breathing hot air. He opens his mouth and, with his breath, says “hhhhaaaa….”

My hope is to get him to bring it up at the very end with an “ai” in order to complete the “hi.” So I do it for him to see.

Lucas, look. Hhhhhhhhh-ai! You say. “Hi!”

He watches my mouth and then goes into a motion that always brings a smile to my face. He leans his head back and grabs his collar like the Stella scene from A Streetcar Named Desire. With a firm grip on his shirt and his neck craned back, he opens his mouth and gives a long, “Hhhhhhhhhhhha.” It’s the final “ai” sound that doesn’t come out.

Still, I cheer for him. There’s a barrage of immediate clapping and calls of “good job!” There’s positive reinforcement for the attempt every single time.

And that’s where we are at with that. It’s a lesson we work on and one that we probably always will.

When I told them about this at school, I remember the reaction they gave was surprising. They mentioned his device and receptive language. They told me that those would likely be his main forms of communication in life.

I told them I know.

The mood swung back and they all seemed relieved. That’s when I realized that there is a difference between trying to get Lucas to say one word and the mistaken idea that I, as his father, think he will suddenly become a master orator. It’s a concern that I’m sure, as special educators, they’ve dealt with before. That’s not me.

I know that Lucas’s main form of communication will always be through gestures and his device, even if he learns how to use his voice. That’s perfectly fine with me, as long as he understands what’s happening around him.

I no longer bargain with the universe or set deadlines in my mind for him to speak. My son is wonderful and there are no changes that need to be made to make him any better. Our journey isn’t about timelines. It’s about showing Lucas every possibility and celebrating the person he is today.