When my son was first being seen by specialists who began uttering phrases like “chronic care”, “non-verbal”, and “severe autism”, there was an incredibly long list of concerns that haunted me. I didn’t know what to worry about first.

In hindsight, I can say that even when things turned out the way they predicted, they still ended up being great. My son is perfect for me. Just like his neurotypical sister, Lucas has a place in my life and in my heart that fits in the best possible way. There is no one on Earth like him and most of those worries were needless.

Still, the worries were real and any parent in my position would have felt the same. There was an unknown future looming for one of my favorite people. Concern, as his father, was the natural thing at the time.

Perhaps the strongest fear of all was the dark thought that he would never be present or understand the world around him. I would never fully have my son there with me.

In his youngest years, Lucas just let life happen around him. If his attention was fixed on something, he’d tune us out and go about his business. The room he was in could go up in flames and he would still keep his gaze firmly fixed on whatever he was playing with at the time. Nothing seemed to matter.

Famously, a speech teacher once pointed out how he didn’t even look up when I entered the room. She was the worst in-home therapist we ever had and the fact that she painfully pointed out the obvious serves as a prime example of why.

Sadly, she was right at the time and as he seemingly drifted away, I couldn’t help but worry. I didn’t know if I could ever relate to Lucas or get him to care about things outside his own world.

Entering his world was a big step. I have talked about the day I approached to join in as he played with his toy telephone in a way that would perplex most observers. His face lit up and he hugged me when he saw I could relate to his unique game. It was the first time we truly bonded and I will never forget it. It was, however, still something within his world, not ours.

Sure, he would sit through his sister’s recitals or family parties, but he didn’t really seem to care about any of it. Over time, though, moments started to pop up that showed me how Lucas was paying attention.

I can recall the first time that happened, actually. We were at Disney World, the happiest and most expensive place on Earth.

My ex-wife loves Disney and many of our family vacations ended up there. Lucas was a trooper and went to everything we pulled him to, despite showing little care for it. We did the rides and met the people pretending to be ducks and mice. He just went through the motions…until we met Baymax.

Do you know Baymax? Good, because Lucas and I didn’t. He’s the bulbous Michelin Man-looking thing from a movie called Big Hero 6. My daughter and I were lined up to take a picture with this Stay Puft Marshmallow monstrosity. That’s when I called for Lucas to come over too.

His mom took the iPad from his hands and sent my little guy over to us. I expected more disinterest and apathy from a boy who does these things to appease those around him. That’s when Lucas did something he’s done many times. He surprised me.

Rather than wobbling over with a look of gloom, he came marching up to the three of us with both hands raised in the air. When he was close to this big inflatable monster man, he arched his back, lunged forward, and bounced both his arms off this character’s body to create a resounding “boing!” We all laughed and turned to take the picture. While I’m sure few were aware of the gravity of what just happened, I was. This was a huge moment in my family and my smile in that picture is one of the realest ones I’ve ever had.

In some cases, it takes a few times to realize that Lucas was into the things we were doing. Medieval Times Dinner and Tournament was an old holiday favorite. For years, Lucas would eat his food and ask for his iPad while the rest of us watched the show. He was there for the no-utensil-needed chicken, nothing more.

One day, everything changed. As the horses galloped out, I saw him angling to see. In a first, Lucas then stood up and stretched his body for a better look. I was blown away. This was the first time I had ever seen him take an interest in something that wasn’t Sesame Street, Raffi, or the Wiggles. It’s hard to explain the magnitude to someone who hadn’t spent years worrying that their kid wouldn’t like any family events, but trust me. It’s massive.

Of course, these are all big out-of-the-house anecdotes. The private one-on-one days are the ones that left the most indelible mark and foreshadowed future events just like them,

My favorite moment wasn’t from Disney World or Jousting in Jersey. It was in our breakfast nook at home. As he often does, Lucas was continuously starting and stopping his YouTube video as it played “If You’re Happy and You Know It.” His favorite form of stimming, YouTube pausing is an action that you can’t tear him away from.

So, I playfully tried to prevent him from stopping it in favor of enjoying the music. It was annoying teasing on my part, but no different than I would do to his sister. As he tried to stop the video, I blocked the button with my hand and began singing with the music. I got all the way through the chorus only to have him finally pause it just as we hit the crescendo. I went from loudly singing to dropping my head and sighing with the most defeated delivery I could muster.

If you’re happy and you know it and you really want to show it…if you’re happy and you know it clap your (click)…Ugh.

And he looked up at me with a smirk and let out a “heh”.

Again, it’s difficult to properly frame the importance of that side-mouthed chuckle, but hopefully, you get it. Whether you are someone with a non-verbal person in your life and can feel this story as it relates to you or simply someone who has followed Lucas’s journey here, you can probably get why this was such a huge step in our relationship.

He was there. He was paying attention. He “got” the joke. I couldn’t believe it.

There have been and will be many more moments like these. I know it now and I’m glad I paid attention, played a part, and got to witness them. I never want to miss a moment with this kid and I take solace in knowing he’s not missing them either.

My son is present. He’s not “locked away” or left to float alone. When I didn’t think he cared, I still brought him into our world and showed him that he was welcome. I’m so glad I did. The road may be long with a dark daunting start, but there is plenty of sunshine along the route. There’s no other boy I’d rather have riding by my side.