When you have a special needs child, people tend to focus on the work it causes the parent. The first thought is about how hard it must be for me, as a father, to raise and understand my boy.

Lucas is non-verbal and, with that comes a need for understanding, patience, and observation. Learning who my son is, as a person, took a real effort at first. It takes effort even now that he’s 13 if I’m being honest. That’s not a secret.

Recognizing that his autism brings beautiful aspects to his personality doesn’t mean there are no challenges. Knowing what he wants can take time to figure out. Showing him that I’m someone he can trust to understand him took even more time. Getting to where we are has been the most important thing I’ve ever done in my life.

Reading all that makes me sound selfless, right? Look at me. Superhero Dad.

Yet, I don’t feel selfless when it comes to Lucas. Especially in his younger years, I felt scared, guilty, and incredibly selfish. The image some assume of me from across the supermarket was the exact opposite I had.

How could I not feel selfish? The first few years of this kid’s life were spent with me doing nothing more than hoping and praying for all the things that I wanted him to do.

I wanted him to roll over, crawl, and walk. I prayed he’d get dressed on his own, brush his own teeth, comb his own hair, tie his own shoes, and wear a hat for more than a minute at time. Oh…and talk!

Talk. That was the big one. I wanted words so much that it hurt. I can’t even begin to explain that feeling. Even now, it kills me to remember it.

Why does it hurt to remember it? I’m sure it seems like the pain stems from the fact that even now, he’s never said a word. But that’s not it.

The pain that comes with remembering that feeling is the fact that I ever felt that way at all. It’s the memory of longing for my son to be a kid other than who he turned out to be. Knowing who he is and how grateful I am for him in our lives is what kills me. It makes me feel like I was the worst parent on the planet, even if that wasn’t true.

No one saw that part of our “autism journey”. This was from a time when special needs were still our family’s open secret. I didn’t talk about it. I didn’t share it. Although, I was engulfed by it.

Early on, I was very much on my own. I hadn’t said “autism” out loud yet. In my brain, it was a magical bad word that, once it slipped from my lips, it would come true. Everything would fall apart and it would be my fault. I thought that. Seriously.

Nobody knew that I was making deals with God privately every year. We had annual talks around his birthday, where I’d give the universe another year to get him “on track”. At two, I’d make a deal with the universe that if he wasn’t speaking by three, then I’d have a reason to worry.

Then he’d hit three and I’d do it again for four. Then five. Five was the big one in my mind. That was the birthday I dreaded.

Before I knew it, he was five. I could no longer convince myself that it was OK because I had been telling myself for years that this would be the age when it wasn’t. The world was imploding. The worst-case scenario was here.

Five, though, is a unique time. While there were definitely things that Lucas wasn’t doing, he was also emerging with his own personality. Growing out of the baby phase, my toddler was now a kid. Honestly, even without bells, words, and whistles..this kid was great.

He didn’t understand every single thing and, before we got into gestures and devices, it made things hard sometimes. Challenges are challenging. There was, however, so much more about him to take in.

Lucas demonstrated such a love of life that it was hard to not find yourself smiling when he was around. I have never shown as much joy for anything in the world as he showed for the same Sesame Street videos he had seen a million times. That still hasn’t changed.

My son loves life and always has. His smile rips me from the worst of moods and the things he needs from me, while sometimes a bit much, remind me that I’m important to him. He reminds me to be happy and gives me a purpose every single day.

I wish I had known back then that, even in the “worst-case scenario,” I would end up with my perfect life and my perfect family. “Perfect” wasn’t what I imagined it would be, but it turned out so much better.

I wish I could tell that old version of myself that everything happens for a reason and that this journey is a chance to build the most unique relationship with the most unique person I’ve ever known. I wish I could tell myself that love and redemption are waiting at the end of this path – a path I once tried so desperately to avoid.

I’d also want to tell myself that all that worry is forgiven. There was no way of knowing any of what was ahead. It’s why doctors and professionals couldn’t tell me any of this. No one can tell you how the autism journey with your child will go. You have to live it to find out.

Looking back, I’ve learned to forgive myself for all the worry and doubt. It was part of the path that led me to appreciate Lucas exactly as he is. If I had the chance to go back and do it all over, I wouldn’t change a thing. Lucas is exactly who he’s meant to be, and because of him, so am I.