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I focus a great deal of my writing on autism positivity. Keeping an eye on the good points, especially when it comes to my non-verbal son, is something I hold in high regard. He’s a wonderful boy, and his perceived shortcomings don’t define him at all.

Today’s post is a little more raw about what that positivity really means in practice, because positivity shouldn’t be confused with “easy.”

Raising my son isn’t easy. Raising his neurotypical sister isn’t easy either. In Lucas’s case, the difficulty is just more unique. Some challenges have persisted long past the age when many boys figure them out.

He’ll need assistance for the rest of his life. That’s not positive or negative. It’s just a fact. Acknowledging this is part of truly accepting who my son is. Everything about him, from the highs to the lows, makes up the person he is. To me, they make him a vulnerable and pure soul. It’s my job to protect him and care for him.

That might sound positive…and it is. But it lives right alongside the hard parts.

I’ve written about my commitment to my son and the worries that have, and continue to, keep me up some nights. I worry about him. I worry that even in eternal rest, I’ll be tossing and turning over him.

This is real. The road ahead isn’t always easy. But having his hand in mine makes it manageable. He’s all the inspiration I need to do my part. I’m all he needs to feel safe and secure. There’s nothing we can’t topple.

People outside our home can see the positives in Lucas. They hear my stories and watch him jump with excitement. It’s easy to see that “autism appreciation” isn’t just a catchphrase. It’s real. You can’t help but feel his joy in your bones. Watching my son, in all his emotional glory, reminds you to take in life with every ounce of energy you have.

While the sight might be positive, interacting with it isn’t always easy. For people who don’t know Lucas every single day, it can be hard to find an opening to bond with him.

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Lucas has no verbal words. He uses a device and gestures, but nothing spoken. When I encourage him to try, he often can’t muster the sound. His mouth hangs open, and I see the frustration on his face.

Words are an easy opening for people. If my son said “hi” or “cookie” or something like that, someone could jump in with a cheerful, “Hi! I like cookies too.” That’d be an easy way to connect.

No. No cookies.

Maybe if he liked fidget spinners or something more interactive. People could come over and ask to try them. They’d spin some fidgets. He’d fidget some spinners. Everyone would get along great.

But my son doesn’t like things like that. Most of his toys aren’t user-friendly. He has an infatuation with glares and sounds. Many of his toys play music, and he holds them up to his ear. He might stare intensely at them to see where the sound is coming from. It can be a pretty intense gaze.

I know what this is. Most people don’t. I get that.

Getting to know Lucas is the greatest thing there is. I’m so glad he’s my boy, and I’m proud of the connection we’ve built. But make no mistake—it wasn’t easy.

And it’s not easy for those who don’t know him.

I’ve watched as people come over and try to comment on the Sesame Street video he’s been rewinding and playing repeatedly. They try to make conversation from it.

“Hey. Is that Cookie Monster? You like Cookie Monster?”

It might earn a glance or a smile. Sometimes, he doesn’t even acknowledge they’re there.

That’s why it’s important for me to acknowledge the people who try. It’s why I write this blog and share Lucas’s stories. I know there are people who want to know him but aren’t sure how.

It’s why I appreciate his autism the way I do. I know his world because he lets me be part of it. When he’s at his most overjoyed, he jumps in my face with a giant laugh because he knows I’ll return one of my own. When he’s overwhelmed or exhausted, he collapses into my arms because he knows I’ll hold him back up. That’s the bond we’ve built.

Sometimes, as a parent of a boy like him, I can fall into that “us vs. the world” mindset. No one gets it. No one understands.

But many do…and many others want to.

As his parent, I need to see that. I need to appreciate that. I need to hold the door open for those who want to know this wonderful boy in my life. Getting to know him isn’t easy, but once you do, appreciating him is.