When people learn I have a special needs child, they seem to focus on how hard it all must be. The general idea is that having a non-verbal son with “severe autism” includes a lot of work.

Sure, I tell them about all the positives that come with raising a boy like Lucas. I can explain autism appreciation and how there are aspects of his personality that are wonderful because of his “disability”. Whether it’s his sweet demeanor, lack of ego, or purity of emotions, my son has some great characteristics that come from autism.

That’s not what they focus on, though. For many outside our home, they see the challenges and troubles that come with autism first. It’s my son’s challenges that seem to be on display first for so many.

They watch as he spills his food, loses his shoes in the backseat when we’re in a hurry, or simply lays down when he’s tired…while crossing the street. The challenging moments are the ones that are usually on display the brightest.

Is it hard? Sometimes, yes. I don’t pretend that special needs parents have an easy road just because there are more positives than negatives. I don’t deny that hard times don’t exist. They do. They’re just not what I focus on.

Make no mistake, though, they exist. Lucas has done all three of those things and more. Whether I’m peeling pizza off my couch, searching for a sneaker wedged under the passenger seat, or applying a double-arm underhook to bring a boy who weighs more than me to his feet, I have some rough times to deal with.

So where is the disconnect? If people notice how hard things can be, what is the issue? They see it’s hard, so they point it out. That makes sense, right?

The problem is that the reason they think it’s so hard for me is all physical work. While people see me wrestling with pizza on the couch or lifting Lucas up from the street, what they don’t see is the real struggle – the one that happens in my mind. It’s the narratives that swirl around my brain during Lucas’s most trying moments that are the hardest to handle.

I think about what will happen when I’m not here to clean his messes up. Who will take care of him? Will they do it willingly, with love and respect? What will his adult life look like when I’m no longer here? Who will be the people by his side, and will they truly care?

As I run the dustbuster over a floor covered in Cheerios, my mind is focused on the Cheerios he will spill five, ten, or twenty years from now. I wonder if I’ll be there to clean them and it scares me to ponder possible scenarios.

Not only that, I also feel bad for Lucas in these moment. In many cases, I know he doesn’t understand what he’s done wrong. Even when I try to show him, I know that there are times that he doesn’t know what I’m saying. There’s nothing like cleaning up a huge mess that someone else made…and they’re trying to reach over the vacuum to get their iPad.

It’s infuriating and heartbreaking at the same time. I’m angry at what just happened, but I also feel terrible for my son. In that moment of misunderstanding, I take a mental inventory of all he might still struggle to comprehend. I worry about the things he still doesn’t know.

Does he know what’s happening to him when he feels sick? As I’m struggling to get a kid who doesn’t know how to blow his nose to not glaze his entire bedroom, it creates so many head games. I’m disgusted with cleaning up the mess, but I feel far worse that my little guy might possibly not even understand what is happening to him. I can’t imagine feeling sick and not knowing why. It makes me sad just thinking about it.

I’m not just Lucas’s caretaker. I’m his dad. The work that needs to be done to keep him going may be physically demanding, but it’s the love I have for him that makes me think about him first. Anyone who has ever been tasked with caring for a loved one knows what I’m saying.

If you don’t have a special needs child, think about a relative or friend you’ve had to care for during their time of need. Is it hard for you to take care of them? Of course. But your main focus is on making them comfortable, happy, and healthy. It’s the same thing here.

These worries have been here since my son was a baby and will almost definitely be there until I draw my final breath. That’s the biggest struggle I have as a special needs parent. My boy is a huge part of my world. I just want what’s best for him. That concern is what keeps me up at night.

Anyone can vacuum up cereal. But only a parent knows the heartbreak of wondering who will care enough to do it in the years to come—and the fierce love that makes you hope for the very best, even when you can’t always be there.