Parenting Severe Autism: The Hard Parts Go Without Saying

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My son is 14 years old. He is non-verbal with severe autism.

Getting him up in the morning is a 20-minute job. Many of the things he needs to get done before going to school are things he can’t do on his own. It’s up to me to either assist him or do them myself. It can be a difficult task.

I told you that for a reason. If you go back, you’ll see that I didn’t name a single thing I had to do for him. I simply told you his situation, the time it takes, and left the rest to your imagination. I have no doubt in my mind that you can fill in the blanks yourself.

It’s the same thing when I say we have “challenges”, “struggles”, and “obstacles.” When it comes to the hard parts of autism, it can be left unsaid because people get it without having to be told.

After all, that’s how kids like mine are portrayed in the media and in life. If you’re watching a show about someone with profound autism, you’re conditioned to pity the parents or feel sorry for the person “suffering”. It’s supposed to remind you how lucky you are or something. I don’t know.

You see it in life, too. If you’ve noticed someone with special needs in public, it’s probably during a moment of difficulty for their caregivers. The shrieks and the meltdowns get the most attention. No one stares when Lucas is quietly on his iPad. There’s no reason to. The shriekiest wheel gets the grease.

And all that – everything you just read – is just one reason why I don’t focus on the struggles of raising Lucas. You already know what they are. I know you do.

When I tell you that the positive points of his personality overpower the negative aspects of my task list to get him up and out, I mean it. I’m not trying to give you the impression that difficulties don’t exist. I’m trying to show you that the bad things you imagine have become routine, while the love we share has only grown as we have.

All that being said, it might sound like I take things further than most when I say that I wouldn’t want any other kid besides him. I love my son – autism and all – just as he is. His neurotypical sister and I have a relationship that is just as close as I have with him. The only difference is that he’s never had to say a word.

Maybe it’s me. I didn’t have demands of God before Lucas was born. He’s a blessing – plain and simple. No matter who he was, I would love him. I knew that there was a chance of anything before having children. We all do.

On top of that, Lucas didn’t ask to be born. I decided I wanted a child and, with his mom, made that happen. The challenges in his life are ten times more on my hands than his. I know that. I feel that.

In fact, it was that early guilt that made raising him the most challenging. I’d watch him falter and blame myself. I’d see him struggle to be understood and feel sorry for the role I played. This was one of my favorite people on Earth, and I was responsible for what I felt at the time was a difficult life.

Make no mistake, he does have a difficult life. I know this. We both do. If our lives were a video game, this would be, at the least, hard mode. I get that.

Still, I wouldn’t want him any other way. Do you know why? Because this is him. This is who he’s always been. This is the boy I’ve loved since he was a blip on a black and white printout image.

Lucas feels his emotions more than anyone else and I know that he’s happy in his life. I see it firsthand constantly. When I get him from his room in the morning, he cheers like I’m the friggin’ Beatles. No one makes me feel more loved and accepted than my son.

The things that we, in our neurotypical world, feel he might miss are things he never even thinks about. They’re the things that dampen our spirits and cause heart attacks at 35 years old. Every single item on the “your child will never do this” checklist is something that he doesn’t care about.

Work, career, finances, driving…and all the rest will never be part of Lucas’s life. I don’t cry because of it because he doesn’t. Maybe chalk it up to the low-functioning aspect of his autism, but it brings me solace. My son has the life he wants, and I help make that possible.

What about love, right? You’re thinking that. I know you are. A kid like him, who doesn’t really interact with others in the same way we are used to, might never find or want to find a partner in that sense.

Well, being neurotypical doesn’t guarantee you that. Hell, I’m in my 40s and still swiping left and right, trying to find the magic. Finding love isn’t easy and, at the risk of getting too meta, I sometimes even base these posts on some mind-blowing conversations that come with the search.

Here’s the big kicker to it all – Lucas knows love. He knows the love that matters.

I love both my children more than anything else, including myself. I would do anything for them and they both know it. It’s on a level that I used to think was exaggerated before I was a dad. Much like those who dismiss my message of autism appreciation, I used to write off “I’d jump off a building for my kids”.

Today, I know I would. Life is long, and I have time to search for my true partner. But, even if I never find that person, I have known love from my kids and they know it from me. It is an unbreakable bond that was there from the start and will persist until my final breath. We have that.

And that’s the real story no one tells you. When people imagine life with a child like Lucas, they picture all the things they’d lose. But they never think about what they might gain.

I’ve gained clarity. I’ve gained joy in small victories, gratitude in quiet moments, and a love so deep it rewrote everything I thought I knew about connection.

Yes, it’s hard. But it’s also extraordinary. And if that’s the story that rarely gets told, then let me be the one who tells it – again and again, for as long as I live.


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