The reason writing about the positive aspects of raising a nonverbal child with severe autism can feel complicated is because there are very real challenges that live underneath every beautiful moment.
There are days that feel like years. Mornings that break you. All of the good intentions, silver linings, and hope for the future can fade in an instant. I know that because I live it too.
I had one of those days last week.
Without getting into specifics, my son’s profound autism touches nearly every part of his life. Missing skills. Gaps in understanding. Things most people never have to think about. Usually, the love he brings into my life makes those obstacles feel manageable. But sometimes they stack up so high that the weight becomes impossible to ignore.
And then you’re forced to face the question every parent dreads.
What happens if I can’t help?
What happens if teaching him understanding for certain things is not just far away, but unreachable?
It’s been almost a decade of writing this blog, and for one of the first times, I have to admit something.
It broke me.
Getting him ready for school that morning felt like a losing battle. I was overwhelmed, alone, and unraveling. And the one person in the room who should have been able to understand how hard this was, my son Lucas, was completely unfazed.
While I was on the edge of oblivion, he was tapping me, laughing, and trying to kiss my head.
It was love in its purest form.
And somehow, that made it hurt more.
Because in that moment it became painfully clear that he did not “get it.” He couldn’t see the fear or the spiral inside me. His sweetness framed the distance between us in a way I had never fully felt before. The love I have for him almost felt weaponized by the situation. If I didn’t care so deeply, days like this wouldn’t cut so hard.
With my mind racing and grief creeping in, a terrifying reality surfaced.
There are things he may never understand.
There are skills he may never gain.
And as he grows bigger and I grow older, there may come a day when I simply cannot do this anymore. Not the mornings. Not the physical work. Not the emotional weight.
Love might not be enough to give him the life I want for him.
Sitting in the car with snow falling on the windshield and Lucas happily screeching in the backseat, I realized something that shook me to my core. Loving him does not necessarily mean preparing him for the world.
It may mean preparing the world for him.
I stopped picturing some far-off miracle future and started imagining a different one. One filled with decisions I don’t want to make. Choices that will tear me apart. And through all of those imagined moments, I see him still smiling, still hugging, still content.
And I feel alone.
Yes, there is comfort in knowing he won’t feel the fear I do. But I will.
That is the weight I now understand I have to carry.
There is no neat ending here. No lesson wrapped in a bow. Just the truth that love doesn’t build every bridge. Sometimes it only gives you the strength to stand in the fire and choose anyway.
That is the hardest part of autism acceptance for me.
But Lucas is worth it.
Carrying this weight, making the choices that protect him even when it breaks me, is the greatest act of love I will ever know.
If this story resonated with you, I talk more about what changed after my son realized I was really listening on this week’s episode of
Hi Pod! I’m Dad.
READ NEXT: I Can’t Fail Him, But I Worry I Might (2019)
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