Inside the Mind of a Mom Raising a Child with Profound Autism

Welcome to the mind of the mother of a child with profound autism

I’m scared I’m not good enough to parent a child with profound autism.

I’m terrified I’m failing. Terrified that the moments I’m too tired, too overwhelmed, or too defeated might have lasting consequences. 

Every meltdown feels like a reminder that I’m not understanding my son the way I should.

I’m scared of being judged for the choices I’ve made—and the ones I haven’t.

I despise the looks of strangers at the playground when Charlie starts squealing and hitting himself. The comments from people who think they understand but don’t. The whispered suggestions from those who believe they’d handle it more calmly, with more patience–better than me. 

I’m scared I won’t be around long enough to figure out what happens when I’m not.

I’m scared no one will understand his world the way I do, that no one will be able to protect him from the dangers he doesn’t even recognize, that no one will love him like I do. 

I’m scared I’m losing my mind, but I’m not afraid of saying it out loud.

I’m going crazy under the constant strain of vigilance. The never-ending battle to keep him safe—from swallowing screws, from darting into the street, from himself. Always alert, always on edge, knowing one moment of inattention could have life-threatening consequences. I’m here, not because it’s easy, but because I can’t walk away.

Sometimes, I want to quit for good, but I have so much to say—so much to share about what this life is really like—because people need to know. I need to know I’m not alone in this, and I know you do, too. So I’m here to stay.

I want people to understand what it’s like to live this reality without filtering it through their own lenses, without the constant “well-meaning” advice. I want to share my truth without judgment from those who’ve never walked in my shoes. Without hearing about how I should be doing this or that, or how someone else’s cousin’s neighbor “cured” their child’s autism with a gluten-free diet. I’m living in a world you probably don’t understand, and it’s okay if you can’t. 

I’m scared of being left alone with my thoughts, yet I can’t stand the noise of others. I’m scared I’ll fail. Scared I’ll succeed. What if I do everything right, and it still isn’t enough? What if I pour my heart and soul into this and still come up short? And what if, somehow, I figure it out? What then? 

I’m full of contradictions, a constant push-and-pull of emotions that never seem to settle. 

I’m scared of what comes next. but here I am, standing in the midst of it all. Still fighting, still loving, still here.

Thanks for being here with me.