Autism. You’ve probably heard that word many times before, maybe in passing, maybe in conversation. For many people, it doesn’t stop them in their tracks. It doesn’t make their heart sink or their chest feel heavy. It may not connect to their lives at all.
But for me, autism is a weighty word. It’s one I carry on my shoulders every single day, and one I will carry for the rest of my life.
I have two little boys with autism.
But please don’t think for even a moment that autism is the only word that defines them. They are so much more than a diagnosis.
They are loving.
They are sweet.
They are intelligent.
They are incredible.
They are the absolute best thing that has ever happened to me.
And yet, they are also the hardest part of my life. Until you live with autism day in and day out, I don’t expect you to fully understand—but I want to try to explain it anyway.
Parents of typically developing children often take so many things for granted, and I don’t blame them. They simply don’t know any different. They don’t face the same struggles that parents like me navigate every single day.
Unlike most parents, I may never get to watch my children play sports, graduate high school or college, or land their first job. I may never sit in the front row of a wedding, sobbing as I watch them marry the love of their life. I may never spoil grandchildren. There are countless milestones that most parents look forward to that I may never experience.
And to say I’m jealous would be an understatement. I’m not ashamed to admit it. I am deeply, painfully jealous. I scroll through Facebook and see friends posting about what their kids learned in school, sharing photos from sports games, award ceremonies, and school plays—and it hurts.
It doesn’t feel fair.
Trick-or-treating, visits with Santa, birthday parties, family vacations—it all stings. Watching other children light up over Halloween costumes or Christmas morning, hearing them excitedly talk about their wish lists and favorite holidays. My children have never cared about any of that, and sometimes that realization breaks my heart.
So many of my days are filled with screaming, meltdowns, throwing things, and self-injury. I am overwhelmed. They are overwhelmed. I hate that my children have to struggle so much just to get through each day. I wish, more than anything, that they could tell me what they need or what hurts. I am exhausted from guessing. I am worn down from not knowing what is wrong or whether they’re in pain.
I’m just tired.
But the hardest part of all is knowing that I will probably never hear my boys say the words, “I love you.”
I know they love me—I see it in the way their eyes light up when I walk into the room, or how they suddenly stop what they’re doing just to smile at me. Still, knowing I may never actually hear those words spoken out loud completely shatters my heart.
I didn’t share all of this to make you feel sorry for me. That was never my intention. I’m sharing it to bring awareness to the realities parents like me face every day, and will face for the rest of our lives.
Autism awareness isn’t just colorful puzzle pieces. It’s truth—even when that truth is hard to accept.
Autism is forever. There is no cure and no quick fix.
It’s endless doctor appointments, therapy sessions, and medications.
It’s flapping, stimming, rocking, and rolling.
It’s meltdowns and self-injury.
It’s hard. I won’t lie.
But it is also the most rewarding job I will ever have.
My boys will always be innocent. They will always love me. I will never have to worry about them breaking my heart.
They will never move halfway across the country—or even across the street.
They are mine forever.
And that is my favorite part.
