Cassandra Lybrink: When all is said and done, autism isn't a bad word
It's a sunny Saturday in Michigan. I'm wearing an enormous white tulle skirt, a jean jacket, pins in my hair — giving me a headache. My sister is getting married. I'm the maid of honor.
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I'm standing at the bottom of a hill. Stairs lead to a bridge over a creek, then up the hill to an old barn. We're taking pictures. But I can't focus — because my son is screaming. I hear him, up those stairs. And I know he's not going to stop until I come.
The wedding was a fear of mine for months. My sister wanted my 2-year-old toddler to be her ring bearer. It was the night before the wedding, during the rehearsal, when I called it off. It was too much for him, and I knew it.
And so, he and my husband danced to "Baby Shark" in the barn while I watched my sister get married. We thought we'd dodged a bullet. And then my son saw me taking photos — and it was all over.
My husband yelled down the hill for help. I knew it must be bad. I apologized to my sister and ran up the stairs, tripping over my skirt. When I reached the top, I collapsed in the grass and held my sobbing child. There was vomit on him, on my husband. My son had gotten so upset he'd thrown up.
"This is ridiculous," I told my husband. "This is absolutely ridiculous." Bugs crawled into the folds of my skirt. People were staring. I didn't care. This was my job. For weeks, I'd been prepared for this fight — the fight about the two of them leaving early. And now that it was here, I saw it was futile. Forcing my son to stay wouldn't help him, and it wouldn't help me.
I changed my son into a pair of clean clothes, apologized profusely to my family, and sent my boys on their way before cocktail hour was over — my husband visibly relieved. I sobbed into my father's arms as I watched them drive away, wondering if this was what the rest of my life was going to look like.
My son — as I told at least 30 people that day — is in the process of being diagnosed with autism. It's not altogether a surprise. My husband is autistic, though nobody knew until last year. We spotted the signs early with my son — a significant speech delay, sensory processing problems, an inability to sit still for circle time, uncontrollable anger when we play a song or read a book he doesn't want to hear.
But it's still hard. It's hard to say out loud. My son isn't what you'd picture when you say the word "autism." Neither is my husband. We don't know how similar they'll be. My husband struggled his way through public school without a diagnosis, got married, got a job, had a kid. No one knew. We live in a different world today. I hope my son will have more resources available to him than my husband did.
But, at the same time, my greatest hope for my child is that he'll be like my husband. My greatest fear is that he won't be. My greatest fear is that he'll never talk (though he signs and says a select few words, in addition to babbling). My greatest fear is that development stops here. That the rest of our lives will be like this.
I worry I'll never be able to take my son to a restaurant without him screaming at the waitstaff for taking our order, or that I'll never be able to stay in a hotel again, because he won't sleep in the same room unless he's in bed with us. I worry he won't be able to go to public school, thrive in the classroom, read a chapter book, get a job he loves in a field he's passionate about. I couldn't care less about college. But will my son live a full, happy life, without the need for me to be right next to him?
This morning, reading a story in the Free Press, I have a new fear: seclusion and restraint. If my son misbehaves in school, will he taken to a padded room somewhere? Will he face physical barriers in addition to intellectual ones? Surely this can't be humane treatment. Surely this can't be legal.
And yet it all stems from a misunderstanding of what autism is, and what it means. I'm afraid for my son and his future, and mine. But some of the most wonderful things about my son likely come from his autism.
He collects sticks and rocks with fervor. He'll dance in the middle of a crowded street, no holds barred, to a song he loves. He's a visual learner — show him his favorite Disney movie, and he'll act the whole thing out. He watches and learns and reenacts. We're constantly amazed by how quickly he'll pick up a new skill, a new sign, a new puzzle.
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My son isn't stupid — and he isn't antisocial. He'll run into a stranger's arms without hesitation. He gives kisses. He gives hugs. He isn't dangerous when he has a meltdown. He just doesn't understand. He's uncomfortable. And the best thing I can do, the best thing any of us can do, is meet him where he's at, and arm him with the tools to succeed without suppressing who he is — all the wonderful pieces of it.
I often tell my husband I fell in love with him for his quirks. For his passion, his dedication, his intellect. In so many ways, he's smarter than me. Someday, I hope people will see my son that way. Someday, I hope autism isn't seen as a bad word, as something to be afraid of. Someday, I hope I'm not afraid.
But for now, we press on, and we look to tomorrow. It's all we can do.
— Cassandra Lybrink is a reporter for The Holland Sentinel. Contact her at clybrink@hollandsentinel.com.
This article originally appeared on The Holland Sentinel: Cassandra Lybrink: When all is said and done, autism isn't a bad word
