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Lost and Found: The First Week After An Autism Diagnosis

Lost and Found: The First Week After An Autism Diagnosis

I am picking up Mikey at his preschool.

As always, it’s chaotic: the crunch of parents, the long sign-out line, backpacks and cubbies and standing-room only in the small office.

Today, though, is harder than usual. Drop off and pick all week have been harder than usual, because I am barely hanging on.

As Sam, my one-year-old, kicks and struggles in my arms to get down, I half-realize that the preschool director is looking at me. She is regal in a way that’s unusual for this bland suburb: South African accent, tweed jacket and brooch—sharp contrast to my cheap T-shirt and jeans.

I flash her the quick half-smile you give people you don’t know that well. Normally she would just nod politely back. Today, though, she keeps looking for a long moment over her bifocals. I rack my brain to remember if we’d paid tuition last week.

“We’re thinking about you,” she says, approaching. “That’s hard. That’s tough stuff.”

I blink hard and look away. I wasn’t expecting this. Her words pierce right through me, the way unexpected kindness always slices the onion when you’re trying not to cry.

And dammit, here are the tears. Hiding my feelings has never been a feature on my resume.

“Thank you,” I say, faking a little I’m fine shrug as I try to force them back down.

I had failed miserably in the doctor’s office a week ago, when the doctor with so many letters behind her name said the words I knew were coming: moderate autism. The office had jostled and spun for a moment, like the whole world tripped and fell to the left but I was the only one who noticed.

And I had cried.

I cried the forty minutes home from the doctor.

I cried the rest of that day, and into the night. And then the next. The crying came and went in waves I had no control over. I cried eating cereal. I cried drinking water. I woke, crying, from sleep.

I began filling out paperwork on Sam, just twelve months old, and cried, knowing deep down that he, too, would be diagnosed.

For four days straight, fear and grief throttled me me. Clamped down and would not let up.

You have no idea what you’re doing! the fear screamed. All your instincts are useless here. This is a new ballgame and you have no training. You can’t mother these children! You’re too weak for this!

And all the work of getting services came down like an avalanche. I had three emails from the insurance company the first day. Countless more that week. Calls to state services. Calls to the school district. Fresh reams of paperwork. And as we told friends and family, the articles, the endless advice people sent and tagged us in and asked if we had read.

And through all of it, there was little Mikey, needing comfort and play and nonstop attention, and Sam still up five times each night.

So here I was at preschool pickup, but barely.

And the preschool director, as I fought my tears, started talking. Temple Grandin…research with nutrition…ABA…breakthroughs all the time...

And her words started blurring together and all at once the too-muchness of the week was on top of me.

Someone else could mother these boys better.

Someone unselfish.

Someone who had her own life figured out.

Someone more grounded, less emotional.

Someone really good at being a grown up, who didn’t want to blot out the world with cookies and wine and Real Housewives.

And as she was talking—the first in-person kindness all week that wasn’t a call or a text but a real live human being—I suddenly wanted the world to stop, to tip sideways again so I could crawl into her lap, this older woman, and cry there, let her stroke my head and mother me instead of me trying to mother these two boys. I wanted someone else to take the reigns, to be stronger and know more and have perfect intuition to guide us through this alien landscape.

I wanted what I’ve never wanted—to be told, moment by moment, what to do next. I wanted the pressure of knowing what’s best to be anyone’s pressure but mine.

As she spoke, Mikey relentlessly tugged my arm: Mommy, Mommy, Mommy, Mommy…

I managed to thank her and leave before I became a gaping, sobbing wound in the sea of happy parents.

I looked down at Mike.

“Do you like it?” he asked, holding up a little triangle lightly traced in pencil. With his motor delays, he still used an upside-down baby grasp at four.

This triangle was a hard-won victory.

“I love it so much, baby,” I said.

His life might be a study in hard-won victories.

His life might not be any of the things I dreamed for him when he was in the womb. Or it might be the best life anyone has ever lived. Right now, everything is a tall, daunting question mark.

But we are walking to the car. We will go home. He will crawl into my lap and need me to mother him. He will need me to take the reigns. To be stronger and know more and have the intuition to guide him through this alien landscape.

And if I can get quieter, much quieter than the tall, daunting question marks, he will tell me, moment by moment, what to do next.

***


November 2016's theme BOYS is brought to you by MOVEMBER
Categories: Special Needs

Katie Read

Katie Read blogs about autism parenting and motherhood at Childshould. She is also the Executive Editor of Psyched Magazine, and a Marriage and Family Therapist. Her work has been featured at Psyched Magazine, Motherwell Magazine, Autism Speaks, The Mighty, Autism Awareness.com, and others.
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