Ed note: Quick context - I am on vacation with my two daughters - ten-year-old, Katie, who (while anything but typical) is what we call 'Neurotypical' and her eight-year-old sister Brooke who has autism with an extra shot of pervasive anxiety. Their dad will be joining us later in the week, but for now Mama's flying solo.
The day had gone South just after noon. It would probably be fair to say that it was all my fault as I'd stupidly tempted fate with an overconfident status update to Diary's Facebook page,
"I'd almost forgotten what plain, unqualified HAPPY feels like."
Jackass. I know better than to taunt the autism gods - fickle suckers that they are.
Within five minutes, the wheels had gone flying off the wagon. The rest of the day became a game of Survivor.
We are by the side of the pool. My girl has come undone. She is sobbing. And screaming. There's nowhere to turn, nothing I can do when the demons get too big.
Yesterday, she loved this place. Today it's hell. We are packing up to leave. We'll try a smaller, quieter pool. I have yet to see that setting won't matter today.
She begins to scream. "I'm scared! I'm scared! I'm scared!" again and again and again. I want to scoop her up in my arms, to hold her, to tell her I'm here, that it's OK. I want her to know that she's safe, that nothing can hurt her. But autism doesn't work that way. Not for my girl.
"Mama, I'm scared!" she yells again.
We are moving now. We pass the guard at the gate. It's the one who is always so nice to us. Who never asks to see our pass because he says I have an honest face. I try to contort my honest face into a smile as we walk by him. It doesn't work.
Outside the gates, I crouch down to my girl. "What is it that's making you feel scared, baby?" I ask. "What are you afraid of?"
She sees me. That's big. She processes the question. I wait.
Tears stream down her face. Her limbs are wracked with tension, every muscle flexed and ready for flight or flight. Her fingers are splayed. Her mouth is open.
She yells through the tears.
"There's a fire in Mr. Hooper's store! We can't go back in there."
Elmo Visits the God damned Firehouse. It might be funny if it, well, wasn't.
Katie can't do it anymore. She's been superhuman since the moment we left the house for the airport. But this too much. Everything she's held in comes out. She's angry. She's tired. She's sad. She's done.
The feelings spill over, words tumbling over one another. "I just wish that once in a while SHE knew what this feels like for ME. I just wish that you could leave her be and just worry about ME. I just wish it wasn't like this. I just feel like I want to cry but I know it's not OK."
As Brooke paces nearby, I hold Katie tight to my side. I tap her on the shoulder. She looks up and I point to my eyes, full with tears. "It's OK, baby. I understand. Let it go." She nods silently, buries her head and lets the tears flow.
A family passes by. I wonder briefly what this scene looks like from the outside. I can only imagine. I wonder what they would do if I turned around and, in my best game show host voice said, "Hey, have you heard? April is Autism Awareness Month. Congratulations, folks! You've just been made aware!"
Today we start again. A new day. A fresh slate. A chance to try again. Wish us luck. And if you happen to have a line to the autism gods, please tell them I'm sorry and I promise not to mess with them again. If we can manage happy today, I'm gonna keep it to myself.
Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - ten- year-old Katie*, an utterly fabulous typically a-typical fourth grader, and eight- year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.