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.
Jess, I am so, so sorry, completely know where you are coming from. I had a day kinda like that myself yesterday and in the post I started about it last night, I wrote " It was all running so smoothly, a little too smoothly, and so the gods of autism had to reach down and screw it all up for us again." Sigh.ReplyDelete
I am so sorry they are messing with your family, too. I hope that someone gave them a big box of chocolates today and put them in a better mood. Wishing you a happy, peaceful vacation, with minimal interference from... those guys.
Thanks, lady. So sorry they were messing with you too. I would have sworn we were keeping them entertained. Here's to a better day for all of our babies.ReplyDelete
If only they took a vacation. Hope the rest of the week goes more smoothly.ReplyDelete
I thought we were the only ones who had vacations like this, I can so relate to your experience! Thank you for sharing this beautifully written post. I am putting in a word to those tempermental powers that be.....hoping your family can find some rest, some peace and lots of enjoyment!ReplyDelete
I'm so sorry, Sweetheart! I wish I could do something for all of my girls!ReplyDelete
Thanks for your post. You put into words what my own life is often like. The one time I tried a vacation with my son, we literaly got kicked off our plane after a blow up on the flight home. We also had to call security at Sea World as he blew up when it was time to leave and kept running away from me. Luckily he likes men in uniform and was very happy for the security guy to push him in a wheel chair to our car. In Disney Land I felt like part of a secret club. On our shuttle bus from the parking lot to the park another parent approached me and asked if my son had autism. There child did also. We gave each other the secret hand shake and wished each other luck. I met more members of the "club" in line to get our disability fast pass. Through out the day as we wound our way around Disney Land we would encounter these other parents and give knowing smiles. While the rest of the world often does not "get it". We parents of the child with autism or other disabilities that affect behavior, belong to a special club that we never chose to join, but whose members embrace each other and understand that we will only get through this with support from each other.ReplyDelete
Sending a hug along with the secret handshake.
Hoping for better days ahead for you and the girls today. xoxoxoReplyDelete
Oh, Jess. hugsReplyDelete
Ah, the fire at Mr. Hooper's store - we know all about that one too.ReplyDelete
What your typical daughter had to say reminds me so much of Alison MacNeil's daughter, Neely, in her father's special airing this week (see video clip). The siblings are wise beyond their years and we must never under estimate what they go through day in and day out. It is heartbreaking. I wish the pain and frustration could be taken away.
Oh, Jess, my heart. I'm so sorry yesterday was so hard. It sucks so much that things can go from happy and relaxed to complete disaster so fast. Katie always blows me away with the way she can articulate her feelings. You two are a good unit, and the way you help her be okay with her feelings is phenomenal. Hope it goes uphill from here.ReplyDelete