The Rumble + The Storm.
On Autistic Meltdown + Its Reverberations.
Putting off my planned essay for a late Wednesday night dispatch. (Again!). Probably should just write this in my journal. But I’m fond of you all. I’ve come to love writing to you.
Maybe it helps me. Or you. Or someone you know?
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Our 10-year old, Desi, has autism (with a PDA profile). Many of you know that. But knowing that little thing is not knowing much. Because autism means different things for different folks. For us it means that the onset of puberty, we were told, has brought back the epic meltdowns of toddlerhood. Only now the stakes are much higher.
Books pulled off of shelves - our home is filled with books and book shelves, a blessing and a curse, turns out - tables cleared, chairs thrown, cupboards opened and emptied, every piece of her clothing pulled out and thrown on the floor. She hits, kicks, spits, bites. Sheets off the bed, pillows on the floor. Daily now. Ear splitting rage. Adrenaline spikes. Cortisol spikes. Loss of her words. Animal sounds. Angry kitten. Raging bear. Pissed off cougar. She has what she calls her autism sweatshirt with words like yes and no on the sleeves and little kittens on the chest, to point to, to communicate. But in the storm, it is too late to access logic.
She is in some place that even she cannot tell me about.
And I’ve asked. After. Under her favorite blanket. Scratching her head, I ask her. What does it feel like? She is blank, it’s all blank. Just anger, she says and then meows like a kitty. With Raffi, who also came to us from foster care too, he had so much rage and anger, trauma from all that time in different homes and institutions, poverty and hunger. But he wanted to talk through it. He wanted to know about himself. He is an excavator. He has to know why he was triggered, how he could do things differently. He employs his own coping strategies now as a 14-year-old. He gets angry - who doesn’t? - mostly about food. Someone ate my teriyaki noodles, he shouts. They are mine! You bought them for me! He stomps around, pissed for a bit. Raises his voice. Obsesses about teriyaki and why these noodles are so good as a snack. Why they are his. Why this sucks. But he settles himself. Allows us to help settle him. He knows the source, can work through it mostly for himself. His prefrontal cortex developed more last year, I suspect, and he is settling into a new kind of growth and maturity. It’s beautiful to watch him.
As I wrote in the The Meth Lunches, hunger lasts a lifetime. It will always stay with him. Whoever loves him will have to leave extra food in the bottom of the pot - just in case - so he knows he is loved and safe, that there is abundance.
He will be okay. He will be okay.
Tonight, I noticed the rumble.
I didn’t make up the term. Rumble stage is a thing in meltdown. It’s the rumble before the storm. It was over Desi’s need for candy. Dopamine. Novelty. Sugar. She demanded we take her to get a treat when she had already had a chocolate chip cookie with M&Ms, from Panera, an hour before.
I thought we might get through the day without a meltdown. Gentle parenting all day. Meeting all her needs. Quiet at home. No loud noises. No school that day. No arguing with her brother. The neighbor boys, a pack of five, didn’t get her to come out scootering with them, and overwwhelm her. No stress I could see. Still, the rumble.
Sometimes David can break the storm by taking her out of the house on a side quest. To the gas station for a treat. Boba from the Hawaiian shop. Not this time, we told her. It was late. We had settled in. 9pm. Couch, laptops, and Alone streaming.
Her prefrontal cortex powers down. No reasoning. No emotional regulation. Just the blaze of her amygdala. Fear. Rage. Overwhelm. The storms are coming everyday now, even the calm days. I have bruises. David reminds me this is a panic attack. A reminder to both of us, really. To stay calm. To check ourselves. We have to maintain, even as she rages, or everything just gets worse. This is hard, believe me. David is better at it. He has a way with her. Firm, but loving. She hucks a glass of sharpies at my head. All of my work is strewn across the floor of the bedroom. It takes everything I have not to say something that will rip through her and break her.
If I did, would she remember? Is she hearing us? Taking us in? What the hell is this like for her?
The storm, the worst of it, lasts about 30 minutes. Manageable. Clean up the house. David in the bedroom. Me, the living room. She folds herself into her giant hoodie at the end of the couch. She screeches like an alley cat. But softer now. Then, whimpers.
I am, I admit, afraid for her future. For who will care for her in adulthood when we arent here, and who will judge her? Abandon her? I worry about how diminished her life might be. I see so much of her sweet mother in her. A mother who couldn’t control her emotions either - Autism/PDA has a 90% rate of inheritability - self-medicated with heroin, and OD’d at 27. How many undiagnosed autistic people are self-medicating? On the street? Would diagnosis and treatment have saved her? Allowed her to parent her babies, who she loved more than anything?
What will become of my sweet, howling, angry kitten?
It’s over now. She is sniffling, wiping tears. David brings her a boba he made for her. A peace offering. She is making animal sounds inside her hoodie. Still a ball on the end of the couch. She pops her feet onto David’s lap, even though she won’t look at him. End-stage storm. He takes her feet and rubs them.
The artist, Yangdzom Lama wrote about her meltdowns:
After every meltdown, that energy—uncomfortably coursing through my veins—would die down eventually. Then exhaustion and shame would creep in. Following that particular meltdown in university, I hid myself away and cried, wondering what was wrong with me. It was scary to experience, and it must have been scary for others to witness. -
There is shame in being out of control. Shame in not being able to tamp down the darkest side of ourselves? Don’t we hate a lack of control more than almost anything? Does Desi feel the shame, too? I don’t know how to ask her without making her feel that way. Lodging it in her brain. Making it real. I let her be.
David and I are still thrumming though. A hot wire runs through us, top to bottom. The rumble is ours now. We settle the house for the night in silence. Later, she will finish the Panera mac and cheese in the fridge. With a fork that she has to choose herself, because all forks are not the same. Panera mac is of the few foods she will eat - but only from the restaurant, not the retail Panera mac in the supermarket - besides salmon sushi. This week, that is. Her ability to tolerate foods, textures, tastes and smells shifts weekly, monthly. She will hand the empty carton to David. She will snuggle up in between us in bed. She will ask me to scratch her head.
I will. For as long as she needs.
It’s like the meltdown cleanses her. She’s chattering now, even as David and I are slipping towards sleep. She talks from subject to subject. Excited, happy. Talking about her special needs gymnastics class. She didn’t like the regular class. They made her go upside down too much. They made her do cartwheels over and over. She hated it. She left early. The special needs class was just right, she said. She loves her teacher, Jill. She lets her wear pajamas in class. She cannot wait to go this week.
I love you, she says. We say it back. We mean it in ways we never could’ve imagined.
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Thank you, as always, for reading. xo Kim
While my parenting situation is completely different, this really resonated for me: " A reminder to both of us, really. To stay calm. To check ourselves...". Sometimes parents have to be superhuman, and it's hard. We want to do right by our kids, but our own stuff can get in the way. Keep sharing!
Relate to so much in this. Thank you.