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How My Daughter and I Are Weathering the Storms of Autism, Together

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Parents of neurodiverse children are probably the only people who will ever really understand this. We have been through more than a week of nightly, major meltdowns that extend the bedtime routine to hours. I am physically and emotionally exhausted and desperate to find that one thing — that one magic thing I haven’t tried yet that is going to make this better when a quick glance into my toolbox tells me I’ve already tried every last one of them and every possible combination of them.

That part of my brain that is still capable of rational thought knows this will get better when it’s time for it to get better, and all I can do is keep doing what I’m doing, keep loving her with every speck of my being and trust that she will find her way through this emotional growth spurt and that we’ll both survive it. But when you’re sleep-deprived and stressed and feeling incredibly alone, it just feels so hard.

Some of the storms brew slowly. I can see them coming, so I reach into the toolbox and pull out “patient but firm” and focus on remembering to give her the reminders that she will have to stop doing what she is doing in x minutes and give the reminders that she needs to be kind and respectful even when she’s feeling Big Feelings.

Other storms come crashing down suddenly, engulfing us both. While the rain is pounding down, and the thunder and lightning are crashing and flashing all around us, I can see the first tsunami coming straight for us. I reach into the toolbox and try to pull out a shelter — one of those things like breathing exercises, going to a quiet place, a firm but gentle hug — before the tsunami smashes into us and drags us under the water. I pull us both out of the water and comfort her as the storm seems to ease just a bit, and then the next tsunami will suddenly be over us, and we’re dragged under again. Again and again. It seems like she simply can’t settle down and sleep until the storm has come and gone, even if her brain has to create the storm.

She’s so over-tired. Everything is overwhelming. This hug isn’t tight enough. That hug is too tight — it hurts, she can’t breathe. The dog got a drop of water on her pajamas. The cat won’t get out of her way. The fleece blanket is bunched up, not flat underneath her. Where is this stuffed animal? I tell her these things feel big because she’s tired and overwhelmed. “It’s just an ant, honey.”

“No, it’s an elephant! It’s huge. It’s crushing me!” Breathe. Look at it. It’s an ant. Over and over and over, but just when I think I know the rhythm — that I know when the waves will tower over us next so I can anticipate and find the right tool to stop the waters from rising, it shifts. The tsunami isn’t forming in front of me, it’s 1000 yards down the beach, and I have to sprint to get there before it takes her under without me. Run, run, get there so when she reaches out for me, I’m there.

One moment I’m the solid thing she holds onto for safety, the next I’m the enemy and must be fought off, then I’m the rescuer she clings to, and that’s in the span of 10 seconds. My head spins. Which role does she want me to play? Which role does she need me to play? If I hug her, will she cling to me, kick me, slump exhausted in my arms, push me away? If I tell her to use her breathing, will she start to do slow breathing with me and begin to calm down or scream that she can’t breathe and amp up the hyperventilating that leads to the coughing and choking and gasping? Please, just try the breathing, just try.

And then, just as suddenly as it all started, the exhaustion wins, and she lies down in bed and snuggles up to me, my sweet, vulnerable child. We talk about the good things that happened today and the good dreams she’s going to have. I sing to her and turn on her ocean sounds, and then she sleeps. She has finally found her peace. I carefully lie her head on her pillow and then find my golden retriever to try to find my own peace.

My heart and mind race. I feel relief that the storm is over, guilt that I wasn’t perfect for every second of it (I shouldn’t have said this, I should have said that differently, I should have tried this, I shouldn’t have tried that, next time…). I feel trepidation for the morning because I’ll have to wake her after too few hours of sleep to have any chance of not replaying this event the next night, but knowing that it probably will happen. I feel love, and determination, and the weight of it all.

Finally, I go back and stand beside the bed and look at the peace on her face and hear her steady, slow, rhythmic breathing. The guilt washes away. I did that. It was hard, but I got her there. We didn’t just survive the storm — we came out of it stronger, together. We’re making progress. Whatever this big, emotional growth spurt is about, we’ll figure it out together. We’ve survived all of the ones that have come before. I remind myself that this happens because I’m her safe space. All of those tiny stressors that happened throughout her day are held tightly until she feels the most safe, the most loved, and then they can be released. She is my everything, and I will be hers as long as she needs me to be. This is parenthood. This is autism. This is big, messy life. This is a neurodiverse kid trying to figure out how to navigate a world that was built by and for neurotypical people.

I don’t want advice, and I don’t want compliments. I’m not an amazing or wonderful parent. I’m a mother who loves her child. Sometimes the words just need to come out, and sometimes someone else who is in a similar situation needs to hear (or read) them. Parents, I see you. I feel you. I’m with you. I am so grateful that so many of you are with me on this journey to celebrate the successes and progress and to hold each other up when the storms roll in. The storm hit us hard tonight, but I’m still standing, and she’s still sleeping. That’s all the success we need for today.

Getty image by Motortion.

Originally published: May 26, 2020
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