I am standing in the shower, trying to concentrate on the sensation of water on my skin. I am trying to settle my mind for just a moment. And to breathe.
It is an exercise in futility, because the screaming from my bedroom is impossible to ignore. It is a biological imperative—screams of anguish should be hard to ignore. But it has been over an hour and I have expended every reserve of patience I have. I am out of tools. I am also sweaty. So I am in the shower.
I step out of the shower and get dressed as the screaming continues. When she screams at me to hold her, I say I would be glad to once my clothes are on. When I reach down she scoots away like a wounded animal. Just as she has for the last hour every time I approach. Except for the times she punched me first.
I tell her I am going downstairs and ask if she would like to join me. I am testing the waters to see where we are in the tantrum. Can she hear me and respond out of her logic centers or are we still too far gone? Will she let me touch her yet?
This rage started because we tried to get dressed for the morning. I carefully chose a shirt and skirt that I thought were sufficiently soft and easy to put on, but when her sensory issues collided with her need to be independent and she ran into trouble pulling the shirt over her head, the screaming started. And then the swearing.
She learned the word sometime back before Christmas, and six months later, we still cannot get her to stop. We have tried positive reinforcement, we have tried negative reinforcement, we have tried bribery, but absolutely nothing has worked. The only mercy is that she hasn’t said it at preschool yet. I am counting the days until the school year is over and praying that we can get it under control before the fall. But she has yelled it loud enough for the neighbors to hear and said it at church. It is embarrassing and depressing and triggers all my anxieties about being a failure as a parent.
When she goes into these spirals, she throws punches when I come near, all the while begging for help and for a hug. On every approach, she punches again and runs away, then wails “Why won’t anybody hug me?” and screams for a hug again. When I speak at all, she screams to shut up.
So there is nothing I can do or say to end it. When it abates, 20, 30, 80 minutes later, we are both raw and exhausted. Sometimes a new round of hysteria begins when she discovers that her nose is stuffy or her head hurts from an hour of crying so hard that she gags.
I have never felt so helpless in all my life.
Because my daughter looks perfectly normal, because she is adorable and charming and rascally when she is not having a sensory meltdown, you would never know that she is not neurotypical. Until recently, even I didn’t really grasp that this very likely not something she will grow out of, but an actual brain function that she will be learning to work around for all of her life. We are still trying to figure out what this is—this thing that makes her so tightly wound and sensitive. Short of a brain scan, we might never have a definitive name for it.
We don’t know for certain, but in all likelihood, much of this is probably a result of her prenatal exposures. The stimulants coursing through the bloodstream my daughter shared with her birth mother shaped the way her neurons and brain developed. Not that any of this matters because what’s done is done, but it helps us to understand that she cannot help it. She is, in many ways, like a raw nerve, unable to regulate her responses to stimulus. Every tiny irritant registers as pain. Everything registers as a 10.
I trust that it won’t always be this way. She will not always be lost for an hour in her own vortex. We will learn tricks to teach her how to self-regulate better. But on days like today—a sunny Saturday where I just want to get outside with my children before it is too hot—it is not even 11 am, and I feel like I need a drink and a nap and a vacation. And she is still half dressed and in despair.
The effort of maintaining equanimity while your child is punching you and swearing at you and refusing touch, while writhing on the floor in emotional anguish, the victim of her own overloaded sensory system, leaves me feeling wrung out. Today I cried too. Because I felt helpless. Because it hurts to see her so helpless and frightened by her own emotions. Because I know we will probably do all this again tomorrow, or maybe in an hour.
For now, these meltdowns usually only happen at home. We had our first one in public this week, beginning in the waiting room of a psychology practice, then taking the show on the road to the parking lot, the car, and home. The only mercy is that the parents in the waiting room could at least hypothesize that I was there because I am trying to do something about it. In a few weeks, we start a parent training program where we will be interacting with our child behind a two-way mirror for an hour each week while a child psychologist watches and gives us feedback in real time. This feels about as naked as you can be without actually removing your clothes. To be honest, I’d rather be physically naked, which is saying something considering how I feel about swimwear. But we have reached the absolute limit of our skill set as parents and we need help to navigate this new territory. So psychological streaking it is.
After I am done crying, I do the only thing I haven’t tried yet. I pick her up and take her outside. It isn’t a calculated move. It is a desperate one. But the change of venue is a little bit of a jolt. She sits down on the driveway, still screaming, but quieter. She finds a rusty nail on the ground and asks what it is. I tell her to give it to her dad, and for the first time in over an hour, she doesn’t respond by telling me to shut up. She says she’s going to step on it. I tell her why that is not a good idea. She is still whimpering and not fully rational yet, but we are getting there. She takes it to her dad and listens as he explains what kind of a nail it is.
Soon she tells me she is hungry. I offer her a snack that she likes and will quickly stoke her blood sugar, which by now is also probably part of the problem since breakfast was hours ago.
She still is only wearing a skirt and a pair of underpants. She is calm now, but I am wary of what other minefields lay ahead. We still need to put on a shirt. And shoes. And God forbid if we need to get into a car seat. Any of these things could undo the peace I have been fighting to find over the last 90 minutes—the peace of her now contentedly humming and eating a granola bar, topless.
Her voice is happy again. “Mama, I love you!” she calls out from the dining room. When she is done eating, I ask her if she is ready to try for a shirt again. She takes my hand and says she is. As we walk up the stairs, we rehearse: “and if it feels bad, what can we say?” She runs through an array of cheerful, even-tempered responses “Not this one, Mom. Or this is uncomfortable. Or I don’t like this.” She runs to pick up a shirt that she had hurled on the floor half an hour earlier, “I know a good one!” She asks “Can you help me please?” and stands in front of me. We pull on the shirt and I check in, “It feels ok? This is a good one?” It is. She smiles, throws her arms around me, and curls up in my lap. I say “Now you’re ready for that hug?” She nestles in and squeezes me tightly.
We walk back downstairs, slip on some shoes, and she takes my hand as we walk outside.