• Casey and Caitie

Hanging by a Thread



CAITIE


My six-and-a-half-year-old daughter has had her top front tooth dangling by a thread for two solid weeks. And it. is. gross. I hate it. It is driving me insane.


And let me just tell you that as a rule, I am not a big fan of people who aren’t into kids with wiggly teeth. We actually have a family thing called “The Wiggly Tooth Test” which originated when my 16-year-old sister brought a boy from school by the house and my 6-year-old sister, always eager to meet the cool big kids, ran to meet him and opened with, “Hi! I have a wiggly tooth, do you want to see it?” to which he exclaimed, “Ew! No! I hate wiggly teeth!”


And so naturally, we in turn hated him and never had him around thereafter. Later, when a different boyfriend of my sister’s used his belt to tow my younger sister when they all went on a too-long bike ride, we all gave him a resounding five star mark on “The Wiggly Tooth Test”... You get the idea.


So generally, I am pro-wiggly teeth. It’s part of my child-friendly family culture. But my child has the most intensely challenging time with wiggly teeth. This is her fifth loose tooth, and each time, she has suffered royally. There are various factors at play: losing a tooth is something beyond her control, she is seriously worried that she might swallow her tooth and not receive a gift from the tooth fairy, and while she often has a frighteningly high level of pain tolerance, she expresses great discomfort and tenderness when her teeth are wiggly.


No amount of reassurances, soft, enticing foods, or accommodations we have offered have seemed to ease her loose tooth troubles. Having a loose tooth gives her so much anxiety, that she refuses to eat and drink for long stretches of time. This has happened each time, but for some stupid (delusional) reason, I tell myself it’s gradually improving.


We just had Thanksgiving, and on the day of the holiday all about food preparation and feasting, my daughter hadn’t eaten for 20 hours. She was so overcome by anxiety (and possible dehydration) that when she tried to eat a few grapes, she threw up. The second attempt to eat hours later, also ended in vomit.


Our day was spent like this: Peel potatoes, run upstairs to help her when she weakly called out from her bed. Grab towel. Washcloth. Change/freshen up child. Do load of laundry. Return to kitchen. Make cornbread. Wash and trim green beans. Run back up stairs. More vomit. Coax a few sips of electrolyte drink. Go back to kitchen. Baste turkey. Mash squash. Consult recipe on cranberry sauce. Run back upstairs when you hear a faint “Momma!!!”


The show she was watching had a Halloween scene. There was a shadow. It was scary. Comfort her. Put on a different show. Time passes. She doesn’t even want to watch a show. She won’t respond verbally or otherwise to offers of any kind. She lays there listless, unengaged by anything. Return to kitchen. Cry. Text friends for support. Whip the cream. Quietly check on child, set baby bottle of peppermint tea on night stand. She is asleep. She sleeps for 3 hours. The Thanksgiving feast ensues.


My oldest child is awake but does not want to come to the table. She watches a show in her bed while the rest of us try to enjoy the beautiful meal. And then, suddenly, she’s ready to come down. She says, “Hey! Where’s my plate?!?!” as if she’s been waiting ages for a Thanksgiving meal. Causally, I butter some cornbread for her, put the few things she likes on a plate. She takes a bite. Complains that her mouth hurts. I explain that it’s from the acidic vomit from earlier and that food will actually be the thing that helps. Be patient, give it a little more time. She tries eating another bite, complains again. But then, she starts to reemerge. To rehydrate. The wilted flower once more is radiant and upright. Ready to play Pin-the-Tail on the Turkey and eat lots of pumpkin pie. I feel like doing cartwheels all over the house. The “Hallelujah Chorus” plays loudly in my head.


The next day she feels okay and we make another pan of cornbread because it’s something we’ve discovered she can manage well. But after that, it’s rough again. So, so rough. She won’t eat or pee (a sign of dehydration, but also a way to have some bodily control). Very specific, custom-prepared meals are rudely, loudly rejected as if I was insane for presenting such a thing to her.


She said she wouldn’t take a bath until her tooth fell out, but finally agreed when I offered to duct tape the drain. Her teeth are yellow and her breath stinks from a week of no brushing. She talks funny from the effort of trying to keep the tooth from flying out. Later in the day, she puts on a circus in the basement. Balances on slack lines, puts on ice skates, tumbles, somersaults, does an aerial silk show. Falls many times, but still, the tooth remains. It defies all laws of nature. Until, one morning, about 8,000 mornings later than I expected, she wakes up, and it’s gone.

 

CASEY


I realized Cooper was not going to “grow out of it” when he was four years old.


The day it hit me – viscerally, like a jolt up my spine – was a Saturday in January. I had already asked myself, How can we possibly fill the hours until my child stops moving again and sleeps? That morning, my husband had spent two hours at an indoor public pool, swirling him in circles, as he demanded “again, again” over and over. Since his birth, this drive for passive movement was a constant in our lives, as bodily calm only came through our vigorous spinning, swinging, and bouncing of his body. Yet, to our disbelief, Cooper's need for movement had become even more insatiable following the birth of his baby brother. It suddenly seemed he was hanging by a very thin thread that could snap at any time.


Upon their return from the pool, it was my turn to “play” with Cooper. Deep down, though, I knew that playing was not something my son did. Sure, he would knock over the forts and block towers I built or direct my movements verbally, but he was always one step removed or destructive, putting the onus of action on me.


To begin my bid to play, I grabbed a box of hot wheels and a Paw Patrol Tower. Listlessly and wordlessly, he sent a few cars down the Tower’s slide, until one stuck at the bottom, which caught his attention. He sent a few more down, hoping for another to remain on the slide’s plastic lip. Two cars stayed, but as some fell off the bottom onto the ground, I saw his body tense and brow furrow. He sent another car down, knocking one off its bottom position, and I watched his body jerk, almost as if in pain. He repeated the pattern continually, increasingly agitated, and I realized that he wanted the cars to stack up the slide without falling off the bottom. That he wanted his cars to work in a way that gravity did not.


As another hot wheel knocked off the bottom, I offered gently, "Cars can’t stay there with the weight of the other cars above." “No!”, he screamed, shoving my hand away from the Tower. As each additional hot wheel fell, he began to cry out, as if physically injured by the laws of nature. As I moved towards him, he shouted again and threw a car directly at my face.


Stunned, I searched his eyes, which had avoided mine until that point, and I saw blind fear. I moved back, helpless, watching him slide and knock cars off the bottom edge, plunging deeper into dysregulation. At that moment he seemed trapped by a loop in his mind, one that prevented an understanding of cause and effect or his body from acting on that knowledge. Finally defeated, he fell to the ground, pounded the Tower with his feet, and screamed as tears streamed down his face.


Unfortunately, this pattern of cognitive and bodily entrapment would repeat itself, painfully, hundreds of times before we started to understand PDA. Yet, our lives would increasingly revolve around these “hanging by a thread” moments or what the therapists like to call being in the “yellow zone" of regulation. The moments when time would hang in a tenuous balance, when Cooper's sentences would convert to shouted monosyllables – NO! STOP! – his words to cries. I would watch his body start to succumb to the invisible impulses of his brain.


Before I understood, I interpreted these moments -- when I tip-toed on a razor's edge, trying not to set off his hair-trigger response -- as misbehavior. A categorization that felt comfortable, within my control, until I started to witness him tip off that razor's edge, time after time. That moment when he would leap past the edges of the bell curve, a screaming outlier, trying to burrow his body into the abutting walls of a dark corner, lashing his limbs at whatever was close, in full on fight or flight mode.


And I have come to realize that only the knowledge of PDA and the support of lifelines – other mothers, primarily – can help the PDA parent learn to dance with and around that razor's edge. To feel less alone, when she feels the thread stretching and she drops everything, her heart racing, to keep her child from snapping.


When she is forced to accept that the only solution is to lower the demands, sitting with her child in his and her own pain, until the storm passes. To try her best to stay out of the line of fire when hot wheels catapult across the living room. And to wait with pacifiers, popsicles, weighted blankets, Ipads, or her own body at the ready, to get that precious brain back down to earthly terrain and safe again until the next thread inevitably breaks.

 

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