STORMBORN

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21 October 2024

 

 

Death hung around her like a brewing storm. At twelve weeks’ gestation, they asked me if she should live. The numbers didn’t look promising. Perhaps some sort of genetic abnormality. Too small to register on the growth charts. 

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At twenty weeks, they said her tiny heart appeared deformed. It was the morning after my sister took her last breath, and the storm had descended. My father drove my husband and me to the clinic; the three of us suffocating under the weight of death and the baffling need to continue living. 

 

At the clinic, my husband sat in the corner, head back against the bare white wall. My father sat beside me and held my hand while the sonographer applied warm blue gel to my swollen abdomen. I lay on the bed wondering what the sonographer made of all of this; a young-looking couple, a father in-between, my eyes red-rimmed and hands shaky, the atmosphere charged with despair. 

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They called me that afternoon to say baby’s heart didn’t look right, and maternal foetal medicine would need to intervene.  

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‘She’s healthy,’ my father commanded, his voice like a sturdy plank to hold as the storm raged on. 

 

Before I was pregnant, my husband had a dream. We were sleeping in a loft in Phnom Penh, living off the hospitality of an American couple and learning about cross-cultural community development. In the dream, he saw a wild storm sweeping our family out to sea. 

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One month later, my sister called us at the airport on our way from the Philippines to Indonesia. A freak diagnosis, an outlier for someone so young. The GP spent months treating her symptoms without considering cancer as the cause and the diagnosis came too late. 

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‘You have to keep travelling,’ she said. ‘I’m going to be healed and I don’t want you to come home straight away.’ 

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We kept travelling and Skyping with my sister to check in. We fell pregnant in the south of France and made our way home.  

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My daughter began to kick at eighteen weeks’ gestation, strong for her size, early for a first pregnancy, but not strong enough for my sister’s frail fingers to feel. By then, the cancer and the medication were affecting her brain. She was in and out of consciousness, so when I pressed her hand to my moving belly, she smiled weakly, shook her head, and slipped into sleep. 

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‘I didn’t quite get to meet her,’ my daughter would say four and a half years later. A miniature person with adult-like speech. Fascinated by the world. High-strung and fiery. 

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‘Intense,’ the child psychologist said. ‘An outlier. Extremely intense and maybe gifted. You’ll need to parent her creatively.’ 

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I’ve often wondered if that strength and intensity helped my daughter survive the womb. She was induced at thirty-seven weeks, and when she arrived, the umbilical cord was failing. It wasn’t a chunky, rubbery rope pulsing with life, but a thin, yellow thing no bigger than a chopstick that disintegrated when my husband cut it. She weighed only two kilograms, eyes big and black and alert from the moment her head popped out of my body. 

 

‘The baby is looking right at me,’ my husband said as I hung exhausted over the bedhead and thanked God labour was almost over. 

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It was a smooth birth. A week in the NICU. No dramas. The storm had calmed, and the cycle of life had picked our family up and moved us forward like the incoming tide moves shells up the shore. This sweet new person was a reason to hope. We simply existed together, on the couch, baby on someone’s chest, slow walks on the beach, hearts full of grief and joy. 

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My daughter began to refuse all milk at three months old. No breast. No bottle. No formula. Just a screaming, thrashing, red-faced baby in pain. The maternal child health nurse sent us to the ER, where the doctor medicated her for acid reflux. 

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Still, she would not feed. 

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She maintained a piercing wail that went on and on, dismantling linear reality, grasping the head and tail of time, and joining them together like the slippery ouroboros whose questions have no answers and no end. She would scream in the car, wail in my arms, thrash on my chest, bellow in the shower, holler in her bed. 

I would never shake her, but the vibrations in my arms and hands would escalate, matching her ascending cries until I was sure they would detach themselves from my body, claw their way to her crib, and shake her into silence. 

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This is when I would place her on my bed, lie down beside her flapping body, and cry. Silently, mouth open and straining, things unspoken flowing out and filling the room like storm clouds, ready to pummel down. It would make no difference, though, because we were already drenched and floating. We kept her alive with ‘dream feeds,’ a bottle offered in the light stages of sleep when her suck reflex was still strong. If she woke with the teat in her mouth, the screaming resumed, and she’d look at me like I’d betrayed her. 

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For almost three months we lived like this, on the edge of panic, endlessly walking hallways, bouncing, rocking, and shushing for hours, trying to get a starving baby to sleep.  

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‘Unsustainable,’ the maternal child health nurse said, but the local medical community had no answers. They sent us to a feeding clinic in the city, a couple of hours from home. The staff in the clinic cajoled, sang, bounced, bound her arms, and forced the bottle between her lips to no effect. She would not take it.

 

Bedraggled and sleep deprived, I sat beside her in the clinic playroom where she was doing tummy time in front of a mirror, smiling at her reflection. ​A young nurse walked in and found me with my head in my hands. ‘Just try to enjoy her,’ she said. 

 

When I told an older nurse on night shift about losing my sister, she nodded knowingly and looked at my daughter. ‘I’m surprised she even touched your breasts to begin with.’ 

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It seemed my grief was the problem. 

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I accepted the blame readily, remembering the months before birth when I’d sit in a shallow bath at midnight, baby squirming inside, running elbows and knees into me, across my bladder, pushing up against my lungs. Sheltered and exposed; tucked inside her warm cocoon with no escape from the grief pumping through my veins and into hers.

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‘We’re going to have to give her a nasogastric tube if things don’t get better in a day or so,’ the paediatric registrar warned. 

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I had read the research which said children who’ve been tube fed for long periods find it very difficult or even impossible to re-establish oral feeding. Desperate for a different solution, I stayed awake half the night reading a book on feeding aversions.

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Pressure, it said. Though the pain of acid reflux had gone, the trauma of being forced to drink remained, and my daughter was terrified of the pressure. The next morning, I went into battle. ‘This is the answer. We need to stop dream feeding her during the day, offer the bottle, and let her refuse. Let her be hungry until she chooses to feed.’ 

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The nurse shook her head. The paediatric registrar said it was too dangerous. The clinic supervisor said it wasn’t protocol. They’d have to get permission from upper management at the public health service. 

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‘So, get permission,’ I said. ‘I’m starting today.’ 

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Under paediatric supervision, monitoring her hydration, we gave my daughter back control, and days of self-induced starvation followed. My husband, mother, and father held me throughout, until finally we saw her take the bottle awake. Just a sip to begin with, then a little more each day, until she eventually recovered a healthy relationship with feeding, and we were released from clinic supervision. 

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‘How does a soul get to heaven?’ my daughter would ask at four years old.

 

Her little brother didn’t make it past the womb, but she calls him by name. ‘What will Ace be like in heaven? Will he still be a baby?’ 

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We planted a tree for him in our backyard, beside the vines we had planted for my sister. Two months later, I was pregnant with a little sister whose birth altered my daughter’s world and sent her into a spiral of anxiety we couldn’t unravel.

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‘She’s just trying to regain control.’ 

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‘You’ve parented her too gently.’ 

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‘She needs to know you’re the boss.’   

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‘This is first-child syndrome. It happens to everyone.’ 

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She was three years old at the time. 

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We tried stronger boundaries; consistent, firm, and kind. Imagined ourselves as the ‘strong hands’ of the circle of security, as oak trees planted for her protection, but most of the time our boundaries would escalate her into a full-blown panic attack. She once vomited in the hallway from the force of her screaming. We tried emotion coaching. We read the recommended books, explained it to her, and she caught on quickly. With a conceptual capacity beyond her years, it appeared to make sense straight away. She could echo our words with ease: Frustrated. Sad. Happy. Excited. Scared. 

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‘Okay,’ she said one night before bed. ‘It’s your job to work out what I’m feeling, Mum, and to help me calm down.’ 

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Despite our best efforts, her big feelings continued to bleed through our house, her yelling carrying over to the neighbours until they felt the need pop over and check if things were okay. 

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‘Oh, you know. She’s just strong-willed,’ I’d tell them, but underneath something felt wrong. Other mothers assured me this was just toddler tantrums, but it felt bigger and wilder and more thoroughly debilitating. She had stomach-aches every day. Trouble sleeping and staying asleep. Headaches and eventually migraines. Extreme teeth grinding. At four, she still couldn’t tell the difference between the feeling of being hungry, full, and needing the toilet. She’d take two hours to eat every meal and, despite my husband and I never pressuring her, she was rigidly perfectionistic. 

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That year, she started at the local kindergarten, and if I’m completely honest, I was not one of the mother’s needing tissues at the door. Hours without her at home felt like a relief. 

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In my darkest moments, I felt I’d ruined her. That my anxiety and grief had infected her irreparably, and our approach to parenting was fundamentally flawed, though we had tried almost every method. Mothers at Kindy, who appeared to cope far better than me, would give me advice. They didn’t have chronic migraines and didn’t need anxiety medication simply to parent their child. The pain in my head was constant, as though I’d beaten it repeatedly against the brick wall of my daughter’s will. 

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She would not be moved. 

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Her name means ‘little rock.’ We named her sister ‘water,’ hoping to imbue her with more compliance and flexibility. Surprisingly, our little rock only had a handful of melt downs at Kindy in the first year. Her teachers were sensitive and attuned to her needs, constantly helping her with emotional regulation. She made a best frenemy and looked forward to Kindy days. The fighting and melt downs continued at home, but as the year went on her anxiety mellowed a little.  

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The Kindy staff suggested she do a second year. We were unsure. Would she get bored? Her best friend was going to school. We called in a child psychologist to help us with the decision and to check whether there was any chance she’s autistic. 

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‘It’s hard to say at this age with girls, but she’s not autistic, I don’t think. She’s too social and can speak about her emotions.’ 

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We opted for a second year, and three months in my daughter hit nervous system burnout. Not long after her fifth birthday she began fighting us on Kindy days, hours of incredibly tactical avoidance of every request to get ready, ending in utter panic. She began yelling at the Kindy staff, fighting, crying, and needing to be collected.

Everything about Kindy had changed. The teacher. The kids. The feel of the place. 

 

My daughter was trying to tell us she’d had enough. 

 

It was during this period of burnout that I realised my daughter is atypically autistic. 

 

‘It’s pretty clear now,’ the psychologist said when we visited her office for the second time.

 

My daughter has impressive communication skills, good eye contact, and a nervous system that perceives the loss of autonomy as a threat akin to death. It’s a lesser-known trait of the autism spectrum; Pathological Demand Avoidance (PDA), a nervous system disability. For five years, my daughter had internalised these nervous system reactions when outside the home, the stress building in her body, until she could no longer contain the fear. The dramatic changes at Kindy finally tipped her over her the edge. 

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Sit on the mat now, please. 

Stop what you’re doing, please. 

It’s time to collect your bag. 

You need to finish eating your lunch now. 

No, there’s no time left to continue that. 

 

Each request activated her nervous system into fight or flight, as if a lion were attacking, or a car hurtling towards her at full speed. Born into death, it followed her relentlessly. In burnout, she fell into constant cognitive loops, an epic battle inside her brain between her pre-frontal cortex and her amygdala. 

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‘Mum. I want to eat that toast, but I don’t, but I do, but I don’t, but I’m scared. Help me,’ she’d scream, eyes bulging, slamming fists and feet onto our kitchen floor. 

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‘Can I get you something else to eat instead?’ 

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Wrong question, Mum. Wrong concept all together. Asking a direct question during a cognitive loop is like throwing gasoline onto the mental fire. Perceived as a grasp for control, it intensifies the fear. With her nervous system completely overwhelmed, my daughter regressed to using dummies and nappies. She couldn’t sleep at night, or brush her teeth, or tolerate me leaving her sight. She would fight every single transition for hours, even when she wanted to leave the house. Her nervous system just wouldn’t allow her to change into her leotard for her beloved acrobatics class or put on her bathers and get in the car, though she was desperate to swim. 

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When I broached the subject of her autistic PDA at the playground, the messages from other mothers came in thick and fast: 

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‘She doesn’t look autistic.’ 

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‘Oh, she’s just being a kid.’ 

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‘Boundaries are difficult, aren’t they?’ 

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‘Well, I’m not interested in labels.’ 

 

This time, I wasn’t listening because the years of confusion had finally parted, and I could see my daughter clearly. Her adult-like speech. Her sensory sensitivities. Her terror at being hurried, asked to change her clothes or go to bed. A logical capacity beyond her years and a near photographic memory. It became obvious that half a decade of rules, traditional parenting, conformity, and commands were slowly chipping away at her ability to function. 

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My daughter was born into the storm of grief, and a world that doesn’t understand her, and despite this, she’s incredible. 

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Fierce. Empathetic. Resilient. Joyful. 

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We are finally parenting her in a way that works for her brain. We’ve dropped ideas of parental control and developmental milestones, and taken her out of Kindy at her request. We’ve learnt to listen and trust what she’s telling us about herself. If she needs to sit on the couch with one of us all day, we do it. We drop plans and hang out. If she can’t eat dinner at the table, so be it. If she can’t change out of her pyjamas that day, we roll with it.

 It feels wild, and new, and right. 

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The same instinct that told me I’d come across the answer to her feeding aversion tells me this is what she needs; choices and as much autonomy as safety and sanity allow.

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Now that I’m no longer trying to fit us into a neurotypical framework, I’ve found that I can be the water that flows around the rock, the strong hands that lift her out of a cognitive loop, a silent and steady witness to her dysregulation. Not all the time, but often. 

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We see daily improvements in her health. More laughter. More cognitive flexibility. Less panic. Better sleep. Fewer stomach aches and headaches. An increased ability to learn. She’s able to play with her little sister again, express empathy, and tolerate small changes. 

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Recently, we visited the local public school to see what accommodations might be made for her to access an affordable education next year. 

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‘Before we continue, will you be able to come and collect her if she has a melt-down?’ This question flew at us minutes into the discussion. Picking her up wouldn’t be a problem, but the abrupt turn of conversation made it obvious that we’d come face to face with an education system built for neurotypical children. 

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The fault did not lie with the educators, who were compassionate, upset that their school environment couldn’t accommodate her, realistic about their limitations. 

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‘We can’t extend her the way she needs either,’ they said.

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Too bright for a classroom of kids her own age. Too reactive for that same classroom. Once again, an outlier. No option for more intensive support. She would be expected to comply with every instruction. To sit when they said sit. Eat when they said eat. Change focus when they said change focus. Each command like an electric shock to her enlarged amygdala, sending cortisol and adrenalin surging, building day by day towards burn out. 

 

‘She can’t just move from one activity to the next when told to do so,’ I explained. ‘It feels like a threat to her life and the stress of it accumulates in her body.’

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The inclusion officer nodded along. ‘It’s not healthy for her.’ She had read PDA research coming out of the UK. 

She was right. At this stage, we’ll have to home-school if we want to support our daughter to maintain her mental and physical health. 

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My sister worked for a decade as a teacher before she passed away. Maybe if she were still alive, she and my daughter would’ve worked together to transform the public education system into a place where all neurotypes can safely learn.

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At the celebration of her life, I stood on stage and spoke about my sister’s strength and her courageous faith as death approached. Her guitar case lay on the ground, full of notes written by friends and former students that spoke of her passion for music, her creativity, the generous way she taught. 

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To honour her memory, we gave her name to my daughter, tucked safely in the middle. It means ‘promised to God.’ 

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‘One day, I’ll get to meet her in heaven,’ my daughter said. 

 

Though my daughter was stormborn, she isn’t broken. She’s simply and relentlessly herself. At two she was fascinated with tracking the phases of the moon, and worried that she might somehow lose her collar bones. At three she was obsessed with villains in the bible. She asked to dress up as ‘mean Pharoah’ for her birthday party and wanted her friends to come dressed as plagues. At four, she painted hundreds of little rocks to store in her room as treasure and solved maths problems at night to calm her mind before bed. These days, she’s the kind of five-year-old whose eyes light up given the chance to describe the features of a solar nebula. She is determined to invent faster space travel so she can visit all the planets before she dies. Her art blankets her bedroom walls, and she brings soft toy animals to my bedside when I’m sick, tucking them under the covers so I won’t feel alone. 

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She’s not a broken version of a neurotypical child. She’s unique and magnificent; the light that strikes through and colours the sky. Her brain teaches us about what it means to be human.

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Note: Ben and I learned almost everything we know about PDA from Casey Ehrlich's Paradigm Shift Program. For more information please visit www.atpeaceparents.com or find Casey on Instagram under atpeaceparents.

 

 

 

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