From Birth to Transition – Part 1
June, 2013, 2 am inside the post office box that The Socialist and I called our bedroom. A groan, a push, a gasp and I’ve caught Little Smye in the birthing tub. The midwife smiles as I fumble my child into my arms, hand the wriggling lithe bundle to The Socialist and cut the cord. “A son,” I cry. “We have a little boy!” I’d never in my life felt such joy or sense of completeness and grounding. Little did I know how much greater joy, sorrow, fear, despair, and elation was to follow.
We knew something was wrong almost immediately. They say that shortly after a child is born, there’s a 4-6-hour period where the newborn sleeps. This was not the case for Little Smye. Our child wailed from the first moment Earth-side until 48 hours after birth. We reached out, we sought help, we were told Little Smye would ‘grow out of it.’
Then Little Smye couldn’t nurse. Every sip of breastmilk led to horrific pain for The Socialist as our child clamped down fiercely and heart-rending choking and gasping as every last drop was aspirated. Five months of finger-feeding pumped milk at about an ounce every 2 hours, three frenotomies, and far too many sleepless nights followed. We reached out again, our child was far too unhappy to be really and truly okay. This was more than a tongue tie and an inability to swallow liquids, we were sure. “Don’t worry,” they chided. “You have a strong boy there; he’ll grow out of it.”
At seven months our seventeenth nanny for Little Smye quit after only 2 hours on the job. We were in the office, each working from home during that ‘trial day’ when we heard a second cry join Little Smye’s. When we went out into the living room, we found our child thrashing on the floor and the nanny – a woman who’d only hours before described herself as ‘able to handle anything, I was in Special Education for 20 years’ – curled in a fetal position crying on our couch, back to our baby. “It’s too much,” she whimpered. “Nothing can sooth your child. I can’t take it, I’m a failure.” Then she ran out of our home. It was like something out of a caricature of a ‘nightmare nannying job’ movie. One caregiver described Little Smye as Dennis the Menace meets Problem Child meets The Omen… with a little of Jigsaw’s cruelty thrown into the mix. Except that our child was only seven months old.
At eight months we turned a corner. Little Smye was nursing heartily and able to drink water if it was thickened with xanthan gum… but still was screaming for 7-8 hours solid daily and sleeping fewer than 5 out of every 24 hours. Any small change in the environment, from the central air kicking on to a car driving past to a cloud passing in front of the sun, to staring dinner 3 minutes before or after the usual time would trigger a violent, spasmodic meltdown. Little Smye still couldn’t sit up or even roll over yet. Something was wrong. “No, you’re fine,” they assured us. “Perhaps you just need some remedial parenting classes.”
At twelve months we finally found a doctor willing to give our child more than a perfunctory once-over. I’ll call him Dr. D.
We were floored. Our child could now sit, roll, and was even speaking in short sentences. One day our kid was mute, a week later I heard “Papa, milk please.” Why was this doctor willing to see us with the gains we’d made? Little Smye was also finally willing to sleep without being tightly held in my arms, I was getting more than 2-hours of sleep in a row – just the night before our appointment I’d managed 3.5 – things were perfect, no complaints. Right?
The morning of the appointment, I called a friend I’d met in birth class to double check whether it was worth wasting this doctor’s time. I described the leaps and bound of improvements we’d seen in Little Smye, our improved quality of life, the fact that I could once again think in multiple complete sentences even if I sometimes had difficulty in speaking them. Things are great! “Um, Smye… none of that is normal. Not even a little. Your child shouldn’t be using words like ‘probably’ yet and you should absolutely be getting more sleep than that. Something is very wrong. Why haven’t you taken your kiddo to specialist before this?” We had. Twenty-four specialists had told us that ‘Little Smye will grow out of it, your child is too young for this to be significant in any way.’ Thank goodness for Dr. D.
We met Dr. D. in his office. “Hello,” he greeted each of us, even Little Smye. My child whimpered and shied away. “Little Smye doesn’t do well with new people,” The Socialist explained. “In fact, if you’re not careful, Little Smye will identify you as someone not to be trusted and… well… we still can’t go through the line at Safeway with the cashier who touched Little Smye’s cheek when Little Smye was 2 months-old.” It was true, even at three years old now, Little Smye recounts the horrors of “The lady with blue hair who touched me when I didn’t want to be touched but couldn’t say no because I didn’t have words yet,” before melting into a puddle of re-traumatization.
Dr. D. smiled, “No problem. I completely understand.” Dr. D. then proceeded to ask us a number of pointed questions; observe Little Smye stare, rarely even blinking, at a piece of yarn blowing in the breeze of a desk fan for over an hour; note the total, violent meltdown when a nurse walked by the door unexpectedly; and offer solace in the form of empathy and validation.
“I’m making a diagnosis of Autism. You’ve been to how many specialists? This is among the most cut and dried instances I’ve seen in decades. I suppose it’s just that your son is so young… they don’t want to over pathologize. But in all seriousness? There is zero doubt in my mind on this one.”
Autism. Finally, a diagnosis. It was the one we’d expected; the one we’d not dared to utter to any healthcare professional for fear they’d see us as “those Munchausen-by-proxy parents” rather than taking us seriously; the one that brought total validation and relief. Finally, someone the world would respect and listen to had given us an explanation for why our child was suffering so deeply. Or… part of one anyway.
What followed were countless visits to occupational therapists, psychotherapists, speech pathologists, autism clinics, birth-to-three services, schools, and several other professionals I cannot recall.
By 18-months, we had in-home ABA therapy, weekly OT, supports from all over the map and were up to 4-6 hours of sleep each night. We also had a child with an active vocabulary of 5000 words and the emotional maturity of a 3-month-old according to one expert. We’d swapped Little Smye from wearing pants and shirts to primarily dresses and skirts at her request and our child seemed far happier. It seemed the sensory aspect of autism was preventing our kiddo from wearing anything tight on the legs. We had no problem with this whatsoever, the clothes don’t make the kid and hey, if you’re happy, I’m happy.
It seemed we’d ‘arrived.’ And yet still, our beloved diamond still was dreadfully unhappy. Whenever the cashier at the feed store would remark “what a handsome young man you have there,’ my child would devolve into a multi-hour scream-fest of the sort that makes your eardrums ring and all you hear is ‘wuhwumwuhwumwuhwum’ rather than the screams themselves. You know the kind of pitch and volume I’m talking about.
It wasn’t until she was nearly three that we finally discovered the next piece of Little Smye’s very complicated puzzle.
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