The tightrope of relief and grief

Step out of what is too small for you, and into the uncharted frontier of what is possible.

Sarah helped Ben select a flower for me while they were grocery shopping, spring 2022

“She’ll grow out of it. It’s just a phase that all kids go through.”

This might be the most common response I hear from seasoned parents whose children have transitioned to adulthood. They remember from a hazy place and time, when their children were developmentally incapable of self-regulation but eventually evened out.

One would think that, by now - after almost thirteen years of being a mother - I would have learned to keep quiet about the travails of raising five children. Maybe my lamentations sound whiny, but likely they fall upon ears that receive my desperation as a typical struggle among moms of small children.

As many times as I’ve heard people tell me that Sarah will grow out of some behavior, I cannot be certain it’s true. “Maybe,” I say with a shrug or subtle nod, but inside, my stomach turns. My doubts about Sarah far exceed any confidence I hold about her growth or development, but I want to believe the tantrums are a phase – the kicking chairs and throwing objects and shrieks that reverberate in my eardrums for two solid hours after the house finally falls silent.

I so badly want Sarah to grow out of cackling like a demented Halloween character, especially when we are gathered as a family around the kitchen table, sharing a meal and lively banter about our day. Or that one day she might stop hoarding ephemera and cheap trinkets she earns in therapy sessions. I await the instant when I won’t wake up to shreds and tiny cutouts of loose-leaf paper littering the dining room carpet – the day after our house cleaner vacuums.

Recently, I was told that Sarah will never grow out of these behaviors. You might think she’s a toddler. She’s ten.

“It’s very characteristic of autism,” Rebecca voiced calmly, confidently. Every day after school, Sarah endures (and I appreciate) two hours of ABA therapy with her RBT (registered behavior technician), Riley. Rebecca, Riley’s boss, comes once a week for supervision and parent training. During a recent parent training, I couldn’t shake what Rebecca told me, though I wanted to. Every time I hear another statement about Sarah’s confounding behaviors, I want to believe they are not finales, but that we might still have a chance to defy the odds.

The odds to which I am referring involve the quirks and eccentricities related to Sarah’s multifaceted and complicated diagnosis. When she was born, I accepted that Apert syndrome - the genetic condition under which most of her treatments falls - would require (snatch, steal) a significant amount of my time and energy.

I grasp the physiological phenomena with ease. The data, the decades of research, the results of CT scans and skeletal surveys and blood draws cannot be disputed (much). Numbers? I can work with those. But when Sarah aged out of early childhood intervention and into kindergarten, the toddler-like behaviors lingered long after they should have. That’s when the abstract, nuanced portion of her life manifested: her cognitive abilities and deficits, the echolalia (repetition of phrases from movies or words she has heard in conversation), the perseveration (ruminating on one topic or question well past when it has been addressed), and the clear delay in emotional development and empathy.

I believed Rebecca when she spoke so bluntly, because her sole career has been centered on working with children on the autism spectrum, but my heart sank at hearing the words aloud - “She won’t grow out of it” - because of their stunning power, their truth. Until I heard this, I straddled the liminal place between hoping that she would phase out of these behaviors and fearing that she would not.

You might read this and think, Well, everyone is different, and it’s still possible that Sarah will end her petulant tantrums. And you would be right. Partially. What I want to convey here is that Apert syndrome combined with autism and intellectual disability and ADHD is a neurological enigma. Sarah drops a problematic behavior (let’s say it’s kicking chairs), only to develop a new one or regress in an area she previously mastered (such as bathroom hygiene).

In the moment of Rebecca breaking this news, I wanted to cry. I stared outside the dining room window instead, where the late afternoon sun began its sleepy descent. My eyes glazed over as I considered the weight of her words. I felt this shattering of hope over and over, and I wondered: Will it ever stay with me, this hope? Or will I continue to sink into disappointment at each new realization that, no, Sarah will not grow out of it – whatever “it” may be at the moment.

Neurotypical children move developmentally through resistance, conflict, screaming fits, and defiance in order to establish their identity apart from their primary caregivers. I know this. Parents of these children can look to the horizon – the same one I glanced at, and whisper, “Please help” – and know they will one day, in three or four years, be able to breathe again.

But my breaths are shallow most days. I try to allow the rhythm of my body return to stasis. Stasis for a mom of an autistic child means “on alert” all the time. She cannot truly rest, because who might get injured? What might end up broken or damaged or missing? What conflict will arise the instant she surrenders to rest?

Sarah once ate four bananas before Ben and I awoke to prepare her breakfast, the last four of the bunch I’d purchased only two days before. She was clever enough to hide the evidence in the trash and clean up her mess before we’d notice the obvious, then ask, “What happened to the bananas?” Even though we already knew.

She denied her domestic petty thievery, then devolved into a tantrum. When I say tantrum, imagine a two-year-old writhing on the floor, flailing her arms and legs, red-faced and shrieking as if she’d been fatally maimed. That’s Sarah’s way of managing stress. Or life. I haven’t figured out what exactly activates her behavior, because it’s always something new: She can’t find her purple pencil, though she’s searching in a jar of dozens of other colorful ones; she didn’t get the “right” cereal bowl for her oatmeal; her backpack is too heavy; the gym shoes she’s worn daily for a year suddenly hurt her feet.

It’s something I’d hoped, when she was two or three, might one day fade like it did for our other kids. But year after year, the behavior does not dissipate. It stays in her coping toolbox and thus in our home, invading our family milieu.

What makes sense for most families lies far past the standard deviation of normal for ours. And as Rebecca sympathetically glanced at me while I pursed my lips and deliberated on how to answer her comment, I realized that I was feeling some combination of both relief and grief: relief that Sarah’s behavior has an identifiable origin, and grief that, no, she won’t grow out of anything a neurotypical child does.

That’s the turbulence of how I live, how I function and process and metabolize every piece of information I receive: somewhere in the tug and pull of relief and grief. It’s a taut rope, a fierce competition between the two, and sometimes relief has the advantage, but mostly grief yanks hard to break me away from the fleeting respite.

Relief tells me to acquiesce, to let go. Grief tells me I must remain vigilant, armored. A centered space seldom settles, where the tension relents and this battle between rest and burnout turns slack. Ultimately, I wish I could relinquish the rope altogether.

But I realize as I write this that we all face some type of grappling between two contrary things. It seems more true as we mature. Maybe that’s what it means to grow out of - or into - something. You have to step out of what has become too small for you, what no longer serves its purpose in your life. And then you step into an uncharted frontier that beckons you to move more freely, to create, to discover.

Confronting both relief and grief in the moment I learned that Sarah will never move away from or abandonsome behaviors led me to an acceptance that I seem to revisit multiple times daily: some things cannot be resolved. And some things we never outgrow. Because who we are, at the core, cannot be altered, only unveiled.

In my frustration at clutching data and test results, I have overlooked the very simple reality that a life lived fully is a life tethered only to this moment, not to the past or to the future, not to the worry or the solution, not to the fear or the hope. It’s in knowing that growth is nonlinear, not just for Sarah, but also for you and me, that releases some need in me to know, to plan, to prepare.

Growing in and out of what we do and don’t do, what we say or refrain from saying, what we know and what cannot be comprehended - that is the convoluted territory of what it means to be human.

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What I’m currently reading

This book deviates from my standard memoir pick, but Felicity requested a trip to the library (“It’s been over three weeks, Mom!”), and though I knew the longer I stood by the New Non-Fiction section, the more likely I would succumb to checking out more than the book I had on hold, I agreed and took her.

This book title appealed to me, because I’ve been on an elimination diet for almost a month. Allergies have been acutely on the brain for me. Theresa MacPhail is a medical anthropologist, so she writes to inform and educate (with an occasional peppering of anecdote). It’s at times a bit dense and clinical, but also contains points of interest.

For one, though I am not even one hundred pages in yet, I am learning that there is no consensus among epidemiologists or immunologists about what an allergy is, or how to test for them. I am learning that there are differences among allergy, intolerance, and sensitivity.

Ultimately, it seems that most of us have allergies of some sort, but some of us do not demonstrate clinical signs after a skin prick test, while other people’s skin tests reveal significant signs of allergy, but they have no symptoms.

And, well, as for food allergies…yeah, I guess I am going to continue to eliminate gluten, dairy, and probably corn at this point from my diet on a permanent basis without the expectation that I will obtain a confirmed diagnosis of allergy. Because, like I said, allergy diagnosing can be fickle.