Some Thoughts on Supporting a Child with an Invisible Disability

And maybe a few too many ocean metaphors

✨ Hi friends. I’m a couple of days behind my desired schedule. I’m generally aiming for a weekly update on Wednesdays, but this week that just wasn’t possible. Thanks for continuing to read. If you’re enjoying what you’re reading, I’d love it if you’d share with a friend or on your social platforms. ✨

We’ve taken several trips to the beach since becoming parents. 

I never expected to be one of those families. I don’t love the way sand feels on my skin. I can’t swim. I spent most of my life believing that being in the sun would make my appearance less desirable to those who might otherwise want me. 

But every summer as I sit on the beach, I consider that loving my son is like entering the ocean—an unpredictable encounter with an often-misunderstood body. I watch him play in the waves as I feel little swells of emotion that only make sense for a fleeting moment. I write poems about it.

And the swimming. Friends, I am optimistic I could avoid drowning for a short time and hopefully be saved by a more ocean-adept individual, but that’s about it. I never go out too far—I prefer to keep my waist above water, but there’s always a small fear that something wild will rip me away from safety. 

I’m not sure I was equipped to parent before becoming one, despite the years of babysitting, volunteering, and having close friends with little ones. I’m honestly not sure I have truly learned how to “swim” when it comes to parenting, despite the fact that we’ve been at it for a few years. And this life has forced me to wade out much further than I’d ever imagined.

I’ve immersed myself in research. I’m learning about the medical model in our country, what constitutes a disability, the immense amount of stigma associated with the way my family is wired, but I’ve also been encouraged by the emerging supports and accommodations that seem to be revolutionizing well-being for families like ours—for children like mine.

My son is small, still. In the most intense moments of our life, I have resolved to be the weathered rocks that his dysregulation beats against. But as he gets older and physically bigger, I know that I will need new tools and skills to support him. 

I worry that I won’t be able to acquire them—that one day I won’t be equipped. Will it feel like pivoting to blindly build a lighthouse so that I might offer him a new kind of support—a beacon, an orienting point, in the torrential outpouring of fear and pain? I’ve never built anything like this before, but I know he loves lighthouses.

And as I think about oceanside structures, I keep thinking about the places we visit, how one beach trip required a last minute change because a hurricane took out a house we’d considering renting.

I find it peculiar that tiny seaside towns are so often a place of rest and respite, yet their residents (and visitors) willingly subject themselves to the unpredictability of nature’s fiercest expressions. Irrational bravery in pursuit of whale songs and the healing power of ocean air.

But isn’t it irrationally brave to be a parent? To be a child is, too. And to navigate an invisible disability on either side of this? Even more so.

And if we think of our family as one of these tiny towns—that we’ve built our life in a place that will offer rest, peace, respite for us and our loved ones, then we’ll keep doing our best to fortify it with an abundance of healing, grace, and all the safety and regulation we can provide. 

But ocean waters never still themselves, do they? They just take their chaos to a different place. 

The water picks up something whole in one place and deposits it somewhere else—salty, broken, transformed, covered in something new.

We have hoped aloud that one day we’ll find a message in a bottle—a letter about love or grief or something remarkable that only the writer knew had happened, until we’re lucky enough to read it for ourselves. And sometimes amidst the broken sandcastles, seaweed, and the occasional jellyfish, we find polished sea glass and intact shells. 

I hope we’ll keep finding little glimmers when we least expect it.

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Bits & Bobs

• New essay published! | My mom spent quite a long time in India, and we missed spending time with her regularly. While she was gone, I wrote an essay about her style of grandparenting (and my own expectations of our relationship), and I’m happy to share that Insider published it this week—just a couple of days after she returned. My mom was a low demand grandma before we knew we’d need that.

• Favorite things party | I recently attended a friend’s birthday party, and the theme was “Favorite Things.” She said she invited her favorite friends, and we were encouraged to bring our favorite things (up to $20) for a white elephant-style gift exchange. My gift was a copy of Aimee Nezhukumatathil’s World of Wonders and a couple of elephant items. It was hard to think of ONE favorite thing, so I picked something that reflected a love of good writing and my favorite animals. It was such a fun time. Will probably steal this idea for a party in the future—y’all should, too.

• TV so bad it’s good | I don’t watch a lot of currently running shows. I don’t like uncertainty, and I don’t like committing to things when I’m not sure how many seasons it will run for (or if it’ll be any good). But I randomly started watching La Brea, and it is so enjoyably bad. Definitely a laundry-folding show. The corner of reddit discussing each episode is also delightfully terrible and hilarious. If you don’t want to watch it, please at least read this review of the finale (written without watching any of the rest of the show).

• A movie so good I’m still thinking about it a week later | We watched American Fiction last Friday, and it was fantastic. I actually saw a trailer catching up on La Brea (I know), and we decided to watch it that night. Cerebral, funny, poignant, thought-provoking, convicting, relevant—all the buzzwords legitimately apply here. I hope we see the film win some Oscars this weekend.

Until next time, friends. 👋