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On Symphonies and Snapshots

Something about Jacob’s story helped me to both grasp and release the shape of a heavy, previously undefined weight I’ve been carrying around in my chest. My son Coen also received an autism diagnosis as a toddler. And he’s considered non-verbal, or non-speaking, even though he does sometimes use words–you just have to be truly listening, anticipating his communication in order to recognize those words. And while none of my son’s doctors or specialists have ever used the words, “low functioning” or “low IQ” to describe him to me, some have used words and phrases which echo these exact sentiments. Things like, “He just doesn’t know any better,” or, “Sometimes these kids just do things like this.” 

At times, the heavy weight, the all-encompassing limitation is implied mostly in the way people speak, rather than in the words they choose. Once, during an IEP meeting in which we were meant to review and set appropriate learning goals for my son, a single, ordinary word nearly devastated me. A speech therapist who had worked with Coen for almost an entire school year responded to my assertion that he actually does speak words by carefully, maybe nervously, smiling. “Well, we’ve never heard him use words here,” was all she said. And that little phrase, with the emphasis on “here” (here, meaning his school, the educational setting, the place of formal learning and unbiased observation), was enough to dismiss the possibility of supporting and expanding my son’s speaking skills. The team moved onto other goals, leaving me questioning both my son’s ability and my understanding of his abilities–was I hearing speech from Coen because I was hoping for it? Was I being delusional, ableist, ridiculous? Or was this speech therapist dismissing my son’s potential? Was the limitation in her understanding of who my son really is?

Speech itself isn’t the point, of course. The problem is that markers like speech, attention, sitting still, answers to questions on a test, eye contact, typical or atypical body movements and vocalizations, and even (especially) IQ scores themselves will never render the full picture of a human being. Why do we still talk about metrics like “intelligence quotients” as if they aren’t deeply and inherently flawed, ableist, and reductive in every significant way? Having the ability, the specific skills needed to score well on an IQ test is fine, but how could that possibly capture everything a person can and cannot do? What they feel, how they think? How could any of the terms or markers we use in our clumsy attempts to understand, to peg each other down, to take each other fully in with a single snapshot? A snapshot will never, ever tell you the whole story–every thought, every emotion, every work of art or note of music, every line of poetry. And, beyond all of this (all the abilities we fail to see in one another with our labels and markers and other silly snapshots) our abilities and limitations are not the entirety of who we are. 

I’ve never had the term “low-functioning” applied to myself. I don’t know how that feels. But I do feel the very best intentions and the suffocating limitations being wrapped around my son whenever I tell someone he’s autistic and they hopefully ask if he’s high-functioning. Or when they tell me how heart-breaking it is to see children who can’t do certain things–like walk or speak. And I truly understand how well-meaning these people are, how much they want to understand and empathize. 

But labels are such clumsy attempts at understanding. My son can do so many things labels cannot predict. He makes the most unique art. He can climb, balance, leap and run like no other seven-year-old I’ve seen. He jokes and laughs with us. He comforts us when he senses we’re upset. He connects with others in his own sincere way. And he communicates, with and without words. None of these things make him more or less valuable than anyone else. But his unique set of abilities and disabilities are part of who he is. And none of the labels people use to try to understand him capture all of that.

Today, our family has the benefit of an in-home support person a couple days a week. The first time she met our son, she dismissed his “non-verbal” label. “He’s saying words,” she immediately noticed. And I realized at that moment our family had been gifted with a professional who could see and understand human beings in their wholeness,  without fragmented snapshots. 

This is the basis for appropriate specialized support–inside the classroom, at home, and in the community. Like the neurologist in Jacob Brock’s story who dismissed the idea he couldn’t communicate, we need to be and to have people who meet our dynamic selves and loved ones in a state of ongoing growth. “High functioning” may be a label which prevents some folks from getting the support they need and deserve. So is “low functioning,” and phrases like it. Nobody fits inside a single snapshot. Every human being is a masterpiece, an anthology, a symphony. And seeing and understanding the entirety of any human masterpiece is a process which must live, breathe, and expand with that masterpiece.

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Sometimes you don’t even realize you’ve been living in a pit of depression until flashes of feeling begin finding you by surprise. Like the fragile, flickering trail of a lone lightning bug, stubbornly reaching out across the yawning, expansive darkness in hopes of finding a mate, the glimmers catch your eye, and you look up, remembering it hasn’t always been like this–so empty and cold, so endlessly uninspiring. 

I think the transition to depression is less of a fall, though, and more of a gradual slipping from a psychological sleep into a deep emotional coma. Sometimes, you have to focus on survival–on getting everyone to school on time or to their appointments, cleaning up messes, keeping your child out of heavy, fast-moving traffic, preventing the swallowing of sharp objects, making sure nobody drowns in the pool, helping your children to sleep at night, even if it means sub-par and inconsistent sleep for yourself. And you do this for a couple of weeks, and then a couple of months, and then a couple of years. You become the only safety net available in this void created by a lack of services and of an elusive, perfect form. You smile, and make small talk, and perform work tasks, but part of you has died from holding your breath for so long, waiting for the other shoe to fall–waiting for that moment when you fail to keep your child from those four lanes of manic traffic.

When you’ve been holding your breath for a couple of years, it doesn’t even occur to you that you might one day hope for an existence that’s lighter, more sustainable, even more inspiring. You can’t see the signs of life unfolding right before your eyes–your children growing, changing; your writing goals taking shape and getting closer and closer to reality. You just see the next step in your never-ending, nearly impossible task of survival. You’re just holding on until the next second and then the next. 

I lived like this for a couple of years. Then, last winter, one of the most beautiful and powerful humans I’ve ever known invited me on an adventure of a lifetime. She said she knew I really needed a vacation. And I did. But that’s not really what I got when I flew with her and our mutual sister-friend to Rome. What I got was an awakening–a flood of experiences by way of authentic pasta, pizza, gelato, wine, incredible art, and the reality of ancient history living around us everywhere we looked. I got to know my close friends in the most unique way. And I got to know a part of myself that had died, holding her breath over the terror of failing at survival. 

This trip was a privilege and a miracle. It was the moment that sparked my return to the land of the living. After I got home and began to process everything we experienced together, months later in fact, I found tiny flashes of life reaching out to me through the shadows again. I felt a surge of gratitude when I could splurge on a decadent chocolate dessert and set it down in front of my children to devour. I felt genuine pride and wonder watching my daughter teach herself to swim across the pool without stopping and watching my son figure out how to find the right key to open locked doors. I felt excitement in hoping for possibilities long buried beneath the weight of our uncertain existence–maybe my writing career has just begun. And maybe, just maybe, we might be able to have a traveling adventure as a family again some day.

I can’t say that I’m completely out of the woods; that my life doesn’t still feel largely about survival. But I can say it’s not just about survival right now. I can say the flashes of hope beckoning me back are clearly visible and more frequent. I can say that I believe in the possibility of fulfillment I haven’t had the energy to dream of in years. And it feels so good to have those parts of me back again.

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This week, the kids and I have all been home together, trying to find our way out of the cloud of germs that’s settled firmly over our family. Although we continue to test negative for COVID, the stuffy / runny noses and hacking coughs have kept us from venturing into the wider world and our normal routines, out of respect for our community and concern about spreading something harmful to others. 

It’s difficult to find words to describe what being trapped in a bubble (again) is doing to us, partly because it’s not creating a singular effect. Similar to our initial isolation at the beginning of the pandemic, when schools and programs were closed, and in many ways, as a snapshot of the pandemic as a whole, this mini quarantine is both a blessed break from the external pressures constantly building around us and a recipe for effervescent pressures bubbling up from within. 

At the beginning of the pandemic, we felt trapped inside our Portland apartment, with very little yard space for the children to run and play. The wall paper, wood finishings, and our own furniture suffered as undiagnosed, untreated hyperactivity mixed with intense sensory seeking needs. My husband had no choice but to keep going to work as a mental health professional in a group home setting, and I struggled to make video exercises and hold a few online meetings for kindergarteners while my own children battled rising anxiety disorders and developmental challenges in the background. It was a nightmare, but it was also the impetus for desperately needed changes, as I’ve written before. 

This time around, under slightly different circumstances and with two years of experience in pandemic pivoting under our belts, we’re still living the paradox of embracing the freedom quarantine offers and straining for release from its impossible containment. On the one hand, there’s no morning rush to pack lunches and backpacks, brush teeth and do hair, battle about clothing requirements, and get everyone off for the start of their day. On the other hand, with frigid temps keeping us from the backyard and nowhere else to go, we’re struggling to get the stimulation we need during the day for a tenable sleep routine at night. As I set learning and daily living goals with the children, I’m witnessing, first-hand, the developmental and academic growth that’s happened through the school year, and it has filled me with immeasurable joy and pride to see it. At the same time, this communal lying-in period means my son and daughter aren’t accessing the services and professionals who have helped support this growth for half the school year. We are connected to each other in a way we haven’t been for many months, joking, playing, having impromptu dance parties, and working on puzzles to break up screen time and learning. We’re also lonely without friends and teachers to interact with. And with no real time apart from the children, even in sleep, I’m feeling deeply disconnected from myself. 

I’m not sure how to end this blog post, because we’re still in the thick of it, here. I’m both cherishing the change of pace quarantine has brought us, and struggling to balance all of the competing needs (and still get some of my own work done in the process). It’s just as impossible as it was when the pandemic first found us. But one thing we’ve learned over the past two years is how to give ourselves some slack, be flexible in our demands of ourselves and each other, and celebrate all our wins, because it turns out every win is profoundly impactful and none of them are small. 

Here is a sample of our weekly wins: My son is finally feeling comfortable exploring the entire upstairs of our home and might eventually be able to move into the bedroom space we originally planned for him, is brushing his teeth twice a day with support, and is tolerating some clothing. My daughter has been building early French vocabulary, working on conceptual math with Khan Academy, and is feeling more confident reading little primers to myself and her father. Matt and I have somehow found time to finish Season 2 of The Witcher, and will soon be moving onto some other sci-fi / fantasy / dystopian fiction show to make our everyday lives feel less absurd. As I said, huge wins all around! 

The internal pressure building over the past several days isn’t inherently better than the external pressure of social routine, but maybe we have become better equipped to manage it. To be honest, I’m not sure any of our wins would be happening without quarantine forcing us to step back, let go, re-evaluate, and try new approaches. And that’s the lesson this pandemic has forced us to learn. It’s the acceptance of what we can’t change and the willingness to take small steps toward bigger goals which keeps us moving. Maybe I don’t have the spoons to potty train my son in a week, but I can kindly and patiently help him work on wearing pants so the constant clean up isn’t overwhelming me and filling me with stress and rage that spills out on everyone. Maybe I can’t enroll my daughter in a local French language group for children, but since she wants to learn, I can download an app and practice with her everyday, bouncing back and forth from her side to her brother’s, meeting whatever needs I’m able to as they arise in the moment. 

So, that’s how we’re navigating this mess–one moment at a time, and only as we’re able, with dance breaks, and gentle goals, and the quiet celebration of all the little (huge) wins.

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I won’t be sharing a full-length blog post this week, because I’m too tired to write one. After a mercifully extended whirlwind weekend of beauty, warmth, and amazement with two of the best humans I’ve ever known (an adventure we’re calling our Grown Ass Women ‘s Trip), I came home to frigid temps and a sick family–although nobody is testing positive for COVID, and I’m incredibly grateful for that. 

The past few days, I’ve found myself craving the time and space quiet solitude affords to reflect on everything I’ve experienced–to decompress, to find my natural rhythm again. Instead, I’m washing an endless pile of blankets soaked in body fluids and offering endless popsicles and snuggles to tiny people who have become very snoozey, toned down, unhappy versions of themselves. When I have the opportunity, I snatch tragically inadequate pockets of time to tackle the professional work task mountain which rapidly materialized in my absence from our home office. It’s not the transition back to “real life” I envisioned.

So, today I’m on vacation. And while the vacation I crave is a quiet room where I can crash whenever I want and sleep until my body wakes naturally, where the laundry isn’t mine to do, and the only tasks I have to accomplish are books to read, gaudy sunsets to admire, and exquisite meals to devour, the vacation life affords me looks a little different. My vacation is snuggling on the couch with my babies when I know I “should be” doing the dishes. It’s going to bed before my 7-year-old is ready and leaving my phone out so that, when she finally finishes watching TV with her dad, she can settle down next to me and turn on her audiobook while she drifts off to sleep. It’s writing a short and sweet, uninspiring, non-post on my blog and NOT staying glued to my social media accounts to make sure I react and respond to every comment. It’s just me being gentle with myself. 

I hope you can find ways to be gentle with yourself today, too. 

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If you live with young children, or if you just enjoy quality animated films, you’ve likely seen Disney’s Encanto a million times by now. And if you’re like me, you’ve already seen some very meaningful think pieces on the characters–Louisa especially seemed to strike a chord for many femmes shouldering more than their fair share of the family and community load. I also came across a poignant write up on Bruno, who was written as an incredibly relatable “black sheep.” 

But for me, from the very first moment to always and forever, my character is Mirabel, and not just because she’s the protagonist. It’s not even because she is the “ordinary” one in a house bursting with extraordinary characters. In fact, from the beginning we see that Mirabel isn’t ordinary at all. She stands out painfully, even when she tries to fit in. Everywhere she turns, someone is there to remind her, define her, blame her, or pity her, based on her perceived lack. Based on the fact that she doesn’t have an obvious “gift” like her sisters’ beauty or strength, her mother’s healing powers, or even one of the many quirky and entertaining gifts of her extended family members. We see how deeply she feels this “lack,” how desperately she tries to avoid or overcompensate for it, and how constantly it’s thrown in her face. 

As a parent of a bright, energetic, funny, affectionate, beautiful nonverbal child, a child who’s often defined in the world by a perceived lack, Mirabel’s constant run-ins with torturous reminders is more than cringy. It’s gut-wrenching. The other night, while our family was gathered around the dinner table, munching on our “Tuesday Take-out” (a new tradition) and listening to the Encanto soundtrack, I found myself staring at my son, tears welling in my eyes. “Waiting on a Miracle” was playing, and all I could think about was my little boy, with all of his unique giftings and personality, going unseen, unheard so often. Even, sometimes, by me–too caught up in everyday happenings to appreciate all the things he communicates with his eyes, his smile, his movements, all the little claps and chirps and clicks he makes. I got up and hurried to the bathroom, choking down a sob as Mirabel sang of her “longing to shine like all of you shine!”

As we plainly see over the course of the story, and as any individual defined by a supposed lack can probably tell you, the miracle Mirabel longs for isn’t a new gift–some spectacular ability everyone will immediately notice and admire. It’s the acceptance, the validation, the acknowledgement of the people in her family and community. She wants to be seen and loved for who she already is. 

And she is already amazing. She’s an incredible listener. She knows how to hold space for the sorrows and joys of others, encouraging and supporting without judging. She’s oozing with empathy for her loved ones, even when their trauma and toxic coping mechanisms have wounded her deeply. She is just a beautiful soul. As her Abuela and family finally acknowledge in the end, the miracle is embodied by who she is, not what she can do.

For me, Encanto serves as a powerful reminder that every child, every person, is a miracle. It reminds me that my son, specifically, is already here, in his fullness, in all his uniqueness, and giftings, and wonder, ready to connect with me, ready to be loved and celebrated. I don’t want him to have to wait until he performs some standard measure of verbal communication to receive his miracle. I want him to know that he’s seen, loved, heard here and now.

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Since I’ve enjoyed reading other people’s yearly highlights for a while, and since I’ve finally started this blog, I thought I would take a moment to write an absurdly long recap of my year, including little paragraphs about each family member, because their stories are also my story. If you’re as curious about the hidden lives of everyday people as I am, you might enjoy learning that over the past 12 months:

Our family marked 1 year in our first house, with the yard and functional living space we so desperately needed. With numbers of all sizes constantly being sketched, painted, and carved into every surface of our home, having space that’s truly ours has lifted an immense weight from our shoulders. Most surfaces here are easy enough to clean, and we have a fenced-in green space for the kids to safely run, swing, climb, and bounce in, spring through fall.  We’re grateful every day for this privilege, and for being closer to family, though we miss the people, places, and general sense of belonging we had in southern Maine as a bunch of nerdy, quirky, politically left-leaning folks. 

We also adopted a chocolate labrabull named Clover, and she has been really good medicine for everyone. She’s learning not to chew on furniture and clothes, and she enjoys going for walks, playing in the backyard, aggressive snuggles, and trying to eat as much human food as she can possibly nab.

My husband turned 38. He got a new job which meant a vertical move with a better title and more pay, but also meant more unscheduled hours and more over-nights without the benefit of overtime, as well as more personalities and work approaches to manage. For the first several months, it was very challenging for everyone, especially when he had to unexpectedly leave in the middle of the night. We have some light sleepers around here, and it often feels like an overnight shift for him is an overnight shift for the whole family. It’s getting better, though, and Matt is enjoying his work and gaining recognition for his efforts. His new job is also much closer to home, which helps a lot, especially in the middle of the night and during winter weather messiness. 

My daughter turned 7. She learned how to ride a bike without training wheels, how to do the doggie paddle and maintain several minutes of no-floatie-swimming, how to ride a horse (thanks to some lessons generously gifted by her grandparents), and how to read many new words. She lost her first 3 teeth and has been attending full-time, in-person school for the first time since the winter of 2019-2020, which has been both a welcomed change and the catalyst for a whole host of challenges for us all–socially, psychologically, philosophically. We even engaged in a deeply depleting but ultimately rewarding battle for district-wide masking, the outcome of which made school possible for our family .The best part of school for my girl has probably been the chance to play with friends, and that alone has been worth it. 

My son turned 5. Because most public schools are not funded nor equipped to meet his needs, and because programs for children who need similar levels of support are scarce and full to capacity, he began kindergarten at a program a full hour away from home. (Many children travel even further for appropriate services). Due to the work / school schedules of the rest of the family, the location of his school meant he also had to learn a new bus routine–the prospect of which was initially overwhelming for everyone, despite the prep we tried to do with photos and social stories. We were able to visit the school as a family and had the chance to explore the rooms at the end of the summer, but weren’t allowed to ride the bus with our boy to help ease him into this new experience, and the first time he got on, it was terrifying for us all. I was shaking and sick to my stomach all morning, doubting almost every choice I’d made as a mother. I was sure I would get a call any moment telling me I needed to come get my completely dysregulated, terrified, inconsolable, unable-to-be-safe baby. 

But the call never came, and when he got off the bus at the end of the day, my boy seemed calm and happy. The seasoned special education driver assured me the first day is always the hardest. By the end of the week, my son wowed us all by adjusting to the long ride on this new, large and noisy vehicle, and he’s now eager to get on the bus every morning. He rocks his school time routine on the regular, and tries to get ready to go even on weekend mornings and over school vacations. At school and home, he has been working on using his communication device and many other important skills like sitting down at the table and eating with utensils, interacting with Clover, and washing hands. He continues to astound us with his incredible (and incredibly prolific) art work.

As for me, I turned 37. I marked 1 year as a part-time employee at Maine Writers and Publishers Alliance–a job that’s allowed me the flexibility to make and keep the many appointments with providers and specialists our family requires and has allowed me to support the children whenever they’re unexpectedly out of school. This job has also given me a sense of everyday accomplishment in the midst of a blurry, half-conscious existence of unending laundry, dishes, chalk-number cleanup, ever expanding to-do lists, and in the long stretches of time authors sometimes spend waiting for their next creative project to find its way into the world. 

My second book was, however, published. It came out to less initial acclaim than my first, but I still hear from folks around the country who have read and love Magic Like That (Lee & Low, 2021), and it makes my heart dance to hold my own writing in my hands. In the wake of this highly anticipated release, I attended a book festival in Bath, where I met many seasoned, successful, and even renowned children’s book authors. It was honestly one of the best days of my life. I also got to do a handful of in-person author visits for the first time this year. I don’t make a living through my creative work. Not even close. Sometimes I feel like a “real writer,” and sometimes I don’t, but these moments of genuine connection with readers and other authors have sustained me.

In this current age of chaos, every year feels like a well-planned canoe trip turned white water rafting misadventure. And yet, life continues through all the little triumphs and sufferings, the celebrations and uncertainties, and even grief. As we’re swept along on the unstoppable current, being splashed, tossed, spun in circles, we sometimes have to take a breath, look around, and bear witness to this reality, our very existence, unlikely and astounding. We are still here, sometimes just surviving, holding on for dear life, and at the same time, in some ways, miraculously thriving.

  I’m celebrating this paradox of thriving in our fight for survival as we move tentatively into a New Year. I hope your New Year brings you moments of comfort and rejoicing and the means of thriving through the chaos as well. 

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When I was a child, the holiday season was absolute magic. Maybe you can relate. I remember my mother and grandmother staying up late, baking trays and trays of special cookies and foods for feasting. They wrapped so many presents for me with green, and red, and silver paper, topped with shiny bows. They decorated our plastic tree with tinsel and garland, and we played Christmas music and classic TV specials. It was my favorite time of year, and I always imagined that when I had my own children, I would build on these traditions, amplifying the festive joy for the next generation, becoming the mystical keeper of Christmas magic.

At the onset of motherhood, it seemed like I was heading in the right direction. Matt and I bundled our family every year and drove to the nearest Christmas tree farm, determined to pick the perfect, real-deal focal point for all our holiday activities. We wandered over uneven fields of frosted moss and underbrush until we found one with the right size, shape, and branch distribution, then cut down the anointed evergreen ourselves, slowly sawing a line through the sinewy trunk with the dull tools provided by the farm. At home, I tackled cookie baking with my daughter, making sure to include flavors like mint and gingerbread and making use of festive cookie cutters–snowflakes, stars, candy canes, trees. We left treats out for Santa and the reindeer on Christmas Eve, and once the children were finally asleep, my husband and I would dispose of these provisions while we wrapped and placed presents under the tree.

These were the years before our needs shifted and the pandemic found us. Before children waking up for the day at 4am, or 3am, or 2am. Before extended school closures and interruptions in services. Before taking a ride as a family anywhere was a gamble with a barrage of questions we had to carefully consider–will anything trigger sensory dysregulation which we can’t contain or wait out? Will anyone get hurt? Will anyone have fun? Will it be worth it?

A couple years ago (in 2019 to be exact), while my mother was staying with us and helping with the children on a daily basis, and while we were briefly enjoying the perks of officially being a dual-income family, my husband and I forsook the Christmas tree farm and drove instead to a large department store, determined to scour the aisles for the realest, most festive, fake Christmas tree we could splurge on. We found one with snow, frost, cranberries, and pine cones. It even came covered in a set of white lights. The deep, permanent exhaustion, which at this point was already setting in as my ability to meet my children’s growing needs fell to question, seemed to ease just a bit as we loaded the tree into our cart, and I felt my entire being exhale with our purchase. We put the tree up early that year, and I found so much joy and satisfaction in our ability to celebrate, even if we couldn’t keep up with every tradition. 

In hindsight, this moment was perhaps the beginning of the end. Over the past 3 years, my holiday idealism has continued to crumble and succumb to a more honest reality–my capacity to plan and execute festive traditions is limited. I’m struggling (and sometimes failing) just to get everyone to their appointments, to maintain a level of semi-functional, not-complete chaos in our living space, to feed the children enough daily calories in the form of maybe actual food, and the responsibility to amplify Christmas joy at every turn is not one I can keep.

But one of my favorite carols has always been “God Rest Ye Merry Gentlemen,” and I especially love the refrain, “Oh tidings of comfort and joy / Comfort and joy / Oh, Tidings of comfort and joy!” The lines burst with the promise of spiritual ease and pleasure, which I desperately crave, and lately, I’ve come to realize that both of these elements, comfort and joy, are integral pieces of celebration. You can’t consistently sacrifice comfort and remain joyful. What kind of holiday is that? And to be perfectly honest, sometimes the pressure to create and experience pure joy just amplifies our sense of overwhelm, failure, and depression.

The fake tree is going strong in its third year at our house. This year, we discovered multiple bulbs had burned out, so we replaced the white lights with a set of frosty blue ones. We’re on our third tree topper (a snowman head which my daughter says looks ridiculous), and many of the pine cones and cranberries have been torn off. We still love it. By tomorrow, a few well-chosen, meaningful gifts will be waiting for our children, in a location we haven’t yet decided on, because it’s likely at least one child will be up at 2am, and we can’t let them open presents before their sybling. We’ll figure it out.

As of today, I have made (or will have made by the day’s end) exactly one batch of Christmas cookies, over the course of about 2 weeks. I mixed up the dough early last week, and we have been rolling, cutting, baking, and decorating at the pace our life allows. The truth is, our family has other things to do besides baking billions of cookies and wrapping billions of presents. Things like taking little rides through our neighborhood to look at holiday lights, watching the occasional Christmas movie, and snuggling on the couch whenever a rare moment of shared stillness finds us. 

Some folks can do all of these things, bake themselves into oblivion, wrap infinite presents with shiny bows, and still ooze with festive joy. I’m not those people. And I’ve found I have to give up some of the spectacular Christmas razzle dazzle if I’m going to hold onto some measure of comfort for myself and my loved ones, which is much more consistent, tangible, and attainable than perfect Christmas bliss.

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A while ago, my dear friend and literary agent, Charlotte Sheedy, suggested that I start a blog about my experience as a neurodivergent mother, parenting neurodivergent children, in order to foster connection, community, and mutual support with other families who might relate to ours. Although I told myself I would totally get around to this task, I’ve been dragging my feet for several reasons, including the fact that when you start to open up about your individual, everyday struggles, you can actually create the opposite of connection and support. You can generate what feels like a lot of judgement, resentment, and indifference. You get a lot of blame and unwanted advice that sounds like, “If you would just do x,y,z, you wouldn’t have these struggles.” Or, “Instead of feeling THIS, you should just think THIS.” And you get many, many versions of, “It’s hard for everyone, so why are you complaining?” In other words, you learn how many people think the problem is you. In the end, you can find yourself feeling unseen, unheard, and more deeply isolated than you were before bothering to reach out. And I haven’t wanted to go down this road again.

Because with some people, it doesn’t matter. I don’t care if people I don’t know and don’t like think I’m a failure of a parent or a terrible, miserable person. But with others, with people I admire and want to stay connected with, judgments honestly do cut deeply. And I don’t want to fight and explain and defend and repeat, repeat, repeat in order to be heard. I mean, I can’t, really. I don’t have the spoons. So, the thought of starting a blog to say “This is what it’s really been like in our home for the past few years. These are the struggles we’ve faced. These are the little miracles that have gotten us through,” at the cost of losing some of the respect it turns out I actually do crave, has been less than thrilling. 

But I’m finally taking my first steps on this blogging path for a few important reasons:

1. Maybe I need to unload this stuff somewhere. The length of my Facebook statuses attests to the fact that I crave catharsis, maybe even more than I crave respect. And maybe Facebook statuses aren’t the best platform for publishing every chapter of my personal memoirs.
2. Maybe it’s time for some weeding. If a loved one came to me, laying out the reasons I had for NOT starting this blog, I would give her this message: The people in your life who pass judgment when you need support are not your people, no matter how badly you want them to be, no matter how much you admire, love, respect them. If the feeling isn’t mutual, maybe it’s time to let them judge you and lose their good opinion (if you ever had it to begin with).
3. Maybe somewhere, someone else needs this blog and this potential community even more than I do. Maybe as I lose some friends and followers who don’t have the spoons to listen to my venting and to invest their empathy in me, I’ll discover some new comrades who need the empathy and understanding I have to offer. Maybe we’ll find each other and build this dream community together. 

In other words, maybe the beauty of the benefits outweighs the terror of the risk. Maybe it’ll be worth it. And there’s only one way to find out.