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I, like most everyone else, have been horrified and sickened by the reports of children being separated from their parents or caregivers at this country’s borders. It is almost too much for me to imagine the pain of every person going through such a nightmare, one that is heart-wrenching, one that is traumatizing in both the present and that will be for the rest of their lives, and one that is unnecessary and avoidable.

I remember sitting in the front seat of the car with my Mama one morning as she was dropping me off at my elementary school. I became frantic that I wouldn’t see her again for whatever reason — the anxiety raging in me that had been produced by the cornucopia of dysfunctional delights at home, or just a child’s moment of neediness — and I began to cry and beg her to take me to work with her. I needed to be close to her for a little while longer that morning, and she, being soft-hearted despite the strength she often displayed in raising my sister and me, honored my request and let me sit beside her at her desk at the courthouse for a few hours. When I felt better, she took me to school. I was six-years-old.

I know now that I spent most of my childhood feeling insecure about my footing in the world because I was unsure about hers. I was always afraid that I would lose her. There are now myriad examples of how those feelings have manifested themselves in my adult life. I’m one of the lucky ones — I’ve been able to trace it all back and find many of the events that ultimately produced my mass of symptoms — and I still, even with all of these years lived and with a lot of personal work done — catch myself in the throes of reptile brain, reacting and thrashing around, sometimes wreaking havoc in my own life because I’ll do anything I can think of to do to just be safe (though safe is a relative term and I don’t always know what it actually is) — until I can talk myself into a calmer state.

I can’t imagine what those children who are now separated from their families feel, who are not just being dropped off at school for the day. Who is holding them? Who is loving them? Who is making sure they eat? Who is playing with them when they’re in, “foster care or whatever?” Who is making sure they aren’t mistreated and abused? What about the ones who can’t communicate in english? What about the ones who can’t communicate AT ALL? I’m sure there are some. How will any of them ever recover from having the only safety they’ve ever known, their families, taken away? Think, for a minute, about how all of that trauma will reverberate into the world.

Look, I know the arguments about why people shouldn’t try to cross the border illegally. I understand them. It can’t just be a free for all in the supposed land of the free. But why are we so removed from the feelings that cause such actions? How can we sit back and not be able to imagine ourselves attempting to escape violence, extreme poverty, lack of resources and education and medical services in whatever way we could? Why is it that so few of us seem to be able to imagine ourselves being in such unlucky positions? Insert the quote about being born on third base and thinking you hit a triple here…

Why do we consider those less fortunate than we are to be the others? All it takes to be an other is being unlucky enough to be born in a country that isn’t as prosperous as this one. All it takes to be an other is making a few decisions that turn out to be the wrong ones. All it takes to be an other is being born non-white. Yes, I just wrote that down.

Just imagine, for a second, those things happening to you. Imagine looking at your child grow up with danger all around her every day, without clean water, without good schools, without enough to eat. Then imagine NOT doing everything you could to get her a better life. You wouldn’t not do everything you could for her, would you? Imagine doing the only thing you can think of — fleeing your circumstances — then imagine having her taken away from you because you tried. Imagine knowing you might never see her again. Imagine her knowing she might never again see you. All because you wanted something better.

When we can’t picture ourselves in positions of vulnerability, we get in real trouble. None of us are so big and powerful that we couldn’t be reduced to helpless in a few seconds flat for whatever reason. When we are removed from the emotions and complexities of an issue, we accept terms like “zero-tolerance,” as normal. Zero tolerance? Where is the compassion in a policy like that? When we let our politics get in the way of people, no matter where they were born, we lose. When we don’t think ahead and consider cause and effect, we lose. When we are removed from each other, in whatever way, we lose.

Happy Monday, Y’all.




My grandmother would say, “If you don’t have anything nice to say, then don’t say anything at all.”

But you know, it has now gone to a new level.

Just yesterday, upon posting what I consider to be one of the sweetest photographs of all time of John Henry and Hayes in honor of Father’s Day and in honor of him and the hard work that he does right beside me every day that he can, some dimwit had the gall to ask “where’s Steve?”

I’m not going to be afraid to name names here. You would all know who I’m talking about anyway.

You can imagine all of the responses I came up with and I had them right on the tips of my fingers. I decided to take my grandmother’s advice and just delete the comment and block the unfortunate who made it.

Here’s the thing: Come up with your own little stories about people all you want. Sit behind your computers and judge when you don’t have even a thimble full of correct information about said people and said situation, and fire off your little remarks if it makes you feel powerful and like you got a shot in for what ever reason you think you need to get one in. But please know that you are only creating negativity where, most of the time, no more is needed. Maybe that’s the desired effect. That’s sad.

Why can’t people let others be happy? Why throw words around as if they are harmless? Have we not learned better in this age?

If a woman wants to post a photo of herself in a bikini or other outfit that celebrates her body, let her do it without disapproval. Even if you do disapprove, what do you think you’re achieving besides making her feel like crap if you say so? Why is it so important to tear something or someone down?

Why do I need to be made to feel something than utter gratitude that my son has love in his life and I have love in mine?

I’m sure there are many reasons, but I can’t think of one good one.

Go with love, go in love.

Happy Monday, Y’all.




“Is that normal?”

“Yes,” I replied, after taking a bit longer than a second to consider my answer.

I had tapped him on the shoulder after he sat down in front of us and explained that I couldn’t promise my son wouldn’t kick his seat, that I would do all I could to prevent it, but that my attempts to thwart the movements of exuberant 8-year-old legs stuck between airplane seats and controlled by a mind without an excess of impulse control were not always successful.

His was a funny response, I thought.

“Is that normal?”

It got me thinking about how much room there is around that word.

What’s normal for me isn’t what is normal for you. We are all normal. And we have little to no idea how each of us struggles to stay within range of what our utmost capacity to be that is.

It’s quite normal for me for my son to kick the seat in front of him because I’m used to it. I’m also used to being on high alert about it, to watching his every movement, gesture, and facial expression so that I can try to predict what may be coming next. Most parents think a step or two ahead to try to avert disaster. I try to think five or six steps ahead. That’s my normal. My contingencies have contingencies and my backups have backups. But sometimes, none of it works, or I drop the ball and don’t think of something, I don’t remember an item in my arsenal of objects designed to ward off boredom or hunger or God knows what I’m not even seeing and hearing, and a meltdown occurs. Sometimes, I just flatout fail as a parent. Sometimes I fail as a human. We all do. And that’s normal.

My sweet and wise therapist friend says, “If someone can do good, they will.” I think she is so right about that. No one really wants to do less than they can. But we don’t always know what is possible just by looking at another. I don’t know what the man in the seat in front of John Henry is going through or what his experiences are that would make him respond in such a, for me, less than sensitive way. I am not walking around in his shoes, so when I really wanted to go off, for a second, about how insensitive he had been to us, I just ignored it and moved on. I tended to the more important matters and silently noted, when I looked out the window, that it was a gorgeous morning and that I was living in a perfect moment. Sometimes what is normal is absolutely extraordinary.

We all have our things. Find someone who you think is perfectly adjusted and you’d probably be surprised to find out that they save the lint from their navels in little plastic bags and store them in the freezer. I don’t know where that just came from and now you know how abnormal I am for having even thought that thought, much less admit to you that I had it. But really. You might be horrified to find out what their habits are when they aren’t being watched, or when they’re triggered, or when they’re tired, scared, or even just hungry. There is no normal template. If autism has taught me anything for sure, and I’d known plenty of outliers long before I realized it had ever touched my life, it’s that we’re all flying like bats out of hell around the ever expanding and contracting edges of what is supposed to be acceptable — sometimes we’re closer to it than other times, but no one hits the center. Ever.


Happy Monday, Y’all.





I read most of Steven Pressfield’sthe War of Art,” over the weekend. I’m enjoying it if only, at this point, because I tend to be a sucker for punishment from time to time. It’s well written and full of good advice on avoiding procrastination (everywhere I look these days there are articles and helpful hints on how to get motivated and avoid the internet, television, couch, or whatever vice pulls you away from your work), but each page has begun to feel like a hammer on my thumb. It’s getting repetitive and I want to scream, “Okay! I get it.”

And that’s the genius of it. It has to hammer. Hammers are the only things that will properly drive a nail.

Quit resisting, it says.

Quit resisting, quit resisting, quit resisting.

Do the work, do the work, do the work.

When my alarm sounded at 5AM today, I fought with myself about getting up to exercise for an hour. “I can do it later in the day,” I thought. “Do I really need to be doing this at all,” I thought. “I’m getting old, I should rest more,” I thought.

“Quit resisting,” I thought.

I then dragged myself out of bed and put on the gear that I dutifully laid out last night, stumbled to the kitchen, made my double espresso, somehow got my contacts into my pissed off eyes (who can work out with glasses sliding down her nose? Not I), and got to it. I quit resisting. I don’t know if I would’ve had those words not been swirling around my brain.

Everyone should probably take a look at this book. Any creative person, or anyone who doesn’t have to deliver things on a deadline most of the time, or anyone who mistakenly thinks that the creative work can come after all of the other things are done, should probably read it thoroughly. Pressfield has an interesting take on what makes an amateur and what makes a pro. I don’t know about y’all, but I want to be the latter, regardless of how hard I have to fight through my own resistance to get there. It’s actually so much easier to get the work done when you stop negotiating with yourself about how not to do it, then give in, and take the first step, write the first word, play the first chord, make that call, set up that meeting, and take it seriously.

Tick tock.

Happy Monday, Y’all.




I spotted the building that we’re lucky enough to live in right around the time John Henry enrolled at his current school in NYC. It is pretty, has amenities we need like double sets of doors and plenty of security to keep him safe should he get away from me, and is a three-block walk from his school. That fact alone sounded like living in the lap of luxury and it wasn’t lost on me for one second. To have practically no commute? It took us forty minutes to get to school in the mornings at the time. I imagined how much of the day I would get back and also how much easier it would be on John Henry to walk instead of ride on the subway if we lived closer. I was also especially excited about the rumor I’d heard that it had a swimming pool in the basement. Swimming pools aren’t plentiful in New York City, and water and swimming are two of my son’s favorite things in life. If he so much as sees a photo of a swimming pool or a beach, he stops and gives it a long stare.

As things go around here, I was riding in a cab with a friend from an event to an after party when I mentioned that the lease on my current apartment was about to expire and that I was thinking of moving downtown. She asked me where I wanted to live and when I told her she said, “I know the owner, I’ll call him tomorrow.” I was not surprised to hear that she did, this particular (and very kind) friend seems to know everyone in New York City, but I was surprised at my good fortune. It all seemed meant to be. John Henry and I moved into the building and a much bigger apartment with real closets and pretty brass (read: old) doorknobs the following March.

I immediately inquired about our swimming pool privileges. I was told that traditionally, everyone that lived in the building could use the pool but a recent vote by those who owned their apartments had revoked renters’ access. I explained how much my little boy loved water, that swimming was therapeutic for him, and that we would pay extra, of course (I’d cut down my grocery budget if I had to), if there was any way we could have special consideration. Nope.

We stayed anyway. I’ve threatened to move to a less expensive place many times because this one is near impossible to afford, but then I think of the commute we’d have, again, and what that would mean for our quality of life. I’d like to get out of the city permanently but am not able to go — that’s a different story. We like our building. The doormen know us, they are kind to John Henry, and they know that if they ever see him without me or another adult, then something is afoot and I’m possibly mortally wounded upstairs. And lo and behold, in March of this year, management decided to let a limited number of lowly renters pay for access to the swimming pool.

When I got the news, I called immediately to get my name on the list (I was out of town) and decided to try to swing the monthly fee. A few weeks later, I signed us up on John Henry’s birthday. I’ve known for a while now that there has never been a happier boy than JHE neck deep in water and he proved it again that afternoon after school.

The neighbors, however, are not as happy as he is that he is in their pool. John Henry vocalizes a lot, and when he’s excited he can be loud and the noise is almost constant. Imagine weird 8-year-old noises beating around the corners of an indoor, tiled pool that’s built for swimming laps. The room also has lots of windows and high ceilings. It can be cacophonous. If you’re not used to it, it would be disconcerting. I’ve always worked with John Henry on keeping his noise level at a minimum, but bless his heart, it’s really hard for him to stay quiet in some situations, and when he’s doing something he loves is one of those situations. However, I persevere. As I’m with him in the pool, I remind him about every two minutes or so to use his quiet voice, to “shhhh…..,” to make no big splashes. It would be hard for any 8-year-old to contain excitement. It’s damned near undoable for him. But I can tell he’s working on it too. He listens to me when I tell him before I let him jump in to “remember to use your inside, quiet voice and no big splashes, okay?” It isn’t good enough for some people, though. They’re just disturbed by us. They stare us down, give us funny looks and roll their eyes, or just get out of the pool and leave. We’ve even been shouted at by one grumpy old dude who was leaving but apparently couldn’t stop himself from turning around at the door and hollering, “I’m leaving because of the noise! I’m leaving because of the noise!” I thought to myself, “well, go then you old asshole, if you don’t care enough to talk to me about what’s going on.” It broke my heart and I wish he’d given me an opportunity to explain, but it broke my heart for John Henry mostly, because he stopped and looked at the old buzzard and I know he heard and quite possibly understood him.

We keep working on it anyway. And John Henry keeps getting better.

We went for a swim on Saturday, and though some days there aren’t many people there, it was quite full that afternoon. John Henry was making some noises, but he’s gotten so much quieter in the past weeks. He even has calm moments when he just floats on his back and looks up at the ceiling. That I think he’s sort of quiet might surprise someone who hasn’t heard him before, but I can detect even the slightest changes — I’m with him every day and am particularly nervous about this thing, of course. It’s nerve-racking even to me and I’m used to it. I’m not so stuck in our world that I don’t realize we must disturb others and I feel sorry and concerned for those who are bothered and can’t handle our presence, but I’m most concerned about my child and figure the adults can adapt while he figures out how he can adapt himself. I know the sensory regulation that water provides him is doing him so much good that any worry about any disturbance I have matters little. I get through it and get him what he needs. But I, of course, braced myself when a man who had been swimming approached the side of the pool to say something to me as he was headed for the door.

“He seems to be enjoying the water a whole lot.”

“Yes, he loves it just about more than anything.”

“Well, we all express ourselves in different ways, don’t we.”

I smiled and laughed with relief and told him “Yes, we do. He’s working on his noise level and he’s getting a lot better at staying quiet.”

“He’s just fine. He’s beautiful.”

I wanted to cry. I almost did.

As he was leaving, he looked down at John Henry and mimicked the quiet little noises he was making. It just about did me in. I don’t know if this kind man knew that’s one of the therapy techniques they teach in certain disciplines or if he just knew by instinct that that might be a way to connect with him, but that he did it just astounded me. I had a grinch moment. That’s what I call it when my heart expands to a new size.

When it seems like the world is just insane and there is hardly any good to be found, remember that it might very well be insane, but that sometimes things make some kind of sense. There are angels everywhere. Sometimes we have to look for them, but sometimes we don’t.

Happy Monday Y’all.



It’s so simple. It’s so complicated.


It’s simple because the impetus to care for another comes quite easily to most of us, if not through instinct then through conditioning. We’re told, from almost the time we’re born, that it is virtuous to attend to the needy, that we’re supposed to respond almost without thinking to those who can’t care for themselves. There are baby dolls that cry tears and wet their diapers that are given to us so we can practice. And that’s supposed to be play.


It’s complicated because there is nothing playful about taking care of another human’s needs. In fact, in my experience there is nothing so anxiety producing as new motherhood, or really any stage of motherhood. I think we start to relax a little bit at some stage only because we’re just too tired to worry quite so much as we once did. And yes, of course our children develop and progress and (with any hope) learn to care for themselves, but they are Always. Our. Responsibility. So the anxiety never really goes away.


I’ve observed motherhood from many angles: I watched my own mother struggle to provide for my sister and me — not only with the material things that she worked hard to get for us, but also to provide the safety she knew we needed, to provide a template for living that would be good for us, to be available to us despite having to navigate the ups and downs of living with a jealous and abusive husband, to even always tuck us in at night and without fail always show us and tell us she loved us. She didn’t get a chance to complete the job she battled mightily some days to do but if I can be sure about anything I’m not sure about, it’s that she left the world fighting for us.


I watched her mother be an almost perfect version of a quiet, contented, domestic titan who could pinch a penny until President Lincoln screamed uncle and reportedly once jumped into and stopped a moving car full of children that some other harried woman had absentmindedly left in gear. It was drifting into traffic and she saved the day, and most likely those babies’ lives.


I watched my aunt almost seamlessly take me into her home and treat me as close to her own child as I would allow when I was an emotional bloody pulp of an orphaned teenager.


I watched my very first boss, a fiercely talented and independent Ph.D. psychologist (who is still practicing now at age 87) and mother of five, impart more valuable life lessons to me than I am probably even aware of and trust me to do a job I probably shouldn’t have been trusted with at 18 (managing her office and most aspects of her life), shape and help me hone my character and code.


I have observed more angles through knowing more women than I can name here. They have all been and continue to be angels in my life. They were and are not perfect, but were and are giants, though they were never deserving of being reduced to vessels or providers. Each mothered and mothers differently. They were human, despite having given birth, are were and are not to be solely revered or reviled because of how they conducted that one aspect of their lives. Some of us ease into it and make it look like the most natural and happy thing in the world, and some of us go kicking and screaming, feeling assaulted by the little being who threatens to take us over and rob us of our choices and freedom. A lot of us fall somewhere in between, vacillating in the middle of the spectrum of emotions that comes with sudden, forced maturity and supposed reduced options.


The 10-year period after a woman has a child is often referred to as the ghost years. If a woman is an artist, her output is expected to decrease if not in quantity then surely quality as she tends to her charge or charges, putting them first every day of her life, and putting herself and her work mostly last. But how many of us have dispelled the notion that we no longer have anything valid to say after giving birth and kept creating, doggedly searching for new depth and new avenues to express ourselves, often finding that yes, we have changed in some ways, but that we haven’t developed one giant brain cell that functions and exists only to feed and care for our families? In many ways we become even smarter, more capable, more efficient, and much hungrier for our own, separate identities because yes, our autonomous selves sometimes in fact do become in danger of being eaten up by time sucking domestic duties. Our identities do change after we have children, how could they not? But I argue that they almost always become richer, more rounded, and more empathetic. Not to say that doesn’t happen for women who don’t procreate for other reasons, but I’m not covering that here except to say that motherhood isn’t nor should it be for everyone and everyone is entitled to that choice under any circumstance. Period.


We intellectually know this, every one of us. So I wonder why we so often think primitively when anything emotional is introduced into a discussion about mothering? We’ve been raising the question of why we’re reduced to what does or doesn’t come from our wombs for a long time. There’s no reason for me to go through the list of all of those things here. I’ll just say that there is more than one way to go about the job. And all of the women who taught me how to do it taught me that. It is hard. It is rewarding. It is full of joy and sorrow and sweet smiles and heavy tears. It is simple. It is complicated. It is, above all else, the cause for expansion in a million different directions. And finally, it is to be done as originally and individually as the unique spirits that live within each of us. There’s just no way around that. I could go on, but my hour is up, and my list of things to do, domestic and artistic, grows.


Hail to the mothers.


Happy Monday, Y’all.






























This photo has inspired me for a while now. I don’t remember where I saw it but when I ran across what is pretty much my ideal wardrobe/closet I snapped a screen shot and put it in a folder called “style” in my iPad because I am a nerd + I need all kinds of reminders not to complicate life. When I did my spring/summer/switch out the warm stuff for the cool stuff and closet clean out over the weekend, I was surprised at how little time it took. It used to be an all day process to go through everything, decide what to toss and what to keep, and what to tuck away in a storage box under the bed for a special occasion or some supposed fancy dress party that I never received an invitation to. Ugh. Who has the time or the energy? Not I, not anymore. These days, things are looking more and more like that photo. I have a uniform that works, and I like to stick to it. Maybe I’m getting older and am less interested in following trends or trying to keep up with fashion, but I suspect it has to do with finally learning what works and requiring simplicity in my life. I have enough complications — I certainly don’t need any transpiring in my closet.

What works? White shirts, denim, a black trouser be it drapey or leather, my old faithful military pantswell-cut blazers and tees, cashmere sweaters, scarves and ponchos to wrap up in, hats, and a few coats to tie it all together. And, of course, my weakness, a good shoe. Throw in my beloved Alabama Chanin pieces and I’m done.

I don’t necessarily think this post is about my clothes. I think it’s about my evolution from a person who had trouble, for awhile, sticking to the things that she knew worked to one who has finally figured out that putting on a perfect white button-up and a pair of well-fitting jeans is like knowing that running a Les Paul Jr. through a DynaComp and Pro Junior provides sweetness + maximum whomp = no muss no fuss.  It’s classic and always gets the job done better than pretty much any other formula, just like anything when it gets right down to it.

And that’s my thought for the day. To quote James Brown, “It might sound corny but it’s heavy.” For a lover of fashion like me, it certainly is.

Happy Monday, Y’all.


PS – I still have my sartorial fantasies, but I’m no longer hoarding twenty-five caftans and maybe a turban or two in hopes that I’ll be channeling Talitha Getty on a Moroccan rooftop on my next vacation. Now, I only have four or five 🙂 Ta.

Also, thank you Linda V Wright for reminding on me on Instagram how much I do love my white shirts yesterday. And for inspiring me to possibly start monogramming them. Ha!



If my day allows, I like to take a minute to read something that isn’t news, that isn’t a novel, that isn’t the latest non-fiction piece I’m digging into. Call it a devotional or meditation time, but I like to tuck away in the little nook (it’s sort of a closet with no doors) in my apartment that I call The Harmony Room at least once a day to do some thinking, and then some writing about what comes up.

I have all sorts of books in there — lots of philosophy from the likes of Bertrand Russell, some religion — mostly Buddhism (Pema Chodron, Sharon Salzberg) but also Thomas Merton, self-help kinds of things that I either plow through quickly or read one chapter of and put down with a shake of my head plus a mental note to throw in the trash as soon as I can remember to, creative workbooks that are good distractions — y’all know I can’t resist an interesting looking book. But my current Harmony Room favorite is The Wisdom of Sundays,” by Oprah.

Now, I love Oprah. Who doesn’t? And the thing I love most about her is that she tries. She just tries, plain and simple. She tries to make the world better, she tries to pass on good knowledge, she tries to elevate everything she touches. Nowhere is that more plain than in this book she put together from her Super Soul Sunday show. Each page or two holds a snippet of a conversation she had with someone, and I find them not only relatable but inspiring and most of all, thought provoking. This morning’s reading was about pursuit.

The definition of pursuit according to the OED: the action of pursuing.

The definition of pursue according to the OED: follow in order to catch or attack. seek to attain (a goal). proceed along (a path or route). follow or continue with (a course of action). continue to investigate or discuss.

Of what am I in pursuit?

I thought it was a really good question to ask myself. I’m still thinking about it. I don’t know if there’s a simple answer. And maybe, no, not maybe, I’m actually quite sure of this — the value of the question is not in finding the answer. The value of the question is the question itself.

Happy Monday, Y’all.





Studio: The place for the study of an art.

If it hasn’t been scientifically proven that time goes by at twice the normal speed when one is in the studio, then that comes as a surprise to me. It makes no sense that such a thing would be true, but making art often makes no sense. When one is chasing something, the most narrow part of the hourglass is widened somehow — maybe it is required because each grain of sand expands, having come alive with the infusion of electricity that accompanies the recognition of a possibly proper path.




I get the word of the day email from dictionary.com. Today’s word was ken, which, turns out, is more than just the name of Barbie’s boyfriend. It’s also a word for knowledge, perception, or cognizance, the range of sight or vision.

It made me think of kin. Kinfolks. Familiarity.

Most of us walk around everyday only having ken of our own very specific worlds — our own needs, wants, and hopes, an understanding of our own individual experience — and hardly ever consider what another’s ken is in a meaningful way. I am guilty.

Why don’t you understand me?

Why are you so confusing?

Why are you making that noise or doing that thing that annoys me so?

It is autism awareness/acceptance month. I could and do write volumes about autism and my experience with it through my son, and am simultaneously rendered illiterate and mute by it. It is a powerful, wild thing. My ken of it is only what I am able to reach through watching John Henry and those he attends school with. He is now 8-years-old and we are over 6 years into his journey as a person with autism and there’s something new to learn about it and him every day. He grows, he changes, and so does his autism. And guess what? So do I. So does everyone. So does the world. He and his disorder is a moving target. I and my countless ones, as well as everyone else’s, are as well.

My son sometimes presents at his most autistic on airplanes. And we’re on airplanes a lot. We’ve been on 5 of them since Friday afternoon. Maybe it’s the frequency of the noises, the lack of oxygen, the crappy air, the cabin pressure — I don’t know — but I think his body tells him what it’s going through isn’t at all natural, because he has a tremendous amount of trouble sitting still, keeping his limbs from moving, not verbalizing almost constantly, and stimming with his hands and fingers. He rocks back and forth, slams his back against the seat, kicks or hits the seat in front of him, sings melodies, makes loud, seemingly non-sensical noises… He does a lot of things that are, I’m sure, annoying, maddening, and confusing to other passengers. I do my best to calm and quiet him. So does H., if he is with us. John Henry sometimes pulls my hair and won’t let go, so I try to remember to wear it up so it’s harder for him to get to. I’ve been bitten and had water thrown on me. I’ve changed more ungodly messy pullups in tiny airplane restrooms than you care to know about (I’ll spare you the details about both of us fitting in to those tiny spaces). I’ve told countless flight attendants what they were in for when we got on the plane in hopes that they might lend a hand if I needed it. They usually have. I resort to gummy bear therapy now and then, doling out one sugary bear at the time so he is distracted but paying attention to our supply and focused on making the sign for “eat” which I require him to make to receive the bear, figuring I’ll pay for it later and I usually do in one form or another. Hardly anyone ever says anything to us about it all except for the odd person who loses her patience and complains about the kicking to which I sympathetically apologize and try to explain away without embarrassing my son. Most people try not to look at us at all, and I try to ignore them too, staying focused on him and trying to keep a complete disaster from occurring, sometimes with embarrassing tears running down my face. I am terrified by what I don’t know about what makes him behave in such a way. Is he in pain and awful distress? He can’t tell me in any way than through how he acts, so I deduct that something is wrong, but what choice do I have but to take him with me if I have to go somewhere? What choice do I have but to have the life I have? I have changed so much… agh, the wormhole. From time to time, someone will stop me/us after we’ve gotten off the plane to tell me I’m doing a good job or about what a sweet spirit they think John Henry has, but mostly, we are utterly alone. We are on our own autism island. It’s lonely, it’s hard, it’s scary, and it’s long.

And sometimes, John Henry is heaven sent, a perfect angel that sits quietly with his headphones on and watches a movie and holds my hand.

None of us are reducible to a pile of traits.

We are all something to understand, we are all puzzles. But having no keys with which to decode someone’s behavior or actions, our ken of each other is far weaker than it seems it could be, and far weaker than it seems we should have the grace to try to reach for. Autism awareness/acceptance isn’t about understanding a list of attributes, oddities, or symptoms, it is, at the end of the day, about just what the words say — having acceptance of each other, showing kindness to each other, and having cognizance and openness toward each other and our idiosyncrasies, things we ought to be extending every month to every person, not just to the ones we’re told to light it up blue for in April of every year. Yes, some of us need a little more understanding, kindness, and openness than others, but are we not all different in some way? Bearing a bit of discomfort sometimes, extending something as simple as a smile or just not looking away and pretending others are invisible and remembering that someone else might have far greater unease than we do helps us reach beyond what we can make sense of and expands our ken. I dare say it expands our kin.


Happy Monday, y’all.