“Do you understand, Mademoiselle, that if I have asked for nothing, it is not because I have not needed it? Do you understand, too, that if I have always given, it is precisely because I was so in need myself?”
Jean Giono, Joy of Man’s Desiring
(Don’t ask me what’s going on with that picture.)
Truer words were never spoken Jonah Caedmon. I am the best me because you love me. Your loving me has changed me for the better in more ways than I know to say. Thank you.
In other news: John returns Wednesday.
In other other news: I lost Gabriel today. I mean, lost him to the extent of needing to call the police. He wasn’t really lost, just hiding out in the car and not answering my repeated, increasingly frantic cries. A neighbor finally found him while I was checking inside One More Time. She saw his head pop up in the back window.
He was sad all morning missing his daddy. And cold (I had just started mowing the side yard). And once he got in the car he couldn’t get out because of the backseat child locks (he doesn’t know to climb in the front seat and use those doors).
But he is fine. I have not emotionally recovered yet, but I sobbed on the shoulders of two lovely and kind women I hardly/don’t know at all, and I will recover too. On we go. Me and my boys, which aren’t mine at all but because I am so grateful to have them with me as sound as they can be, I’ll say it’s so.
It is after 10 a.m. I have walked Jonah to school and back again. I am curled up on the playroom couch, wrapped around my laptop (grateful for my workhorse of a MacBook Pro, dreading the day it reaches the end of it’s proverbial line). I am still wearing my sunglasses. I hear the porch screen door swing open with a creak and a bang. So much for Pooh keeping G busy. He is (literally) throwing his Tonka dump truck, roller, and front loader into the prodigious hole he has dug in the herb garden where the basil grew two years ago. How did we go all of last summer without basil? I am certain that hole has made the haven below our deck accessible to all sorts of creatures I’d rather not think about inhabiting the haven below our deck. Namely skunks.
Now that the scene is set. I told myself yesterday Not to overdo it. I had the best intentions. I knew that a full, manual day’s work following a Pascha night of three hours sleep would likely do me in. I just don’t take my body’s limits seriously. Mentally, I make a note. Physically I push through like the mule I am. G and I ran errands in Akron until one. I then mowed and weed whacked all three yards, working past six.
G is now naked from the waist down, all his bits swingin’ in the breeze, tossing dirt over his shoulder with his little green shovel. Damn. The dogs got out. I am still ensconced on the couch. Maybe Lucy jumping the wall will move me to action.
I am doing my best to embrace this state of stubborn refusal to do anything that is not of the most urgent need. I am enjoying watching my wild creatures wander the yard, exploring in relative freedom. Sophie tips her nose to the sky to catch a whiff of something in the wind. G dashes back inside to poop. Slams the door and shouts “Privacy!” when he hears me in the next room. I don’t see Lucy. Time to move.
[Postscript: It's the next morning. I'm occupying the same place on the couch, exhaustion having progressed into a full blown head cold. I did decently well not doing much yesterday until Jonah got home. That hole G dug in the garden is now filled with giant rocks John got for a steal on Craigslist last summer. And yes, I carried every one but one myself. John leaves for Italy today. Here's to the hope of quiet-ish, healing days ahead.]
After a characteristically intense Holy Week (Eastern Orthodox Easter is today—Christ is Risen!) and a late night/early morning long Paschal service (it was nearly 4 am by the time Jonah and I went to bed), I am happily, if somewhat foggily, enjoying a very Bright Day of rest.
I’m rather basking in the day. My impressions of the week, and particularly last night, fade in and out like satellites. When I try to focus on one in particular, it goes fuzzy and disappears. But there, I catch it again on the periphery. By suppressing my focus it reappears. One is material, another just a sense. Something that was leading me somewhere. If I am still, maybe I will be able to catch on again and follow.
Jonah’s head on my lap, my hand shielding his eyes so that he could fall asleep as the priest shouted “Xristos voskres!” and the people around us shouted back, “Voistinu voskres!”
The woman’s hair catching on fire while we stood outside, inching forward toward the open doors of the Church. Her son’s large hands smothering the flame. The distinct smell of hair on fire. The strangeness of hardly anyone noticing.
The bells. Jonah clamping his hands over his ears, pressing hard. Excited, over-stimulated, and asleep on his feet.
Sophie and Lucy having simultaneous chasing dreams, their erratic breathing and dream barks, all eight paws sleep running.
“We bow the necks of our souls…” from the Bridegroom Service.
Meeting the woman we often stand next to for the first time at Pascha. J was asleep, there was no G, so it was finally possible. Her name is Debbie. She lives in Fairlawn. She’s gone to St. Nicholas her entire life.
Hearing Jonah say “Indeed He Is Risen.”
Jonah’s utter amazement at the midnight service. “You mean, these people do this Every year? It’s crazy! They walk around the building in the dark! I’m shivering all over.”
The abdominal cramps that started at the very first of the 12 Gospel readings at the Thursday night service. If you’ve never been to this service, well, they call it the 12 Gospels for a reason. Every ounce of Gospel scripture dealing with the crucifixion and resurrection as well as the Sermon on the Mount are chanted, interspersed with many hymns and prayers. I almost fainted. I broke out in a complete body sweat. I stumbled to the cry room to recover and made it back in by about the 5th gospel. I was asked: “Are you having a heart attack?” and “Are you pregnant?” I’m not sure which terrified me more.
Seeing just one set of lights pass me on a six lane highway on our way back from the Pascha service at about 3 :15 a.m. The world at 3 a.m. feels like an entirely different place, eerily so. I thought about what it would have been like to travel through the area where I live in the dead of night with no streets, no streetlights, no cars, no civilization as we have come to know it. How people must have longed for any sighting of human life. A home lit up from the inside. Other bodies. Technology seems like a warm thing: the lights, the heat, the possibilities of communication and commerce and resources. But as we like to say around the Estes homestead (talking about you G), it’s a tool. Not a replacement. Not that any of us would consciously think of it so, but I certainly think we act as if it were, without thinking. No doubt it’s easier to live with your phone than the person in your bed.
Waking up humming a version of the “Christ is risen from the dead / trampling down death by death / and upon those in the tombs bestowing life.” Hearing Jonah hum it unconsciously.
Stopping at Dunkin’ Donuts at 3 a.m. to get Jonah a classic glazed. I don’t think they see a lot of 7 year olds at 3 a.m.
The wonder that my priest asked, “No Gabriel?” How many times has G interrupted his homily? And I’m not even counting the fire alarm incident.
That Holy Week was the week that G finally got his shit together. Literally. Thank you Gabriel Keats for finding your way around that fear-of-pooping-in-the-toilet-thing. And no, mama is not going to continue to give you a lollipop every time you do.
Finding a way to live with Gabriel Keats is not unlike the business philosophy adhered to by the associates of Sterling Cooper Draper Pryce: make him think it’s his idea. He will not be bulldozed. He is the bulldozer.
And like those wily Mad Men, you must use your cunning to ensure that those “great” ideas of his are also the best ideas. There is your reputation to consider, and, in the case of the human being you are attempting to “train up in the way he should go”—a passionate, independent, smart-as-a-whip little imp who could just as likely end up in juvie as the White House (Are the two really that different? Sorry. Been watching too much Scandal.)
Between toliet and church training, my endurance has been tested. We crossed a major hurdle this week regarding the former. He no longer rolls around on the playroom floor, clearly in pain, trying to hold in his BM and chanting “hummy hummy hummy,” the shrillness of his tone increasing as the pressure to relieve himself bears down. In this response to his body’s obvious need to function as it was made to function you get a sense of how far he’s willing to go in order to do what he wants when he wants to do it. When he realized he could shut the door to the bathroom, shouting “Privacy!” as the door slammed, things started to turn around.
As for the latter (church training—by which I mean at least a semblance of respect and rule following), there’s definitely room for improvement. He manages to walk/trot up to the icons at the front of the church for veneration, but it’s a full-on sprint down the side aisle to the back. I have some sympathy for his compulsion to run in church; looked at a certain way, all those aisles and rows are like a race track or obstacle course. He certainly would have at it if I let him.
He is still almost completely incapable of speaking in a quiet voice, unless we are playing the secret game, and that only lasts about 30 seconds. In the midst of Fr. Nicholas’ homily last Sunday, G became enamored again of the giant stain glass window/icon of John the Baptist, complete with his head on a platter in the bottom left corner.
“Where the rest of his body?” he clamored.
His body is gone, I answered. See his wings? He turned into an angel (a simplistic explanation, but all I could come up with at the time).
“Where the blood?” he loudly continued.
And here Jonah joined the conversation: ”Yeah, why isn’t the blood gushing?”
Somehow I managed to shut the inquiry down here. Jonah is very good at heeding my “let’s talk about this another time” directive, and Gabriel had grown tired of the topic and had started chanting again, “I don’t want to be at church. I want to go home.”
We don’t take our kids out much. As in we’ve gone as a family out to supper maybe twice since we moved to Canton. Just stating a fact. So when we decided to let G attend J’s spring school musical (Stone Soup), we knew it’d be tough. But it was in a church, and G and I have been practicing on that front. It went about as we expected (much chasing and shushing, one ultimatum involving leaving without cookies or being able to reenter the sanctuary) with a very rough patch at the end. He kept nabbing cookies off the refreshment table after John had said enough several times. Rather than return the cookie or simply split it with his father, G threw it to the ground and went into full-blown hysterics. It took almost an hour to pull him back from the edge.
But 2-year-olds [I adamantly interject 3-year-olds here too] are also going through a hellish personal crisis: They have just learned how to walk and use tools, so they really want to explore the world; at the same time, they are terrified of what that world contains and constantly fearful that their parents, whom they love and trust to a terrifying degree, will suddenly abandon them. Oh, and those same parents? They’re suddenly barking “no” all the time, seemingly just for fun. What the hell?
It’s no coincidence that kids start having tantrums around the time that parents start enforcing rules. When you say no, sweetie, you can’t have that butcher knife, your 20-month-old has no idea that you are depriving her of this awesomely shiny contraption for her own safety. “Since it’s the parent, whom they rely on for everything, who is taking it away, it’s perceived as a withdrawal of love, essentially,” says Alicia Lieberman, a professor of Infant Mental Health at the University of California-San Francisco and author of The Emotional Life of the Toddler. “They don’t know your reasoning. They just know that something they were getting great pleasure from, all of a sudden, you are taking away.” The pain that this causes, Lieberman says, is similar to what we might feel if our spouse betrays or cheats on us.
The article also talks about under stimulation. I’ve had the same thought, minus the caveman analogy.
If it sounds like I’m characterizing your beautiful, special, way-above-average toddler as animal-like, that’s because I am. Pediatrician Harvey Karp calls toddlers “little cavemen”…“It takes years to socialize our little toddlers, so it’s important for parents to cut themselves some slack. Don’t feel you’re a terrible parent because they smeared jam all over the walls”…
The caveman analogy helps to explain yet another issue plaguing toddlers, Karp says: They are very understimulated. Little cavemen (and here I’m talking about the real ones) spent their days very differently than kids do today. “It was a sensory-rich environment: smells, the fresh air, shadows, birds, grass under your feet. Today, we put our little kids in houses and apartments with flat floors, flat walls, ceilings, and not too many chickens, and we think that’s normal,” Karp explains. “It is hard to spend all day with a 2-year-old, and they don’t really want to spend all day with you anyway.”
Which is yet another reason to rejoice at the coming of spring. G’s out before breakfast, then back in, then back out. He can’t wait to play with Jonah outside after school. He wants to go on trips. He’s also resumed his jailbreak ways. I warned our babysitter last night that he’d been professing the need to “go for a walk by myself.” But as I’ve mentioned before, he can be a sly and fast little stinker. By the time she realized he was gone (it was bedtime, she was reading to J), he had already headed out the back door. When asked where he was going, G matter-of-factly replied, “Traveling.”
Let’s talk about autism for a bit.
Last month was Autism Awareness Month. That’s what the neurotypicals (that is, people without autism) have named it. But within the autism community itself (that is, the autists and the people who love them and want to accept them on their terms, not the terms that neurotypicals have laid out for them), it’s called, wait for it…
Why April, I don’t know. Because it begins with the letter “A”? Seems as good a reason as any. Though I do love that National Poetry Month has also been assigned to April. Two great tastes that taste great together! And I’m sure I don’t need to point out to you that the words autist and artist share, among others things, an uncanny likeness.
So while I haven’t written about autism for awhile, I’ve been doing a bit of reading. Mostly blogs. An article by Temple Grandin on Slate. Just a little over two years ago when I was getting myself acquainted with the autism community online, hungry for information and support and shared experience, it was mostly peopled by parents (mostly moms) and “experts”. Or maybe that’s what I was looking for so that’s what I found. It’s what I needed.
Today, the voices of autistics themselves are much easier to find. And most of what I read in April came from them. And what they have to say is so vital—for me, for Jonah, for anyone who loves an autistic person—who, let’s be clear, is simply a human being (as if being human was ever simple).
The thing that really threw John and I when people started suggesting (around the age of 2) that Jonah might be autistic, the thing we just flat-out denied, was the diagnostic criteria about autistics lacking empathy. Jonah didn’t. What I mean is, Jonah is one of the most empathetic people I know (or he can be). Even the times when he goes stone faced or ignores the pain of others, even then he is experiencing something very intense. Sometimes we recognize this. Sometimes we don’t. There are times when Jonah seems completely indifferent to Gabriel’s pain especially. But when G gets hurt, he shrieks and rolls and cries. It’s enough to overwhelm anyone, and especially Jonah, who I am convinced feels things so intensely it sometimes causes him real mental pain.
Autistics are often accused of living in their own world. This morning I read an article written by an autistic woman that so distinctly describes what I see in Jonah.
The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by the amount and intensity of sensory information it takes in.
In addition, I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system…
I know you have made up many stories about behaviors generated by my autism neurology. It is human nature for us all to make up explanations for unusual behavior. But please, will you stop saying that I am in my own world? Besides not being true, your words create a dividing line between what you perceive to be your world and my world.
The dividing line you have created means there are all of you human beings over there on your side of the line and then there are autistics over here on the other side of that line.
I do it too. I say, “he’s in his own world.” It’s the only way I know how to describe his bizarre behavior: the crashing into walls, the manic vocal perseverations, his need to take the blame any time anyone else is in a mood other than “happy”, his inability to make choices and the meltdowns that ensue, the strange and beautiful repetitive gestures he makes with his hands when he’s excited or telling me a story.
This morning when I told him he needed to try and reign his body in a little before he got to school, he responded, “Yeah, and then they’ll say ‘What are we going to do with you?’ And then I’ll have to go up and down the stairs.” He laughed.
“Who says that to you?” I asked. “Is it Miss C? Mrs. L? Mrs. A?”
“All of them,” he replied.
I don’t like the way that sounds—”What are we going to do with you?”—but I understand the sentiment. And I know the people who work with J love him, so while words matter, that love matters more. Jonah’s job at school is to learn, and it’s hard to learn when you’re bouncing off the walls. But. What’s he getting from that bouncing? Definitely something. So they try to keep him safe, give him an activity to work things out. Running stairs. Swinging. We walk to school. We walk home.
Perseverations get a bad rap in the clinical world of autism. After a quick scan across the internet, you’ll find three “interventions” widely used: stop the behavior, teach the child (or adult) how to play or act “appropriately”, or medicate. What these options communicate: “We don’t like you the way you are. You’re kind of a freak. Let’s make you more normal. More like us.”
Granted, perseverations can get in the way of living life. You can get stuck in them. It’s not unlike my need to obsessively clean when I’m very angry. Sometimes doing something calms me down and helps me think through what’s going on instead of reacting and then reacting to my own reactions. But often, my cleaning mania just makes me madder. I spin further out of control.
Perseverate and persevere share a root: from the Latin perseverare ‘abide by strictly,’ from perseverus ‘very strict,’ from per- ‘thoroughly’ + severus ‘severe.’ The word perseverance generally conotes a positive, admirable response to difficulty. Perseverate does not. It suggests obsession. The actual definition isn’t nearly so negative: “to repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.” Isn’t that how an idea becomes a movement? How a reaction to beauty or truth becomes a poem or a sculpture or a novel?
It’s something to consider.
Temple Grandin’s is famous for the phrase “different, not less.” Throughout Temple’s life, especially as her mother struggled to find a school where Temple could learn without being separated from her peers, she (Eustacia Cutler) made it clear that her daughter was different but not less. And the truth is, maybe Temple is actually more. I think Jonah is. I didn’t come up with this construction myself. Jess over at diary of a mom said it first. And I completely agree:
Because if there’s one thing that I’ve learned over time, it’s that it’s flat out wrong to assume that because I don’t relate to the way in which my child is interacting with her world, she’s not. Not only is the assumption wrong, it’s the opposite of right. The opposite of truth. Of her truth — that she is not just different, not just ‘not less’, but sometimes, often, she is more.
Example in point: after Jonah’s spring school program a few nights ago, a woman approached Jonah and I, eyes glowing.
“I just wanted to tell you that Jonah is the reason we decided to send our son to Canton Montessori,” she began. “When I visited the classroom last spring, he came right up to me and said, ‘Hi, I’m Jonah Caedmon Estes. Can I help you with anything?’ That night I decided. So thank you.”
Jonah seemed oblivious. I prompted him to say goodbye. But there it is, that more of his.
He’s got his share of hurdles to jump, crawl under, go around and knock down. Heck, we all do. My job is to make sure, as best I can, that the more doesn’t get knocked out of him. Not that it could, but it could definitely go underground, a thing hidden and shamed. Unintentionally, I sometimes contribute to this corruption. Persevere “my Jonah” (G vernacular). It’s okay every so often to tell your mom to “shove off.”
I love trees in a not-quite irrational sort of way.
I love them in the summer, their shade a welcome respite from heat. The way the light is green when you stand beneath them.
I love them in the fall as they turn and fall, though their doing so stirs the melancholy in my, a preparation for the long winter coming.
I love them (maybe best?) in winter, their skeletal-ness. (Linda Pastan: “leaves drop away / revealing the structure / of the trees. / Good bones, / as my father would say / drawing the hair from my face…”
And I love them in spring, when they bud overnight, mysteriously, magically.
Know what I don’t love? Pollen. Tree pollen is super high here now, and it takes most of the small amount of self-control I have not to scratch my eyes out, drainage gurgling down my throat (“Like when you swallow and you can feel it,” said Jonah in the car on the way to school).
But my affection is strong, nonetheless. And here is a poem by Paul Zimmer saying how that goes for me.
A FINAL AFFECTION
I love the accomplishments of trees,
How they try to restrain great storms
And pacify the very worms that eat them.
Even their deaths seem to be considered.
I fear for trees, loving them so much.
I am nervous about each scar on bark,
Each leaf that browns. I want to
Lie in their crotches and sigh,
Whisper of sun and rains to come.
Sometimes on summer evenings I step
Out of my house to look at trees
Propping darkness up to the silence.
When I die I want to slant up
Through those trunks so slowly
I will see each rib of bark, each whorl;
Up through the canopy, the subtle veins
And lobes touching me with final affection;
Then to hover above and look down
One last time on the rich upliftings,
The circle that loves the sun and moon,
To see at last what held the darkness up.
“A Final Affection” by Paul Zimmer, from Crossing to Sunlight. © University of Georgia Press, 2007. (Not reprinted by permission. Sorry Paul. Sorry University of Georgia Press.)