from the Quaker Advices and Queries

1. Take heed, dear Friends, to the promptings of love and truth in your hearts. Trust them as the leadings of God whose Light shows us our darkness and brings us to new life.

I’ve mulled those two sentence over for a couple of days. I want to say something but am hesitant to detract in my attempt to expound. All the same, here’s my sort of midrash; the way I “Take heed.”

I often think about my heart. Like Jonah, I try to make sense of it. I want an image: pumping organ, electric muscle. But more often all I sense is a presence amorphic, inscrutable, clear as mud. (As you see, even my adjectives want to be anchored to a body of earth.)

There is a line in the liturgy…the priest sings: “Lift up your hearts,” and the people respond: “We lift them up to the Lord.” I sometimes see my heart in my hands. It is small and not strong. A little withered and dark. But it is what I have to offer and so I hold it up. What comes back to me has shape and strength. In the place of my impenetrable self are the whole bodies of people I have been given to love, who love me far better.

New life is never a solitary endeavor. The lexicons we use take us only so far. Love, God, Light—the words themselves are bodies leading us to better encounter each other. “Be kind,” an unknown source (maybe Philo of Alexandria) once said, “for everyone is fighting a great battle.” My friend E in New Mexico knows that. She called me this week. My sisters in Kansas, my mother and father do. I feel the prayers of my godmother. The presence of dear ones near and physically far from me. They are the leadings. They are light. “Take heed, dear Friends…”

Children pursue life

While few of us get out of bed in the morning in the mood for a “learning experience,” I hope that all of us get up feeling in the mood for life. Children always do so—unless they are ill or life has been made overly stressful or confusing for them…It is a little like watching a garden grow. No matter how closely we examine the garden, it is difficult to verify that anything is happening at that particular moment. But as the season progresses, we can see that much has happened, quietly and naturally. Children pursue life, and in doing so, pursue knowledge. They need adults to trust in the inevitability of this very natural process, and to offer what assistance they can.

Earl Steven, “What Is Unschooling?

wheres shawn color tree hug

An experiment means to be creative

O Glorious Sun!

J and I marveled as we walked to school yesterday morning. The sun was shining—I mean really lighting it up. Not the shadow of the sun cast from beyond or above. Not a far away dim light through grey haze. Just sun. Jonah held my hand and closed his eyes as we walked east, wanting the warmth but not quite ready for the glare.

After another weekend of boy illness (Hot dog vomit at 2 a.m., Mmmmm!), this morning’s sun is a welcome turn. In the midst of adjusting the meds I’m currently taking, and adjusting the supplements I’m taking for the side effects of those meds, my mood has tended toward the blue. Steel blue—more precisely—which I learn gets its name from the process of bluing, whereby it is protected from rust. If that’s something of what I’m undergoing, I’d be grateful because I’m doing my best to wait and hope and trust the diagnosis and prescriptions handed out by my doctor. I’m not very good at that last bit, because I don’t like feeling like a science experiment.

Jonah, on the other hand, is all about it. Science, experiments, the works. When I innocently asked on a walk home from school last week, “So what’s an experiment?” (one of those stupid questions adults ask that insult a child’s intelligence in order to get him talking), I got an earful and a revelation.

After enduring J’s irritation—“Mom! You know what an experiment is!”—he said, “An experiment means to be creative,” and launched into a vague description of something he’d done with water and dirt.

I haven’t quite grasped what that means for my current state. Chemicals are touchy. After weaning myself off the Prozac (my headaches were getting increasingly worse and more frequent, sleep patterns were terribly askew), I knew almost immediately that the middle of winter was not the best time for me to be chemically/hormonally unaided. I switched doctors (having come to the end of what my sympathetic nurse practitioner was capable of doing in this realm) but didn’t steel myself for the process I would undergo to find the best fitting chemical replacement at the best dose taken at the best time of day—best in this case meaning “most advantageous” rather than “perfect.” To be honest, I was expecting perfect. How could it be otherwise? No amount of list making—Prozac in one column, Celexa in another—can sort out the right answer. Believe me, I’ve tried.

All that to say, I’m blue. And I don’t know if it’s the winter grey or the chemical experiment my brain is undergoing or my very own conversion coating to protect whatever a soul needs protecting from when it’s in the midst of a transformation. Let’s say it’s a cocktail of all three, shaken, with a shot of the hard-to-make-out. It’s that shot that gives me hope.

I see Jonah with a jar of water. I watch him pour in a paper cup full of dirt. It takes a couple of tries to get the tracks on the jar to line up with tracks on the inside of the lid. He doesn’t get it sealed the first time. When he starts shaking, muddy waters run down the side of the jar. “O Sorry!” he exclaims. Someone helps him screw it down straighter and tighter. He starts to shake again, happy with the mud he’s making. He finally sets down the jar. Waiting is hard. He jigs around, unable to be still. I am waiting with him.

[The picture below has nothing to do with anything, except joy. Which is reason enough.]

flying leap

The way we play

The boys are stripped down to their unders and socks running the circuit of the house. Across the living room, down the two-step landing into my hallway office, sharp left through the playroom, left up the two-step landing through the kitchen, and skid left through our “dining room” (also back-entry to the house, watching station, art studio, and temporary—if three years can be called temporary—pantry-in-a-bookshelf). Across the living room again. Jonah maniacally repeats “Puppy!” over and over, to the glee and hysterical response of Gabriel. Why aren’t they freezing? I’m hunched over my desk, wearing a wool undershirt with a fleece lined canvas coat on top. My fingers aren’t numb, but they’d be icicles on the boys warm skin. They say they’re playing “Inspector Gadget Brothers”—Jonah’s idea. Later in the evening, G simply calls it the Puppy Game and takes off again.

pus

© Ross Collins

And a word about Germs (Ross Collins). It’s a kooky book the boys love. I thought it might be a little complicated for G, a little worried it might cause J some anxiety about all those germy cooties we can’t see. But they both love it. Probably because the germs (Rash, Pus, Snot, Scab and Pox) are semi-cuddly looking alien monster types. My favorite bit is Myrtle the Magnificent, the girl who never gets sick.

pox

© Ross Collins

Sometimes we have to hide it. Gabriel has assigned each of us a germ role, and he will incessantly tell anyone who will listen just exactly who we are:

“I’m Snot and Daddy is Rash and Jonah is Scab and Mama is Pus. And I’m Snot and Daddy is Rash and Jonah is Scab and Mama is Pus. And I’m Snot and Daddy is Rash and Jonah is Scab and Mama is Pus.” Lucky me; I get to be Pus. At random moments throughout the day, he will say, “I’m Snot,” and it’s true, because the kid’s nose is a faucet we haven’t been able to turn off since December.

This kind of character assignment is one of G’s favorite games (in Goodnight, Goodnight Construction Site we have been likewise designated), but it can drive J crazy. He has little tolerance for his little brother at times, especially when he interrupts while J is talking or when he repeats anything ad nauseam. J will even go so far as to cover his ears and scream if he’s overtired or hungry. It’s a tough situation to moderate. Because Gabriel can communicate, Jonah expects him to understand and follow the rules of conversation.

And so you will hear Jonah proclaim, “I need to go to my closet. Will you tuck me in?” (The first time he said this was in response to a child psychologist’s question: What’s your favorite thing to do? Must admit I was caught off guard and found myself stuttering out an explanation.) The boys’ room has two roomy cedar closets—frigid, but roomy. J’s is stocked mostly with Calvin and Hobbes collections, with a rotating selection of comics we’ve checked out from he library. He will plop down on his bean bag. I will cover him with a weighted lap pad and three blankets. Per his instructions I will close the door, draw the blinds in the room, turn the the sound machine on to the “Ocean” setting, flip off the lights in the room and close the door. That’s the way he likes it. Yesterday Gabriel’s presence was particularly unwanted and J made a sign: “Dot coM en Eccet Mi MoM ANd DAD” (translation: Don’t come in—except my Mom and Dad). When I told his intervention specialist about it, she said, “I wish he’d show me he could do that!” (It takes upward of two hours for Jonah to complete a four sentence assignment at school.)

Some days he stays in for ten minutes. Some days thirty or forty-five. When he emerges he is much more amiable, especially to his little brother. Last night they finished the day at the bar—J drawing Cubist renditions of Coyote and Roadrunner, G scribbling our his many versions of the sun.

puppy run

 

Ain’t No Grave

grave in orange

Actually, there is. And it’s mine.

Jonah’s taken to doing series work. Portrait series. Church series. Series drawings of our parish priest—one after another after another—that bear striking resemblance to the clown I imagined lived in a cupboard in my grandmother’s basement when I was a child.

But he breaks from his series work long enough to draw a long orange box inside of a larger orange box. And the smaller long box appears to have a door knob. Shortly after whispering to me in church, “Mom! Instead of Harold and the Purple Crayon, I am Jonah and the Orange Crayon! Can I keep this crayon in my pocket?”, he hands me the picture above and says, “Mom, I made you a grave.”

And then he is finished with graves. One being enough.

Flexing

“I said, sometimes it’s hard to be flexible mom!”

We’re talking about the possibility of going sledding later, but first I have a call in to the salon where I had my hair cut yesterday. Not sure what the deal is, but this is the second time I’ve come home with a lopsided ‘do, and it’s driving me nuts. I don’t go for asymmetrics.

Going with the flow. It’s not so easy for Jonah (or me for that matter). The both of us need warning when our plans (meaning, the way we think in our brains that things are going to go) are about to change. Trouble is, we’re the only ones privy to our plans, brain-ways being a pretty personal thing.

Fast-forward one month (that would take us up to yesterday).

I arrive at school to fetch Jonah. Almost immediately things go awry. I’ve brought an extra lollipop for J’s friend B, and as I’m offering it to her, his friend N pops around the corner. I couldn’t very well not offer N a lollipop, but it’s J’s lollipop, and I know I’m screwed. I go ahead and do it, prompting a dramatic conversation with J about why I don’t have a lollipop for him. I explain what happened—he was present for the interaction with B and N—but it still doesn’t make sense to him. Why don’t I have a lollipop for him? Little comfort is provided by the fact that there are three big bags of lollipops at home. I gave his away. I don’t have one for him NOW.

This lack of elasticity is a hallmark of autism, and in Jonah’s case, it extends beyond his thinking to his emotions and body. His muscles are all tension, persistently on high alert. At the ready, he can run, jump, spin or climb in an instant. But I am grateful he can voice his frustration, even if he’s unable to intercede on his own behalf.

Back to the lollipop breakdown. He proceeds to walk hunched over, head hung low, stomping out his frustration far ahead of Gabriel and I for at least half the walk home. In a “typical” kid, this behavior could be classified as bratty. A tantrum. There’s probably a little bit of that here, too. But.

I am coming to understand that such disruptions cause Jonah real mental discomfort, even pain. His body bears the load. Never mind how many times I explain the situation; his mom gave away his lollipop. I try to talk about sharing with friends, about delayed gratification (though I don’t use those words). Nothin’ doin’. I have to watch myself, because my initial reaction is to discipline him for being a brat. His behavior drives me nuts. But he finally returns to me—lamenting that it had been “a terrible day”—and I begin to understand why the lollipop was such a big deal. Turns out it was one more letdown/change in a day full of letdown/changes to his normal routine.

Here’s the lowdown:

1. Sickness has been rampant at school. J and another student were the only kids to be in class all week. The peer landscape of his classroom was different everyday, and it was driving him crazy.

2. He had made several valentines for his secret valentine, and his secret valentine wasn’t at school on Valentine’s Day.

3. He did not himself receive any valentines from a secret valentine (which very well could have been because so many kids have been sick).

4. His teacher was sick, and there was a sub.

5. I forget to include the sweetheart tart candies I’ve been putting in his lunch for several weeks.

6. A friend brought cookies. Jonah loves cookies, but he hated these and “had to throw them in the trash!” Huge letdown.

7. His substitute teacher told him he needed to “fix” his self-portrait “a little” (wish I could have been there to hear what she actually said). This frustrated him, and he threw the portrait in the recycling bin to begin a new one. Thankfully, he retrieved said portrait from the bin and brought it home anyway. And yes, I love it.

Follow all that up with me giving his lollipop away, and his behavior makes infinitely more sense. When I know that a day is going to hold many uncertainties (like exactly when we are going to go sledding or if the girls across the street are going to be able to play), I can help prepare J. We talk about Superflex, a made up superhero in a social skills curriculum he participated in a few summers ago. Superflex takes on the Band of Unthinkables, helping to come up with flexible solutions, and in turn, helping change the way our thoughts control us. Unthinkables include Rock Brain (gets stuck in the way he thinks things are supposed to be), Glass Man (prone to shattering meltdowns and reactions) and  Space Invader (makes you invade other people’s personal space). These guys make sense to J, and when he knows a change is coming, he’s much better at adapting (or at least not melting down).

I’ve spent a good portion of my adult life trying to learn to welcome interruptions to my self-imposed schedules. Sheer willpower isn’t very effective. The only thing that’s made a dent is daily bombardment. Having two young, rather demanding, children perpetually wanting me to see something or do something (“I can’t pull my pants up!” “Need a huggers!” “More juice!” “Need a kweenex!”) has beat a certain flexibility into me (with the help of low dose SSRIs).

Jonah’s struggles are more intense than mine. I think about the people who will love him in his future. I pray they will be patient enough to get to the soul of his reactions. What seems like a destructive measure of self-involvement is really a disability, one that he’s been living from his beginning. It’s a downside and the inverse of a dozen upsides. What I can do is help him into that awareness. The work will be his own.

superflex filtered sharp