Great-full

That’s what Jonah says. He sniffs you and then half-giggles, “You smell great-full.”

And that’s how I’ve been feeling lately, except I would probably spell it “grateful”, because I mean it in the gratus (Latin) sense. Funny thing about the word “grateful”—in particular, it’s formation in the English language. Most adjectives ending with the suffix “-ful” begin as nouns. Beauty (n) becomes beautiful (adj). Regret (n) becomes regretful. But the word grate (a now obsolete word that means pleasing, agreeable or thankful) is an adjective. When you add “-ful” you essentially are turning an adjective into an, uh, adjective. Who says you can’t have too much of a good thing?

According to the etymologist Earnest Weekley, grateful is a “most unusual formation,” a true anomaly. The Word Detective adds that the formation of the word grateful is “just more evidence that English (or any language) is a quirky, juryrigged patchwork, not a kit where the pieces fit neatly together, and even the most common words often have strange stories.”

I know I probably don’t need to say it, but this is a wonderful way to describe Jonah. He is his own strange patchwork of quirkiness. Take the way he’s started to periodically cup his hand over his nose to breathe in a few big whiffs. When asked why he does this, he responds, “It makes me feel comfortable.” This morning he could not talk about anything but Inspector Gadget (believe me, I tried to redirect the conversation a half dozen times). He insisted he wants to get into a car wreck (which was the catalyst that turned John Brown into Inspector Gadget) so that a doctor could “cut me open and take out all my guts and put in the steel so that I can be the real Inspector Gadget!” I tried to impress upon J the pain that this would involve, but he was undeterred. I even went as far to (try and) burst his bubble by saying that Inspector Gadget isn’t actually real. J thought about this for a moment, then roundly dismissed my blasphemous statement.

I read a handful of blogs by moms of autistic children (most of them are in the Blogroll column to the right). They remind me we’re not alone. They also teach me a good bit about Jonah, helping me understand his sometimes strange behavior. John and I concur that J’s currently inhabiting a kind of golden age. He’s curious, and almost completely unselfconscious. He’s often quite helpful. He’s hilarious and affectionate and daring. Maybe he’ll stay this way. Most likely he’ll change. Who can say? I try not to compare his difficulties with those of other autistics, but a little bit of juxtaposition can’t be helped. His struggles are not severe or terribly debilitating. That said, they are real, and I try not to discount them or chalk them up to simply bad behavior. Set J up next to a “typical” kid and the differences can be stark.

But the people who love him (and there are many) love him pretty much exactly the way he is and do their best to meet him there. May it always be.

Mr. Six

Now We Are Six, by A.A. Milne

When I was one,
I had just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I am six,
I’m as clever as clever.
So I think I’ll be six
now and forever.

 

Mystical magical six.

“When I am six, I will brush my own teeth.”

“Guess what! When I am six, I will buckle myself.”

“When I am six, I will be in the elementary.” (J-code for 1st grade.)

“When I am six, I will button myself.”

“I will read the little books about Mac.”

“I feel like to watch a movie because I am six years old. I will watch the Real Spiderman. I will will watch the Green Goblin. I will try.”

I’m not sure what happened in J’s brain to endow six with such supernatural power, but hearing him voice a desire for independence is a wonder. Mind you, these are tasks he’s probably been able to do, albeit slowly, for awhile now. But being able is only a part of the mysterious equation by which Jonah operates. He has to want it.

I forget how hard some tasks are for him. After his OT session yesterday, his therapist showed me his scores on a visual-motor integration evaluation they completed to track his progress (and prove to our insurance company that he continues to need therapy). His motor coordination—the ability to trace within a confined space (think those labyrinth-like maze books you loved as a kid)—score had improved from .4% to 1%. His visual perception score (the ability to look at a shape and draw it) had improved from 3% to 13%. Those percentages mean that J ranks in the .4% to 13% range for kids his age. Seriously, I had no idea.

My sharing these scores isn’t about comparing Jonah to anyone. That doesn’t do him or me a lick of good. What I’m coming to grips with is that the ability to write (and learn to write) isn’t just difficult for Jonah; it’s an outright impairment. Add to the mix sensory integration and sensory modulation disorders and the word disability comes to mind. I’m starting to think/realize that the hardest part of his struggle will be that his disability may be largely invisible, which presents its own set of difficulties and will probably involve his sense of self. And God, I love that kid’s self. It’s about the brightest thing I’ve ever encountered. Say J’s an atom. Well, his essence is the nucleus with all those crazy electrons spinning around it. But what seems crazy and disordered is really its own order and what holds him together.

I don’t mean to be bleak, throwing around the D-word and all. Because the thing is, what Jonah doesn’t get, I firmly believe he will get. I’m not talking about a cure or a comprehensive change, as if he were to morph into a “New and Improved Jonah!” Like I said, he’s got to want it, and what he doesn’t want he may eventually just need to let go—though letting go may not be so much his issue as mine. For now, I’m perfectly happy with his twiggy-limbed six-year-old self, “clever as clever…now and forever.”

The Price

Everything costs something, though I don’t like the idea of “cost” so much. It implies price, which implies putting a higher or lower value on whatever it is you value. I understand there’s a hierarchy of needs, maybe even of desires. Conversely, cost can be a good thing, because cost necessarily involves worth.

I like to think about price in terms of relationship. True relationship involves reciprocity. And what’s got me thinking about this, primarily, is Jonah. He’s always keeping me on my toes, that one. I’m almost constantly in the process of evaluating and reevaluating the way I think about things, about him, in terms of what he needs (or doesn’t).

J’s making great strides in so many ways. They’re working him pretty intensely at school, and there’s been real academic progress—though I find it strange writing about my five-year-old (almost six) using the word “academic.” His writing is becoming, well, almost legible. He can usually recognize every letter of the alphabet and numbers up to 20. And here’s an exciting one: he’s starting to recognize words. He can sound out short words if he takes his time. Hearing your child read for the first time is nothing less than magical.

So on the flip side…

Jonah’s been in high gear since Christmas. Considering he’s on the high gear end of things generally (and not so generally) speaking, this fact must be carefully considered.

Other than the “I hate school” mantra he’s finally working his way out of, he’s been chewing on the knuckle side of his hands, coming home with red scaly patches that we massage every night with hand cream. He bites at his lower lip; sometimes it bleeds, sometimes he develops a chapped, red line beneath it, like an elderly woman’s lip liner gone awry.

We get reports of “crazy in his body” or “Tigger all the time.” He has to leave circle because he’s a danger to others (rocking back and forth, putting his feet—with shoes—in the air while rocking from side to side). Sometimes he dumps work or just won’t do it. It’s hard, staying focused on a task. The effort produces a sensory overload, and J’s brain/body respond in strange and fascinating ways. Sometimes he slips into this falsetto, cartoony voice that either speaks nonsensical phrases or repeats short scripts from one or another of his cartoon fascinations—accompanied by a “loosey goosey” kind of flopping about. Most often he ends up on the ground, only to get up and start again.

Yesterday at the park, this is the way J introduced himself to a father and his two young children. They immediately headed in another direction. It’s kind of heart breaking, because he wanted to interact. He was interacting. They just didn’t know what to make of it. Frankly, neither do I.

I’ve read several posts on autism mama blogs lately that reiterate the belief that “behavior is communication.” Then what’s J trying to say? We’ve been trying to figure this out from the moment he was born (I’m not exaggerating here). How can we help him start to recognize his own needs so that he can get those needs met in a constructive way? And what exactly do we mean by constructive? I’m not trying to make him “normal” (as if that were possible), but honestly, when he acts like this in public, it’s easier to either shut him down by commanding him to stop or point him in another direction (away from the people he’s trying to interact with) than it is to enter into his world and try to help. That’s my struggle, and I’m not always proud of how I respond to it.

J’s IEP is coming up. In the next few weeks, there’ll be a lot of talk about what he can’t do, about the assumed benchmarks for his age and grade level, about his interactions with peers. I will inevitably cry while talking about him with his occupational therapist and his classroom aid and intervention specialist. As hard as it can be, I’m grateful for the reality check it provides. Not just in terms of Jonah, but also—probably more importantly—for me. I don’t know who needs therapy and educating more, J or me.

The two of us are forever inquiring into each other’s worlds. He’s always working to make sense of my sometimes volatile, ever-shifting emotions. I’m trying to figure why his after-school snack choice is sending him to the dark side as he screams at me, “But I DO want cheese! AND pretzels!”

It’s ironic really. John wondered aloud the other day (something I wish he’d do more often) how he ended up with two such intensely emotional folk. He says he’s no good at knowing how to help us. I know we can be confounding, but Jonah and I both name him one of our favorite people on the planet. It goes to show how hard it can be to help, and love, the ones you’re with.

How it runs in the family

John and I just got back from a night on the town. And we’re wasted. So we’re doing what any pair of proper introverts do after a double date and a trip through a completely overstimulating art opening involving multiple documentaries playing simultaneously to a packed house: retreat! retreat! retreat! I came home and ordered the house a little (for some reason I found it completely necessary to sweep the downstairs bathroom floor and clean the mirror); he sunk into our massive throne-chair and watched some old footage of Steve Jobs unveiling the iPhone. Now we’re each immersed in our own little screen worlds and perfectly happy (if exhausted and overworked) doing so, about six feet apart. Hello date night!

As we left the gallery tonight feeling socially and sensorially fried, John declared (as he staggered to the car), “I’ve got sensory integration issues.” Me too, though maybe not to the same extent. Large crowds are a complete drain on my system, large being any number over five. Ever since I read Thinking in Pictures by Temple Grandin, I’ve been making connections between Jonah’s difficulties and my own. Temple mentions research stating that a good majority of children with autism have at least one parent (and usually two) with autistic traits and/or a history including anxiety (check), depression (check), panic attacks (check). There’s even an online test you can take for Asperger’s. It’s not definitive or meant to be a diagnostic tool, but it is does help you take a good look at yourself, in terms of your own social and environmental tendencies. I haven’t taken it, but a few weeks ago John did. On a scale of 200, John’s Aspie score was 102 (you get a score for Asperger traits and a score for neurotypical traits). Translated, that means he exhibits both Aspie and neurotypical traits. Like I’ve been saying.

© Landon Bryce, thAutcast.com

I follow a blog called thAutcast, and a few days ago the author posted a graphic visualizing the amount of autism in Parenthood’s Braverman family. Only Max is a diagnosed Aspie, but Landon Bryce (thAutcast’s creator) does a character-by-character run down of autism traits in the family entire. I’m something of an on-again/off-again Parenthood fan (the melodrama is a little much for me), but I tune in to see the way they tell Max’s story. If you’re interested, check out more of Landon’s posts and accompanying graphics. Or watch the most recent Parenthood episode here.

As for me, I feel a little more settled in myself, having now spent a good hour and a half doing my own thing. John’s got a good vibe going on too. Less toasted zombie, more industrious hermit.

LLAF or 1-5-3

“Simplicity is a consistency that resolves itself.”

I love this. It feels circular, but also like a road. I can’t tell you the origin, but the quote came from Bill Cunningham on one of his “On the Street” collages, prefaced by, “There’s a saying in the art world…”

Today I’m applying it to Jonah and his way of taking things in. Something about numbers and letters, of symbols as a whole, doesn’t absorb easily. Let him watch a video a couple of times, and he will quote you passages to near perfection. But it’s taken several years for him to recognize the letters in his name, and on some days still, it’s hit-or-miss. In many ways he’s just a late comer. The kid cried for a good percentage of the first nine months of his life. Looking back, we can recognize more clearly how his struggle with sensory integration made sleep and simple existence incredibly difficult, maybe even painful for him. So if you’re uncomfortable in your own body and your only form of communication is to yell about it, it makes sense that you’re not going to be taking in much of your environment. My theory—and it holds true in a variety of situations—is that Jonah is about nine months “behind” in regard to those benchmarks typical kids are supposed to meet. Of course, this is a generalization. In some ways he’s ahead; in others, even more delayed.

So for a good year now, his teachers and OT’s and intervention specialists have been doing intensive alphabet/number recognition work, incorporating writing by having him trace in sand or make letters with putty. Same as with his name, some days he can recognize five or six letters of the alphabet (other than the letters of his name), sometimes you’re lucky to get a “J” or an “O” or an “H”. Friday, unbidden, he started reading (from right to left) a hand-painted sign outside of his school: L, L, A, F. Three of those letters have nothing to do with his name! Yahoo! It helps that he’s been obsessing about when fall is going to come. And if it will still be fall at Halloween, and at Christmas.

Then there was a meltdown involving a castle he’d made out of poster board and toilet paper tubes and streamers that I had to jimmy into the buggy, which distressed him to no end because I was “RUINING IT!” We got through that by the promise of a lollipop on our arrival home. And no, I don’t feel guilty a bit about bribing my child with candy. But it does make me internally reference a post on We Go With Him, called The Eternal Autismland Conundrum.

J’s second triumph occurred a block from home. A neighbor had erected a new address marker, a stone carved with his house number. Unbidden, Jonah proceeded to point out (reading from bottom to top), “It’s 1 and 5 and 3.”

Maybe all that work with his teachers and helpers is paying off. And maybe it’s also organic, the way that anyone comes to understand things in their own time and way (the Montessorians call these intervals “sensitive periods”). It’s simple and it’s not, because it’s also mysterious. But maybe mystery isn’t as complicated as we think.

One more story: Jonah’s learned to ride his bike without training wheels (not so late comer here)—in very much the same way he started talking and peeing in the toilet. He just did it, without extensive training or much perceptible accumulation of skill. He spent a good part of today circling the three pine trees in our sidelot. “Can you hardly believe it?” he kept asking, and then repeated something he’d heard me say about John painting the hand railings on our porch: “Your dreams are coming true.”

How a Sunday feels (or how to get free)

Church. I love it. Especially the liturgy. I converted to Orthodoxy about ten years ago, drawn to the music and the rhythms of prayer and sacrament. I looked forward to living the rest of my life into that life–slowly, intentionally, exposing my humanity to the church’s sacraments. Becoming more human, more myself. Learning to abide in the Lord have mercies we pray dozens of times.

Roadblock: kids–particularly as the boys grow older, more mobile, more vocal, and in Jonah’s case, more quirky. Two hours in a pew, and much of that time standing, but not only standing, standing still? Right. I used to love Sunday mornings. It still took a fair amount of effort to get there, but once I was, I was always glad to be. So triple that effort, and then remove the payoff. That’s kind of how it feels. This morning as we were hustling J and G into their Sunday best (which basically means not jeans and buttons on their shirts), John mostly mumbled, “What’s the point? It’s fruitless.” I immediately snapped back (with my customary “judgment first, compassion later” protocol), “If you think the sacraments are fruitless, then, then, (I stumbled around here for a suitably dramatic finish), I’m done.” Well, twenty minutes into the service, I was standing in the nursery, in tears, undone. His words echoed back at me: this is fruitless.

Comparatively, Jonah had a pretty good twenty minutes before we bailed (at which point someone snatched our pew, so even if we had wanted to go back into the sanctuary for the rest of the service, it would have been, word-of-the-day, fruitless). But he was just done. The space was crowded and tight. I think the domed ceiling helped a little. Another local church with a much darker interior and close-feeling walls turns him completely manic in his body, squirming, rolling, requiring the one or other of us to wrap him in our arms while continuously rubbing his chest with strong, deep strokes. And as he gets older, his strange behavior can’t be chalked up to being a crazy toddler. Besides, Gabriel proudly wears that mantra now.

So we keep trying new churches, but we end up having to make our choices by negation. And what feels good about that? I don’t have an answer here, except that I want to keep trying. And there’s almost always someone who somehow reaches out with compassion, usually with a smile or a laugh at the antics of one of our kids. It’s just that I can’t just live on smiles. I need a community. We’re simply not around long enough to assimilate. And I haven’t mentioned the Greek snag. Best saved for another post.

Since the Orthodox Church isn’t big on nurseries (the whole point is for the children to learn and participate in the liturgy with the rest of us), wouldn’t it be great if churches had a ministry where members would volunteer to sit with special needs kids so that their parents could worship and pray and leave a little more restored than when they came? Once you become part of a community this happens naturally, like it did at our church in Columbia, MO. People knew Jonah; they’d known me pregnant with him, they knew how loud and long he could scream as a colicky infant. They got used to his funny antics and funny questions. They didn’t mind if he stroked their arms or snuggled in (sometime uncomfortably) close, his face pressed into the bosom of a well-endowed yia yia. Okay, they usually did redirect him when he got to rubbing their skirted and stockinged legs. Understandably.

I know this is a season, that it will pass or transform into another reality. I try to remember that. And what John murmured in passing, as I chased Gabriel to the water fountain and he sat with Jonah in a nearby courtyard, soaking up sun from the warm concrete: “They’re who we got.” I can always count on him for unwavering unsentimentality. The truth is hardly ever easy, but learning to submit to it is how I get a little more free.

What a walk will do

Jonah woke up yesterday with The Crazies. On days like these, he can hardly stay in his own skin. He rocks in his chair at the breakfast table. He falls off his chair at the breakfast table. Getting from the breakfast table to the bathroom sink for a teethbrushing requires three or four redirections as he stops to take a couple of jumps off of the couch, scales the indoor climber, dons his ninja eye mask and does a dance in front of the full-length bathroom door mirror making his customary looking in the mirror (or iCam) face. Below is a fair representation, but imagine his arms extended, which they almost always inexplicably are, as if to say, “I love being me!”

I thought to write a note to his teacher (who thoughtfully created a journal through which we can communicate with his several teachers and therapists and helpers) only after we had wrangled him into the car and were on our way to school. The week wears on him–the amount of energy it takes for him to stay focused on a task (especially non-preferred ones) and the stresses of constant social interaction in a world that he only understands on his own terms. Jonah is incredibly outgoing (especially compared to his parents), but kids his age are alien. When he’s anxious he usually does one of two things: 1) asks a great number of questions about what is going to happen next, and in what order, sometimes repeating the same question 10-15 times, or 2) seeks some kind of sensory stimulation by which to calm or somehow physically order his anxiety. He rocks, he rolls on the floor, he flops over the top of a table, he spins. I was thinking about him in school all day, thinking about his teachers learning how to focus his energy. We only live about eight blocks from the Montessori he attends, so at three I loaded up Gabriel in the buggy and thought we’d experiment with walking home from school, to see what a walk can do.

Jonah was very pleased by the surprise. He pranced beside me before falling behind in order to count the steps leading up to various homes on our route. And he chatted. I learned more about this one day at school than I have several weeks of days combined. He told funny stories, in his funny way. I’m kicking myself for not being a better texter (I don’t really text at all) because I was trying to transcribe one story that he called “The Two Dirties.” Here’s what I got, but the way he wrapped the story up was the funniest, and I lost it in the midst of trying to get the story part down. Next time I’ll just turn on the iPhone mic. Live and learn.

“I made two big messes today. For one: I made a mess of my hands and a mess of my legs. I tripped and got my hands and legs all dirty. I had to clean up and get all tidy so that I could be tidy and work and make some dinosaurs and be absolutely tidy. And for one: the mess of the lunch. I dropped my lunchers all over the floor. That was a big mistake. And they were all over the floor everywhere! My touch was ruined. My touch was ruined all over the floor!” He then proceeded to climb a light pole.