The universe is no narrow thing

“The truth about the world, he said, is that anything is possible. Had you not seen it all from birth and thereby bled it of its strangeness it would appear to you for what it is, a hat trick in a medicine show, a fevered dream, a trance bepopulate with chimeras having neither analogue nor precedent, an itinerant carnival, a migratory tentshow whose ultimate destination after many a pitch in many a mudded field is unspeakable and calamitous beyond reckoning.

The universe is no narrow thing and the order within it is not constrained by any latitude in its conception to repeat what exists in one part in any other part. Even in this world more things exist without our knowledge than with it and the order in creation which you see is that which you have put there, like a string in a maze, so that you shall not lose your way. For existence has its own order and that no man’s mind can compass, that mind itself being but a fact among others.”

Cormac McCarthy, from Blood Meridian


One big love

“Anxiety in children is originally nothing other than an expression of the fact they are feeling the loss of the person they love.”  Sigmund Freud

Or as Jonah said the other day, “My stomach is punching me in the guts!”

He’s had a time of it, that one.

For one thing, we had company–which is terribly exciting but emotionally demanding. The visit coincided with a return to ESY summer camp, which was followed by John leaving for a six day solo journey. There were swimming lessons cancelled and thunderstorms. A bowling party and highway trip to the farmer’s market with friends.

He’s starting to hate ESY by the way. And it shows, because all of that progress he made in handwriting last year is disappearing fast. He just doesn’t care, unless he thinks he’s writing a secret message (his OT informed me). I haven’t been enforcing handwriting practice at home either (multiple worksheets and booklets keep appearing in his back pack). It’s this delicate balance of he needs a break and he’s got to learn that there’s things we have to do, even when we don’t feel like it. Though some (including my husband at times) would take issue with that last point.

The strain he’s experiencing is palpable. When we’re in the house together but not in the same room (i.e., in plain sight), J anxiously calls out every 2 minutes or so, “Mom?! Mom!”

“I’m right here Jonah.”

He shouts, with palpable relief, “I love you mom!”

Two minutes later, hit repeat.

The constant need of my (or his father’s) presence can be draining. I sometimes get irritated. This is as much about me (a professed introvert) as it is about him.

Jonah is very sensitive to my moods. Yesterday I suggested, “I bet I drive you crazy sometimes too.” His quick reply: “No mom! You never irritate me, because I love you so much.” Though his behavior often makes it seem as though the world revolves around him (a blissful kind of oblivion over which he has very little control), that boy has one big love.

Measuring up and down

Jonah goes through phases, so it’s next to impossible to answer the question, “How’s he doing?”

His behaviors shift. His anxiety ramps up or settles down. What he needs in response to these changes (be they internal or external) can be hard to figure. Sometimes it’s the swing or a long walk. Sometimes he needs something rubbery to chew. Sometimes the iPad–other times definitely Not the iPad. A tumble on the crash pit. The welcome routine of summer morning camp (aka ESY), or a break from that very routine. To watch that one scene in Star Wars or Monsters Inc. or Wall-E or Winnie the Pooh for the bizillionth time. But not for the bizillionth-and-one time, because that will ramp him up even more.

All of his therapists agree: it’s a puzzle. It’s trial-and-error. The only sure thing is he does need something. The kid’s got it in him to learn just about whatever he wants to learn, but together we have to help him find a way to get his body into a space where he can learn.

So when the insurance company responds to the OT’s request for another 20 sessions with something to the effect of “four should be sufficient,” it makes you wonder just what exactly they think autism is. The OT hasn’t changed her story. She’s submitted the same report with the same diagnosis at least five times now. She’s requested the same number of sessions because Jonah needs the same amount of assistance.

I draw two rather antithetical conclusions from the insurance company’s response: 1) they think autism can be cured; or 2) they think there’s only so much that can be done. Which is to say, after a certain point J become something of a lost cause. The reality of a life-long disability doesn’t seem to be on their radar, especially when that disability is largely invisible to most people—certainly to the powers that be who have never met my son or spent five minutes with him during a therapy session or in our home.

No matter how you pose the question, it’s certainly a matter of money. With autism rates at an all time high, insurance companies must be implementing strategies to keep costs in check. What knowledge those strategies are based on is something of a mystery.

So we’ll appeal their decision, but the question still looms: what, if any of this, is actually working?

Take for instance: Gabriel tumbles, slams his head into a wall (not an uncommon occurrence) or face plants on concrete as a result of his head forward, chest out, arms dangling to sides full out running form (see Pocoyo for an accurate illustration). Jonah will yell out, “Gabriel hurt himself!” Sometimes. But I don’t know that I’ve seen him once go to G and express any kind of personal concern or comfort. It’s not that Jonah doesn’t feel. He feels everything. It’s just hard to see or say where that feeling goes sometimes. What it’s doing in his head and soul.

John and I often say, not-so-tongue-in-cheek, “Well, the world revolves around Jonah.” I don’t know if that’s true, but it’s a pretty fair representation of the way things appear. Take the Lego Club social skills group he’s been attending for three weeks. J’s still building narrow towering structures—the only kind of thing he’s ever built with blocks. Socially, he’ll respond to his fellow builders if prompted, or if what he thinks they’re talking about is remotely interesting to him. Usually though, he turns the conversation (which still seems mostly like a monologue) back to his current interest (“Why is Monsters Inc. a story about doors?”). I’m all for the exposure to other kids on the spectrum—he doesn’t get much of that—and to anything that helps J recognize and express his feelings, but how changeable is J’s brain?

The idea of brain plasticity is fascinating to me, but as Jonah grows older, I see him becoming less flexible, if anything. As we pull into the strip mall where his social skills group meets, J always asks, “Why do I have to go to Lego Club?” It’s a legitimate question; one to which I don’t have a good answer. He partially asks it to get an answer, but he mostly asks because that’s just what he does when we pull into the strip mall where his social skills group meets. It’s a way to order where we’re going, a way to manage the excitement and anxiety (I think).

But what do I know? Sometimes more, sometimes less than the “professionals” with years of experience. What I do know: Jonah. And Jonah knows things no one else would even think to know. The way he expresses them is a constant wonder and particular talent.

John: What are you doing?
(as J drops the measuring tape from the top bunk bed)

Jonah: I’m measuring up and down. That’s just what life is.

School uniform shopping

Bunked Up

Nothing’s quite right. But everything’s good.

Jonah didn’t actually say that, but I think it might be close to something he would say if he wasn’t, you know, six-years-old and just beginning to put words to his emotional states.

We’ve been around home a lot this summer. Busy enough, but not too busy (I hope). Our schedule is definitely more fluid than it is during the school year. There’s three weeks on, then three weeks off for ESY (Extended School Year) services. There’s a social skills group (which means driving the highway, which means J’s in a pretty happy place) that meets on Tuesdays and Thursdays for four weeks. Nightly swimming lessons for two. Visits to family in Indiana and Kansas. Promises of the beach. Movie dates with Mom.

O yeah. And his brother moved into his room. There’s new bunk beds. A new routine, in the midst of a constantly shifting schedule. Kind of sucks.

Granted, it’s a kid’s paradise in there. Full over full bunk beds with tiny white strung lights. J’s hammock swing hangs at one end (it’s next to impossible to get G to vacate), and a sturdy old desk occupies the opposite end. It’s just the right height for J to stand and create all manner of masking tape and stapling projects—the most recent of which is a paper computer (he likes to spell words “his own way”) and styrofoam wings for the Buzz Lightyear suit. It’s also just the right height to climb up on and pull down the window and yell out to the babysitter as he arrives. Not so great, or safe, especially when G leans his (okay, it’s massive, let’s hope he grows into it) head against the screen. Window bars, here we come.

So the down side. It’s a lot of change. Jonah actually started weeping when John took apart his old bed frame. Real tears. Real angst.

“But I love my old bed so much! Where are you taking it?”

“To the garage love.”

“And you will put it back together so that I can visit it?!” (He was completely serious about this.)

And bunk beds are, you know, tall. So we had to install a low-profile light instead of the ceiling fan. “But I love my ceiling fan! I will miss it!”

John’s spent a good five days putting all sorts of touches on the room to ease the transition, including a shelf up high for Jonah’s guys (shared last night by Yoda and Wall-E), and my old iPhone restored for flashlight purposes, early morning eBook reading and game playing.

Typically, G’s been the real stinker. The idea of change may wig Jonah out, but he usually surprises us and adapts with reasonable ease. Not that signs of anxiety don’t make themselves known. J’s gone through two chewy necklaces in the course of a week. Gnawed right through, to the hard plastic center. He’s also clamoring for the iPad or his movie player a whole lot more. We’re inclined to see this as a form of (rather annoying) entitlement, but there’s also the reality that focusing in on a game or a movie calms J. Can’t fight the facts. The trick is setting sensible limits and sticking with it.

O yes. Gabriel. He misses his crib/toddler bed. He’s too big for it, but I think the confines were comforting, at the very least familiar. He’s taken to making a run for the door in our new set-up—even with John laying beside him, blocking the way. It can be hard to outlast the kid. Last night John dozed off only to wake up and find G missing. Somehow he’d made it out of the bed undetected (crawled off the end?) and clamored up the ladder to J’s realm. He had aforementioned Yoda and Wall-E in hand when John discovered him. Thankfully, J slept on.

You may be saying to yourself, these people are crazy. Who would give a two-year-old prone to death-defying feats and possessed of considerable escape prowess access to a freakin’ bunk bed? That’d be us. We might be crazy, but G’s going to find a way to go where he wants to go no matter where we put him. And we’re inclined to let him try while we attempt to teach him how to do it safely. Our rule is, you can do it if you can do it yourself. Yeah, it’s a little crazy-making/nerve-wracking for us from time to time—and yes, he’s only two and not yet an entirely reasonable creature—but Gabriel’s got drive. Who are we to tamp him down? As if that were even possible.