the uneven days of winter vacation

where one boy gets dressed, and the other - well. Our daily rhythms have vanished in a startled, grinning burst of winter break.

We've had playmates, the Eldest's first and eminently survivable sleepover, houseguests and important self-discoveries, such as my discovery that, if I must have reading glasses, then by golly: purple.

And houseguests (hat-making, farm-building, kid-loving guests) and chatter and amazing sushi and ooooh-warm soups and holy-freakin-moly cold, and - yes - talk. The Man and I had a series of those spiraling, serious conversations about how we parent, and how we want to parent. We believe strongly in explaining our parental lines in the sand, but that's developed into a compound 'do X, because otherwise there's natural consequence/irate parent consequence Y' approach. Which does not work so very well.

When you do that, the Eldest informed me, I can choose between the consequence and what you want me to do. He raised his eyebrows, waiting while I winced. Tucked under his covers, the Toddles looked up, clear-eyed and thoughtful. Good to know, I admitted. I'll have to think about it. I certainly don't like being the kind of parent who threatens. The Toddles shook his head. Me, neither, he told me.

Wincing, laughing, the Man and I began hammering out a new plan. Possibly involving a lot of hugs. Certainly requiring us to be honest about what we are capable of. Which one of us is more likely to be set off by a recalcitrant, naked person at 38 minutes past bedtime? Which parent can best manage a shrieking, you're so unfair rant over toothbrushing? A shoeless, shirtless small child whose backpack and lunch are still politely at the top of the stairs, while parental teeth grind, trying to herd the kids to the car - and the morning commute? We sat and talked on the futon, on the kitchen floor, curled up in bed, talking about the boys, about who we were, the parents we want to be, the people that we are - and could be. It was necessary, cathartic, and brutally honest. A good way to end the year, we told each other, and talked until a small boy arrived to insist that someone curl up with him.

And then it was quiet.

But in the quiet, gears turned,

How does it work? the Eldest mused, and ran for paper and pencil. He drew carefully, copying sculpture titles, the artist's name, and the details he could find. Oh, said a venerable gentleman observing one sculpture. It's using gears. He looked at the Eldest, to see if the child appreciated this bit of wisdom. Having just fought a round of the duh* wars, I held my breath. But the Eldest merely looked patient. Yes, he said. And there is the motor. And do you see the two springs?

...eyes looked,

taking notes on the wonders of rocks. The Eldest spent a full hour, drawing, wandering, exclaiming. My favorite is the aquamarine from Brazil, he told me. I rather liked some of the lapis lazuli, myself, but was struck by some of the more bulbous rocks. The Toddles, drawn to the meteors, stroked them comfortably. He showed me their inclusions, but discovered the joys of grin-and-duck when I aimed the camera at him. Urgh.

....hands worked,

[this photo blocked until Gamma has received her birthday gift]

And, alas, worked some more. This project took over three weeks, as the Eldest designed, budgeted, and redesigned once his materials arrived. And then, ack! had to re-engineer his work on the spot, as we learned some rather basic lessons about wire. But, said the Eldest, I wonder if we can do things with wire like Arthur Ganson does?

When we took Gamma's birthday gift to the experts (help!), we picked up some supplies. Maybe. Not, I suspect, as effectively as Ganson, but let's try and see, I said. Doubtfully.

...and oh yes, snow fell.

It's been a snowy pair of weeks, with bone-chilling winds. But snow somehow transforms teeth rattling cold into fun. So, the boys happily shoveled the walk on Thursday, stopping periodically to fling snowballs. It's not the best snow for snowballs, I was informed. It's too fluffy! But they cleared the sidewalk and stairs regardless.

Cheeks glowing, the snow critics headed inside for hot soup (see below) and onion tart. And a sense of deep satisfaction - right until the moment when the smaller critic was informed that he was overdue for a nap. [insert wail, whisk and roar here]

Folks, I'll be back with Part Two of the OT/sensory integration story, but for now, I'm off to help the Eldest sort recycled (okay, rescued) glass beads. He's singing quietly to himself at the table as he works, and his peaceful pleasure, the quiet, satisfied vibration of his work ripple outwards. In the kitchen, washing lettuce, I find myself smiling.

And then, he looks up. I love you, Mum.

My throat tightens, thickening. I love you, too, kiddo.

It's been a thoughtful, honest, loving - and as always, slightly cranky- end to the year at Chez Imperfect. With any luck, we'll begin the new year as we've ended the old one, ripe with the awareness of our gifts, and ruthless in considering our needs. But before I head over to join my order-from-chaos kidlet, I did want to say:

from all of the Chez Imperfect denizens, we wish you all a happy new year, rich with ripples of love, satisfaction and the work that makes us sing. And, of course, the imperfections that make us shine.

*****************************************************

A Wintry Day's Soup:

3 medium potatoes, washed and chopped roughly

2 large onions, or 1 large onion and 1 (washed) leek, chopped roughly

7-8 Jerusalem artichokes, a.k.a. sunchokes, washed and chopped roughly

1/2 inch ginger root, peeled and sliced into thin strips, or 1 tsp ground ginger

1 can of white beans of your choice: navy beans, chickpeas, butter beans, even Roman beans are good here. Drain and rinse.

salt and pepper to taste

3 bay leaves

6-8 cups water, or vegetable broth

1/3rd cup leftover white wine (or cooking wine, if you are so equipped)

4 Tb olive oil

optional: a sliced carrot

Saute fresh ginger and onions/leeks in oil until browned. (if using ground ginger, add when adding the rest of the spices) Add potatoes and Jerusalem artichokes, beans, spices, wine and enough water to cover the veggies by 1 inch. Let simmer for roughly 20 minutes, or until the potatoes are quite cooked.

Puree. Return to the stovetop and simmer for perhaps 5 minutes, adjusting seasonings. Serve hot, wishing you hadn't eaten all the garlic croutons yesterday. I like sprinkling them on top, said the Toddles, wistfully. Can you make some really, really quickly? And be done making them already?

Um, no.

*in which one side offers various sarcastic, oh jeez that's so OBVIOUS sorts of comments, while the other side suggests that perhaps those are, um, obnoxious. If not also disrespectful and somewhat indicative of the opinion that He Who is Dismissing is far superior than the Dismissed.

define that word

A quick break to fume, then back to the OT.

Of course, I'm thinking about health care. And, in this season of gimme, about I'm thinking about needs.

The Eldest is lusting for a GameBoy sort of thing - there are three types, he informs me. And proceeds to offer loving, cilia-numbing detail about each. I don't need it, he says, wisely preempting me. But I really, really want it. Later, he'll forget himself in a moment of passion, and tell me that but Mom, I really need this! but he's laid his foundations well.

Still. Does he need this thing? Should the kid who loses his sweatshirts (daily), be trusted with a hunk of electronics? Will the kid who has to be called for dinner five, six, eleven times (hey! stop reading! it's time to eat!) do better/worse/none of the above if his book is replaced with a gizmo? And if there's one electronic thingie and two loving but not-quite-jostling small boys, how will this go? And why am I even pretending that these are rhetorical questions?

Want. Need. Gimme. No, don't give him - give ME.

(okay, stepping back now.)

Health care legislation decides, to an alarming degree, what we need. The private insurers get to dangle, alluringly, what they think we want. Neither tend to be accurate, and there are any number of explanations, more or less poetic, as to why this is so. Setting aside for the moment the doctor and hospital's challenges , from the consumer's perspective, the simplest explanation is that what we need can be a moving target. You might not need infertility treatments, but you'll be appalled to discover what they can do to people who want them. And I would hesitate to decide whether that want is a need or not, until you've watched clumps of blood and hope drop from between your legs. Want? Need? If you are in Massachusetts: right.

You have to live it to understand, maybe. Maybe not.

From the NYTimes:

We are, in a sense, being punished for our own charity,” Gov. David A. Paterson of New York said last week.

Paterson is talking, of course, about the New York state efforts to expand health insurance coverage. And perhaps he ought to know whereof he speaks, as someone who has relied on the, um, charity of others. Well, on Hempstead's charity, when Long Island's failed.

Perhaps Paterson knows something that I do not, about the nature of want, need and the generosity of charity. Perhaps he understands something that I'm failing to grasp, about what it means to provide for others, and to give from your generosity where there is an opportunity for giving, rather than quietly providing what should be there.

Perhaps. And I wonder, if the Eldest lived in his house, would Paterson buy the computer game thingie?

Either way, a fair warning to us all. Coverage for health care might be a right, it might be a privilege, but oh must you pray for blue skies and plump budgets, should it be a charity. Because when you need it, you might just call it a necessity.

whither the OT? (part one)

Okay, so you might recall that oh, back in September, maybe? I mentioned a drift of stuff, and an OT report buried in there somewhere. Well, it was. And it all started last year, with a teacher grab & chat:

Teacher: just so you know, the Eldest has been disrespectful in class today.

Me : oh, no!

Teacher: yes. This is a real problem. You will speak to him?

Me (calculating bucket volume, withdrawal quantities): absolutely.

And I did. And then I did again. And was informed that I needed to do so again. I changed gears, shifting my tone from understanding to irate. Each time, the Eldest promised to try, and I do believe that he did. It was an uphill battle: the kid just didn't like this teacher, and offered me any number of reasons why not. Listening to other parents, I realized that the Eldest was not unique in this, and changed gears. After a long chat with the boy about being respectful to those in authority, be they oh so irritating to folks under a certain height, I went for an end run.

If I complain about a teacher, then I am yet another mom, blaming everyone but her kid. But if another member of the school has a professional concern, ah, well. That's different. So I sat down with the school's learning guru, and asked her to offer a fresh pair of eyes. Maybe there's something I'm missing, I said, certain that there wasn't. I'd love to hear what you have to say, I said, sure that I already knew.

What could follow a set-up like that, other than the part where my jaw drops faster than my hand can catch it? Right. He seems to need to move more than the other children, the guru told me. He's mostly moving to get some sort of physical contact with something - it's disruptive, but doesn't seem to be deliberately so. Oh. I took furious notes for roughly half an hour, and then stared at them. Are you talking about ADHD? I asked.

Her pause scared me. Not necessarily, she said. What do you know about sensory integration?

Um, I said.

My understanding is that sensory integration is essentially when one or more of the senses is either too sensitive (everything sounds very, very loud, or most fabrics feel like sandpaper, and the tags on that shirt are pure evil) or under-sensitive (noise! need noise! need textures to feel, rub and roll in! Need to live on the swings, back and forth, back and forth, whooosh-up, whooooosh-down, whoooooooooshhhhhhhh). There's more to it, of course, and apparently you can have one sense turned way up to hypersensitive, and one way down, to under-sensitive, and a kid frantically trying to feed the under-fed sense (under-sensitive) and protect another, overloaded sense. Or so I understand.

But I have to admit that I learned this from sources other than the CDC, and that makes me a little, oh, twitchy.

From what I can tell, sensory integration dysfunction, or sensory processing disorder is a big, hissing argument between experts, with kids tangled up in the middle. I know parents of autistic kids who swear by the therapies, who talk honestly - poignantly - about the effects of the condition, and there are certainly any number of earnest, if not enthusiastic foundation/professional websites. And a book or two. The diagnosis has been around since the 70s, but there's no entry in the DSM-IV (TR) for sensory integration dysfunction. Will there be in the 2012 edition? Maybe. There are articles in journals. Databases being constructed. Hmmm, said my data-loving guy, and valiantly tried to raise a skeptical eyebrow.

Certainly, it didn't bode well when we discovered that the local experts did not accept insurance. Nor, I was told, would our insurer cover therapies for sensory integration, when provided by an otherwise in-network medical personage. Although, our go-to insurance person said, this was not because of the lack of formal diagnosis - it's an occupational treatment, not a medical one, said the nice lady, and both sides braced for the argument.

(purely gratuitous note: I won it. On a technicality, but still. Ha.)

Sitting in the guru's office, I smelled a concerned parent trap - one of those things that you can't ignore (concerned, right?), because it might be causing your kid problems, and you can't quite dismiss. So, you end up feeling obligated to plunk down hours, co-pays and oh yes, brain space on it.

And oh, I know that a kid with one medical condition can start a collection of them, as other diagnoses march in and politely join the group. Maybe it's because there's lots of people who care about the kid, and they are watching. The Eldest's grandfather calls it the medical microscope, and when it's on, says he, seek and ye shall find...something. But I wonder if the working assumption is that if the kid's cracked in one way, then surely he's cracked in another.

Silence fell in the room, while the guru waited. And I knew what I had to do: the unspoken deal between a school and a parent of a kid with a bucket is, we take you seriously, and you take us seriously. It's fair, respectful, and makes for a decent working relationship.

I settled on a position of sincere skepticism, and asked politely for second opinions. The school learning guru agreed to talk to some relevant medical types who know the Eldest, and heads were put together. Notes were compared. Because, I pointed out, a kid who is (alas) annoying, who clowns or is uncooperative could be a kid under stress. And some degree of stress is the way of things when you have a chronic condition. So, before we slap another label on the kid, let's take a moment to think about whether this is just an old wolf, in a new outfit. Please?

When the huddle broke, the guru's question still stood firm.

The coping clinic, a.k.a. psychiatrists at Big Famous Local Kid hospital who specialize in kids with chronic medical conditions, said that roughly 20% of children with chronic medical whatnots, also have some sort of sensory out-of-whackness. The psychiatrist and nursing chief at Hole in the Wall told me that their kids with diabetes and bleeding disorders have amazing pain tolerance - and we hemo-mamas tend to say the same. High pain tolerance could be the result of desensitization, I was told. And nobody laughed at the idea of putting this sensory thing and the Eldest in the same box. It's worth looking into, I was told by the coping clinic.

And I just didn't know if I wanted to agree.

The Eldest has a humbling array of coping mechanisms, from cuddles to thumb-sucking (with his dentist's reluctant approval), to the particular, odd sensation of the skin as it slides over a bony joint. Try rubbing the skin over your elbow sometime, sliding the skin over the bone. Does that feel good? It gives me the willies, but that soft-bony combination does something oddly soothing for the Eldest. A solid, loving squeeze makes something in the boy relax, resetting some sort of emotional metric. When I throw in a small rocking motion, he becomes boneless. He goes into my hugs wired, frustrated, furious, shriekingly joyous - and comes out a solemn-eyed happy. Calm. Like whatever he's carrying at that moment got rebalanced. But couldn't that come from the love, wrapped around him and holding him close? The silent, snug reminder that I love you, and I'm here?

Maybe. And maybe, echoed the learning guru, the coping clinic, the things I read and my own instincts. And so, sensory integration? I said, staring at my pages of notes. I've never heard of it. And the lovely, thoughtful guru at the learning center explained. You start with an occupational therapist's evaluation... and we did.

Oh, and the teacher? Ah, well, said the guru. And smiled apologetically. You might want to cut your losses there, she sighed. My shoulders slumped. If she'd disagreed with me about the teacher, then I'd have labelled her as a Person to Manage, but not a person worth listening to. But she agreed, offering a number of thoughtful observations while clang! went the concerned parent trap, and ouch, went my foot.

And possibly also the kid's.

next post: what the OT saith (part two)