Thursday, December 31, 2009

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?

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.

Sunday, December 27, 2009

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.

Saturday, December 26, 2009

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)

Friday, December 25, 2009

a not-quite Christmas Eve post


Its not just a question of religion that keeps me from joining the NoN (Naughty or Nice) adherents. I'm one of those people who will look at a filthy, grinning urchin - preferably one holding some crucial bit of electronics that, oh, probably used to hook up to other bits of electronics in some necessary fashion - and say, oh, but no child really wants to be bad.

I'm sure they don't. I'm also sure that occasionally, the evidence may be against me. And I know that some of you are nodding wisely, and contemplating those moments when my own offspring have provided that evidence. He'll have the shortest criminal career on record, said the Grandmere. The Toddles looked up from his delighted recitation, blinked and wisely made a break for it. He'll turn himself in, just as soon as he's committed the crime, she murmured. And in fact, his brother had done much the same.

Dunno if it's naivete or really, really poor memory that has them telling me their tales of evil genius, but hey, I do love that moment when I'm really, really not allowed to laugh. Still, because I'm a loving mother, and because the NoN database would eat my guys aliiiiiiiiive, I propose a different metric: Gets It or Not. Because really, if you are going to be naughty, you must be committing a deliberate act or misdemeanor - and I'm not sure my guys are reliably equipped to recognize the misdemeanors until a frothing parent is looking around for nicely aerodynamic objects. Or possibly until after.

(Again, the evidence may be against me here. Some of which we scrubbed off the walls just this morning, but hey.)

In the hopes of persuading the Powers That Might Be of the usefulness, or at least the entertainment value of this new approach, I offer some evidence that may or may not incriminate my children. Or their mother.

When it comes to this kid, he absolutely Gets It, assuming that "it" involves an inanimate object, written or calculable. (okay, maybe.) But he does not get Girls.

Yes, please note the capital "g" because oh, baby, here it comes: someone has a crush on our lad, and boy does he not get it. It's come in stages: last spring, he noticed that his female friends were much less fun to play with when they were together.

I don't know how to play those games right, he told me. What games?
Games pretending to be a family, or other people, he said.

Ah. And now, here is a girl who is metamorphosing into the more complex Girl, and he's even more baffled. She's my friend, he told me. It just means that she's a friend, he told the classmates teasing him about the crush. Maybe she's looking for more than simple friendship? I suggested. The Eldest looked at me, mildly irritated. She is a FRIEND, he said, and huffed exasperatedly.

Right, then.

To ask whether this kid Gets It or not, you need to first figure out whether he lives on the same sphere as the rest of we mortals. I'm not entirely certain that he does. Or that, if he does, the time and space match is quite right. Or something.

Oh, no! I say to the Toddles, we need to have left four minutes ago. We have to hurry - we have to go. Appalled, I begin grabbing more or less randomly for clothes and shrieking quietly about the lack of breakfast in my mornings. The Toddles, entertained, pauses at the top of the steps and watches.

What are you doing? I say, hitting a distinctly coloratura note. The Toddles looks at me, surprised. You have to go and get your shoes on! Your jacket! Your mittens! The Toddles meditatively strokes his favorite raggedy sweatshirt, and waits. NOW!!! I shriek, and the Toddles realizes: oh.

Before you ask, no, checklists mean nothing. Except to the Eldest, who very much does Get mornings, and takes checklists/maternal notes/time, space and all that jazz oh-so seriously. Dressed and packed up, the Eldest runs around in a near-panic, trying to suction his brother into a jacket, insert sibling feet into shoes, lunchboxes into bags. And his brother grins, loving the new player in this odd, morning game, while I irritate the dog next door. Cheerful ditties and sayings about "ready for the day before you play" merely entertain the Toddles. And rewards are a cruel tease for a child who wanders through the morning, cheerfully certain that all of this bustle is someone else's problem.

(I might possibly be jealous - but then again, I'm fairly certain that the someone else is, alas, me.)

But for all that the Toddles does not Get It re:mornings, perhaps he Gets one thing - he has, he informs me, a girlfriend. Oh, I said. Who? The Toddles grinned proudly. Girl Adorable. She's my special friend. I grin back. I can deal with that, I told him.

The Eldest, bustling through his morning routines, paused, shook his head at us, and kept moving.

Driving to school, late for the nth time, I make a mental note: yes. Boo to NoN - and yes, to my poor, straw GIoN, we're wallowing in the process.

Coming Soon: the Eldest kicks some process tushie, and we all follow him

Thursday, December 17, 2009

oh, la difference kicks some heiny

If you haven't met this blogger yet, you might want to reconsider: I just read her latest post, and it left me thoughtful. And appreciating what a doctor has to do, in the face of a patient's need.

Oh, my.

But I digress. (go, digress. I'll wait.)

I cannot help but muse: one of these years is not, thank heavens, like the other. This time last year, I was wrapping up homemade yumminess for the boys' teachers. It was chocolate chip granola bars last year, and the bittersweetness, the splintering care to teach the Toddles to say thank you, even to the teachers who'd tried, but ultimately failed him. "That was good, the Toddles told me." And, picking my way between pride and sadness, I agreed.

But now, I think: kid, we had no idea.

That was my kid at the Chanuka celebration last week, you know. Mine, shoveling in potato and applesauce with the rest of the pack, singing the funny verses to I Have A Little Dreidel, and thankfully, without the potty humor. Mine. And absolutely, positively safe in a roomful of munching, belly-filling kids. Because the food is safe.

Because the teachers - and the school - gets it.

So, this year we said thank you again, and we did it in style, baby. We did it with sparklies.

The boys made necklaces and bracelets for their teachers, and I had a ridiculously wonderful time talking with them about the colors their teachers wear, what kinds of people their teachers are, and then, oh my goodness about design. Even the Toddles was happy to think about symmetry, and his second necklace was a two thread, three bead design: small black bead, chunky red bead of various types, small black bead. Knot. Switch to the other thread, and repeat. He laid out his beads in advance, considered how best to balance the various shapes and sizes of the red beads, and then patiently threaded and knotted.


And nobody splintered - but my heart was very, very full. For this, as for so much else, I give thanks. Except, possibly, first thing in the morning, when I realize that I have to get the kids out of the house and to the car, and for some reason, this is going to take well over an hour and all of my patience.

But yes, we gave thanks. The Eldest, to nobody's surprise, muttered something about basketball until I mentioned that we could use stone beads. The kid loves stones, filling his pockets with the muddiest he can find, certain that each is enormously valuable and beautiful. He rummaged happily among the stones, and started jamming them on. Um. Not that he shouldn't do it his way, but, well -

I handed him a printout about Morse code. Design, I told him, is code. Sometimes the message is a feeling, or an idea. Sometimes, it's literally words.

And the kid took me up on it. He designed an organdy and cord necklace of unakite, jasper and hematite, of which the stones made perfect sense for my young miner-in-training, but the ribbon was an unexpected touch. And a nice one. And he arranged the stones in a code, to spell out his teacher's name.

And so, we gave thanks. You know, the Toddles' teacher whispered, fingering her necklace, just getting to have him in the classroom is thanks enough. My throat filled, swelling with old splinters and newer joys. I couldn't get the words out to tell her that she was absolutely right.
This year, it feels as if we'd lit our menorah in the midst of memories of desecration and betrayal, hopeful but not letting ourselves rest on that hope. And slept, only to wake and find it still burning, ruthlessly pushing us past sharp memory and into what comes next.

Wishing you all a season of light, joy and shared tables.

Sunday, December 13, 2009

plundering buckets

Of course, there's a story - but most of it is in the letter I carefully didn't write, so I think you're probably up to speed. Fill in my face, trying for calm, reminding myself that if I listen, he will talk, and if I shriek, he'll stop.

(Listen, woman, listen. Oh. And try not to laugh out loud, 'k? Because damn, when my kid decides to get himself tossed out of class, he does some very fine work.)

So, I listened. And I asked him about the teacher's response, looking to see if she gave him warnings (she did), used teamwork to help him change course (yep), and how quickly her head started revolving on her shoulders (inexplicably: didn't). Oh, and how much of each happened before the kid ended up a. in a quiet corner before being b. tossed out and c. talking to the head of the lower school.

Who, to her credit, responded by beginning a revamp of the class that the kid despises. Which I find kind of staggering, and more evidence that the kid is luckier than he knows: I was all in favor of a revamp of the kid. Possibly involving a welder, definitely with some wicked wrench work. Because here's the thing: insofar as I can see, every kid has a quota of Crap You Can Pull, which is dipped out of their Effort You Can Require of the School bucket. And I'm worried about his.

This isn't a question of being a class PIA, it's a question of needs. And this isn't just a question of going to a private (read: teeny religious) school rather than a public one, it's a practical matter. If you have a kid in your class who needs, needs, needs and then some, at some point when you look at that kid, you are going to feel pre-steamrollered. Teachers can give, and the good ones give a hell of a lot. But kids need to give back, too, refilling the bucket - or things can get strained. And strained means that there's less resources left, should you need more, simply because you are dealing with human beings. A long list of needs means that there's less left for that individual to give, because again, you are dealing with human beings.

As I might possibly have cause to know, human beings get tired. Possibly, if you are a mama, that's when you hear that vicious little snap! and begin roaring with all the love that you can muster in the midst of end-of-ropeness. There's a reason why the Short Bus parents talk so much about being tired. But I think about managing 24 kids, their needs and habits and personalities....and shudder. Because to each of their parents, every one of the 24 isn't kid, but rather Kid. And we expect the teachers to think so, too. At the Eldest's little school, we are certain that the teacher must think so. Thus: tired.

We've worked hard to expand the Eldest's EYCRS limits, mostly by being nice people and the best teammates we know how. And we try to refill that bucket by telling his teachers how much we appreciate them, and yes, I'll admit it, by making our by-now famous cookies. (At the Big Meeting before school started, the head of the lower school asked me for the recipe...having been given a tin of these the previous winter. Who knew?) I communicate whatever I can, as best I can, and do a careful if slightly desperate dance between working on the Eldest's interests and maintaining relationships. I actually like the people I'm working with, but it adds an odd flavor to really need them to like me back. In a public school, maybe I could afford to be more of a bitch, or maybe to do less baking. Have fewer meetings.

Maybe not. Because at the end of the day, there's still that bucket, limited in size by the humans toting it around.

So, here's the deal: the Eldest uses EYCRS resources by needing a little extra watchfulness, for his hemophilia. He uses a lot more for his food allergies, which slide themselves into class trips, the Head of the School's beloved squash project, Thanksgiving celebrations, and oh, just about anything Israeli/Jewish and involving food. (Ah, tahini. We meet again.) And he requires more because he tends to feel awkward in social settings, and his response to this is clowning around. Which is lovely in a classroom, dontcha think?

(more on the social thing in another post, but the short version is, unexpectedly: shy)

And oh yes, he uses more EYCRS because he's smart. Not the next Einstein, no, but can do sixth grade math smart (if I explain - okay, look up online - words like "mass," and "factors" to him). It sucks right now that the math problems that he's getting are chock-full of vocabulary that he doesn't understand, or skills that he doesn't have - like drawing a family tree - and so he gets stumped. And frustrated, knowing that part of the problem is something he could do, if he could only reach it. Does his brain fire like that in other areas? I'm not sure. But the kid drew Moh's scale of hardness for me the other day, explained it, and I thought that was pretty flaming awesome.

But hey, I'm his mom.

He's got buds in this wierd, fiery learning thing - a classroom of them, all delighted to learn and alarmingly good at it, in their various ways - and they egg each other on. The school, we're told, is both stunned and tickled. And they're throwing resources at the kids, but still, there am I, asking them to adjust to my kid's quirky levels (because there's never just one level for a kid, they vary by subject, y'know? untidy, that), and drawing on the EYCRS. Because heaven help us all if he gets bored. Trust me on this one.

So when it comes down to it, kiddo me love, you've got too much going on to be pulling more out of the bucket. It's unfair, but that's just how it goes. Can you talk to us, work with us rather than getting wired up and achieving new heights of grinning, PIA kid-ness? We-ell, maybe. The Eldest is blessed with two teachers of an admirable degree of probity and sense of humor, one of whom is openly fond of him. And who tossed him out into the hall. I asked him, she said on Friday, if he could work with me, so that he could make a good choice. I explained that he was not making good choices, she said, and sighed. I dropped my head into my hands. Not again.

I know the answer to the teacher's question: I'm sorry, the Eldest told me recently, but I really just can't. I looked at his earnest face, had seen his efforts to work with me on a calming technique, and I knew he was telling the truth. And it hurt to watch him run out into the hall, jumping and twisting so that his body bounced off the wall, mid-air, land and run on.

He can't help it. We've done testing (more on that later, too), and we know that sometimes, he really can't. Still, the kiddo wants to please the adults, he wants to do right, but it feels good to be ramped up, he told me. And he can't - yet - ramp down without my help, and he certainly doesn't understand why he has to. And I know absolutely and with a fierce pleasure, that the bucket doesn't mean crap-all to him.

And honestly, it shouldn't.

Thursday, December 10, 2009

the email not quite written

I'm procrastinating right now, having sat down 45 minutes ago to write an email to the Eldest's teachers.

Dear teachers, the email should say, I apologise if there is any possibility that I've hurt your feelings. Someone significant who might be cc'ed on this email indicated that I had - or might have - and suggested that I avoid talking to other parents about the possibility that the Eldest is occasionally bored in class. I should have talked to you, instead.

Because I'm not so subtly trying to let the Someone know that we have already discussed this, and that I'm a nice person who knows that teachers are an excellent resource, let me take this particular moment to note that I truly appreciate that you responded to the Eldest's request that you teach a certain subject in a certain way. You rock. Also, thanks for ramping up on the math - and can we ease off now? You know that I know that "bored" isn't necessarily a synonym for "too smart to need to learn this stuff," and yep, the kid didn't know how to solve all of the sixth grade math problems that got sent home with him.

Partly because he doesn't know what prime numbers are - or so saith the Man. Given this, yes please, let's have that meeting to talk about what the kid can and can't do.

And on the subject of what he can't do, thank you for being tolerant while the Eldest honed his newly discovered talents of class pain-in-the-ass. He's now quite certain that if he dislikes a subject (translation: "bored," variant 2.1), then he can be enough of a PIA to get himself tossed out of class. He told me all about the various strategies that he'd used to get himself chucked out, and was very proud. "First I flipped my chair over and sat on it, upside down. THAT's funny - it's an antic, you know. Then, I waved my hand hard when the teacher asked a question, but when she called on me, I said in this voice (oh, that voice), "I dunno." And then? I did it again." It is my hope that he now understands exactly how unacceptable this behavior is, and that while he regrows a variety of maternally-removed limbs, he appreciates your tolerance all the more.

Again, my apologies for checking around to see if other kids were a. bored and b. practicing the fine art of pain in the assness. I should have realized that asking such questions might imply that I was also considering heating up tar and gathering feathers - in truth, we're a feather-free* household for the foreseeable future. But I promise to let you know if that changes, and in the meantime hope that the above note both indicates that I honestly think that you are wonderful while demonstrates to the Someone who beheaded me telephonically this morning, that I appreciate you and yes, I did go and talk to you before consulting other, potentially feather-owning parents.

Sincerely and humbly apologetically, Me.

or something like that.

But since I haven't entirely de-snarked the above, I've been reading this thoughtful article on healthcare reform, by a local doc with a nice little pulpit. And then posting the link.

But having done so, I'm out of excuses and oughter go write that email. Sighhhh.

*thanks to the Toddles' feather allergy

Monday, December 07, 2009

scripting a day (or two)

The holiday season has begun. Happy hols to all, and to us a merry appointment.

Okay, appointments. Because, yep, this is also the season when my lads make the rounds of their various doctors. The allergy team (twice, in two cities), the hematologists, the coping clinic, the various labs and clinics that administer the tests that need to be done before the actual chat with the doctor (because the "let's test, and see what turns up and THEN talk" line is not so very useful when you have to wait a month or six to have an in-person conversation), and oh yes. The pediatrician.

Last week, we began. Skin testing for the Toddles on Monday (two boys! tiny room! no scratching allowed!), and pharmacokinetics* for the Eldest on Wednesday. And while the skin testing was mercifully brief, the 'kinetics took - always take - all freakin' day. 7.30 am we put in the pair of IVs, 3pm we staggered (okay, I staggered) out to the elevator. But if I could've scripted them, the two days could not have been better.

We walked into Monday after the Eldest took a firm stance on the question of skin testing: it is, he shrieked, unbelievably painful. He handed out protest leaflets to the Toddles, and had to be taken aside, firmly, and told that it is not okay to freak out the kid before testing. Not going to help. Just going to make him scared, and fear = pain. Got it? Begrudgingly, the Eldest got it.

And forgot it.

I prickled my nails on the boys' backs, demonstrating the test. A stomp and roar later, the Eldest had been collared and exiled to his room, there to brood on the unfairness of the mama and the cruelty of the medical world. And the Toddles, close to tears, snuggled with me and read a book about a kid afraid of needles. I'm going to do that, he told me, pointing to a page. I hugged him, and braced for the morrow.

When the Eldest blinked, looking up from his book. Are they going to do the skin testing soon? he asked. His brother gave him a fabulously incredulous look. The testing is done, he said. And it didn't hurt a bit!

In the corner, I did not smile. Nor did the corners of my mouth twitch. (heh)

And then it was the Eldest's turn.

If the Toddles shone on his day of trial, the Eldest was allowed to stand in one spot, while Children's flung glittering confetti at him. Because this was the day when the Big Apple Circus clowns visited the infusion/boring long test room, and taught the kid a magic trick.
And lo, there was delight.

Where there was a paucity of delight, there was a splattering paint machine, a child life person to keep the paint a-flowin', and nurses who really did not care if we left paint fingerprints on, oh, everything.

and lo, art was made.

The artist in residence stopped by to keep the creative juices flowing, but she was asked to wait a bit: the boys were busy eating the special batch of allergy-friendly french fries that the cafeteria's head chef had made for them. Because, y'know, one must have priorities.

Happily, she understood that. And waited until oh, there were rich watercolors on thick smears of crayon and happy paintbrushing boys.

Oh, had I been able to script this day - this pair of days - it could not have gone better. Children's shone for my boys, and they gleamed right back. We are, I know, absurdly, lushly lucky in the hospital(s) that care for our boys. The reality is the testing, and we'd adapt to that because we must. But the gift is being able to sort of revel in that reality, and to roll around in all of that joy and caring and luxurious resources, IVs, hives and all.

Because it is, after all, the holidays....

* the goal of this test is to see how the Eldest is using his clotting meds. For years, he's had an oddly fast and irregular (but reliably irregular) way of using up his meds, with half of the dose vanishing in 30 minutes, then another half in 2 hours, and so on. By testing regularly, we can adjust his preventative treatment and bleed management to suit him. It's a very good trade-off for a serious PIA day, because in a pinch, I know exactly how to calculate his ability to handle the wallop du jour.

Thursday, December 03, 2009

feelin' the lovedness

mama: rant, rant, rant, roar

(pause to be certain that child is listening)

mama: rant, roar

(some several quiet minutes later)

mama: sweetie, do you know that when I'm frustrated with you, I still love you?
Toddles: oh, yes. And when you are roaring at me, I stop listening to your words, and I only hear the lovedness.

(very short pause)

mama: oh. I'm glad to hear it?

The Toddles nods firmly, and kindly offers a hug. Setting her urge to splutter (firmly) aside, the mama takes it.