Wednesday, March 30, 2011

smelling comfort

Okay, so there's a virus going 'round. This is new? I have kids, they spend time with other, kid-shaped persons, therefore we live in a petrie dish. There is always, always something going around, solemnly heralded as 'a really nasty one.'

Because if your kid gets it, and the carpool crumbles and the work thing stops dead in its delicately, fragilely balanced tracks, well. It done stopped. And catching up is something that people do in lieu of sleep, insofar as I can tell.


Last night, the short one came into bed with us. I was already tossing and turning a bit - had an odd sore throat, bit of a stuffy nose. So, the little fellow climbs in, rotates to a finely judged 45 degree angle, and this time I do not wait for the feet to hook themselves, delicately, around my throat. I get out, hoist my pillow, and go find the empty bed that the kid has left for me. Done.

Tonight, he returns. Chattier this time, wanting to tell me about how he can feel his tummy when he breathes, and he's not sure that is a good thing. Water? oh, yes please, he says, politely. Blow your nose? Oh, that helps! he says, and is delighted by the discovery.

Forget minutes later, he is drinking determinedly, trying to keep things going down - rather than up. But nope, up they come, while the Man and I are still coming to grips with the situation, and splash! go many unmentionable things across the floor. On the bed. On, of course, the child.

Bathe the child. Shoo the sib and his father down the hall. Strip the bed. Splash vinegar cleanser liberally. Mop. Remake the bed, tuck the little in, and breathe. But you know what? The place still smells like sick, now overlaid with a heavy aroma of vinegar.

Mop again. And again. Realize that vinegar now had an association of sick. Pause.

One splash of tea tree oil on a rag, and now the room smells like a warm garden, with an almond tree growing in it. Most of the almonds are still green and fuzzy, and a tiny lady with a narrow, unlovely face is calling me for some mashed bananas, warm and sprinkled with carob. Somehow, this flavor is exotic and delicious, and sitting in here kitchen, I am content.

My Babcia always smelled of tea tree oil, which she swore was antibacterial - good for cleaning, she told me. That she was proven right is almost incidental tonight, when the scent carries comfort as much as it does hygiene.

it's okay to be different when...

A few weeks ago, I showed Beauty and the Beast to the boys. We're too lazy to have a TV - or rather, to police one, sneer at it, and usefully deconstruct it for the kidlets. (literally and otherwise) But once in a great while, we creep out of our lazy Luddite cave to try something like this. As predicted, the Toddles bolted for the futon, hid behind his father - and eventually tugged the Man up and away from the overwhelmingness

Could we have a story, instead?

But the Eldest was enthralled. Wanted to talk about why the Beast was drawn that way, so that he's scarier looking there and why Gaston eats all of those eggs - is he serious? and just - stare. And stare, frowning slightly - then hugely relieved - then curled into me, waiting. Oh! he said, watching Gaston fall into the castle depths. I wasn't expecting that. And grinned.

The next morning, when the Toddles crept out of hiding, the Eldest was still locked onto the movie. And, apparently, so was his brother. Forget the Beatles, forget the Black Eyed Peas - and even They Might Be Giants. No Little Richard or Benny Goodman - we've even sworn off Trout Fishing in America for now (not for long, kids - please? not for long?), while the Beauty and the Beast album is on endless loop. Play the Beauty and the Beast music! the back seat insists. Go get the mob song - it's missing from the iPod! 

And, don't sing along, Mum - you are getting between me and the words. 
Right. Sorry, kid. (hrrumph)

Eventually, the cross-eyed stares melted into something else.  By the nth repetition of the mob song, the shorter one was looking thoughtful.

Why are they afraid of things they don't understand? the Toddles asked, and ruthlessly, waited for my reply.  I tried to explain about how things in the dark are scarier than in the daytime, things you don't know can be scarier than things you do know - or can figure out - and he weighed my reply carefully. That makes sense, he conceded.

Actually, I'm afraid of Gaston, he confided. The Beast has scary drawing, but Gaston really *is* scary. 

I nodded. Deep, soul-certain self-centeredness is absolutely scary. I told the kid so, and he looked sad. Yes, he said. That's why we learn about derech eretz, right?

The next day, the Eldest passed by the mob song, choosing instead Belle's theme song. He listened to it once, twice, brushing off my rather paltry 'different but special' routine. No, Mum, he said, suddenly. Listen to it. They [the townspeople] call her odd, and strange, and say that she doesn't fit in. But it's not until Gaston says that he wants to marry her that they say that she's different but special. And that's only because they like Gaston, see?

I did see. Difference is only special if someone is willing to value it - or you.

We don't like what we don't understand, eh? I suggested. In the back seat, a kid nodded. So, perspective matters? or understanding?

Both, he told me. Firmly. He had reason to know.

Monday, March 28, 2011

toxic information: warning, may not be extractable from brain

Some days, it's just not worth it. You can do everything right - get an allergist to work with you, talk to your kid's school about a 504 plan, have them talk to your kid's doctors, and even buy a cute backpack for your kid to take to school.

Oh, and offer to pick up treats for a school party, because hey, your child might have allergies, but kids should get to celebrate, right? And when you can set it up so that everyone celebrates together, with allergy-friendly yumminess, well. You rock, mama.

It's just too bad that someone forgot to explain this to the other parents.

While I'm torn between an urge to march on down there and start lecturing - and an urge to screech - the truth is that I get it. Let's start with transparency: for the people outside of a process, especially a bureaucratic one, it's really really easy for the process to seem biased, sloppy or just plain wrong. Is the child really that allergic? I wasn't there in the 504 meeting, but a doctor was involved. Was the child correctly diagnosed? Not being an allergist, I'm really in no position to say. Are all of these measures necessary? Oh, goodness knows, but again: not an allergist. Still, in our experience, a small portion of the measures taken to protect our children come from anxiety, or a need for certainty and an extra margin of safeguards. A large percentage comes from medical need, as described to the parents. And there, folks, lies the grey area. Doctors hate questions like, 'is this safe?' because the wrong answer can leave them open to lawsuits. Parents hate undue risk because the wrong choice can mean any number of scary things. So. Schools take on liability, parents have taken on a whopping dose of fear - which means that the doctor's role here should be all the more reassuring, as s/he can provide perspective.

Nonetheless, in this poll, 71% of respondents were certain: the school was wrong. And trying to spring the unfairness on the parents. Why are we being kept in the DARK? read one protester's sign.

It makes me crazy to think about how tiny the opportunity is for lighting that darkness. Once folks apply sharpie to oaktag, the opportunity for reasonableness, or even for education is essentially over. When the school's spokeswoman talked about the 504 plan, the legal requirements and process that the school must undertake to accommodate a child, I don't think people were listening. "Rights" ring more purely than legislation. No wonder that Wrightslaw has such an intense section on advocacy, and how to do it. I've read it, practiced it - and still, my success as an advocate has always depended on who is listening. People who are open to information, flexible and willing to be partners? Love you all. People who have already decided what is true and what is needed? A trainwreck, aimed right at the kid.

"You can't take peanut butter and jelly, or any other right away from my child," a parent screeched. And her message echoes through the school hallways. In a less controversial class, classmates are protesting the limits set for a second peanut allergic child.  "They say, put me in another class," said the little boy. "So that they can eat peanut butter."

His face is bewildered, his mother nearly incoherent. Facing them are passionate, appalled parents, explaining that they don't want to be unfair - but that a child so allergic as to require accommodations affecting the class? Should just stay home.

It's unutterably sad. When did rights mean get out of my way, I want to live my life the way I want? When did this narrow indignation usurp generosity of spirit, or a sense of flexibility, possibility - or heck, kindness? If we could only back up the tape in Florida, I'd sit down with those parents, and say, hey. Let's try this: take a kid who has been shut up at home. A kid who has been inexpressibly lonely, and who would love to leave their bubble - but is probably scared. And let's say this to that kid:

And that's it. Instead of no, you say yes.  You say, we can instead of mine, or I won't. Maybe, wisely, the school says it first, and helps you figure out how. And then? Together, you take the kid who was shut out, whose school told him to go away, and then you open the door. Come on in, you say. Because it really is that easy.*  And then, you show him that you get it.

Maybe you are in preschool, and all you know about allergies is that they make you sick (see the rash?) and that sometimes bees are involved. Oh, and thermometers. That's plenty for a little kid, who doesn't really need the science - they just need the general concept, plus help in being a good friend.

Welcome to lunch, the little kids said, in their own, pre-literate ways. Please don't be that sad, sick kid. Be this kid, instead! 
(for a four year old, that's one seriously happy face. Plus kipa, fyi) Be this kid! Be laughing! Or, says another child, be this kid!
Hair, curling everywhere, arms as wide as the world, and a smile so wide that it's taking over the face - and needs an extra set of eyes to twinkle alongside it.

Welcome to lunch. We're so glad that you are here! they said, and the Toddles sat, proudly, at his special, decorated table. His table was pulled up against the other kids' table, and he sat so carefully. Shining with pleasure. Learning how to be a child - how to be That OMG Allergic child - living in a world without bubbles.

And laughing.
You can read the school's puzzled response in HuffPo (hint: ADA? not so familiar), an opinion piece (also, not so much with the ADA), this pithy response or this one. Or you could cut to the chase, and go straight to this call for everybody to just stop, and take a deep breath.

But I would rather that you thought about this: when people aren't educated about food allergies, this is one thing that can happen.  Death threats were made, and the child's parents chose not to keep her in the school. That's one outcome. And this, sadly, is another. An educated peer - an aware adult - someone could have asked the question, is this safe for you? And we'd have one teenager, sans coma.

* and if you are having trouble, there are wonderful resources out there, like this one:
**but you can laugh about it. Like in this cartoon.

Tuesday, March 15, 2011

say ahhhhh

and hold very, very still while the nice lady with the long stick with the cotton bitty thing on it kickstarts your gag reflex. Nice try! Okay, so from the top: aaaaaahhhhhhh?

Um, said the Eldest, that's enough for now. But thanks.

The Toddles, by contrast, beamed. You want the cells in my neck that the virus got into, so that you can figure out exactly what virus it is! I know! (Note: the kid's favorite book is Cell Wars, because knowledge is power in my house, people. He's been carrying it in his backpack for months now, though, which I personally think is taking the matter a bit too far. But clearly, the kid's been waiting for his cue.)

The Eldest looked over. Your body already knows what type of virus it is. She doesn't, is all.

The Toddles refused to be unimpressed. AAAAAAAAAAHHHHHHHHHHHHHHHcough

strep A, people. Time to play our pediatrician's favorite game: Which Antibiotic? Because the Eldest has met them all, and oh, his immune system knows what type they are, too. Sigh.

The game winner was, btw, a drug that required the Eldest to take six times as many doses of medicine as his brother. And each dose was three times the size of his brother's, to add insult to injury. None of you understand what it's like, he wailed - right up until I ended up on the same antibiotic, same regimen.

Good work, Mum! he applauded tonight. Good job killing off those bacteria.
I bowed, extravagantly. I do, after all, take my laurels where I can find them...

consider the happy sleepy juice

which nobody would ever let me take home. Just a wee dram of barbituates, darlin', to settle yerself after dinner? No?


The Man and I are sitting here, thinking about our upcoming parent-teacher conferences. No, dreading them. Considering whether we're going to accept the Man's ability to discover an essential meeting - at work - and admire his ability to be crucial, elsewhere. Because the Eldest has, over the past few years, refined and expounded upon his understanding of a world that just does not quite apply to him.

Like, oh, the classroom.

Forget buckets, the kid says, who the hell are all of you, and why are your faces between me and my book? Shove off.

And, being the Eldest, he's probably offering you a winsome grin, to soothe the shove. But still. The kid has talked his way through class, called out - or been unaware that there's this shoulder joint thing, and you rotate, so! and the elbow - yes, so - and the hand? maybe? Or not. (oh, well, says the Eldest, and tries the grin again.) He's walked out of the classroom, certain that he can simply avoid a lesson, should he so choose. Or, that - they don't need me in there - he can interpret his presence as optional. And offered your astonished, sputtering self some yarn, rich with his time and genuine liking for you, o teacher. (hopeful grin.)

Oh, it's going to be a fun, fun parent-teacher conference. And, in case you were wondering:  the teachers are crackerjack, the school is supportive and the kid is miserable. When he's willing to admit it, that is. Which means that the Man and I are wavering between saying useful things like, wha'? and ohdeargah, and looking for a scapegoat.

Enter, the scapegoat.

Consider this study in the journal Anesthesiology, this news article, and this panel's thoughts regarding anesthesia in young children. No causal link has been shown - and that's crucial to remember when you are reading the next bit -  but the study found that children with 2+ exposures to anesthesia, before the age of 4 yrs, were 59% more likely to have learning disabilities than children without 2 exposures. Kids with three or more exposures to anesthesia? 2.6 times as likely to have a learning disability.

There's lots of unanswered questions, like the role of stress from the procedure, the specific condition requiring an anesthetized procedure, etc. But animal studies confirm that anesthesia has an effect on neurodevelopment.

So, go on - ask me. How many times was the Eldest sedated before age 4? And if I bring that up at the PT conference, will it do us any bloody good whatsoever?

Answer: no, given that bloody good is herein defined as that which gets the kid out of this hole, and helps him stop banging his head on reality. But hey, nice to have a scapegoat.

Sunday, March 13, 2011

this week's lesson

sometimes, being reasonable just gives the other guy more space in which to yell.


Friday, March 11, 2011

MA: bullying & derech eretz

Driving to preschool, listening to WBUR's Morning Edition. Marty Walz is being indignant about the failure of Massachusetts schools to comply with the new anti-bullying laws. And the Toddles is rapt.

Do you know what she's talking about?
he blinks. No. But she's not happy with the schools.
Right. She wants them to work on stopping bullying, which is when you make someone feel bad about who they are.

We work through some examples of targets - a Muslim girl in a headscarf, a Jewish boy with a kipa, a kid with food allergies, or when i went to school, a kid with glasses was picked on for having to wear them. The Toddles shook his head. Maybe this is why all of the Jewish kids should go to school together, because then they will all be  the same? 
I grinned. And are they the same, at your school? 
He paused. Shook his head. Looked worried.

Yesterday, Y made me feel bad because of an accident that I did. Is he against the law?

That's a kid getting mad - and there's a difference between being mean to someone, over and over and over, getting other kids to be mean to them, too - and a kid getting upset. Kids get upset! It happens. The difference is the culture of the school, like Marty said. Your school thinks a lot about derech eretz, so even if a kid gets angry once in a while, the teachers are helping them learn how to be good, caring people.

The kid thinks this over.

Then it's good that you changed the school, he says, decisively.

Absently, weaving through traffic, I realize that something didn't quite parse. Wha?

My first preschool didn't show much derech eretz. So it's good that you changed to this one.

Tuesday, March 08, 2011

pre-meeting shivers

Okay, so I think I've been doing this advocacy thing for a little while now. The nice thing about it is that I get to have the same meeting, over and over. Which is also the less-nice thing, because some days I do rather think that hello, world? time to get it already. Hemophilia means X, allergies mean Y (except when they mean Y squared) and don't confuse them with asthma, which is, well, something else. Sheesh, people.

On the other hand, when I'm working my way through my third virus in three weeks, routine is good.

blah, blah, blah, did I mention that I hate talking to groups? look, cute picture of the kid, timed to buy me some breathing room, and yes, everything that I say pretty much translates to please, please, please help me make this work. Or heck, help me understand how to help YOU make this work. And did I mention please? I bring photos, I tell stories, I bring props - oh yes, even the muddy soccer ball - and do everything short of wearing sequins.


I try too hard, I know. And I over-prepare. Oh, dear gollies, I do. I talk out loud, practicing possible directions that the conversation could take, because oh, I am not a negotiator. I'm a burbler, an earnest leaner-forwarder, and a gaping, gasping person hunting for rabbits in my bag of negotiating tricks. But I try anyway. And I get better at the meeting with each rep.(hello? naive much? a tetchy bit of my brain will shrill. Didja forget getting kicked to the curb?)

Which is why tomorrow has me twitching. Medical needs I get - being earnest and a good team player helps there. Having the other teammates be serious mensches also helps. And oh, we sailed right through the meeting about the Toddles' allergies. (more about that some other time) But tomorrow? Tomorrow we talk about the g-word.


I hate that word. I'm almost nodding along with Malcolm Gladwell on this one: gifted? really? As in past tense, as if that's the entire, smug story? As if being smart is a prize you win, a thing of blind luck, undeserved and shining. Bullshit. The reality that I see isn't a gift, it's a painful irregularity.

In general, I think that kids are lumpy. They grow, they sprout, they soar, they forget to take in their breakfast dishes. Take a kid who has sprouted so dramatically in one area, and he's even more uneven. Jaggedly so, because he knows - the Toddles can see where his skills are mismatched, and he tells us so. Sadly, the adults aren't so clear of eye, and we've fixed our expectations based on the best that we see - which we're defining, foolishly, by accomplishment, and assuming is representative. And we push the kid to live up to that standard, waiting for him to finally get with the program, but he can't - he's too busy getting his nose smushed into our frustration. If you can do X, why can't you put your shoes on the right feet?  

And it's a funny thing about kids, but it's true: they don't want to be the bad kid. Not so fond of being the kid in trouble. Develops perfectionista habits to avoid his weak spots, glares at adults trying to lure him into the possibility of doing something that he considers to be appallingly sub-par.

Sub his par, that is. Or maybe mine. Both?

gifted? ha. gobsmacked is more like it. Codswalloped, because different is hard. Offered the Holland=difference narrative, Rob Rummel-Hudson explains: hard. Hard, especially when you are supposed to be gloriously cruising, offering a target for others - and yourself. (The nice thing about being gobsmacked is that you might be able to design a really inventive catapult for smacking yourself down from that pedestal.) At least I got to float in a relieved cloud of thank gah it's not aspergers or oh I don't know what and now he can save da world!  for all of a week, before the kid came home and wept. N says he's not my friend anymore, because I'm smart and he's dumb. N was, of course, the first friend that the kid had made at that preschool, an older kid, wise in the ways of Bakugon.

But everyone is good at different things, said the Eldest, trying to comfort a soggy Toddles.

Measure the kids, and you are defining inequalities. Creating them, even, according to Rosenthal and Jacobson's work. (see here for more)  Design a system to give them what they need, and you find gifts sprouting everywhere. Because, after all, how exactly do you define a gift?

I define it by me, said the Eldest. I am a gift.

And he's right. Ah,  says my internal cynic. But without the label, you won't be able to fund your utopia. And she's right, too. So, then, the meeting.

So, do you want to kick us off by talking about why we are here?
And I don't know what I'll say. But I know what I'd like to say:  meet my zebra. He's a funky, intuitive leaping kid - and yes you have that other word but I hate it and can we maybe use a label that won't have me spitting cat pee and sand cocktails? Zebra, zebra, zebra. With pink butterfly boots. Quirky, funky, definitely unexpected, stripily delightful zebras. Who might just arrive holding their own, lumpily gouache yardsticks. If any.***

And I don't know what we do about that. But I'm pretty sure that 'happy' should be in there, somewhere.

And then I'll do the awkward silence thing, because hey, you know what? I'm just waiting for the part that gets scary. I was hissed at by a mom at a kindergarten event at one school, and glared at by others, so yeah, my working assumption is that people hate the mom-of-gifted-kid. Her ego is taking up more than it's share of oxygen, and you just know that she's got Quadratic Equations For All bumpersticker. That she is certain that her child is better than yours, and she's got the testing to prove it. So this meeting won't be about advocacy, it's going to be struggling to persuade people that I'm there to work with them. That I'm really not there to demand that we all admire my kid's marvellousness, while handing over the keys to the academic candy store.

This isn't going to be advocacy. It'll be apologies, self-abasement, hopeful questions about what they already do, what they already know. And then, maybe some advocacy. Gently done, because I won't have any street cred here. Because, come on? What kid can do exponents at this age - really? I've just got to be making this stuff up. I am mom, therefore he is brilliant, right? In fact, yes; in a recent babycenter poll, 71% of the parents who responded said that their kids are gifted. (but not lumpy?)

Oh, crap. Past tense, gift. A kid who has gifts, stars shining down upon him, providence in a pocket. So to be effective, I have to show him to be flawed, lumpy, uneven, fragile? And that somehow, that his fragility is greater than another child's, because he's - oh. a zebra. Ha. Or not.

You've done this before, right? I'll say. Help me understand what works in the classroom and what doesn't. Tell me what to advocate for, I'll be saying. Because even after weeks of visiting schools and interviewing directors of admissions and reading and reading and yeah. That. I don't know.

Oh, and -


***Got hoofbeats? say the ER docs, look for horses.

Saturday, March 05, 2011

perception and timing

One night, told to clean up the - ergh, fkmebloodyLego - bits and pieces in the hallway, he wandered around, decoratively, and then came into the kitchen to be told off. Looked at the mama, considered the angle and degree of froth, and told her, I don't think you are really this angry with me. You are frustrated with me, but you are really upset at Daddy, who didn't tell you when he's coming home. I froze. Yes. But do you understand why I'm not happy about the tiny Lego on the floor? That it hurt when I stepped on it? The kid gazed benevolently at me, and wandered off.

I know that you want me to, drifted back into the kitchen. But I just - can't. There's too much for me to be able to start on that.

What? Oh.

Wisely, this was the moment that the Eldest chose to give the mama a hug. 

Wednesday, March 02, 2011

hot. me. cold. oh.

Somehow, I thought I was being efficiently grumpy about the last virus. You know, the Virus That Ate Vacation Week, while I worked on sitting upright, and the boys constructed new and exciting Lego machines that decapitate and/or catapult things. Except when the Toddles took a break to contemplate poison Rice Krispie treats. (I thought he was thinking about the egg in many rice crispie treat recipes, but no. There was something about ice, possibly dirty ice contaminated with bacteria, and then also the poison, but I'm unclear. Hopefully the virus took notes)

The Virus That Ate Vacation Week got extra, super duper points for showing up right on the heels of the Virus That Bulldozed The Mamas, which romped through the school, knocking over mamas left and right. Oddly, the children were (mostly) immune. But hey, points for the bulldozer virus: I spent the week before vacation slightly dazed, muttering things like I can't be sick now - the children are coming! the children are coming! must. accomplish. things. ergh.

Somewhere in the middle of this, the Toddles visited the Eldest's elementary school. There was tea, there were other parents, glaring at the Toddles, who was essentially running his own Sumoku game while I worked on sitting in the chair (in. chair. sit. hot. me?) and we all waited for the screenings to start. 

(playtime! said the nice people, and the parents stretched their mouths in a smile-ish way)

Hey, I didn't teach him multiples of whatever number that was. Didn't y'all notice the kid correcting me on my fours? No? Does it help that he pulled the game out and decided to bring it - but I suggested that we bring a nice book instead? No. Right, then. You know, if you hold the glare for a few minutes, I'm going to have some really entertaining chills during the head of the school's fireside chat thing, and possibly even say any number of not-quite coherent things. None of which I'll remember later. You wouldn't want to clobber the viral mess o' mom in the parking lot, right?

(hot. me. cold!) (oh, crap.)

Tomorrow, of course, is the big meeting with the school, to talk about the Toddles' educational needs. And don't ask me what they are - I don't really know. But we've got a lovely, crackerjack learning specialist coming along, who played games with the Toddles for hours and hours. Mostly, I have to sit there. In the chair. Me and the Virus That Was Just Plain Repetitive.

You look tired, said a lovely rabbinic person. I nodded, hugged her (oh, cripes) and then went home to spend a night shivering. (hot. cold. me. hot. waves. thermostat?)