Tuesday, December 13, 2011


a glimpse into the Eldest's autumn reading list, courtesy of the wonderful Evan, at the main branch of the Cambridge Public Library. I note, gratefully, that he didn't include anything about earthworms, or the build-your-own spaceship books.

But then again, the game's not over yet.

Wednesday, November 02, 2011

oh, those crazy kids

No, not mine - the ones at Columbia. They built this crazy slinky meets seesaw, with a dash of park bench and super duper kid pirate cave. I very very rarely regret leaving NYC, but if the boys and girls at Columbia are letting people come and play with this one - well. I might just consider a faint wistfulness.

Mostly, though, I want one of those for my living room.

sitting next to me, nursing his third bleed of the month, the Eldest nods a decisive approval. Oh, yah.

Monday, October 31, 2011

no, I am *not* here

So, if I did a "no, really, I'm still alive, see?" post then I'd feel all kinds of obliged to actually catch up on things that I didn't write about. The hell with that, I have dishes to wash. Instead, let's just jump in.

oh. yes, I probably should have mentioned something about the muddy puddle. if its any comfort, the Giggles had already dipped an investigative sneaker in, considered the result, and then tromped firmly on through. (No, really. Go check the playground on the kid's school - you can't miss it.)

Meander done. Next?

Right. Next is the bit where I get all fired up over the prescription drug shortages. Or maybe the enthusiastic gray market that is making hay from the shortages. But it's happened before (wait, that makes it okay?) so there's no shock here. Just tired familiarity.

When the Eldest was born, there was a shortage of recombinant factor VIII. (Translation: not-from-human clotting protein needed for hemophilia A.) When a new baby popped up with hemophilia, we all went hunting in the hospital pharmacy for a recombinant brand that made doses in small enough sizes. If you found one, hooray! A new baby got a new era drug, and you stuck with that pharma company until the market (ptooie, ptooie) opened up and gave you options. Some day.

And yeah, there was a gray market. Biological injectibles were bought or stolen by goodness knows who, kept under goodness knows what conditions, and then sold at eeeyikes prices. Of course, if you don't keep a biological at the right temperature, it will lose potency - but hey. There's an excellent book about the pharma grey market by this clever lady, here. For those of you who cannot be bothered to amazon it, Katherine Egan's book is described - better yet, summarized - in an article found here.

Note the date. This is old, old news. Or is it? According to a sensibly written report for the HHS, it's an ongoing issue. Which is perhaps less exciting than the fresh, horrified headlines about shortages of life-saving cancer drugs - by contrast, we Imperfects are among the very few who care about the shortage of the faux old feet flavored drug (aka Amicar), our fellow bruisers who care about the shortages of desmopressin (used to treat vWD). And, were I to blithely go ahead and let an orthopedist remove large, inopportune chunks of my wrist, I'd certainly care a whole helluva lot as to whether the hospital was buying my diazepam from the back of some guy's truck.  (See Egan to find out if I'm kidding about the truck.)

So, hooray for Obama's kick in the pants to oh, everybody and the FDA. A hearty waving o' the pom poms to the FBI for looking into the current gray market, and offering that information to the public. Good to know.  And a heartfelt three cheers for Rep. Elijah Cummings, who is pushing the issue in Congress. Apparently, he is doing so after receiving a letter from the mother of a child affected by the shortages, thereby proving that he not only reads his mail (or hires staffers with a nose for the important issue), he also pays attention. And oh - don't overlook this, because it's got to cost him potential pharma campaign funds - acts.

Good for you, Rep. Cummings!  

Tuesday, August 09, 2011

hungry thoughts

Today is the 9th of Av, a day of fasting and mourning for the lost centers of Jewish holiness. There's a whole constellation of concepts that go with that, but I'm going to point you to Eicha and leave it there. I'm too hungry to do the subject justice. Instead, all I can think about (4.08 pm, fast ends and 8.56? 8.57 pm? so that's what, 4 hours and 49 minutes to go - unless it's 46 minutes and I should really look that up which means that if I can get through feeding the kids dinner then it ice cream a couple of hours later and damn, my stomach is gnawing on my  collarbones) is food.

We've been eating peanut butter around here, every since the Eldest was veeerrrry carefully fed pb in a hospital setting, surrounded by a group of people who were only the teeniest bit disappointed when nothing happened. As it happens, when you don't grow up with peanut butter, it's a tough sell. Sticky on the roof of the mouth, a sort of strong taste that you've already been taught is dangerous, and now? now you should forget that and fall in love? Instantly? Um. Guesses as to how this goes?

It might help if one's mother lit up more at the idea of pb&j. But I'm frankly a little ooked by the idea, and me, I'm holding out for the barley allergy to go. I want my Vegemite. Peanut butter + toasted sesame oil, soy sauce, a leetle vinegar and a bunch of garlic, maybe some pepper and water and stir...now, you are talking. So, talk to me about peanut butter when the sesame allergy goes.

Clearly, now that we've kicked a couple of allergies, I'm turning into the demanding type. Either that, or peanut butter has simply never been all that central to my world. Until we discovered PB&J cookies. Gluten free, egg free, and nut free (if you can find a safely nut free peanut butter), these are delish. And pretty darned quick, too.

Our Imperfect thanks to rae1954 and eHow for the (slightly adapted) recipe:

PB& J cookies

1 cup peanut butter (smooth)
1 cup sugar
1 Tb soy flour (or other high protein flour)
2 Tb water, plus more as needed to get a workable consistency.
Jam of choice

Preheat oven to 350F. Dump all ingredients (except jam) in a mixing bowl. Mix, adding water until the result will form a ball when rolled between your palms. Cover a cookie sheet with baking parchment, or spray with cooking spray.

Drop balls of dough (roughly 1 coffee scoop, or 1/4th cup) onto cookies sheet. Use your thumb to make an indentation in each. Invite the kids to drip a wee bit of jam into each thumbprint, and take photos.

Bake 16-18 minutes, until slightly browned. Cool on cookie sheet for 5 minutes before transferring to a cooling rack. Consider the possibility that PB goes with a slightly caramelized J, and that other versions of this lovely combination are worth tolerating - conceptually, if not in practice. They are, after all, not that far from a fairly delicious truth.

Monday, August 08, 2011

strategic summer snarling

My goal for this month is to wear a mildly humorous, distinctly wry face when asked, so, how's the summer going? Last month, I managed a less than slightly desperate look, and when asked, offered practical demonstrations. Or loan of small children. Over the course of the month, the Giggles learned what his older brother already knew: when the mama has that wild look in the maternal eye, it's a really bad time for small Lego to be underfoot. So tidy up. Tidy it all up.

It is actually possible that the best parenting that I did all month involved time-ins. The Eldest was fined with three days of time-in (a.k.a. helping the mama), and learned to stack dishwashers. His mama-placating strategies took a big jump forward when he shared notes with his fellow inmate, and learned that the Giggles had been instructed in the art of cleaning the dryer's lint filter.

Together, they made a potent team. 

The lads still failed to understand the whole morning, get up and brush teeth and put on clothes business, but hey, they can splash in every single puddle in our perma-construction site of a block. Because they can do the laundry. And they can now eat their weight in fruit, if they like, with a solid 42% childsworth of cheese and corn thins. Because they can wash up.

Well, they can. And will, if there's sufficiently terrifying maternal incentive in front of them. 

i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. starting right after dinner.

Thursday, August 04, 2011

aim? ball seventeen?

Note to self: throwing a ball at a small person's bat is a lot harder than it looks. But hey, it's a heckuva lot of fun to say, authoritatively, okay, kiddo. Now, you have to keep an eye on the ball...

Heh. As if I know anything about the subject.

Tuesday, July 19, 2011

Pax! Pax!

enter, the peas.
 Three types of them, to be precise - but the specifics of peadom were irrelevant next to the joy of the boy collecting stuff. Sigh.

No, wait - I lie. In truth, we love our jaunts out to the farm, especially this lovely local one. Getting ourselves out of the house takes a crack bunch of sheepdogs right now, and occasionally leaves me hoarse and gasping words that I really would rather the boys didn't learn. But then we're out, and a zip down the road from this quiet greenness, a wisely shaded picnic table, and this:
 In the field, the boys stop grumping about having to brush their teeth, there is no Lego to divert them to absolutely essential something that must come before changing out of their jammies. And I try not to gape at the idea that all of this joyful, careful focus is happening over - peas.
Yep. Snap peas, sugar peas, snow peas - and now? our peas.

What on earth will I do with them all?

Sunday, July 17, 2011

did someone say go?

Somehow, speed and this oh my gawd, it be hot doesn't seem to go together in my eyes - but the boys seem to operate according to an entirely different set of specs. Which would explain, come to think of it, oh so much.

A couple of months ago, we were given a hand-me-down bike. Gig fell in love with it, mourned when it was too big, and reluctantly allowed the Eldest to sit on it. Briefly. When removed from the bike, the Eldest screeched bloody murder - the bike was too tall for him, also.

The Man shook his head. Maybe if we took it to a bike shop? 

Upstairs, the boys squabbled over the blue bike - no, the purple! - the one with the bell! - but can't Mum move the bell? - oh, yeah, but I want the one without the training wheels - oh, me too! said his sibling, gloriously indifferent to his lack of two-wheeled experience. Me, too, he repeated. Firmly.

1.2 inches of seat adjustment later, and we had ourselves some speed. Irregular and slightly scraped at first, but then? Then we had this:

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And, to be fair, they did slow down so that my poor wee camera could capture them.

Feeding the speed demons requires an equally speedy dinner, because while they might be fast on the road, the lads flag quickly when its time to come inside. But this salmon and salad meal gets thrown together in about 20 minutes, with a little advance prep.

garlic, with a little yogurt & dill sauce:
adapted from (no joke) Garlic, Garlic, Garlic - credit for the adaptation goes to one of our favorite children's librarians. 
1 1/2 cups plain yogurt
1/3 cup fresh lemon juice
2 fat cloves garlic, pressed or minced
freshly ground pepper
1 tsp dried oregano, or 1/2 tsp fresh
1 big handful chopped dill
optional: a sprinkle of mint

Mix thoroughly, and set aside. Covered, the sauce should keep in the refrigerator for a week.

Meanwhile....take a slab of salmon, drizzle with olive oil, salt, freshly ground black pepper. Drizzle a bit of maple syrup on top. Grill or broil until it flakes gently in the middle.

Into a bowl, toss a whatever is in the fridge salad. Yesterday, this salad looked like this:

1/2 of a small Napa cabbage, thinly sliced
a shred of a radiccio
a handful of lettuce from our garden
thin strips of apples
2 scallions, sliced
a big spoonful of green olives
1 underripe mango, sliced into strips

Toss in the bowl, along with a dressing. Yesterday, our dressing was: olive oil (drizzle on salad, toss until salad is coated), salt, pepper, garlic powder (toss again, until spices are distributed). A spritz or two of Bragg's (a recommendation from a wise friend, whose children eat kale - think of it, kale! - with Bragg's sprayed on top), a drizzle of honey (1 Tb?) and a tablespoon or so of vinegar.

Serve with a bowl of leftover rice, or some boiled potatoes - preferably the wonderfully lumpy ones that Gig picked out at the market, and then was only reluctantly persuaded to share. The slightly charred, caramelized flavors of the fish match up nicely with the slightly sweet salad. There might be more subtle ways to balance this gentle, summery sweetness, but I'm not a subtle person. I like the coolness and the garlicky bite of the yogurt sauce, and I know that tomorrow, it'll be lovely with just the boiled potatoes, a pickle or two, and a peach. The day after, I'll probably use the sauce as a salad dressing...but I'll wait a couple of days after that, before I use it as a dipping sauce for some pan-fried tilapia. 

And then? peas.

Tuesday, July 12, 2011

best. QOL. evah.

Nowadays, it seems as if children's mental health is climbing onto the medical radar, and spreading until it gunks up the wipers. As it should - too many kids, saith my not at all educated self, are left to struggle with depression and mental illness. People should find these kids and help them, and no, I'm not going to swear to add emphasis to the statement. They just should.

With that, of course, comes the QOL form - the quality of life form.

Is your child happy? sad? in trouble at school? do they talk about anxiety? do they say that they feel down? do you think that they are anxious? do you think that they are happy? sad? in trouble at school? 

I have an amazing urge to write it depends all over these things, but I do appreciate their significance. Mental illness happens to all kids - the ones with the chronic diagnoses are simply best poised to get screened over and over. Which is perhaps unfair. Still, I do appreciate the pop of studies by people are realizing that hello? chronic illness is actually an additional thing to ask of a kid. And that kids' response to illness is unpredictable. QOL studies - and I'm too tired to go find you links, but look up QOL and pediatric cancer, resilience, etc on pubmed and read carefully. Especially, read the bit about how parents tend to rate their kids as unhappier than the kids say they are.

I love the bit where the researchers think carefully about how to prove that the kids aren't lying. Or so extraordinarily socially adept that they know to say that they're just fine, as the Eldest did, when asked by doctors doing their morning rounds.

How are you feeling this morning, kiddo?
The Eldest summoned a big smile and bright eyes. Oh, just fine.
Hey, said the doc du jour, that's great!
Yes, said the Eldest with a degree of satisfaction. So? Can I go home now?

Truly, the doctor should not have been surprised. Happily for him, he joined the rest of us in laughing our asses off while the Eldest looked on, somewhat hurt.

And thus, the QOL.

Which is how the Man and I found ourselves looking at the following question: Does your child get into more trouble at home than his sibling?

And our answer: You should meet the sibling.

Wednesday, July 06, 2011

2.25 miles plus what?

The 4th of July is a big deal around here, so much so that the Man and the kids and I decided to celebrate by admiring roughly 2.25 miles of our municipal water supply. It's a nice trot around a pretty bit of water, on a very nice blacktop with lots of dogs to pet. Who would happily, btw, share your lunch with you.

It was the perfect day for a stroll around the water, with the sunshine and the 90 degree heat and the children bounding along. Also? The city had made the paths really pretty, with the occasional butterfly meadow.

The bees appreciated it too, although my look, kids! Do you see the two kinds of bees? Come closer - I'll show you which one is more likely to sting didn't go over well. Oddly. By contrast, our stop at the dogs-get-wet-here spot was epic, and genre alone should explain why I couldn't possibly give you any real sort of sketch as to why, or what happened, but there were wet dogs and sticks and small boys and dogs' people who showed the small boys how to throw the sticks. Also, that you should show the sticks to the dogs first. And that once you've shown the dog the stick, it's a good idea to throw it quickly - especially if the dogs (uniformly) outweigh you. As the Eldest ruefully observed.

It doesn't help that I'm short.

No, I thought. But it does help that you - both of you, actually - are literally willing to get up after you've been knocked down, and try again. Lucky for the kids, their parents are the same sort - although for the adults, it might be less pluck than bone-headed stubbornness.

That's poison ivy. See? Leaves of three, the newer, smaller ones are reddish. Don't touch it  - it'll make you really, really itchy.

A couple of pairs of small boy eyes grow round, solemn . Oh. 

That's poison ivy. See? There on the edge of the track? You were about to walk into it, and that's not going to be fun. Remember how itchy you were after we went to that park? 

OH! No, I didn't like that. I'll stay away from the ivy.

Hey, honey? See the poison ivy right there? You were about to step into it. Remember how it's itchy?

Gosh, that poison ivy is just lining the entire path. Better walk in the middle, so that if you stray to one side, you'll still have time to move away again.

Um. Notice where you are? No? Okay, what do you see there?

Hey, look at that sign! It says that there's poison ivy here. Wonder why they didn't hang up more of those - oh, kid - you were about to walk right into the poison ivaaargh.

There is a special sort of hell that describes this, but all I can say is: 2.25 miles of track. 9 miles of poison ivy (it was on both sides of the track, we had two kids, so you do the math), and where in hell is the learning curve, huh? Right now, all I'm getting is Zeno's paradox.

The Giggles' ability to read the Poison Ivy Runs Rampant sign? Not as comforting as one might hope. Somewhat mocking, in a rather cosmic karma, laughing behind its hand sort of way. Or possibly just strolling right up and prodding me in the ribs. But, MO-OM, said a child, it would help if you REMINDED me. You know, sometimes I need a reminder. And sometimes, I need two or three or five reminders. I inhaled. Forgot to exhale. Focussed on figuring out the square root of the number that I was counting to.

You had 2.25 miles worth of reminders! 

Oh. said the child. That's a lot of reminders. I see your point now. But, he went on thoughtfully, you know, they don't have poison ivy on the planet Emeraldia. Or, rather, they do, but nobody's getting itched by it. I should ask them why not and then sell the cure to everyone!

And just like that? We were half-way to the end of the curve.

Math sucks.

Monday, July 04, 2011

an unfolding deliciousness

I found them, of course, right beforehand.

Tucked into a bin next to some sawdusty roots, a raggedy collection of twigs were sprouting in a somewhat forlorn corner of the fruit-and-veggie store. Shopping carts whisked past, heading for the more promising broccoli, leeks and (barely deserving the discount) seconds. On the other hand, how anyone missed the burst of color in the sawdust and twig corner? I can't imagine.


I don't know how you'd pronounce them - my ligh-cheeze has never been quite right, but who has time to compare notes on pronounciation when that is dancing a delicate, swooping samba on the tastebuds? Liquid, apple and a light sweetness, with a little pineapple? or quince, maybe? definitely a tang that's halfway between a really aromatic Meyer lemon and a regular lemon, and oh, too much of my childhood for me to really taste the thing.

I think.

Judging from the looks on the boys' faces when they carefully divide them up, though, I might not be so far off. The boys' precision is overlaid by a sense of ruthless logic: if I'm really, really fair, then I'll get as many lychees as the other guy.  Unless mum's not watching, in which case..? um. Or not.

And for the Man, it's one more oddity in a pantheon of edible oddities that he's learned to enjoy. An unfolding of flavors in the mouth, a discovery of unexpected pleasures - yep. It's really rather the perfect metaphor for a rather extravagantly numbered anniversary. Even if I did have to work the image a bit too hard to make it fit, well, hell. There's a bag of lychees in my fridge. Get here before they're all gone, and I'll let you see for yourself.
Unless we eat them all, the Man and I, sitting at our table in that most private of restaurants, with the candlelight flickering. And the kids, hopefully cooperatively asleep, having eaten their own bag of edible yum earlier that night...

Wishing us another many, many lots of the lumpy bumpy delish, love. So glad to have you with me for the road thus far, and I promise to share very, very fairly the deliciousness that comes...

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Sunday, July 03, 2011

so, in case you missed it? summer

of course, if you are at all unclear on the subject, you most definitely do not live at my house. Here, the mornings be loud and the afternoons be bitchy, and periodically the Eldest will wander over and explain that he is oh, so very tired. You know, he'll say confidingly, the Gigswoke me up an hour - no, two hours - early this morning. Which is to say that, his brother woke up at his internally cuckoo-clocked hour of 6:something wee am, rather than letting the Eldest snooze until 7ish.

My parenting position on this sort of thing is, officially, that there are many reasons that it can suck to be the older child, and this might be one of them. Also, that the Eldest spent oh, five? years requiring us to make him the center of our attention - and gently accepting mid-field, slightly off-center. The morning adoration and play with me! It's a day! Let's play with something FUN! from his sibling is just deserts.

 So, yes. Summer. It started gently, with the Eldest transforming into lo! a fourth grader. Don't ask me what it means, except that I'm pretty sure that there's a growth spurt in there somewhere. Eventually. Also? A sudden, horrified awareness that if someone makes trouble, the mature, sensible fourth grader might be part of a group held responsible. Hm.

Shortly his mother stopped smirking in corners where she thought he couldn't see, the smaller one dusted off his hands, was offered and solemnly wielded the rose-shaped light saber of the Padawan, graduating to apprentice Jediship. (or some such) And I'm going to hold the grin in my tone here, but you know that it was a soggy occasion.
The Preschool of Wonders was wise enough not to equip their graduates with lightsabers - they gave them kiddush cups, instead. Armed with a nice bit of Judaica, the kidlets trotted happily off after a slightly adapted "Tick, Tock" song, wondering why that last line had come with a sudden round of adult mucus. They were, after all, going to see everyone on Visit Days, right?


With that taken care of, it was time to - well, to anything. The boys began with aerodynamics, 

 paused for a bit of whoop!
and went on to figure out how they could conquer the world.

And if you hadn't noticed, I suspect that I haven't been blogging nearly enough. Trust me - they did.

* Gigs, along with Trig and Gigabyte are a variety of names that we use for the really no longer toddling Toddles. For obvious, Palinesque reasons, I'm going to eschew the lovely Trig. Let's see if Gigs works for us - and your opinion is most welcome. The name is, of course, short for the Giggles.

Tuesday, June 07, 2011

morning improbable

go go go go shit stubbed -ow-fmfrikkintoe- um. Hi, honey.

The Toddles walked in slowly, meditatively. Also? pajamaedly.

Um, kid? It's morning. Time to get going for the day. I point at his pile of day clothes, sitting in the hallowed pile o' day clothes spot. He doesn't blink. Also? doesn't turn around.

Yes. I know. The kid flops down on the bed, his expression still serene, still relaxed. But I stopped the clock. 

I blink. He clarifies, time is standing still now.

Something in my morning routine knife pleats, then crumbles. Side by side, we stare at a line of light, threatening to creep across the ceiling. I could get to like this, I say, sleepily.

We pause, sinking into the stillness and inertia.

Mom! Mom! We have to go in seventeen minutes! the Eldest shrieks, running into the room. I turn my head to look at his brother, who doesn't have the grace to look sheepish.

I forgot to tell you, he says, calmly, I started it up again.

Wednesday, June 01, 2011

okay, so your cell phone can pop corn. Anything else?

But not so much tumors, says Tara Parker-Pope. Well, maybe gliomas - but they're rare. Um.

Still, your cellphone can make you pop a rash, thanks to the nickel content. (Click here for the article in CMAJ)

Indeed, says my jawline. We knew that.

Roughly 1 in 5 women are allergic to nickel, and a mere 3% men. The allergy has some deeply challenging and distressing effects, such as limiting the use of jewelry to the seriously expensive, low-nickel content stuff. Unless, of course, you have a loving and thoughtful spouse, who is willing to bring you joy and give love - to the budget - by hunting around for nickel-free, gold-free options.

I joke, of course, but you should have heard me swearing at my cell last summer. And itching.

For more on nickel-free cell phones (or mostly nickel-free), try this. And if you are wondering whether you are allergic, talk to your doc. Who might just do what mine did, oh, lo these decades ago, and tape an old nickel to your arm.

Friday, May 27, 2011

post-scoop, or bringing back the dairy at BCH

Many thanks to those of you who emailed me with your thoughts - and wishes - regarding the Eldest's reintroduction to dairy. (cheese-cheese-cheesegimmecheese-ooh, ice creeeeeeeeeeeeeeamcheese) Yes, other tolerizing efforts are going on around the nation, and yes, right here in MA.

At Boston Children's Hospital, in fact. We were not part of this study, but you can read - or watch! more about the BCH clinical trial here, or watch Dr. Lynda Schneider explain it:

We're familiar with Dr. Schneider as the doc who didn't laugh during one of the Eldest's food challenges. The kid, tired of being asked to yank up his shirt every quarter-hour (to check for hives), decorated himself. In green marker. He put one dot over a middling high rib, another on the matching rib, a line downwards, and a flat, curving line just below the belly button. It looked roughly like this:   :-) His nurse was nearly 8 months pregnant, and laughed herself silly. It was a whole lotta laughter - but Dr. Schneider, alas, didn't find it infectious. And yet, listening to her in this video, you can see that even if she doesn't get the Eldest's sense of humor, she does understand something about what food allergies can do to a family. Good for you, Dr. Schneider!

For more of this series, you can watch Robyn Nasuti demonstrate the impact of a food allergic kid (or two) on the family food budget.  I was struck by Robyn Nasuti's willingness to cook multiple meals for her children. It's not an effort that I could sustain. The amount of time involved in preparing this individualized menu must be enormous, and how one maintains an identity outside of Allergy Mom - or a life outside of the kitchen? is beyond me. But different families make different choices, based on their different needs. Looking at the Nasutis' list of allergens, it's clear that their choices serve to keep their family going. And if three different dinners works to do that? well, then, three dinners it is.

In another clip, Ming Tsai, chef and father of an allergic child, talk about his efforts to educate others, and life with his allergic son. Tsai is wry, pragmatic, and I admire his ability to make things happen. The legislature that he helped craft - and see into law - offers a very basic education to folks working in restaurants. And, if you are wondering if that education is needed, I suggest watching the following clip about Brett's own efforts to educate his peers. The children's misunderstandings of food allergy - that the big 8 are "all of the allergies"   are common. Adults share these misunderstandings, and frankly, adults worry me more than the kids. Because, as we all learned from the parents of Edgewater, where the adults lead, kids follow.

Which makes us, some days, a living, mobile exhibit in the Things That Don't Happen museum. I told my wife that this allergy thing isn't really true, a lovely preschool dad - and educator - confided. Our son is lactose intolerant, but it's just not a big deal! So why are all of these people getting so upset about food allergies? He grinned and shrugged. I shrugged back, and arranged my face into something as far from wtf as possible.

Yeah, I nodded sagely. Never saw anything like this allergy stuff when I was a kid. Maybe someone had hayfever, but that was it. And now? I flung my hands up, EpiPens everywhere! We offered each other resigned, wry expressions.  If I hadn't seen the kids have the anaphylactic reactions, I said ruefully, and paused. Shook my head. I'd never have believed it.  

His head whipped around. Really? The anaphylaxis? I nodded, remembering.

Yeah. Never seen anything like it before it happened the first time, but it's pretty nasty. The kid starts to cough, vomit, then he's wheezing and his throat is closing. It's pretty bad.  So, yeah - I understand why parents get scared. It's a nasty thing, and it's easy to overprotect because it's so scary.

He blinked. You know, he said slowly, you are totally ruining my world view. 

I grinned.  I've heard that before. But if it helps? Lactose intolerance isn't an allergy. It's a missing enzyme that the body needs to break down the dairy. 

He flung up his hands, possibly in relief. Well! At least there's that. And trotted off to tell his wife.

Sunday, May 15, 2011

do all the things??

With thanks to Hyperbole and a Half, and if you are scratching your head right now, stop and go read this. No, really - I'll wait.

So, if I have a fault as a parent (what, me fault? cue the cackling children), it's my love of projects. Oh, I do love me some projects, possibly seventeen or so at a time. So we trip off happily to the yarn store, and find yarn to teach the child crochet. Or fabric, because we're going to teach the child sewing. And, in each case, we shall create marvels, and it shall be good.

Also? It will take so long to complete some of these marvels, whose marvellousness will expand and origami itself as the child gains competence and understanding of the technical skills needed for the project, that (deep inhale, cripes this sentence is running amok) the kid will lose interest. And I will end up pushing, because inevitably, that project was to be their grandmother's 60th birthday present, or a friend's birthday present two freakin' years ago or, or, or.

And then we both hate the project, snarl at it and each other, and stomp off. Until the next project shows up.


And then we'll do it all over again. Because for a brief, shining moment early in the whole project trajectory, the kid has an idea. The mama backs him up. There's a special trip to the store that sells the supplies, and we romp through it like selective magpies, falling in love with all of the shiny possibilities. We collect endless project idea cards and handouts, and gaze at them and a possible future of creative wonderfulness. And I take pictures like this one, which leave me damp of eye and proud.

That's my grandmother's sewing machine, schlepped to the country by my mother, and used (infamously) to make the Eldest's siddur cover.  And that earnest face? Well, it don't help us kick the habit, is all I'm saying. In fact, it's rather irresistible...

Note for the perceptive:
The buddy-taping in the photo is more or less for the reason you think - at the time, the kid had a bleed in the joint of his middle finger. It was a beeyoutiful shade of reddish purple, and worthy of admiration at the dinner table. Which is, of course, where I noticed it and inquired as to cause, duration and all of those finicky details. My hand? asked the child, surprised. And looked. Oh! Wow! the Eldest exclaimed, and seemed honestly surprised. That hurts!  Across the table from him, I nearly choked on my tea. And it really is purple!

Sometimes, the hard part about being a parent is the urge to howl with laughter - and not being able to do anything of the sort.

Note the second:
The kid is, of course, fine. And my diaphragm is still recovering.

Saturday, May 14, 2011

a pause for memory

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It's no coincidence, I always think, that my grandmother's yahrzeit falls so near to Yom haShoah, the day of remembrance for the Holocaust. I should not have known her well - she lived impossibly far away for most of my childhood, and lived nearby only for a blinkingly short time. But in that blink? Well.

A teenaged trip to Poland, touring the concentration camps, because that's what you did with your gratingly idealist Jewish teen in the 80's, and for all I know, still do. The kids came home shocked, quieter, and many of us, angrier. Try gratingly idealist with an edge of historical angst? Yeah. Great. I came home stunned, and realizing for the first time that there were numbers large enough for me not to grasp, and that those were numbers of people.

I'd learned that, as it happens, in a warehouse of shoes.

Anger, I rather thought, was a reasonable response to the unimaginable. But my grandmother mourned such anger in her quiet, determined way, and had far more right to it than I. She wrote endless letters, trying to educate people about the Holocaust, teach a nuanced, thoughtful understanding of history. And she was not angry.

I missed that at first, awash in a collection of her oddities. She didn't bake cookies - she mashed bananas and sprinkled carob powder on them. She had a compost heap, and believed in rot. She ate this buggy, dirty lettuce, sold in coops (what the what the was a co-op? hell-o? seventies?) by people who didn't believe in deodorant. She treasured her friendship with a farmer person, who didn't believe in using modern fertiziliers because oh, maybe somehow they'd be bad for you. And oh yes, there were the herbal remedies. And her vegetarianism.  That chamomile tea will lighten brown hair, turning it nearly blonde - and didn't I want to try that? And wierd quirks about plastic in the microwave. What was there to understand? The woman was sweet but high, high, high on the seriously odd scale.

If she had one saving grace, teen-me thought, it was that she made the absolute best sandwiches ever. Thick, crusty, never seen the inside of a supermarket bread. With seeds and things in it. Slabs of avocado. Crunchy bits of sprouts which were sneakily delicious despite being so - so - hippie. And oh! that dirty lettuce, washed and crisp and melting. On that foundation, she wreaked a range of marvels. And, being the food slut that I am, I fell in love.

Years later, I'd be a parent, making decisions about organic food and whether a bit of ginger might settle a young-un's tum. But back then, I was a fuzzy teenager, chewing on a revelation and learning that individuals count. That the specifics of circumstance can rule you, and that unless I knew those specifics, I could not judge. I set that thought next to the impossible warehouse of shoes, and watched it. Chewed. Tried to undercut it with her narrative of the Warsaw ghetto uprising, machine guns and the camps. Swallowed.


The sandwich - and the idea - settled deep inside me, both setting standards for which I owe her.

Decades after her death, I found myself in a produce store, staring at a rather lumpy looking bit of citrus. And then frozen, inhaling the distinctive smell of a sour orange, and remembering sun-rich fruit, and a farmer casually picking something perfectly ripe. Think about patience, thoughtfulness and smile at the orange in a way that made an older man tilt his head and watch me. Grin a little, even.

She echoes, my grandmother does.   And I miss her.

Saturday, April 30, 2011

bloggish smirks - and a pause to be warned

Somehow, in a fit of former grad-studentness, I became a MedPage reader. A not-quite daily medical/science news update reader. MedPage added blogs at some point - I noticed at a far later point - and read them oh, whenever there's nothing good on in the world of medicine. Which is not so very often, honestly.

But sometimes, I do. And then I wonder at the indignation of someone like this, writing about the horrors of preschool pizza. What is she worried about? It's pizza! Do you know how much lousy, crunchy clinical trial food my kid ate to get his pizza?

This is a line in the sand, drawn by someone who knows that something dreadful lurks in the dunes. Another blogger helpfully explained: it gets worse. Kids eat the most amazing crap in schools, breaded and served up with a side of bread. Or potatoes. No, really. See? Count the number of green things, the second blogger suggested.

Or go for the gusto, and count the ways that you can make a celiac twitch.

And that, I realized, is the missing link between an allergy-friendly school and a school that really cannot be bothered. Or won't. When the monolith of the school menu is standing there, all sorted out and scheduled and packed with the carbs, salt, oils and proteins that kids will eat - and oh, but finding that magical, what they will eat is not to be sneezed - or hived - at, then who wants Change? even Change for Good Reasons?

We know how to feed them. Sort of. Until the allergy kid comes along, leaving shredded cafeteria menus in their legislatively enhanced wake.

Um. Well. Okay, so maybe we still can feed 'em. But from the looks of this menu, we figured out how to feed our kids back in, oh, 1940? And haven't really thought about it since.

Or maybe this has nothing to do with the immunocentric universe, and is really about something far more basic. Like the possibility that taking candy bars out of the school vending machines? A faint, feeble start. Stop picking on Snickers - think about this: for a massive number of school children, this is the central nutritional pillar in their world. Which, to my untutored eye, explains that.

Which is so depressing that I'm going to shut up now, and soothe myself with some Buffalo Bleu chips.

Friday, April 29, 2011

Passed over. Next? (with menu)

So, Pesach. was. awesome.

The Man worked insanely hard at work and at home, and began moving the laundry along and forgetting to press START. The kids learned that, temporarily (the adults told them, earnestly) the playroom was being remade into the Place to Store Jillions of Dishes. Also Pots. And they dealt with that, wisely taking over the long, open floor of the living/dining room.

You can wage some serious epic battles between droid-dominoes and Jedi-dominoes in that space. Also, a modified, refrigerator magnet form of Rogue. Maybe even teach it to some friends. Except when you are carefully checking the rice and beans - three times - for stray grains o' barley and such. (Also? finding them. Kosher for Pesach, my allergy mama ass.)

And I ran around, making lists, reworking last year's lists, realizing that the lists were multiple pages long, hyperventilating and explaining to paper bags that I just did not have the time to do all of this, and if i could please just get a wee bit more oxygen, I'm sure that I could do some prioritizing.

The kids brought home wonderful bits of art, a ceramic object designed to distribute grape juice to four cups, and the sweetest seder plate, made by a sweetly earnest small person.

Like that one.

And that one.

The Man and I raced around, trying to actually enjoy - and encourage? - the kids' enthusiasm without actually having to stand still long enough to do so. Until it was time to light a candle, get out a carefully cut paper feather, and unleash the kids with flashlights, to hunt for the chametz. Because we have some, you know - oats rock my world, even when they force me to clean it, too.  The boys raced through the house, shrieking with glee. I got it! I found it! and hey! that's great - I didn't think of looking under there! and the adult how on earth did you GET under there? And (thoughtfully) how are you getting back out? and the inevitable, Noooooo! I was going to find that one! and, then the hiccupping, damp wail of bu-bu-but he found two-thirds, at least, and I wanted to find half. And now I caaaaaaaaaaaaaaaaan't! Followed by a quiet slipping out the door by one parent, three very subtle thuds and a thumbs up.

Equity more or less restored, we were on to the seders. And the fingerpuppets. The plagues, as brought to you by the dollar store (jumping plastic frogs, red paper confetti, etc), the four questions as brought to you by Vanna Toddles - complete with glamorous waving motions - and the best Red Sea enactment ev-ah. (Note: I love teenagers. They give a whole new height? depth? to the concept of parting the waters.)

We missed some of our dear and insufficiently near ones, welcomed friends, and discovered that the formula of two preschool (current and former) teachers, plus one librarian plus the rest of us = a bouncing, question-prodding, puppet-waving seder with a fair dose of speed and giggles. And oh yes, who bring friends with their own set of hand puppets. And kids who walk into the kitchen and say things like, hi! how can I help?

It was undeservedly good. And at the end of it, when the last guests had left and we were merely elbow-deep in dishes, the Eldest rounded up his brother and father, and the three of them stood in the kitchen and applauded.

I am so doing this again next year.

Pesach/Passover 2011 - as planned, and occasionally as delivered to the table.
note: we follow Sephardic rules for Pesach, and eat rice and beans.

1st seder
* carpas:  parsley, tiny red an' yellow an' purple potatoes, broccoli, carrots, potato chips. Salt water.
(add in: chimichurri, guacamole or gremolata, grapes)
* charoset:
  • apples, raisins, lemon juice, cinnamon & sweet red wine. Add ginger juice to taste.
  • fresh cranberry-orange relish
  • orange confit, if I can find the time to make it. (I didn't.)
green salad
sweet potato fries/rice
some sort of meat (!!!)
mint sauce
lemon sorbet
blood orange sorbet

Tuesday: lunch
make your own sushi with lox, cukes, avo, scallion, mango, lettuce, sushi rice - and, regrettably, with some faux, Passover-friendly non-soy sauce. The sushi was a hit - the non soy sauce was not.

2nd seder

*carpas: see 1st seder. Add in: melon, strawberries, etc to sustain the smalls until dinner. Even though they were fed a pre-seder meal. Also? dips.
*charoset: see 1st seder. And don't slow down on the magid, because we're going to lose a third of the shorties by the end of dinner... But at least they'll last long enough for:

green salad
Karina's crustless vegan pumpkin pie, heavily reworked into a sweet potato deliciousness. 
maple syrup salmon
baked chickpea salad
orange sherbet (oh, Alton - you marvel!)
sorbet, sorbet and more sorbet.
Also? fruit.  Apple crisp if I have time.

leftovers. Also? dishwashing. 

dinner: okay, here we might manage something like a shepherd's pie using the leftover meal/poultry from the 1st seder. Bulking that up with hot dogs. Unless, of course, there are mere shreds left over from the 1st seder, in  which case it's a good thing that I bought those boneless chicken thighs. 

Leftover rice, plus add some of the citrus surplus to sliced red onion, cracked green olives, a handful of red grapes and the leftover romaine leaves from the seder for a green salad. And oh, by now, those plantains should be beautifully black. Whip out the wok, honey, and get a-frying.

make your own cheese matza deliciousness. We supply the best GF oat matza that Lakewood can make, umpteen cheeses and heck, dips and veggies. Extra points for the unexpected and yummy.

dinner: um. Who can remember?

dinner:  rice, leftover salmon, salad. Dips. Sorbet! Wow, this meal thing practically runs itself, given enough momentum. How many times can I say 'leftovers' this week, and in how many different ways? Tonight's phrasing: wrap it, baby

breaded (oat matza meal!) chicken and hot dogs
Dougie's buffalo wings sauce
condiments & cranberry relish
salad with extra crunch, to balance the mush/squish of the really moist, super-marinated chicken.
rice with fennel & herbs

dinner: basil pesto pasta, salad, tuna. Pickles!

Sunday: dinner
leftover milchigs/dairy, reinvented in fill-your-own baked potatoes.

Yeah, kind of like that. (Note: the green stuff under the carefully mashed and re-filled potato is avocado. Also, an olive. History is politely mute as to whether the potato was consumed, but contemporary journals suggest that at least 2-3 purposeful bites were taken.)

dinner: crepes! Time to go light and sweet, so whip up some cream (oy, me achin' arm), slice that dripping-sweet melon, sprinkle some of the last of the mint, chop up the sad strawberries and douse them in sugar and lemon juice, and heck, put some lemon juice into a tiny bowl, and some sugar into another. Crepes. 

This is the bestest Pesach food ever, Mum. Why haven't you made this before?
I surveyed the sweet-fest in front of me, and considered.
Actually, I have. It's just been a while.
The Toddles looked up, chewed, swallowed, and put a slightly greasy hand on my shoulder. I love you, Mummy. But I like your food better.
I nodded. All things considered, I was fine with that.

Crepes provided breakfast and midnight snack for the next three days. and by the time we ate our way through another three or four meals, crepes were also providing school lunches. And it was time to dig out the kitchen, update the Pesach inventory and find just enough non-Passover dishes to be able to cook for shabbat.

Which, by tomorrow evening, we will have done. I think. 

Thursday, April 07, 2011

listening to science - messy and otherwise

New York Hall of Science...meets parenting special needs. Either this blend of science and messy life-as-lived is characteristic of this institution, or I have much to learn about science.

On a rather unrelated note, I have continued the warping of my children. Today, the Eldest asked if we could listen to Radiolab, rather than just playing some music? Please? There was a longish pause, while the Toddles considered whether he was going to be offended. And wasn't.


In fact, I lie: this is not an unrelated note - I hooked the kid on Radiolab with their story about a rescued lobster, waited a week, then gave him a bit of the Loneliness of the Goalkeeper show. That he stopped reading Fellowship of the Rings to listen? coincidence, he told me. And then got to hear him argue about how, just because I'd pulled up to the curb and turned off the car, doesn't mean - surely! that we had to stop listening to the Yellow Fluff/Scientific Discovery (or, how I came to love the fly that is eating my brain) show.

Radiolab, if we end up blasting Richard Holmes' Galois story while walking home, I won't blame you - I'll be laughing too hard.

Tuesday, April 05, 2011

probabilities and surprise

Watch out, Mum - you want to stand back - there's a 50/50 chance that I'm going to throw up.
Uh, oh - it just got worse. 45% that I won't throw up.

[meanwhile, in another room]

Oh, wow! look at that!

Yep, says the parent. That's one purple knuckle you've got there. 

Kid, enraptured, oh - and I don't want to straighten it! See? (rotates hand back and forth, eyes wide with fascination) and it doesn't bend, either. It's - it's - the Eldest, struck by a new thought, looks up, it hurts!

Tonight's score on the kid-o-meter: 50% chance of child self-awareness before incident. .0007% chance, going forwards. Degrees of accuracy? assuming a confidence interval of oh, not so very much, and correcting for variability in the data, um, it depends.

Monday, April 04, 2011

backpedalling and scornful hindsight

In Florida, a school is backpedalling. Edgewater Elementary has reconsidered the 504 plan put in place to protect a first grade child with preanut allergy. This is hailed as a triumph by the protesters, one of whom said that the school is now trying to work with us. That's what we wanted all along. Experts have pointed out that some elements of the plan are unusual (and potentially unnecessary) and Gina Clowes twittered, accurately, that Allergy Moms should never cry wolf! We need to ask for what our children need to stay safe and included and not more. (3/28)

(deep breath)

Let's start here: sanity and a functional partnership between the food allergy (FA) parents, their medical team and a school is absolutely necessary. When a parent sits down to work out a 504 plan, they are the conduit between the doctor and the school. They relay what they understand of their child's medical needs - and many are the studies that show how flawed that understanding can be.  To balance any unintentional bias or misunderstanding, the parent supplies paperwork, a food allergy action plan, contact information for the allergist. They talk about the child's history, what has happened and what it looks like. They learn a little about the school's perspective, how things work there (nurse? no nurse? where are the Epis kept? what happens in the lunch rooms? how often do you have food fights?) and tries, politely, to figure out how much the school understands about allergies. 

Don't fool yourself into thinking that this is enough. The school comes with fears of litigation, regulations galore, staff who might be anxious or resistant or just insisting on a degree of precision in their instructions. The FA  parents come with their understandings, their misunderstandings and a fearful, hopeful please, please do right by my kid! And everyone hopes that the diagnosing doctor has got it right. It's painful to read about the unevenness in the ways that allergies are diagnosed, categorized - and therefore, managed - and the education provided to patients' and their families. Best care practices? For folks who don't go to a select few clinics, best practices means whatever their allergist - or pediatrician - tells them. 

And yet, Gina is right. Don't cry wolf. As the advocate mom, you absolutely, positively must have some authority. People need a reason to believe you when you say, this is what my child needs to be safe. To coexist in a world of her peers. Because - and I did ask - the allergist isn't going to be able to show up and say that for you. (Note the waiting lists for appointments and food challenges. That's why. Our hemophilia treatments center can send a nurse practitioner *and* a social worker, but hemophilia? rare. Allergies? really, really not.) So, parents? Don't screw it up.

Hello? Have we not read the articles about false positives on the allergy tests? Did we not read about how some egg allergic kids can tolerate eggs in this format, and others can handle their allergens in that? Um. So, if the doctors aren't able to keep up - and are making mistakes - and don't get me started on patient/family education, how is the parent supposed to avoid screwing up? 

I'm going back to what I said earlier: if you weren't in the room for that 504 plan, you just don't know what happened. And, as Dr. Scott Sicherer pointed out, if you aren't the child's doctor, you just don't know what she needs. Maybe the school asked for the peanut sniffing dog, to help them make sure that they knew where those pesky peanuts were hiding. Maybe someone pointed out how oral kids are in the younger grades, and that they put things in their mouth. What if some peanut stuff got on a pencil - and the allergic kid picked it up? Fear of litigation, a desire for a margin of safety, an honest wish to do right - and yes, misinformation of the most well-meant kind - these are all reasons that a school plan might edge towards the conservative. Possibly tip over the edge, towards aggressive. Litigation is a silent demon in the room, as is the honest, compassionate worry about not doing right by a child. By one of your kids, a kid in your classroom. It's just so much easier to walk away - which is why we needed ADA and IDEA; sometimes you have to force the system to do the right thing, despite the risks. To learn how to do the right thing. Public schools have learned, but they are still - and rightfully - anxious.

I can live with the good reasons - the well meant ones. I want to wail about the lousy education that most of us get, and oh, I could tell you stories about positive allergy tests that were positive - maybe. Or positive until the kid's IgE dropped, maybe once the pollen season was over. Or positive only because we weren't yet working with the fancy shmancy allergy clinic that saved us, and the other allergy team just didn't know enough.  And I want to take out a billboard and say: that kid can't trust her classmates, because their parents are teaching how to lash out in the name of your pseudo-rights. The kid's parents can't be effective advocates, because the big experts have gone on national TV to show how wrong they are. And that school has now taught the protesting, self-centered people that oh, a plan designed to keep a child safe? Negotiable.

Safety, accurately described and understood, is not negotiable. Clearly, that accuracy is just not possible here. The experts were right to say what they did, the school was right to rework the plan. The parents were right to ask for more information - but the poison is in their picket line. In keeping the non-allergic children home from school, as a form of protest. In putting those children on the picket line. Because ultimately? it takes more than a 504 to include a special needs kid, you need to have school, family and community working together. And after these events, I cannot see how this is a school community that will show the necessary compassion, or respect this issue in the future. And I cannot see how the FA parents were anything but set up.

And I worry deeply about that child. She won't just be different in a world of her peers, and she hasn't been allowed to be merely different in a world of different needs and different children. Instead, she'll be herself, complete with her medical needs -  and those needs, or difference will be mocked, used against her - if not simply and dangerously dismissed by her classmates and their parents.

And in that, there is no safety at all.

For more on the story, see this thoughtful bit of reporting, which talks about the medical need and missed opportunities to teach compassion. Kudos to the NBC team for a balanced report - and hat tip to the Allergy Mom Supreme, Gina Clowes, for the link. For a (self-declared, though anonymous) parent's perspective, try this.

Friday, April 01, 2011

step away from the virus. Yes. Just like that.

except that there's this rubber band thing, that snaps you right back in there. Twang! (that's gotta hurt)

Day three of the sickies, and the Man is now quietly and wisely replenishing my chocolate supply. Bless him. And I'm actually going through my email, in hopes that there really is life on the other end of my steadily elongating tunnel. (have spoon, will tunnel to freedom. or at least, fresh air.)

We've now watched all of the Pixar shorts that I could find - Geri's Game? love it! - played round after round of Uno, added pockets to the Toddles' Purim costume, napped and turned our sad, sandy front garden into a geometry project.

If each square on the graph paper = 4 inches, and we build a 10x40 raised bed here, a 36x40 raised bed there, and a 10x36 raised bed there, can the gigantic recycling toters that will SAVE OUR WORLD be able to get through to the sidewalk? 

answer: um. eep.

We cut out a paper toter, generously sized, and maneuvered it through the garden. Worked out missing bits, like oh - the existing garden beds? the left side of the garden? (ahem) and made a list of measurements that someone should go and get.

What about triangular garden beds? asked the Eldest, who had designed some in class. I looked at him. Could work, I said. Can you work out the area for me? Let's see which gives us more planting space. The Eldest nodded - thought better of it - and beat a hasty retreat. I'm - um - going to go play Uno with the Toddles, he informed me, virtuously. And vanished.

Leaving me with bits of paper, and a vision of a world outside. Or what it could be, if I only had the time - and a whisper of spring.

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: http://www.school-lunch-ideas.com/
**but you can laugh about it. Like in this cartoon.