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.

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.
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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.)

dinner:

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:

dinner:

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.

Wednesday:

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.

Thursday:

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?

Friday:

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. 

Shabbat:

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.)

Monday:

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. 

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.

Heh.

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.

probabilities and surprise

Watch out, Mum - you want to stand back - there's a 50/50 chance that I'm going to throw up.
[pause]
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.

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.

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.