what we preserve

Because it's New Year's eve, and why should that bloody preschool take over one more neuron than is strictly necessary? Already, this business takes up too much space in my noggin.

So, I'm shoving it aside. Because the year is turning, this is one of those artificial transition/transfomation moments, and while I've never been a Dick Clark kind of gal, I can appreciate a moment when I see one. So. And I've never been too finicky about the pseudo-significant echo thing. So.

Right now, there's a nice quart jar on my counter, glowing with lemons and saffron and mustard seeds. The lid is sealed shut, thanks to my giant soup pot and lots of hot water. In a month or so, that jar will have something vaguely resembling Moroccan preserved lemons, but right now it's just sitting there, glowing.

I can't tell you how absurdly happy this jar makes me.

For some years now, magid has been presenting us with little jars of jams and chutneys. We've loved the first, but I've been the sole admirer of the second. (Not that being solo is bad here, mind you) What an idea: to make the kind of jam you want, because you can. Oh, but it's really easy, magid assured me. I nodded, trying to look non-skeptical. I'm sure. Someday, you should show me.

Summer after community garden summer, I haul in ridiculous amounts of tomatoes and green beans. I make big vats of tomato sauce, tossing in handfuls of herbs from the garden. You'd think that a winter of garden love in a jar would tip me over the edge into canning, but nooo.

What did it was the pickles. Pickles around here are too sweet, not garlicky and salty enough. Not enough Guss' Pickles on Delancey Street, with the guy who reaches into the barrel of garlic sours, pulls out a pickle, squeezes it to see if it's crisp, and then gives it to the kid who will try and make it last all the way back to Queens. Except it won't. And except that the kid can't find that pickle's cousin in New England. And, pickle companies are persnicketty about labelling exactly what spices they use - or telling you on the phone - so, now what?

First, refrigerator pickles. No canning, no worries about freakin' scary bacteria. But also no room in the fridge. So, winter break upon us and snow, snow, snow, cold rain, snow and it's time to get over myself and can.

We started with pickles, of course. Garlicky cukes and carrots. Then kinda kimchee. Then sweet pickled apples. And tonight, preserved lemons. Damn, this is fun. And I do hope I've got the hordes of scary bacteria thing worked out, because we cracked the garlic pickles tonight, and damn. They are garlicky.
So I leave you with this: I'm choosing what to keep, this year. 2008 had it's share of bumps - and one parting shot of a bleed - but in the end, like the Eldest's current bleed, phooey. I'm hanging on to the good stuff, like this trip, a challenge passed, a sun-warm berry, a certain irrepressible tushie and his wonderful, humbling brother. Who did this last night,

working with calm and competence and an ice pack on a painful swollen lump - and then spent a chunk of the morning running around with his friend, bashing each other with foam light sabers,. Idiotic, happy boy energy. Good, good stuff.

I'm going to bottle all of these, sealing them up in their marvellous imperfections. It's been a busy 2008, a wonderful, hair-raising, humbling education of a year. Dammit. And I might be feeling a bit dented by the end of it, but I can arrange my treasures on the shelf and see. We did okay, this year.

Hell, we did better than okay. In our knee scraping, muttering and delighted way, we flew.

So, 2009 is welcome to saunter on in. The house is grubby, the kids are sleeping and there's a distinct shortage of chocolate, but there's a jar on my kitchen counter that glows like a slice of leftover sunshine. It'll do me just fine. Oh - and in case you thought I was just that lovely and grounded to be able to set aside my semi-permanent growl over the preschool, um, no.

to clarify:

dammit, when I tell the preschool to go and suck lemons, they are not getting any of the sunny deliciousness on my countertop. Oh, no. And how could the grubby idiocy of the preschool brangle compare to the teeth-gritted love that came with this? Can't, that's what. So, neener, neener, neener.

(hauling myself up now, reinserting self-satisfied or at least balanced tone into bloggish mouth - right. Yes. Okay.)

Right, then. Bring it on, 2009. I've got sunshine in a bottle and a fist full of memory, and I'm completely able to fool myself into thinking that I'm prepared.

going shopping - and checking tags

The Man and I have been reading and rereading labels, and still, the number of items we returned this week was ridiculous. We returned:

• vanilla Soy Dream (should have been 'original' flavor)
• flaxseed with blueberries (Trader Joes, had "natural flavors")
• Galil sun dried tomatoes in oil (contains "spices")
• 365 organic diced tomatoes (no kosher symbol - the conventional 365 tinned tomatoes are hechshered)

and oh, embarrassingly more.

For years after we had children, grocery shopping was almost leisurely. We'd do some aisles together, some separately - I liked to do produce, the Man likes to do anything "time efficient." (a concept I still don't quite grasp) But now, with at least one if not two kids in the cart and one adult herding them along, we move at top speed.

The rule for allergy shopping is simple: even if you've bought it a squidrillion times before, always read the label. Buying two of the same item? Read both labels. The acronism is REAL: Read Each And Every Label. But for us, that's a goal - not a reality. (ahem)

So, we try to read each and every label in the store, and then it gets reread at home, as we unpack the groceries. Unless it's dinnertime, in which case we might miss some. And I try to recheck items when I pull them out of the pantry. And thank heavens, because somehow we need all three checkpoints. Labels change so quickly, making the oft-requested "safe snack" list an infuriating hazard. Nice parent/teacher/friend, wants to feed my kids things that won't make them turn blue. This is wonderful! This is something we should support! This is going to be a headache!

I was once collared by a righteously infuriated friend for exactly this reason, and yes, she was right. But what are the options? One is for me to always provide the snacks. Another, is for me to provide a list of snacks, plus their ingredients and any warning labels - these are kosher only if identical to the item in the store. A third is for me to ask people to call me from the store, and read the labels to me - each and every time. How big of a pain in the ass can this possibly be? To reduce the PIA, I should be able to offer autonomy to the people willing to take on food allergy friendliness. To ensure safety, I can't - quite. My compromise is to offer the list, check the labels, and stash food in the car, just in case.

Even when we all get it right, the manufacturers present one last wild card. The Chicago Tribune offers a database of products recalled for undisclosed food allergens. They track(ed) the top 8 allergens, plus sesame, sulfites and Yellow #5. The database was built using reports from the FDA, USDA, NY State Department of Agriculture and Markets (one of the few to test imported foods).

A great big splashy, flashy caveat emptor hangs here: the Tribune notes that only 7% of consumer reported allergic reactions lead to a recall of the food. Assuming that some percentage of reported reactions are incorrectly attributed, or crank responses, that's still a remarkably low number. In one case, a complaint was lodged regarding a dairy allergic child's reaction to a Duncan Heins cake mix. You can see here why the product wasn't recalled for some time:

"When asked by the Tribune why the recall took so long, Pinnacle Foods said it immediately had the product tested but found no milk. A few month later, the company received a second complaint of an allergic reaction to the mix. Pinnacle said it again investigated, this time finding a likely culprit overlooked in the first inquiry: some chocolate chips."see rest of text here

Here's what gave me pause:

"The Tribune investigation found that 187 companies since 1998 have had more than one recall for hidden allergens. ... According to the Tribune investigation, half of all recalls for hidden allergens involve undeclared milk or egg. ... The Tribune investigation found that on average, five products are recalled each week for undeclared allergens. ...one-third of all food recalled for hidden allergens involves cookies, candy, ice cream or snacks."

sigh.

The full article is here but I think the lesson is simple: call the company yourself and ask, always. And avoid companies with bad track records, either in reviewing ingredients and cross-contamination information with you, or with recalls. When Silk had their recall for dairy contamination, I called the company and asked for updates. They were unable to tell me either where the dairy had come from, nor demonstrate a level of response that reassured me. Therefore, we avoid Silk products until our allergy nutritionist tells us otherwise.

And in general, we look for companies that have strong allergy labelling practices where cross-contamination labelling is concerned. A serious hat tip to the Nut-Free Mom, who points out that imported foods are even more problematic. They may not have reliable allergy labelling, and outside of New York, there isn't an agency that tests imports.

My many one-sided conversations with Israeli manufacturers have, alas, taught me this. But I heartily recommend Manishewitz, as a company who has at least one educated grandmother of a food allergic child...answering the customer service line. After an infuriating 45 minutes talking to someone at Osem, I called Manishewitz and braced myself. This grandmother lectured me on remembering to ask about cross-contamination, and I cheered.

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I bin tagged!

So, since I think I did the 7 facts meme before - no, wait, that was a tag from the evidently patient Aidel Maidel. I'll go finish that, shall I? Meanwhile, here's my nearest book, opened to page 56, and sentences 2-5 are:

"This book has everything I love: early instrumentation, natural history, art..."

"But have you been thinking about what we discussed?" Sandy asked.

"Daddy," she said. "You may have noticed by now - I don't want to be a doctor."

-Intuition, by Allegra Goodman

(an excellent book, by the way, and I'm not just saying that because her son makes a brisket worth schlepping for.)

But the Toddles was happy: part 3

When I talk to a school about food allergy, they are waiting for me to be the Crazy Allergy Mom, demanding extreme measures that they can walk away from, certain that anything that strict cannot possibly be necessary. No, they soothe themselves, these can only be the ideas produced by the fevered, overprotective neurotic parent. Cannot possibly be necessary.

And with that comforting thought, doors close.

So, my approach is a bit different. I talk people through anaphylaxis (scary, scary) and talk them through how moderates develop into anaphylaxis (oy with a dose of sheesh) and review how different each allergic kid is. Allergies are like toddlers, I tell teachers/admin/people in charge. You never can tell what they're going to do, you can only make sure the sharp stuff is out of reach. (wry, almost funny, see not so bad, come smile with me)

When I'm done, I offer a dose of serious combined with teamwork. I know my kid, I tell the teachers/admin/p.i.c, and you know your environment. Together, we can figure this out. I know we can. A chemist-friend calls that declaration of trust manipulative, and well, yes. But usually, the schools and I do work it out, and that initial, instinctive trust is earned many times over in that process.

One nursery school, one preschool and one grade school have worked with me, had follow-up meetings, stop-and-review meetings and happily used my approach to hammer out workable guidelines. Often, they start with too much strictness, then scaling back. They wait for me to take extreme stances, and are often surprised to find that they prefer those positions, for their safety and simplicity. Identify allergen, remove allergen, right? Still, they look to me to do it first. Parents will say anything where their children are concerned, and I expected you to have demands. I thought that taking the Eldest was just crazy, the assistant head of the Eldest's school told me. But you didn't, and your approach made the difference. (summarized, not quoted)

I agree. And, had I walked in with firm guidelines as to practice (no X in the classroom), rather than firm statements as to the Eldest's needs (not touching anaphylactics), then the staff/teachers/admin/p.i.c would not have understood the needs as well. Which is crucial, in my view.

Classrooms are not static. Things happen, children bring in mice from home and teachers realize that there's something problematic in the mouse food. They need to understand the issue without being specifically prepped for it, and respond. (although in reality, the mother of the mouse-lover called me first, but still, it makes a nice example) One kid wants to sit next to the Allergy Kid at lunch, but he's got something allergy-questionable in his lunchbox. Now what? There's a bunch of wrappers at the bus stop during the field trip. What do you do?

It's just not enough to have a food allergy management plan. People also have to understand why it's there, and be able to work with the underlying principles. Not just follow bullet points. And this understanding is my real goal. The bullet points build habits to reinforce the understanding, or to buy time while the understanding develops.

When it works, this is an astonishingly powerful approach. But it's great weakness is that it depends on the ability of the teachers/admin/p.i.c to partner, or work with me. We walked away from a grade school that had no interest in doing so, and I was surprised to be sitting in a meeting that, post-allergic reaction, demonstrated that I'd walked into another.

We don't understand why we're here, they told me. Can you explain what you want us to do here? I took a deep breath. No point going postal on them, they really don't understand. (Note to self: they don't understand? Oh. my. god. They do not understand. And yet.)

I explained that I've been at this point before, where something happens that is alarming, but it's part of the deal: no bubbles for my boys. Sending my boys to school means accepting the chance that something can happen to them. It's a harsh reality. But, we all work to do our best to keep them safe, and when something like this does happen, it can shake you. Then, it's good to sit down and review what we're doing.

Silence followed. I fell into the trap, and leaned forward to explain.

I'm not as interested in what happened as I am in what happens next. In this room, we have caring people who are putting in the time and energy to keep the Toddles safe, and to let him have this opportunity. We have experience here, we have knowledge, and we have caring, right in this room. We have everything we need to make this situation work, and I know that it's working this well because of the systems and arrangements you have in place. What I'd like to do is understand those better, so that I can help support them, and we can look for where they need to be enhanced.

I looked at a circle of blank - and one closed - faces, counted to ten, and pressed on in the silence. I handed out a copy of the Board of Jewish Ed's excellent "Managing Food Allergies in Jewish Schools" (oddly unlisted on their site). As the director took her copy, she began to look offended, while the teachers looked bemused. I handed out the FAAN's guide to managing food allergies in schools, speckled with seals from approving organizations, and explained that I'd used these as guides to think about what is typically done for food allergy management plans. The director's jaw clenched. And I handed out a skeleton FA management plan based on these, in which I'd identified things that I thought of as the parent's responsibility, teacher's responsibility and team responsibility. I explained that this was a potential template, and perhaps we could use it to clarify together how the Toddles' allergies are being managed.

Too much paper for one meeting, I know. It's a failing.

And apparently, it was offensive. The director's jaw tightened farther, while the teachers looked astonished. And then, after a brief, gaping pause, the hail began to fall.

Why do we need to write this stuff down? It's just what we do.

Why do you need to know this? You could come and watch us. (I could, I'd see what you do, but I also want to understand why)

Look, look what we do for him! (example A, example B, example overwrought C)

See, here's all of his foods (cupboard opened), just like we told you. See? the baking things? (cupboard opens again), all kept separate.

But why do you need to go through this? We're doing what you told us to do. See, we use paper plates for his food. (I find an internal wall, and bang my head on it.)

Here, here - this is our food allergy plan for the school. (I look at this piece of paper, surprised. I'd never heard of its existence until then, but oh - before I pause to be reassurred, there's the Toddles' allergies listed at the top, along with every allergic child's list. Except that many of the Toddles' are missing. Sigh. But enough rumination - people are hollering now.)

Here, here - this is what we do for him, specifically. (Another piece of paper, also missing great big important things. I ignore the sense of disorganization from these bits of different, incomplete papers. Be positive, I remind myself. Point out opportunities - not lack. I find with my finger a few such on the FA management skeleton I've given them, and then my hand goes limp as the tide rushes past me.)

Okay, so what about this? (finger jabs at page) What does that mean? Realizing that I actually get to speak, I open my mouth. This means that one of you does a quick visual scan of a room when you enter it with the kids. You don't have to leave the children, just run your eyes over the area, and if you see some food there, be prepared to respond accordingly. (Referee's call: clock runs out for the mama, possession turned over to the other team)

What do you mean scan? We have responsibilities to the other children, we can't just abandon them - and what if we see something, we'd pick it up, but can he react to the crumbs? (blood pressure climbing - mine. blood pressure climbing - theirs.) And what if there are crumbs that we don't see? Is he that sensitive? (penalty to the mama for opening her mouth, preparatory to trying to respond, saith the ref) Does every room, asks the director almost gleefully, have to be vacuumed before he walks in? Because that, she says, the glee shifting to triumph, we cannot accommodate.

sigh. Did I ask you to?

Oh, but I can't narrate the meeting. It washed over me like a bad sitcom, predictable once it got going, and with an inevitable result. Hours, minutes, who knows what later, I felt like a herd of elephants had been testing their hot pink stilettos on my skull. Don't you trust us? asked the director, and I nearly began roaring.

Trust is earned, I nearly said. I trust that you will learn with me - not from me, with me - to figure out how to keep him safe. That we will work together. This is not the same as trust that you'll instantly become an expert on my son's specific allergies. That would be unfair to ask of you, I explained, actually managing to get a couple of full sentences out before the next stiletto descended.

But on they went. Until finally, it ended.

So, will he be back at school tomorrow?

Gathering up my things, I held myself together. While for the first 2/3rds of the meeting, my job had been to listen - but never, ever criticize (note: asking a question implied criticism, criticism implied a lack of appreciation for the astonishing, unbalanced and deeply caring effort the teachers had put in), for the last 1/3rd my job had been not to lose my temper. Or, worse, burst into tears. I respected those tears, but I knew that the room of defensive, perplexed - and one rather spiteful - women would not. So.

I took a deep breath, and spent a steadying moment putting my pencil too carefully into my bag. Then I stood. No, I said, gasping a bit. I'm sorry. He won't be back tomorrow.

But it's his shabbat!*

I struggled a bit, and then said, very low, yes. But we haven't resolved my concerns about the allergy management plan, so no, he cannot come back. And I left, brushing past blurring faces in the hall, and making it nearly to the curb before the shakes started.

Oh, no, said one of the parents as I rushed past. That doesn't look good.

I couldn't have agreed more.

* each child takes a turn bringing the challah for the shabbat circle, lighting the candles with one or both parents, and sharing the challah they'd brought with the class. For the Toddles, this would have been especially significant, as he is always the child who isn't shared with. And he notices that.
************************************************

I am sorry to admit that no, this was not the ending. I wish it were. But I'll continue telling this story. In the meantime, I've finally licked every damned flap on the Chanuka cards, a tradition stalled for three years (buy the cards, refuse to spend extra on preprinted, buy card stock in bulk, plan to cut stock, print photos, cut photos, glue photos, write sweet little message, make list of people to send to, find addresses, address envelopes, seal, mail. Or not).

This year, off go about 20 or so cards into the wild, addressed to a slightly random assortment of people whose mailing addresses were close enough at hand. And especially to my grandmother, recovering from emergency hip surgery and doing her best to prove that she can go home, rather than to a nursing home. Oh, yes. Especially to her.

Wishing you all light and joy and health this season, and especially some listening, caring ears. My thanks to the oh-so patient skulls attached to mine. Yes, I know I'm droning on. I wish I weren't. Change the channel, somebody, 'kay?

Coming Soon: Talking to the Toddles (part 4, but the Toddles was happy)

Backtracking? See here for parts 1 and 2.

But the Toddles was happy: part 2

The day before Thanksgiving, the Toddles' school had a Thanksgiving celebration.

Everything will have wheat and eggs, the director'd tossed at me, and surprised at the ire in her voice, I'd backed away. But not far - uncertain how the Toddles' needs were being considered for this event, I arranged to be one of the people setting up for it. I spent an astonishing amount of that time running around to figure out what the allergy plan was, and who was responsible for carrying it out.

Surprisingly, that person seemed to be me. Um. Insofar as the organizer could tell, she said, puzzled, and tried to find someone to tell her what she should be doing. I shrugged.

Since the Allergy Kid is my kid, I ran back and forth while the organizer asked the parent association folks for guidance, securing the Toddle friendly cookies in my bag, marvelling at the squishy Toddle-friendly cupcakes (did they follow the recipe? I wrote it down - but no, they hadn't) and flipping plates onto tables.

A rather rushed job - and quick breather - later, the room was packed with children and their parents. For a large social hall, the room blinked and was full. We blinked again, and were mustered into a large clump, to sit and listen to stories and sing songs.

did she really say Indian? hissed a mother behind me. Shhhh, said the other. I grinned. Toto, we ain't in Cambridge no more. But the songs were silly and fun and we giggled our way through Albequerqe and his turkeyness. When we all sat down, I noticed that our table was the farthest from the door (far, far, far), and yet closest to the food (wheat, wheat, wheat, eggs). From behind my shoulder, a parent flipped a plate of cakes past me, dropping then sliding to the child across from us. Crumbs bounced across the table as a nearby parent watched, then looked at me worriedly. This stuff is all safe for your kiddo, right? I shook my head slowly, the hairs rising on my neck. No, I nearly whispered. It's really not.

Around us, children ran through the room, shouting and carrying food (wheatwheatwheateggs), and I looked at the chaos and realized that we were safer huddling in our corner for a bit.

So, the Toddles and I sat and ate bowls of soup, made especially in his classroom, with a knife and board reserved for them (and kept there), and tomato juice that I'd spent two hours checking out. (Oddly, tomato juice manufacturers also tend to make fruit punch sorts of juices. A.k.a., kiwi.) I'd carried the sealed pot upstairs, heated it myself, served it myself with a clean ladle. Plus, it was good. Hey, look, I pointed. Is that a green bean you've got there? Oh, but I've got corn in my spoon. The Toddles considered, and dug his spoon in deeper. Aha! I have corn, too, he informed me.

So. We avoided crumbs on the table, did not pick up his fallen spoon (crumbs under his seat), did not leap up to play with his friends and all in all, did a fantastic, unexpected, desperate job at teamwork. I was so grateful to him, I nearly cried. I carried him out in triumph, wiped him off and popped him into the car. As I finished the last buckle on his carseat, his teacher walked by.

So, how was it? she asked, kindly. I shuddered. Not going to do that again, I said ruefully. She patted me sympathetically. But, I perked up, he loved that vegetable soup! What was in it? Happily, the teacher reeled off a list of ingredients and I listened. Until my brain stopped cold, clutching my spine for support.

I muttered something and drove off, checking the Toddles in my mirror. One eye on the child, I drove past the Eldest's school, completely forgetting his early pickup time, watching, watching, watching the little one.

Thirty minutes later, the Toddles woke out of a sleep, wailing. Don't make me eat any more food - my tummy doesn't want any more food, he wept, clutching his middle. I eyed him carefully. He was flushed, and clearly in pain. And nausea.

A reaction, with one - possibly two - body systems, if the flushing was allergic and not from sleep. I nodded grimly, and stuck the EpiPens in my pocket.

Soothed back to sleep, the Toddles had perhaps a 40 minute break before the second wave. Already wire-tight, I was moving up the stairs before he quite finished that first cough. (Behind me, the Eldest watched with wide, worried eyes.) I held the little guy while he coughed and cried, my hand creeping towards the Epis, stilling, moving towards, stilling, pause and vibrating pause after pause. Finally, he stopped.

I knew what had happened, but not how. The teachers had used a soup mix for the veggie soup, one I'd flagged as potentially problematic. It could be fine, but I just don't know, I'd admitted, using one of my favorite lines. So I'll check it out and get back to you. The teacher smiled. It's really no problem, she said, we can always use water and a bay leaf or two, maybe a peppercorn. I nodded. Conversation done, messages delivered. And, short of someone sprinkling flour on the soup I'd guarded and served, the culprit was unlikely to sit somewhere else, thanks to the Toddles' unrepeatable teamwork. So how did we end up here, wavering on the brink of anaphylaxis?

I hadn't a clue.

The Man and I talked through the weekend, weighing the risks. The math just didn't look good, and we now worried about how little we actually knew about the allergy management. Three repetitions of the same mistake, four exposures and two subsequent reactions, I said, each one worse than the last. How willing are we to stick around for the next one? The pattern is just not good. We looked at each other, worried. I'll call the teachers and explain, I suggested, and we'll keep him out of school until we can have a meeting to review the allergy plan, given what's happened. The Man sighed. Keeping him home will, if nothing else, show how seriously we take this, he pointed out. And I hoped so.

On Tuesday, the Man kissed me goodbye, airline schedules in hand - and wished me good luck. I juggled kids, housework and agenda building until Thursday, when we'd all agreed to meet: the teachers, the director and I. I left the boys delightedly dangling off of QG at home, and drove off smiling. But by the first stop sign, I missed the Man fiercely. Three schools before this one, I mused, years of advocacy and teamwork in emergency situations, academic settings, and oh so much more - and yet, something here worries me.

I walked into the building, and nearly into the preschool director. Her back to me, I listened to her spitting out her frustration with me, and her relief that we're meeting with her tonight. If she's not prepared to be flexible, then she can just go. Over the director's shoulder, her listener met my eye, embarrassed.

oh, dear.

The director turned, saw me, ducked her head and escaped down the hall. Now this, I whispered, is not going to help at all. And it did not. I walked into the classroom, chatting with the teachers, and popped into a chair. The teachers sat down, and we chattered happily until the director came to the room, sat in the chair next to me and slid it away. I looked at the arc she'd deconstructed, and considered the row of four chairs now sternly facing my lonely one.

oh, boy. This is not going to be good.

Clearing her throat, the lead teacher caught the director's eye and began. We're not sure why we are here tonight, she said, and my heart sank. We've been over the things we did in preparation, she went on, and we see no problems. I aimed at looking friendly and interested, glancing at the bit of paper she gave me.

There, about a third of the way down, it said: onion soup mix - approved by Mom.
I looked up at the calm - and one smug - faces.

oh, NO.
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Coming soon: But the Toddles was happy: part 3

Backtracking? Look here for the start of the story.

But the Toddles was happy: part 1

I have a deadline today, and a bit of writing that is occasionally lovely, sometimes wry and entirely entangled in something that crept in when I wasn't looking. I know what I need to do for it, but I haven't the time to do the difficult stepping-back and patient fresh-sheet-of-paper rewriting.

More to the point, when I think about doing the work, I can feel how stuffed full I am with story already, holding myself together while bits of narrative and emotion leak out the edges. Generous, wise friend after thoughtful patient friend have now listened to me wail, and still I'm walking carefully, feeling stuffed full of something unwieldy and sharp-edged. Holding my seams closed, I think that I have forgotten this blog, and how it lets me just drop my mess onto the screen. Story told, and clean, breathable spaces inside my chest.

So.

When the Toddles was roughly a year, we already knew about his egg and wheat allergies, and had realized - together with the Eldest's preschool - that this was not going to be something the preschool could manage. Not in the youngest classroom, but perhaps the one afterwards? Relieved to have an honest opinion from folks we trusted to do their damndest, we waited. A year later, we all agreed that yes, this could work - if the floors were replaced before school started.

I was on the committee that managed to not get this done. But there was Mary Jr, and QG, and how could we possibly be so lucky? How can he ever go to school, my mother fretted, but I was certain we would figure it out. And we did.

Last year, the Toddles was offered spots at three different preschools, one which had had the Eldest at his youngest and non-clottingest. We chose a Jewish preschool with a nicely low-key religious approach. It had a promising trifecta: near enough to the Eldest's school for the commute to be manageable, with a strong enough budget to be able to afford accommodations for an allergic child, and above all, a range of experience with food allergy. It also happened to have a kickass curriculum, which I rather liked. Anything you need, just tell us, the director exclaimed, expansively. I suggested that perhaps we could work together, instead of me issuing instructions, and we smiled at each other.

But it was difficult to set up a meeting before school started - the teachers are on vacation, the director said, and I'm buried in work, can you email me back in September? and there we were, early September, days before school started, and the director offered me 15 minutes. I took 45, and the teachers hung in there with me.

We all did our best, but one meeting could only scratch the practical challenge of a wheat allergy in the classroom. And the director had stayed at that meeting just long enough to nix the idea of a wheat-free classroom, leaving me worried and gaping in her wake. The teachers, however, looked unsurprised. And unconcerned. They'd handled a kid with celiac the year before, they pointed out, in addition to others with severe allergies. A deep breath, and I'm going to trust you, but I'll admit that this makes me very, very nervous, I said. Just let me know if you have concerns about managing his allergy in a classroom with wheat, okay? I clamped my mouth shut before it labelled me a nervous mum, and shoved my gaze back to my notes.

Despite our years of experience with food allergy and classrooms, this was bound to be different. I knew that, going in. While I'm not a fan of the peanut-free rule, generally speaking, it does offer a beautiful simplicity. Identify allergen, remove allergen. Bam. But the peanut-free rule doesn't reconfigure itself automatically for the wheat allergic kiddos, even if they are laying claim to one of the big 8 allergens. Sorry, kidlets - wheat is so pervasive in the traditional early ed classroom that the early ed folks tend to stop and stutter when they think this one over. There go the snacks, they think. There goes the playdough. There goes the baking projects. There goes - oh, no. And they fall silent.

Obviously, a wheat-free, or gluten-free classroom can be managed - of course it can - but setting one up can only be a labor of love, driven by the deepest commitment to the individual child's needs. A big ass budget doesn't hurt, either, but we'd seen the Eldest's astonishing preschool director manage food allergies without one. Having seen her head off to the wilds of PA, we knew our chances of another paragon were slim. And so they were, but

It doesn't take a paragon to do a good job. Still, I admitted to the Man, I'm nervous. It's a bigger risk than we've taken before, and it's hard to walk the line between showing how serious the allergy is and working out terms for the allergen's management in the classroom. If the allergy is that bad, then why is the kid there at all? That's the real challenge: explaining that choice to the teachers and admin. The Man nodded, quiet.

There was no time to be nervous. Art supplies needed to be checked for wheat and egg, baking projects needed to be rethought, snack needed to be figured out, not to mention birthday celebrations, clean-up procedures, all school programs flagged for potential issues, and anaphylaxis training done. We did our best, and scrambled to keep up as school began.

Inevitably, there were mistakes. Unwarrantedly, we were lucky. When the teachers didn't have diaper wipes for the children to use at the door, the Toddles popped out in hives. The next day, children and their parents carefully wiped hands and face with wipes, and the Toddles was fine. Art supplies were used before I'd checked them, once and then twice. And look, he's fine now, the teachers said happily, and We cleaned him up carefully afterwards. I took deep breaths, and explained again.
***********************************
Building an Allergy Friendly Classroom, Imperfectly (part 1):

Step One: don't automatically go peanut/whatever-free. Breathe. Mutter "balance" to yourself repeatedly. Assess the situation with the teachers & admin, and then decide if you need to go X-free. Check your decision with your allergist, if need be.

Step Two: brainstorm as follows. Mutter "ruthless pragmatism" as you do so.

The teachers and director (education/classroom experts) work with the parent (individual kid-expert) to identify risks and rank them by degree of hazard. Minor and moderate risks accumulate beyond manageable levels, surprisingly fast. Eliminate those that can be easily eliminated. Look at the remaining risks, and decide which must be eliminated for the child to be safe. Decide which can be managed, and work out how. Make sure you are taking on a reasonable, sustainable level of effort at any one time, and consider how much focus and stress can be handled over the course of the day, for teacher and student. See if the final situation seems manageable.

Above all, remember partnership. The parent has responsibilities to make this manageable, just like the teachers and administration. With good training, even the child has a part to play in making an allergy-friendly classroom work. (As do his classmates.)

translation: if you can avoid using something that is potentially risky, and it's simple to do so, then do. Especially if the avoidance is temporary, budget-friendly and helps folks relax by reducing risk. Convenience is not worth the risk of a reaction. Major imposition and effort by the teachers, staff and parent, however, should make us all stop and think.
****************************
Hallway conversation after hallway conversation followed, and the teachers and I worked to be clear and responsive. Baking projects became Toddle-friendly, and I grimly dropped their cost onto our already irked budget. Birthday celebrations became Toddle-friendly, and the budget sighed with relief when parents took the shopping over from me. But I couldn't help worrying about the emails unanswered, and the risks of the hallway chat - was I clear enough? Did I absorb enough of the information I was given? did I understand enough about how the wheat-based snack was handled? but the Toddles was happy, chattering and tired, and the "but he's fine so far" line crept in and painted my brain into quiet.

He was fine. And oh, but he was happy.
****
I'm going to have all the fun! he told me, disappearing into his classroom. He poked his head back through the door. Write that down, he told me, sternly. And I did.
****
This, the Toddles informed me, is gadol.* He pointed, then looked around. That, the Toddles instructed, is katan.* I followed his solemn finger and nodded. Indeed, it is so.
****
I know what we should sing, exclaimed the Toddles on a Friday night. He leapt up from the table, and arranged us all in a chain. Hiney rakevet, sang the Toddles, and lead us around the room, hi mistovevet, hagalgalim hagalgalim hagalgalim. Grinning, laughing we all chorused, toot! toot!
****
Oh, yes. He was happy.

The teachers smiled, I called companies and talked to customer service reps, ran to the grocery store daily and watched a sleepy Toddles nod off over his lunch. We all tried hard, and it was good. No big alarm bells, no maps saying beware, here be dragons.

It wasn't so easy to get information, though, and I found myself backing off, not wanting to rock the boat. What happens when they do this? I asked a parent, who then patiently pieced together what she'd seen and been told. What's being served then? I asked the parents' association folks, who shrugged. Can you tell me more about this? I asked the director, who looked irritated.

You can't keep him safe, not completely, you know, she informed me. I swallowed a follow-up question and watched her, carefully. People eat all over the building, and you can't control that. She flipped her hands in the air, exasperated now. If you take that child out to a restaurant, someone will be eating something he's allergic to. I leaned forward, and invited my calmest voice to the fray. This is true, I said calmly. He will never be completely safe. But the more information I have about what food is being served next week, and what it's made from, the more precise my risk analysis.

The director leaned back, pushing a short, sharp breath through her lips. Everything [at this event] will have wheat and eggs, she informed me, and I was dismissed.

Aha.

I sought counsel, and decided to take a mellow line. Thank you for your time, I wrote. I see we share different views on food allergy, both in and outside of the classroom. I look forward to learning more about your approach. The director and I smiled at each other, but inwardly, I fumed. She was lecturing me about food allergy? I waited for my brain to put its hands on hips, cock my head to one side, and spit, WTF do you think you are doing, lady? But there was silence, and a looming calm. In that silence, a stern, British voice stepped forward. Oh, no, it said, rich with disappointment. This will not do at all.

But the Toddles was happy.
****************
Coming Soon: the amended Imperfect Guide to Building an Allergy Friendly Classroom, and why it didn't do, after all. Or, if you prefer, part 2. And see here, for part 3.
****************

Glossary:
hiney rakevet, hi mistovevet (etc): here is the train, it goes/ the wheels are turning...
gadol: big
katan: small

insert post here

no, really.

We're sitting in a painful limbo with the Toddles' preschool, for reasons I just don't have the energy - or coherence - to explain. But there will be a story to tell, and a post that fits here. Right now, there's just a sense of being stuck. And worried. And not really wanting to feel betrayed and angry, because how on earth is that going to get us unstuck?

But feeling that way anyway. And still, trying to get unstuck.

quiet, with the odd worrying rumble

I'm not silent here - I'm silenced. When I figure out how to talk coherently about this situation, I will. But right now, I'm - oh, dammit, grr is just to prissy for an anger this visceral.

But want something afterschool special to go with incoherent rage? Try this:

I called my mom the other day, and apologized. I'd just had the Eldest's parent-teacher conference, and now I understood how packed those meetings are with hope and worry. I went in there wanting to know if the Eldest, now a sharp-edged grump after school, was a terror of the classroom.

They wanted me to stop fidgeting at them so they could sing the child's praises. For lo, unto the 1st grade, an Eldest is born. And he readeth at the 3rd grade level (just finished reading Mary Poppins to himself, and damn if he didn't understand it), and he computeth far beyond his years (and occasionally beyond mine, but that's not hard), and he spak and wrote and thought in manners astonishing. Handwriting's not bad, either.

No slouch our lad, and the chess club leader popped in to remind me. He's won a what? a tournament? The instructor looked at me pityingly, but really, now. Isn't this faintly absurd?

Oh, and he's a mensch in class.

So, I asked, what the hell is going on when I pick him up? He looks and acts like he's been through a wringer.
Ah, said the teachers, and looked somewhat embarrassed.

It seems that the allergy table in the lunchroom is now populated only by one allergic kid: mine. But last year a non-allergic child or two opted to bring Eldest-friendly lunches, so that they might sit with him. This year, the table is packed with the non-allergic and their allergy-friendly food.

It's become a real social hot spot, the teachers admitted, and none of those kids are eating a proper lunch. They're all grumpy at the end of the day.

I thought it over for oh, a millisecond.

That's just fine, I told the teachers. Do what you can, but I'm not complaining - I'll just pack him a bigger snack when I pick him up.

The Eldest's year has begun, shaped by community and friendship - and there's been a ripple effect in my direction. This year I've been watching friendships bloom with a number of 1st grade mothers who are perfectly happy being quirky and totally unafraid to discuss something taboo. They are taking me back to school, pushing me to rethink any number of complacently held ideas. And above all, laughing at me when I thank them for vacuuming, or shopping, or even baking for my crew.

Apparently the Eldest's friends get it from somewhere, and friendship really is more important than what you eat, or where you eat it. Damn.

(and now, a return to incoherence.)