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.

plundering buckets

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

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

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

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

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

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

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

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

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

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

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

But hey, I'm his mom.

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

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

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

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

And honestly, it shouldn't.

thankful for....Mike? (a burble and a serious thought)

I am sitting on magid's couch, half-asleep, and waiting for the laundry to dry. Because, yes, the Mikes have struck again.

On Tuesday, I checked the clock: 10 minutes. 11 minutes. 12 minutes. How long should my oven take to warm up? I checked the oven thermometer: 260F, said the thermometer. Ding! said the oven. I'm at 350F.

Are not, sneered the thermometer.

Aaaargh, said I. And called Mike.

On Wednesday, Mike replaced the heating elements in our oven, and we bid a happy farewell to the smell of gas from the broiler's heating cycle. Ah, said the oven. That's better. Oh - and by the way? F7:E0

F7:E0? said I.

F7:E0, confirmed the oven.

Okay, said Mike. Turn off the circuit, wait a minute and turn it back on. I'll call back in ten minutes. And he did, and I did, and all seemed well until Thursday morning, when....honey? the Man said, shaking my shoulder with a not-as-calm-as-I-sound grip. The oven has some wierd error message, and won't heat up.

Aaargh, said I.

In case you are wondering, the wise people at Kitchenaid inform me that F7:E0 is the product of poorly connected wires. Or possibly a faulty door latch. Or possibly a faulty board (a.k.a. expensive electronics). But once we'd coaxed the oven into heating up a little, the connection relaxed into the heat (how?), and allowed the oven to continue. We flung the rolls into the oven, followed immediately by the stuffing, and I'm delighted to say that the turkey was done a fantabulous three hours before dinnertime. Between Jonathan Reynolds and the temporary hiatus on F7:E0, we had ourselves a feast.

There were rolls and piles of veggies, making small talk with olive tapenade, unMarthaed green sauce and shamrock hummus. There was salad, for those who transition reluctantly to the main course, cranberries and sweet potatoes provided (and funked) by our guests. 21 pounds of moist, crisp-skinned turkey (if I do say so mahself). Hot dog stuffing, which you gotta try to believe. (think: sausage, fennel, pears, herbs, cubes of bread and white wine...) A nice bottle of wine, that had somehow survived its tenure under our window seat. And dessert: strawberry-lime sorbet, pineapple sorbet, blueberry pie and a plateful of fruit for anyone who missed the course's subtle theme.

We draped ourselves over our chairs, moaning quietly. Some people went home, after explaining that next year, they'll show us how this holiday really oughter be done. We staggered off to bed, happily contemplating the tautness of our bellies.

F7:E0, the oven murmured to itself. Three feet away, the washing machine hissed with jealousy, anticipating the Mike to come. And then, inspiration struck.

Water pipe closed? inquired the washing machine.

And so I am here, waiting for the dryer and imposing on magid's hospitality. Mike will be back on Wednesday, having soothed the oven's wounded spirit on Friday (he's 95% certain, says Mike), and determined that the washer requires new water sensors. Of possibly just a new mizzeekatron. A nice giraffe? Something.

So here I sit, trying to figure out if there's a way that we can throw out our enormous, ancient TV and DVD player, and still show the rare DVD to the kids on....some sort of bit of electronics that is neither large, nor expensive. Preferably free? Easily packed away in an over-full cabinet?

(Seriously, people, make with the suggestions here.)

And I'm reading this, about special needs in the Jewish community. Which makes me sad, because I know that outside of our wierd little community-bubble, what Dov and Devorah describe is true. Children with special needs are not well served in religious Jewish institutions, often for financial reasons. Sometimes - as we learned - through ignorance, lack of experience, flexibility or empathy. But often, it's money that stands as a barrier between a special needs child and a religious Jewish school.

Even if you can wedge the kid in, however, the school culture will make or break ya. Parents who embrace you and your oddball kid? Or parents who will sneer, and leave your kid out of the birthday parties, the playdates, the social life that unfurls through the child's school day? If the money for support services, or even just the adaptations isn't there, you don't get to find out. Not at a religious, private school.

But synagogues are a different question. There, the community's culture - their ability to incorporate, or accept (not just the rather arm's-length idea of "tolerance") the child is even more critical than their finances. We go to a shul that is perennially broke, but the community culture is one that has people looking for ways to include us. Last year, when the Toddles was forced out of his preschool, our shul was the place where we showed him that Judaism happened outside of our house. And that it could include him.

I don't need to explain why that's crucial, do I?

Which means that this comes down to a question of leadership. If more rabbis, like Dov, had children with disabilities - invisible or otherwise - then maybe something would shift. Or knew someone, or loved someone with a disability, and saw how this isolated them. Or saw how hard some kids struggle to build a positive image of themselves - their imperfect, frustrating bodies/brains/worlds - and how damaging that closed door can be.

A closed door isn't community. But do the rabbis even realize that the door is closed?

a sign and a bowl of leaves

At some point, autumn arrived. Which frankly, is kind of rubbing my nose in the absence of summer. The disappearance of August, the blur that was September.

Really, any number of things appear to have vanished on me. The summer, bursting at the seams with discoveries, such as this local resource, which allowed slightly grubby, map-wielding boys to practice the fine art of hiking, getting lost, unlost and peeing into local waterways.

(and no, I won't show you a picture)

The school prep arrived, mid-summer, hoisting a mammoth set of lists (school A, preschool B, to do for meeting 1, for meeting 2, for meeting 3, for follow-ups until late into many wee a.m.s), hollered continuously in my ear from oh, June onwards, and then suddenly, fell silent. School! School! School! School! rushed in to fill the space, with a small dash of ohmygoodbritchesandstiches - a carpool? Appallingly, we found ourselves inadvertently early to school, and then to preschool. For three weeks straight. Who can keep that up?

(When we pulled in 2.5 minutes late today, I offered up a quiet sigh - of relief.)

And then, the chagim were upon us.

If I stop being chipper for a moment, I'll admit that the second half of summer was an ordeal. Not the parenting part, that was tough in spots in an entirely (okay, almost entirely) standard-issue fashion. But the school prep was enormous, and worse, it was shared. The Man and I worked together on it for the first time evah to assemble resources for the teachers, to write explanations of how to handle allergens in the classroom, what Good Manufacturing Practices actually means - and why it's not even close to reliable as a way of saying "safe." And recipes, and lunch ideas, and snack ideas, birthday party ideas, and develop a gluten-free, vegan, kid-friendly *and* easy challah recipe, and, and, and, ack.

Let me put this simply: some things, it's easier to do myself. Some things, it's easier to do with someone - okay,anyone -besides the person I love, cherish and really hope to spend as many years with as possible. Some things, I should be smart enough to do with a girlfriend, or maybe a minion. (note to self: get minion) And, if I have to do it with my loved, I've got to remember to brush up on the diplomacy, and brace for long conversations about how the process is going, when I'm really just twitching to stop talking and get back to getting the job done.

Ah, meta-conversations. So almost-nearly-useful. Except when they are.

And a word of advice? If you do end up in this loving but rushed, ginormous To Do list of kid-with-thing school prep, buy a rope. And a shovel. Take up meditation. And when your partner suggests that maybe it's not worth doing something that you are certain is critical to helping walk that fine line between the child's needs and the school's needs, well, breathe. Put the stapler down, hon - it's really not going to make you feel better. Not in the long run, anyway.

Just breathe. (FYI, gritted teeth are acceptable)

And then blink, realize that the summer ended shortly before the kids hoisted their backpacks and bounced down the stairs, oh, a good four minutes before I managed to follow. Oh, and that so far, so good. And then, hello, it's Rosh Hashana, and there's the Eldest, unsubtly holding this:

Because if you are going to begin a new year, well, Nahman of Breslav might've had something there. Take another deep breath, hon, and find a way to greet each man with a pleasing face. The gargoyle thing does not seem to suit me, saith the Toddles, and he informed me that I was the grumpy parent, while the Man is definitively the fun parent.

Oh, ouch.

I walked around, smarting, and occasionally ranting about working parents vs home-working parents. And then apologizing to my offspring, when my rants became audible. Don't worry, Mum, I'm used to it, the Eldest soothed.

Ow, ow, ow, ow, ow bloody ow.

Some years, Rosh Hashana and Yom Kippur are a necessity. A chance to back up and rethink, after a time of change and grumps. Happily for me, neither of our boys are subtle. Panim yafot it is, then. And a healthy bowl of these:

We sat on the bed, the boys and I, with Yom Kippurd daylight fading outside our window. A bowl of autumn, of color and leaves fading from bend to crackle, between us. We looked at the bowl.

Every year, I told my unexpectedly solemn audience, leaves grow. Leaves fall. And then, they grow again. And every year, we make mistakes, realize our mistakes, and try to do better.

Every day, the Eldest corrected me. And I grinned. Yes.

These leaves are falling, and we can let them take some of our mistakes with them. What kind of mistake, or "I'm sorry" do you want them to be?*

I'm sorry for hitting my brother.

I'm sorry for not cooperating

I'm sorry for taking his Pokemon card

I'm sorry, said the mama, for not taking good enough care of myself, so that I can take better care of you.

two pairs of small boy eyes swivelled towards me. One set of eyebrows arched.

Because, said the mama, when I'm tired or I have too much to do, then I'm grumpy. And then I'm not having fun with you, am I?

two heads nodded solemnly. So, then. I'm sorry. And I'll try to do better, to find boy time in each day. Because boy time is part of taking care of me, you know. Boy time is good.

two grins quirked. They already knew that, but were too nice to say so, I suspect. And so we sat, a bowl of sorry leaves by our legs, our hands and arms wound around each other. And we watched as the sky striped with pink, shading grey and blues at the fading of the day.

*****************************************************************

*this was a type of Tashlich , in which we cast away the burdens and sins of the past year, by throwing bits of bread or cracker into a body of water. The Eldest's class, however, raised the problem of throwing stuff into the waterways, and they chose to do a class tashlich with peat moss. Give nature to Nature, the Eldest intoned. And glared when I suggested a family tashlich with Imperfect-friendly bread. So, leaves.

school prep & advocacy couture

shhhh - I'm not here.

I'm actually at a cafe, in the Cone of Silence, working. Except when I stop, and do paperwork for the boys. IHPs, allergy action plans, emailing (not begging. certainly not begging) for meetings with admin, teachers, People With Power, and occasionally, ogling lunchboxes.

(I don't have a proper, official lunchbox - is that a good enough excuse? mneh. Maybe not. Admission: I carry my lunches and snacks in a former wet diaper bag....works great for holding liquids.)

We're assembling lists of potential lunches for the Eldest's classmates, lists of snacks, medical kits, and researching our heinies off. Occasionally, we test out dairy-free, egg-free (etc) and gluten-free challah recipes, for the Toddles' preschool. Many thanks to a certain river, who offered a number of excellent suggestions, not to mention a really, really patient rabbit, who let the boys love her to the point of rabbit-terror. And possibly six or seventeen steps beyond.

And then there's the editing, due this past Monday. And the column, due alarmingly soon. Ack. And the garden bed that is, somehow, not quite built. Four of the boards were, oh, imperfectly cut by the friendly Home Despot guys. They gave me a free measuring tape, to my astonishment, but then cut the boards too long.

Which will teach me to use my brand-new measuring tape next time. Smiling the apologetic, harmless/semi-hapless female smile as I do it, because somehow, that seems to suit what the Despot lumber guys expect of me. (The folks in the garden section, however, use a very different paradigm. Hm.)

Paradigms are exactly the major topic of discussion around here, as the Man participates in school prep for the first time. We're talking about what the teachers want to see, what builds confidence, and the many, many ways that we think we could screw up. Honestly, I can't quite shake the certainty that we will - that I will. Because, of course, we're trailing the albatross of last year's preschool behind us.

Okay, mostly behind me.

It's funny how one trip to the Despot can get a mama thinking. The moment I stepped into the construction materials section, I realized that I was carrying the solitary pair of ovaries - and was treated accordingly. Kindly, and with a degree of amusement, and I happily played the role I was assigned. And then went home, thinking. Oh, yes, I'm focussing furiously on looking ahead - no pillars of salt here, thank you. But I can't help shuffling through the flip-deck of paradigms for school prep season: the alarmingly competent mom, the earnest mom, the wry mom, the medico-mom, and oh, I hope not, the martyr mom. I'll shuffle through many of these as I write and talk over the next few weeks. And occasionally, I'll flip off the albatross, dipping into silliness (and rabbits) to leaven the paperwork, the editing and the column.

Which means that I'm punchy and flibberty enough to be considering couture:

which of these (this, that or the other) should I choose for that first meeting with the teachers? for the Eldest's school? for the Toddles? Something that inspires a comfortable relationship, fitting with a sense of relaxed, engaged teamwork, but that says just enough about authority for the teachers to listen when I tell them something beyond their philosophy, o Horatio.

Help! my wardrobe genius moved to Philly, and the Eldest isn't playing style guru this month. What would you wear?

hat tip for finding the funny shirts....thanks!

But the Toddles was happy: part 4

When I was in high school, I took the subway to school every day - a roughly 45 minute trip. These were the days of Bernie Goetz when you didn't look anyone in the eye, and worked to maintain an apparent lack of awareness of your fellow subway riders, while avoiding elbowing one of them in the shoulder holster. You were, however, permitted to subtly read their newspapers, so long as you remained sufficiently aloof while doing so.

Riding the subway opened up a world of journalism to me - my family got the New York Times, but the New York Post, the New York Daily News, the New York Observer rustled around me, and had (gasp) funny colorful bits, like comics and horoscopes. But those, saith the paterfamilias, were candy for the brain. Real news was serious stuff.

(note: unlike this blog)

Nowadays we get a newspaper that is - almost - serious. And it has the funny pages, complete with horoscopes. And oh, but had I been better at ignoring my father, on December 17th I would have read my horoscope. And stayed home.

You appear to have everything under control but someone you know will give you a difficult time, regardless of your well-thought-out plans. Follow your heart and stick to your game plan.
- 12/4/2008 Boston Globe

Um. Hm. (shrug) Nah.

Our bags stuffed with paper - printed emails, prioritized lists of issues to discuss, talking points, resource sheets, documents of various sizes, tones and degrees of authority, the Man and I deposited the Toddles with a friend, and trudged off to the preschool. We were prepared. We'd done drills the night before, planning what we'd say if this, if that. We had it, well, well-thought-out.

The parking lot was cold, and our feet slid on the ice. Deep breath, I told my love. Here we go.

We were meant to meet with the director of the Toddles' preschool, and meeting set up months ago, after an irritated director suggested that perhaps I could be more reasonable than ask questions about ingredients. I see (I paused from typing to unclench my jaw) we share different views on food allergy, both in and outside of the classroom. I look forward to learning more about your approach. And I set up a meeting, to prove the point.

One pounding headache later, I was less certain that there was a point worth proving. I spent a week wandering around looking like a kicked puppy. Shocked, silenced, flabbergasted, I stared at the walls as if there was an answer written there somewhere. Slowly, slowly I began to realize how lucky we've been in our schools, how little I have had to do with our success, and how much it has rested, instead, on the shoulders of the educators who have chosen to work with us.

One after the other, doctors, teachers, administrators, friends, resource people at FAAN, Board of Jewish Ed, even legal friends weighed in. Yes, we ask for much more than the average allergic child needs. No, it's not unreasonable, our measures are necessary. Yes, this happens to other families. Yes, this particularly happens to families at schools with allergy experience, said the folks at FAAN, it's the unfortunate result of a school knowing enough to assume that they don't need to know more. I made call after call, looking for failures in my methodology, places where I might be overreacting, allergy management measures that might be unenecessary. Meanwhile, the director had a similar list of resources, but her phone was silent.

I'm stuck, I whispered. Stuck. I hate stuck, hate helpless, always always looking to use my absurd energy to keep going, to hunt down a solution. But stuck. And stumped: if I am making the right requests, if these requests are reasonable - and possibly manageable - then what do I do now? A local advocate, specializing in schools and allergies, sighed. There may be nothing you can do, she explained. If trust has broken down - trust in you, your trust in them - and defensiveness has set in, there may be nothing to be done. I hated her truth, even as I agreed with it. But.

But, I'm stubborn. But, I needed to try. But, I couldn't bear the idea of failing because of communication. But, can I go to school today? the Toddles would ask, and reach for his backpack. My heart twisted inside me, at his confusion, at his pretend play with his friends, listening to him tell the story of his day at dinnertime, describing school activities and even conversations with his classmates. Watching him, it hurt surprisingly. It still does.

oh, my little love, who is so delighted to find a world of friends outside of our little allergy bubble. I owed him the best my stubbornness can bring, the best 'but' I can find to keep us moving, keep us trying to make this work.

A meeting with a thoughtful, lovely rabbinic sort offered some hope for movement forwards. Listening to her, I could see that she cared very much about the school, the community centered on the synagogue, and she was practical enough to see options for working with the various personalities involved - mine, perhaps, included. She'd talk to the director, see what could be done.

Twelve minutes before shabbat, she called - the director has been working hard, harder that I've ever seen her work for another child, said the rabbi, and she would like to meet with you. I was nervous, uneasy to hear unqualified approval of the director's efforts in the rabbi's voice. But. Really? That's wonderful. Over the phone, the rabbi nodded. And emphasized: hard work, never seen the school do so much for a child, really willing to work with you to sort this out. Eight minutes until candlelighting and one recipe to go, I said a sincere thank you and ran for the frying pan.

Oh, yes, said the director cheerily, when I called to confirm the old meeting slot for the new purpose. And we'll talk about the list we made at the last meeting, of who is responsible for what. I nodded, smiled, and then - wait. What list? Can I have a copy of this list? I emailed, we'd like to review it before the meeting. The screen blinked. See you then, the director confirmed. But wherefore the list? I had a stack of crucial papers to bring to this meeting (you'll never know what you end up needing, saith the Man, and I piled them high), but none of them was a list. List? No, I realized - not list. Agenda. Power play. Oh, shit. Here we go again.

I sat down on the floor, breathing hard. Get a grip, woman, I told myself, but the rant bodychecked me into the boards, and took off. No. it said, I can't let this happen. I've spent weeks feeling like a half-assed idiot for not getting things in writing before school started, for not having clamped down harder on details, for not having been ruthless about getting information, for being too nice to really lay down the law. Especially when I already feel like I've failed the Toddles, and I cannot do that.

This is our chance to sort this out, I told the gouge in the floorboard. Make or break time. Got to get it right. And she's playing games?

I was scared, gasping. Staying or leaving the school meant less, now, than doing right by the Toddles, doing my best and walking away proud. I had failed him, I knew, by not being able to shake off the shock of our last meeting. Bullet points danced in front of me, itemized each place where I could have intervened, been polite but firm and effective. Red paint, diaper wipes, getting the damned IHP signed, the list went relentlessly on. I stared at it, through it to the wall, and breathed. In, out. In, out. Did, did not. Should, did not. Must, will do.

No worries, said the Man. We'll get there early and ask to read it then.

We did. And she didn't give us the papers, prevaricating absurdly until the synagogue president walked up behind her. With two, three smooth sentences he procured the document, handed it to us, exiled the director from her office, and gave us time to read.

We read.

We took notes.

We looked at each other.

The document was a food allergy management plan, a revised version of two different documents I'd been shown a couple of weeks before. I smiled to see the format redesigned around the FAAN food allergy management plan's division of responsibilities. And I frowned to see that, once again, the director had considered and resolved the Toddles' needs - without talking to us. Pique? Real problem? I shoved my reaction aside and kept reading.

And stopped. Attached to the document was a waiver. In signing the waiver, we would agree to the terms of the food allergy management plan and waive, hold harmless, indemnify, do the dishes for anyone associated with the school or synagogue, should something happen to the Toddles. We can't sign this, I whispered to the Man. We need someone to read it for us, first. Make sure it's okay. He looked puzzled. What, I hissed, do you think that this is sufficient?

The Man looked at his list of notes, a string of allergy management measures missing, insufficient, or inexplicable. No, he shook his head. The plan was little better than it had been before the Toddles' second reaction. It addresses none of the major issues we've identified, he pointed out. Communication, especially, isn't covered, and - he stopped, surprised - just look at this! We looked at this, that, and seven varied others. Oh, no.

The director returned, sat, and the synagogue president perched on a chair. He was there as a mediator, I found out later, but it was a role hard to pick out - he began with the usual sympathy, "can't imagine how you do it, stress, must be hard," and moved right on to review his concerns with liability. The director nodded, explaining how synagogue board members had protested the Toddles' admission to the school, worried about liability. She'd fought for him, we were told, she stood firm: he had a right to a Jewish education, like any other child. Director the hero, we saw, caring but concerned president. If we let them keep those roles, the meeting could go well. But there was this, that and the list of others, and they loomed larger than any role. Inevitably, the negotiations began.

The president left almost immediately (got another meeting, sorry), and we sat looking at the director. What about this? No, not going to guarantee that. What about that? No, don't want to be contractually obligated to do this. What about follow-up meetings after an allergic event? The director smiled. We do what we are required to do for our licensure, and we'll follow these documentation procedures, she pointed out, smilingly squashing our suggestions. She paused, remembering those regulations and backed up slightly. But of course, if you want to meet, I'm always available to you.... Watching her relaxed, confident posture, we trudged on. This is a "cannot," but we've never asked you to do that - does it need to be here? Yes. What about this "cannot" - there's a measure already in place for it? I don't want my teachers to feel like they are under scrutiny, obligated to be 100% reliable. Mistakes happen, you know. We nodded. And yet, if this is a contract, shouldn't it be complete? The director shrugged. There are things that we will do as a matter of course, that don't need to be here. We could do this, or that, but I don't want them included here, don't want the contractual obligation. I stared at her blankly. is this a contract or isn't it? Why would we sign something that is missing a measure that we agree upon? How could we?

And - faltering now - how could that be asked of us? Or, perhaps, I admitted, I should be asking why. Why are we being asked to sign a non-negotiable, incomplete contract?

We tried again, and again. We understand that you cannot control the condition of a child or visitor entering the classroom, but there's a sign on the door already about using the diaper wipes we've provided. It's a simple, effective measure, and I think we should keep that. The director looked at us calmly. No sign, she informed us. I don't like the environment that sign would cause. I gaped.

what's not to like? awareness of the issue? awareness of the school's committment to meeting the individual child's special needs? of being like other schools who use this measure? what the fucking hell could she possibly be objecting to?

Slowly, I realized. The environment was us. Our presence - not necessarily the Toddles', but his parents, demanding to be part of the team making choices and meeting the challenges of his care. Left to herself, the director would have been the hero, the climber of mountains who made it possible for our sweet, funny loving boy to be in a classroom of delighted peers. But we pushed in, muddying her super hero spandex, diluting the image. She retaliated, refusing to agree to things that her teachers were already doing, refusing to allow the parents and community to continue to support us as they had begun to do, refusing to negotiate.

*game over*

I looked at the Man. We had rehearsed this: if the situation was untenable, he was the one who would say so, and explain our request for a pro-rated refund of the tuition. As the man, he had an irritating degree of authority in this situation, and it was his job to speak up here. I looked at him, waiting. He looked back. I asked him his opinion. He prevaricated. I narrowed my eyes, he looked surprised. Finally, I said that we'd have to show the waiver to a lawyer friend, and hustled us out.

Slipping on the ice, I grabbed his arm. Should we go back and tell her we're done? Ask for that refund? He looked surprised. Why? If she's willing to do what we need, even if it's not on the contract, then isn't that okay? I sucked in air. Would you trust her? Are you comfortable that she wrote a plan without feeling a need for our input? She doesn't want to talk to us. I watched him, seeing the same absurd, fading hope that somehow this could work, somehow the Toddles could be happy here, could be safe. Slowly, reluctantly, the Man nodded. We didn't send the Eldest to a grade school for that reason alone, he remembered. Okay. We're done.

And we were.

I wrote, rewrote and hated a formal letter, reviewing our experience and our request for a pro-rated refund. I held the letter, scared to send it, frightened of the firm criticism in it, wriggling to avoid sending it. But I couldn't avoid that - and I definitely couldn't avoid telling the boys.

I'm sorry, love, I told the Toddles, with the Eldest listening worriedly. We've been talking to your school, and trying to help them be teammates with us, to keep you safe from the food allergies. The Toddles nodded. Teamwork is important, right? The Toddles grinned and told me that indeed, it was. But part of teamwork is listening to each other, and working together. And it's not always easy to listen to each other, is it? The boys shook their heads, the Eldest looking rueful. Sometimes, everyone has their own ideas and wants to do things their way. But is that teamwork? The Eldest shook his head, firmly. It's not, he told me. That's just a mess!

I took a deep breath.

I'm sorry, love, I told the Toddles. We couldn't get teamwork going with your preschool, and without that teamwork, you just aren't safe. And I love your preschool, and you love your preschool, but there is just nothing more important than keeping my boys safe. So, we're not going to be able to send you to this preschool any more. The Toddles' eyes grew round, sad, and I rushed on. But your friends will still be your friends - just not at school. We can have playdates, I suggested, watching the Toddles' face relax. And we'll work on finding another school. And shall I ask QG if she can come and play?

The Toddles lit up. I can have playdates? And QG will come and play with me? That would be great! he shouted. And off he bounced.

But the Eldest still stood, worried. Why didn't this work, he asked. Did the teachers try to be teammates with you? I hugged him. Yes, they did. But the director didn't want to have us on the team, I think, and that ended that. The Eldest hunched his shoulders, angry now.

She should go home to her wife or husband or partner, he exploded, and we could have a replacement. Someone who listens! Does she believe in Judaism? is she Jewish? I nodded. Then she should be polite! use derech eretz* - she's being disrespectful.

I hugged him. So, what do you think we should do, if the person in charge is making a mistake and won't listen to us? The Eldest barely blinked. You should bring everyone to talk to her. I'd bring all of my 22 classmates, and we'd point 44 eyes at her. No. 46 eyes. That would do it.

I hugged him again, my treasure, my seeker of solutions. Thank you, love. And off he went, certainty coloring his steps, the gift of caring educators, friends, community. And there I was, infected with the same certainty. Somewhere, we'd find that for the Toddles.

But first, we went back. This is a gift for your teachers, I told the Toddles, to say thank you and happy Chanuka. They worked very hard, so let's make sure they see that we appreciate their work, okay? Bouncing, delighted, the Toddles gave his teachers our homemade granola bars, opened the pretty red tins he'd chosen, explained the ingredients. Thank you, he told them, and they hugged him. Thank you, I told them, and they hugged me. And we said good-bye.

That was good, the Toddles told me. Yes, I agreed.

I held his hand as we walked out the door.

***************************************
Thanks to the Teachers, or Chocolate Chip Cranberry Granola bars
(adapted from Living Without, Fall 2006)

1/2 c. margarine, melted (I use Willow Run or Fleishmann's Unsalted)
1/2 c. vegetable oil (I used canola here)
3/4 c. brown sugar
1/2 c sugar
2 Tb maple syrup
2 c. oats (I use Quaker Old Fashioned, which my allergist says is the only safe Quaker variety to use with wheat/rye/barley/spelt allergies)
.5 c ground oats (take Quaker Old Fashioned oats, drop into food processor, hit button, measure out .5 c)
1.5 c puffed rice (Rice Twice cereal, by Erewhon)
1 c shredded coconut (I used unsweetened, because dang, there's already a ton of sugar here!)
3/4 c chocolate chips (I used Enjoy Life)
1 c. dried cranberries (I used Trader Joes, because I love their allergy labelling..)

Mix together. Heat oven to 350 F, line cookie sheet with parchment paper. Press mixture firmly into the parchment paper - it should cover the whole cookie sheet. Bake 30 minutes, and barely let it cool before cutting (carefully) into bars.
******************************
* derech eretz is defined (loosely) here.

Backtracking? Here's part 1, part 2, and part 3 of the story.

that which comes

Our home care company, the nice folks who send us the Eldest's clotting factor and then charge oodles skidoodles of money for it (to the insurance company, who is understandably grumpy and less nice), use a courier service. Why? Dunno.

In fact, I kind of miss the UPS guy who would deliver our factor when we had the other h.c.co. - friendly guy, and he always offered to carry the packages in for me. Not that I needed him to - big huge boxes, mostly filled with packing material and ice packs - but it was nice.

So, a courier service. Mostly older guys, making a little extra cash in their semi-retirement, and they are really nice to the boys. I'm a little embarrassed about the couriers, since it somehow speaks luxury and unecessary expense, so I'm a little awkward with them. But that changed one day when one of the guys noticed me telling the Eldest, your box is here! He paused, leaned down and said, oh, it's for you? Do you want to sign for it?

Grinning ear to ear, the Eldest carefully printed his name on the reciept. And so it began.

I called the pharmacy, to let them know that what was happening, and made it clear that I thought this a significant thing. This is the kid's meds, and he is taking ownership of them in this small way. I offered to sign also, if needed.

Two weeks ago, a new courier showed up with our box. I brought the boys downstairs, and we opened the door. The Eldest reached for the reciept, but the man pulled back.

I've got to have a legal signature on this, from an adult over the age of 18, he told us.
That's fine, I replied. The kid'll sign and I'll sign under him.
The man stiffened. No, I need a legal signature.
I paused, and looked at him. If you listen to me, I'll explain.
Are you refusing to give me a legal signature? he asked.
Are you going to listen to me? I responded, astonished and testy.
That's it. He turned away. I'm going to tell the office that the package was undeliverable.

Off he went, an angry man with about $6,000 of medicine in his arms. Shaking my head, I went inside and made a phone call to the horrified pharmacist. Two hours later, another courier was on my doorstep, apologetic and baffled. Apparently, after the courier had stomped off, he'd refused to answer cell, radio or home phone number.

Admittedly, I was very generous about the whole thing in the face of the h.c.co's and couriers' apologies. I could afford to be: I had just shown the Eldest how to stand one's ground, and when to use firmness over fury. If only I could remember that when the Eldest himself is pushing my buttons, so I suppose I should be grateful to the angry courier for letting me put on my little advocate mama show.

Thanks, dude. Now for heaven's sake, take a valium.

nine point nine six zero kilos, lady

Okay, Friday worked, thanks to some furious triaging. I did not go to the school visit, I did take the Toddles to the pediatrician, where thankfully he did not vomit on her shoes...and was told that he didn't have strep - instead, he has some sort of inventive GI bug that begins with vomit and ends with diahrrea.

What is this, medical sibling rivalry?

It infuriates me, though, that the nurse on call was happy to write a script for antibiotics without even eyeballing the kid. This is a child with a truly horrendous family history of drug allergy, specifically antibiotics (can't get more dramatic than the Eldest at his best!), who is already collecting his own list of allergies, and there are resistant bacterial strains thanks to sloppy medicine of exactly this sort. One third of all prescriptions for antibiotics are not necessary - and the Eldest has had three surgeries thanks to resistant strains of bacteria. Four? Too many, in any case.

I'm on a good maternal advocacy run - between the nurse on Friday and the clinical assistant two weeks ago. She barked orders at me (get him undressed. Put him there.), then ignored the wailing Toddles as he sat on the scale, too busy herself bitching to a coworker about something. Face turned away from the child, she stuck out an arm to keep him in place. I saw the scale's numbers blink, blink, stop on a weight, leaned in and plucked the Toddles from the CA's grasp. We're done now, I told her. She looked at me, furious. I didn't get a weight! she said, accusingly. Yes, you did, I pointed out calmly (how annoying is it when people are calm in the face of your ire? Heh), it was 9.960 kilo. She took petty vengeance on me by refusing to write it down, but I happily recited the weight for the doc we saw, who wrote it down on the chart. Neener, neener, neener.

It's surprisingly hard to have those moments when you stand up for yourself or your child at just the right point in the process, that you can gauge the power structures and object without worrying, paralyzed, about consequences - or not feeling entitled to begin with to issue anything resembling a complaint. So I take my triumphs where I can find them. 9.960 kilo of ruthless cuteness, I say to the inconsiderates of the world. See how you like them diapers. Which, by the way, is a nice little weight for an almost -18 month old who nearly slid off the weight charts 6 months ago. Ha, and ha again.

Lovely lunch on Shabbat, with recipe below. I bought a moulded cake pan from Williams-Sonoma, shown here, though I assure you that it cost half that! These little minicakes solve the vegan gluten-free cake challenge, which is that you can get good crust, but the suckers get squodgy in the middle - or just collapse - when you try and make a regular round/square/springform cake. And don't get me started on bundts. Sigh. But with these wee things, I can make a kid-appealing cake that actually has the texture to please, well, ME. (FYI, I used Cathy's Cupcakes recipe with dark, nondairy chocolate chips from Trader Joe's.)

On a different note, the Cambridge Public School system is currently reeling under a wave of solid approval from the city's middle class, who are happily sending their children to Cambridge public schools. I will be tracking this issue here: http://nancywalser.blogspot.com/

But on to the recipes:
***************************************
Chicken with Leek and Fig

1/4 c olive oil
4 large, well washed, chopped leeks
16 light skinned fresh figs OR dried figs (note: fresh are much, much better!)
salt and pepper to taste
8 chicken thighs (or one large package of the flash-frozen Empire chicken thighs), fat and possibly skin removed
2 cups white cooking wine
2 Tb balsamic vinegar
1 Tb honey
3 sprigs fresh thyme (okay, if you absolutely must, dried can be substituted - maybe 1/2 tsp)

Heat olive oil in a large pan, saute leeks until soft and browning (this will take a while). If your pan isn't nonstick, you will need to stir regularly, or risk adding more oil - if you do so, I strongly recommend skinning the chicken to keep this from being a rather fatty dish.

Add figs, salt, pepper, wine, vinegar, honey and thyme. Simmer 10 minutes or so.

Arrange chicken in a roaster. Pour fig-leek mixture on top. Bake 450F for 45 minutes or until chicken is done.