Sunday, December 21, 2008

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.


Anonymous said...

Drone on, drone on, drone on! I am riveted, and horrified, and reading this with my hand over my mouth, and wanting to give you a hug.
And praying with all my might that my daughter outgrows her allergies before she ever has to go to school. I would not have your calm and strength -- and therefore, not your success either, I suspect.

dykewife said...

:( dang! it truly sucks that the director is being such a bitch about the whole thing. her concern should be your child, not her ego.

mother in israel said...

M., can you add links to all the parts in each post?
Your story is distressing, on a personal and community level.

Rachel said...

Oh, poor you with such a horrible meeting (in your place I don't know if I could have kept the tears in).

And poor toddles for missing his turn as the shabbat helper.

Waiting for the conclusion.

That director...needs a little perspective to put it mildly.

My mother mentioned to me an article she read in the new york times about food allergies...that in order to adequately protect an allergic child a parent has to appear overprotective, neurotic, paranoid etc. (I'm paraphrasing a paraphrase...) One would think that after knowing the Toddles, and you things would make more sense, make her want to understand...but it's clearly a character flaw...on her part, not yours.

Btw, D and I made the Oat Challah this Friday. It was good! Though I didn't have xantham gum. Oops.

katrina said...

Oh, you tell me that what I'm going through is shitty, but this is really, really shitty. Because some people are jerks. And some people only hear what they want to hear where illness or allergy or some kind of special need is concerned. And poor Toddles--none of this is his fault.

chanie said...

this is really upsetting.
my daughter has diabetes, and i certainly watched for the reaction of the administration at each school we checked out. she's in 5th grade now.
i've found that if someone wants to learn, then they can. if they are dismissive or don't 'get it', then they wont really be able to learn what is required help her.

Miryam (mama o' the matrices) said...

katrina, I maintain that shittiness is not an absolute category, but depends on the individual circumstance. In other words, yes. You can have something shitty-different, while I have something going on. Otherwise, how else could my sil feel comfortable having a good, solid grump when oh, something Imperfect is going on? Bah.

chanie, YES. Exactly - and sadly I agree that it is so. Can't make people learn, no matter the stakes.

M.i.I, links placed as per your request. I think. (My HTML is beyond rusty.)

Rachel, you name the problem well. And until I stood in my own sneakers, I thought allergy moms *were* a bunch of (ahem) nutters. Over protective, stifling, pushy women, wielding too much power.

Or, as it turns out, wielding an alarmingly fragile power, and hauling this huge responsibility along. Ow.

dw, thanks as always. And if you ever aren't sitting there nodding, would you let me know? I could use the perspective.

and potentialandexpectations, hang in there. Remember, we hit three top notch, loving, adapting schools before this one. Gives me hope.

Allergy Mom said...

Miryam, I've been following your preschool horror story avidly, but just haven't had the right words to comment. Do I know how you feel? Oh, yes, I do. Do you need any practical suggestions? Ummm, no, you've got all the brochures and are far better at communicating to the educators than I.

A religious school was never an option for us, because my son gets most of his therapies (physical, occupation, and speech) through the public school system. Sad to say, but you might be better served in a public school with an education/disability lawyer at your side and a 504 plan in your hand. (Nothing motivates an administrator like the prospect of losing federal funds.)

Thank you for sharing this. My son just ran up to me and asked what I was doing. I told him reading about another kid with food allergies. He was very excited and wanted to see a picture. (He liked the delousing ones.) We wish you light and joy this holiday season, and maybe a miracle or two.

Miryam (mama o' the matrices) said...

Allergy Mom, oh, yes. After that meeting, I couldn't think how I could ever look at these women again. So, the second thing I did (the first was a lot of internal screeching and hand waving with okay, some external screech)was call our town's public school system and ask about preschools.

Two states over, my father popped a blood vessel, but hey. I'm soooo ready for a 504 plan! But the schools are full for the year, so there goes that.

I'm so glad your son liked the photos - my boys also like seeing pics of other kids with allergies, hearing their lists, and generally being reminded that yep, oddities abound.

FoodAllergyMom said...

I just want to thank you for stopping by my blog or I never would have found you. With three children of my own it may be a while before I finish reading your chronicles, but I plan to rise early with my cup of coffee tomorrow morning and put a good dent in it. You are quite a writer!

Miryam (mama o' the matrices) said...

Food Allergy Mom, glad to have found you, too. Always nice to meet someone else doing the allergy cha-cha.

But good grief, woman, that's *sleep* you are talking about. Don't get up early to read - come hang out when you are procrastinating, or doing something other than that which holds life and limb together.



(going to stop before I start drooling.)

katrina said...

On a lighter note (and that wouldn't be hard), you've been tagged.