Monday, December 15, 2008

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.


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.


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.

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


Anonymous said...

As a longtime lurker, thought I'd finally comment. I hate that I sense impending allergy disaster coming! Which reminds me that my own Epipens (bees, wasps, shrimp) are fast approaching their expiration dates, and I should get them refilled! I know from my personal experience to similar comments that your response will just be, "But that's what life dealt us, and we have to live with it." But I SO admire your commitment to both your children's health, and to trying to ensure they have "normal" childhoods despite their allergies/conditions!

Zina said...

Silver lining. Happy Toddles. Well, that's good!

My dear friend, we have got to talk. I am lucky in a perverse way in that my child's autism is so severe that he only has 3 other classmates. Allergies managed. Integration will not be so easy I would think. There is a nice prominent sign on door (with illustrations for each word) MUST WASH HANDS BEFORE ENTERING CLASSROOM. And that would be because of the whole peanut butter across the hall thing. At least we don't have the false sense of security thing going on. I would feel better with a completely no peanut rule. There are other kids in the school who are really allergic to peanuts. It is interesting what critical mass would be for the policy in the public school system to change.

But to get back to the essence of your experience, the Toddle's former school was run by a ninny.

The problem is what to do next?

Oh and by the way, you can make play dough out of applesauce and cinnamon! It smells better than play-doh. How did I find out? The OT gal told me... and they checked the label to make sure that there was no corn syrup in it before the little guy touched it. :-)

Rachel said...

I want the recipe for cinnamon applesauce play doh! I agree with Zina, the director is a ninny. (great word).

katrina said...

What do you think the director's motivation is? Budgetary concerns? Complaints from the parents or the teachers? General jerkiness?

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

katrina, I wish I knew. If I understood what was behind the situation, then I could deal with it. Or walk away, of course. I have a few thoughts, but I think I might need to tackle them in a post.

We're still in process with this one, so the wheels are still turning. But I expect tomorrow morning's meeting with the school to be enlightening. I'll report back.

katrina said...

OK. Good luck!

Zina said...

The recipe is a small part applesauce to a whole lot of cinnamon (so try to get the cheap store brand ground cinnamon). The occupational therapist had the 3 yr olds make Christmas ornaments with the dough, and they cut them out with cookie cutters. They dried in 1.5 days on a cookie sheet, and now they are ready to hang.

Zina said...

Oops, the last post was for Rachel. :-)