Friday, January 23, 2009

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.


AidelMaidel said...

I am so FUMING mad. BOILING. I was hoping for a happy ending, and I guess ultimately it's all Hashgocha pratis, but I am so PISSED OFF.

I bentch you hashem should give you a preschool that will help you realize that the new one is your true bashert and the other one was just to help you see it!

And I would have brought 46 pairs of eyes to the school, all the kids and their parents too!

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

Aidel, I wish I wish I wish I had a happy ending for you. I'm rather tempted to let the Eldest round up his classmates, to see if the group stare would work...

By the way, your blog is locked these days? I'm just now trying to use Google Reader to keep up, and I noticed your locked blog! Did you move to another unlocked one?

katrina said...

That totally sucks, says articulate Katrina. It must be frustrating that after all that work, one personality was enough to derail the whole project. But that's often how it is, isn't it? Now that I am engaged to a lawyer, I feel like offering some totally unreliable legal advice: Your only recourse may be a public preschool, where you can get the law on your side. I hate it when people (such as your beloved director, says sarcastic Katrina) complain about liability and then refuse to do what's right. Why do you think we have these laws and the right to sue?
It particularly gets my goat when Jewish organizations won't do the right thing (I'm speaking not so much of the preschool here as of the shul where it is located). I say this not because I think that Jews are better than everyone else, but because I think we should act like we are--you know, that "light unto the nations" imperative.
Regardless of the difficulties, you are raising some great little boys, and I wish both of them the best.

Rachel L. said...

words escape me. sending hugs instead. to the whole gang.

Anonymous said...

it's the unfortunate result of a school knowing enough to assume that they don't need to know more

This is far too common, for schools and other organizations and individuals, regarding allergies and other health needs.

I am so sorry things did not work out. And yet, they did, in that you all were able to come to a conclusion, you acted more than appropriately with nothing about which to feel any shame, you talked over things well with each of your children, and your gift of granola bars and expressions of appreciation to the teachers was indeed derech eretz for all involved.

I am so sorry you had to deal with all of this.

When he is old enough, will the Toddles be able to attend the Eldest's excellent school?

In the meantime, are there, nearby, any other allergic Jewish children in similar situations or other Jewish children not currently enrolled in preschool whose parents are trustworthy and would be interested in a tiny cooperative and informal allergy-friendly Jewish nursery school -- basically one day per week at each participant's home? Does the Toddles already have friends at whose homes it is safe for him to spend time?

Allergy Mom said...

I am all teared up at the vision of your Toddles playing imaginary school. You did the right thing, but, man, this is just sucks big donkey turds. [Reverting to 13 years old.]

To give you a (little, tiny) ray of hope, I had to fight to get my son into one of the few schools in the county with a full time nurse, which is, of course, the closest one to our home, but not the one the district assigned him to. He was finally reassigned to it only a few days before the start of school, and the nurse put together an allergy plan for him before speaking to me that included measures we don't even do at home, such as having all the kids rinse their mouths with water after lunch. Unlike last year, he hasn't had even one contact reaction.

Sorry this is so long, but your posts have really touched me. Consider many virtual hugs sent yours and Toddles way. Libby

Auntie A said...

I don't how you are still coherent after such a long, dragged-out, emotionally draining experience. Stoopid school. Good on ya for doing what you had to do, though. And for doing more than that, with the granola bars. Hope you're able to find alternate school/activities for the Toddles...
Oh, and way belated thanks for the card! Love the picture! :)

Mama Kat said...

Thanks for all the great tips! You did make things a little more clear when you explained the difference between celiac and gluten sensitivity. I'm learning. Slowly.

And I'm just curious....what do you substitute your eggs for when you make bread??

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

Mama Kat, I use a number of different things for eggs in bread - different things in different breads. I suggest you check out some of my bread recipes. These two are my current favorites:

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

Rachel, many thanks for the hugs. They fit just right, and the color - perfection. Hugging the Eldest, I realized that we'd needed it.

Katrina, I'm afraid you may be right. I'd called the local public school folks. Alas, the pre-K programs are full around here, which is what happens when the middle class send their kids to public school. Having legal recourse does sound good right now...

Anon., yes. When he is old enough, the Toddles will - somehow - go to the Eldest's school. The Director of Admissions there bakes gluten-free for an aged aunt, and has offered me recipes... Yes. We will figure it out with them.

(reason #734 for not ever moving from the Boston area)

Until then, we do have playdates - there's a pair of undaunted friends with roughly relevantly aged children. We've been having one, two playdates a week, and it helps. I enjoyed these friendships and kid playtime before this mess, and man, do I appreciate these women all the more now!

Libby, 12 is about the right age for this bird poop. Auntie A seems to agree. Spitballs, anyone?