bloggish smirks - and a pause to be warned

Somehow, in a fit of former grad-studentness, I became a MedPage reader. A not-quite daily medical/science news update reader. MedPage added blogs at some point - I noticed at a far later point - and read them oh, whenever there's nothing good on in the world of medicine. Which is not so very often, honestly.

But sometimes, I do. And then I wonder at the indignation of someone like this, writing about the horrors of preschool pizza. What is she worried about? It's pizza! Do you know how much lousy, crunchy clinical trial food my kid ate to get his pizza?

This is a line in the sand, drawn by someone who knows that something dreadful lurks in the dunes. Another blogger helpfully explained: it gets worse. Kids eat the most amazing crap in schools, breaded and served up with a side of bread. Or potatoes. No, really. See? Count the number of green things, the second blogger suggested.

Or go for the gusto, and count the ways that you can make a celiac twitch.

And that, I realized, is the missing link between an allergy-friendly school and a school that really cannot be bothered. Or won't. When the monolith of the school menu is standing there, all sorted out and scheduled and packed with the carbs, salt, oils and proteins that kids will eat - and oh, but finding that magical, what they will eat is not to be sneezed - or hived - at, then who wants Change? even Change for Good Reasons?

We know how to feed them. Sort of. Until the allergy kid comes along, leaving shredded cafeteria menus in their legislatively enhanced wake.

Um. Well. Okay, so maybe we still can feed 'em. But from the looks of this menu, we figured out how to feed our kids back in, oh, 1940? And haven't really thought about it since.

Or maybe this has nothing to do with the immunocentric universe, and is really about something far more basic. Like the possibility that taking candy bars out of the school vending machines? A faint, feeble start. Stop picking on Snickers - think about this: for a massive number of school children, this is the central nutritional pillar in their world. Which, to my untutored eye, explains that.

Which is so depressing that I'm going to shut up now, and soothe myself with some Buffalo Bleu chips.

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.

toxic information: warning, may not be extractable from brain

Some days, it's just not worth it. You can do everything right - get an allergist to work with you, talk to your kid's school about a 504 plan, have them talk to your kid's doctors, and even buy a cute backpack for your kid to take to school.

Oh, and offer to pick up treats for a school party, because hey, your child might have allergies, but kids should get to celebrate, right? And when you can set it up so that everyone celebrates together, with allergy-friendly yumminess, well. You rock, mama.

It's just too bad that someone forgot to explain this to the other parents.

While I'm torn between an urge to march on down there and start lecturing - and an urge to screech - the truth is that I get it. Let's start with transparency: for the people outside of a process, especially a bureaucratic one, it's really really easy for the process to seem biased, sloppy or just plain wrong. Is the child really that allergic? I wasn't there in the 504 meeting, but a doctor was involved. Was the child correctly diagnosed? Not being an allergist, I'm really in no position to say. Are all of these measures necessary? Oh, goodness knows, but again: not an allergist. Still, in our experience, a small portion of the measures taken to protect our children come from anxiety, or a need for certainty and an extra margin of safeguards. A large percentage comes from medical need, as described to the parents. And there, folks, lies the grey area. Doctors hate questions like, 'is this safe?' because the wrong answer can leave them open to lawsuits. Parents hate undue risk because the wrong choice can mean any number of scary things. So. Schools take on liability, parents have taken on a whopping dose of fear - which means that the doctor's role here should be all the more reassuring, as s/he can provide perspective.

Nonetheless, in this poll, 71% of respondents were certain: the school was wrong. And trying to spring the unfairness on the parents. Why are we being kept in the DARK? read one protester's sign.

It makes me crazy to think about how tiny the opportunity is for lighting that darkness. Once folks apply sharpie to oaktag, the opportunity for reasonableness, or even for education is essentially over. When the school's spokeswoman talked about the 504 plan, the legal requirements and process that the school must undertake to accommodate a child, I don't think people were listening. "Rights" ring more purely than legislation. No wonder that Wrightslaw has such an intense section on advocacy, and how to do it. I've read it, practiced it - and still, my success as an advocate has always depended on who is listening. People who are open to information, flexible and willing to be partners? Love you all. People who have already decided what is true and what is needed? A trainwreck, aimed right at the kid.

"You can't take peanut butter and jelly, or any other right away from my child," a parent screeched. And her message echoes through the school hallways. In a less controversial class, classmates are protesting the limits set for a second peanut allergic child.  "They say, put me in another class," said the little boy. "So that they can eat peanut butter."

His face is bewildered, his mother nearly incoherent. Facing them are passionate, appalled parents, explaining that they don't want to be unfair - but that a child so allergic as to require accommodations affecting the class? Should just stay home.

It's unutterably sad. When did rights mean get out of my way, I want to live my life the way I want? When did this narrow indignation usurp generosity of spirit, or a sense of flexibility, possibility - or heck, kindness? If we could only back up the tape in Florida, I'd sit down with those parents, and say, hey. Let's try this: take a kid who has been shut up at home. A kid who has been inexpressibly lonely, and who would love to leave their bubble - but is probably scared. And let's say this to that kid:

And that's it. Instead of no, you say yes.  You say, we can instead of mine, or I won't. Maybe, wisely, the school says it first, and helps you figure out how. And then? Together, you take the kid who was shut out, whose school told him to go away, and then you open the door. Come on in, you say. Because it really is that easy.*  And then, you show him that you get it.

Maybe you are in preschool, and all you know about allergies is that they make you sick (see the rash?) and that sometimes bees are involved. Oh, and thermometers. That's plenty for a little kid, who doesn't really need the science - they just need the general concept, plus help in being a good friend.

Welcome to lunch, the little kids said, in their own, pre-literate ways. Please don't be that sad, sick kid. Be this kid, instead! 

(for a four year old, that's one seriously happy face. Plus kipa, fyi) Be this kid! Be laughing! Or, says another child, be this kid!

Hair, curling everywhere, arms as wide as the world, and a smile so wide that it's taking over the face - and needs an extra set of eyes to twinkle alongside it.

Welcome to lunch. We're so glad that you are here! they said, and the Toddles sat, proudly, at his special, decorated table. His table was pulled up against the other kids' table, and he sat so carefully. Shining with pleasure. Learning how to be a child - how to be That OMG Allergic child - living in a world without bubbles.

And laughing.
****************************
You can read the school's puzzled response in HuffPo (hint: ADA? not so familiar), an opinion piece (also, not so much with the ADA), this pithy response or this one. Or you could cut to the chase, and go straight to this call for everybody to just stop, and take a deep breath.

But I would rather that you thought about this: when people aren't educated about food allergies, this is one thing that can happen.  Death threats were made, and the child's parents chose not to keep her in the school. That's one outcome. And this, sadly, is another. An educated peer - an aware adult - someone could have asked the question, is this safe for you? And we'd have one teenager, sans coma.



* and if you are having trouble, there are wonderful resources out there, like this one: http://www.school-lunch-ideas.com/
**but you can laugh about it. Like in this cartoon.

the cross-examination

Describe your child, his/her personality, strengths, challenges, hobbies, traits and characteristics. 

[what? did the kid need a resume, too?]

Dear people with the power to admit my child to your wonderful school: he is perfect.

[strangled yeeping sounds. scrabble. ahem.]

Dear admissions demigods, please wait while we select just the right spin for your answer. Your application is valued by us, and we appreciate your patience. A properly honed and polished response will be with you shortly. Thank you.

[wild hooting and chortles.]

My child - [no, wait, that sounds like only one of the two of us is invested in this school. FIND ALL: my REPLACE ALL: our.]

Our child is a bundle of joy and curiosity. He can solve complex mathematical challenges, unlock elaborately sealed containers or cabinets, julienne zucchini with the knife he's not supposed to be able to reach - [er. Not helping?]

Our child is curious, creative and innovative in his pursuit of a goal.  [oh, good grief.]

He can do anything, as long as he's tall enough to reach the buttons. He can remember everything he's ever heard, except the inconvenient bits, like "it's time to go." And he could probably save the world, so long as he gets the job wrapped up by nap time.  [whew.]

Explain why you think that our school is right for your child.
[um.]


Because otherwise, we wouldn't write a check for the privilege of applying? [gah! No! check the snark at the door, people!]


He's currently undergoing extensive retrofitting in order to ensure compatibility. Child 3.1 will be available shortly, and coming (we hope) to a classroom near you!
[or not.]

inhale. exhale.

Oh, dear gah. The Toddles is going to kindergarten. But where? And how? 

a wince, a wheeze

Oh, BlogPress, won't you let my postlets go? You've gone and eaten a picture-rich Chanuka post, written expressly for the absent grandparents, and hello? Greedy guts? Chanuka's over.

(grump, grump, grump, grump)

Oh, but who can stay grumpy when the kid's turning red and shuddering with laughter at my elbow? It is apparently beyond hilarious that, after being corralled by his domineering mother, he forgot - and crocheted ten stitches in the wrong direction. Think of a dash, written on top of a long pair of parallel lines, and then add momentum. Reaching for the next set of loops, the kid had to wrangle himself into a pause long enough to figure out what had happened. Laugh with me, he's inviting. I'm absurd, I'm contagiously ridiculous.

And now he's toppled over. And is writhing with silent, percussive laughter on the floor. I do believe that I'm being invited to pause, and admire his commitment to the role. Yes? Ah. Yes.

I'm happy to beam at him, as much for his own pleasure in his humor, as for the kid as a whole. Oh, but it's been a good few months for the boy. A year and more of things starting to fall into place...lessee. Need a narrative starting point, um - ah.

About 18-20 months ago, our car was periodically noisy. The Eldest would get in, pause, explode. Cause? bah, said the explosion. Causes are for lesser minds in search of a trigger for moments of emotional emphasis. 

Right, said the mama. And learned that one cannot duck effectively while wearing a seatbelt. Nor while keeping an eye on the road.

When the explosion was on coffee break, the car would be offered the dulcet tones of the whinge. My seatbelt's too tight, we'd be informed. Or, failing that, my shirt is too tight on me - why do you buy such things? Fists would fly in the back seat, the whinge would climb towards a shriek, and the mama towards a roar. Oh, it was a grand, grand time. And in the classroom, it was no better.

Let's talk about behavior, the teachers would say. He's definitely a class clown, but the trouble is that he doesn't - stop. I ended one parent-teacher conference with my head in my hands, and a teacher reassuring me, but we still love him! and thinking, sure. For now. And on the day when I was requested to take the kid home, after an out-of-control episode, I sat in the car, staring at the Eldest.


What happened?
The kid looked at me, his eyes clear and troubled. I don't know.
I looked back, searching, and found only that I believed the kid -  and realizing that, wavered on the edge of tears. And so did he.

When we leveled the asthma question at the doctors, at the kid, it was a wavering, wobbly one. The kid's lung capacity was 100% of the expected capacity for a child his age and size. But there it was, the tight chest, the rapid, gasping breath, the sudden snaps of irritability and nervous energy. Anxiety can make things worse, said our pediatrician, thoughtfully, and we all nodded. So can patterns, habits of emotional response, I mused. And internally, quailed. Anxiety is an old friend, and a squishy, oozing one. Hard to get a grip on the dude, but he's always lurking and at least familiar. But not, in our lad, pathological. Diagnoses carry their own burden, but they can also set you free - giving tools specific to that diagnosis, tested Things To Try, and that crucial short list of Things That Just Suck. I considered oozy, slippery ordinary kid stuff, and weighed it against the crush and weight of the diagnosis. And rather preferred the medical to the mundane. Did we get to choose?

Maybe. Maybe not.

What if it is anxiety? What if it isn't? The allergist and pediatrician urged us to try a month-long course of preventative asthma medicine. A couple of puffs of the inhaler in the morning, a pair at night. Tracking his lung capacity each time, looking to see if the big dips in capacity drop as the month goes one - and as the kid relaxes. We hesitated for a long pair of months. Steroids, even in low doses - daily? And yet, prophylactic medicine is something he knows, something that he's seen us trust to control bleeding. Can he let himself trust prophylaxis to control breathing, as well?

He could. And hugged his lung capacity measurements, the p'flometer, he called it, using them to reassure himself that all might just, possibly be well. A few weeks later, those lung capacity numbers trailed into relative unreliability. pphhhht, blew the kid, and rolled his eyes. And PUHPHHHHHHHHHTTTT! blew the kid. Thanks for the data points, the Man sighed, and tossed a third of them. But nobody could argue with the jump. His lung capacity increased by 42.2% (saith the Man), and we all stared. He's making his own rules again,  I muttered.

And grinned.

The teachers smiled back, politely puzzled. He's the class clown, they told me, and waited to see if I winced. I did, dropping my head onto one hand. But he can stop when he needs to, they told me. And his sense of humor is really quite good. Inexplicably, I began to choke. Swallowed. Resisted the urge to wheeze. There are class clowns who aren't funny? A twinkle from the teacher on the end of the table, and, oh, she said gently. Oh, yes.


And winced.

testing, testing, 1, 2, mess

I have just - got - to stop feeling like I'm eyeing my kids cross-wise.

Does the Eldest have ADHD? or is he just clowning around? Does the Toddles have sensory integration issues? or is he just overwhelmed, and balancing himself? Does the Eldest have a new environmental allergy? or is he breaking out in hives from the old one? Does the Toddles have attention issues? or is he just a distractible little kid?

And are those pairs of the same question, posed different ways?

When the Eldest handed us a clear-cut medical puzzle to chew on, oh, I tell you - it was such a relief. Alas for the medically normal, that the major puzzles are fuzzy, mushy psycho-kid stuff. Alas for us, that we don't get a Get-Out-Of-Irritating-Kid-Stuff Free card. I find myself chasing my own tail on the emotional/psych stuff, reading books, questioning the evaluations, my own perspective, my habit of wanting to tie problem to diagnosed solution, and hey, the alignment of the stars. But a medical, what the fuck is making my kid gasp and complain that his seatbelt is too tight? Love it. Clear symptoms, straight-forward diagnostic process (medical history? risk factors? likely diagnosis? testing?) - this is so much easier than trying to figure out why the Toddles doesn't play with groups of his peers.

(answer: I have no freakin' idea. Maybe he's just shy.)

Bizarre as it may be, I'm delighted to be taking the Eldest for asthma testing tomorrow. He's been complaining of too-tight seatbelts, gasping and puffing up his ribcage for the past year or so, and it feels so damned good to finally be charging in and examining this with his medical team. And, look! It's a measurable issue, with data points! On the advice of the pediatrician and the allergy gurus, we'll do a spirometry test, measuring his input and output. How we check this, if he's not having a bout of the can't-get-enough-air-freaking-out-ness, I dunno. But hey, we're going to test something physical, and dammit, diagnose it. Or not.

I can't wait.

(pause)

And now I'm laughing at myself. Such a lovely dichotomy! Messy psych vs tidy medical? Ha. As if there were such a thing as a purely medical something, as if those medical somethings don't dovetail with the emotional ripples that they cause. (ahem) I write this as if the Eldest, when his chest tightens, can actually tell that he's getting upset because his chest is tight, and not because his brother is breathing on me - quit it - MOOOOOOOOM! I'd be willing to be that he's choosing that oh-so messy emotion (you irritating git, stop that - hey - stop!) over the tidy and freakin' scary medical (air! need air!). Oh, yeah. It's a clean dichotomy. See?

So clean that I spent a precious morning, explaining to the head of the Eldest's school that a certain staff member was not to be involved with the Eldest's care: she appears unable to evaluate a situation, nor do I trust her to respond appropriately. More to the point, the Eldest doesn't trust her. And if the Eldest can't name the problem (air! need air! vs bwahahaha! we're going to do mathERmatics!), then he can't advocate for himself. And he can easily end up stuck, working to inhale, exhale, awash in that messy psych - and observed by an adult who can't help him separate the ripple from the medical stone. Who very well might not even see the medical stone.

It was, I must admit, one of the more exhausting bits of advocacy that I've done this year. How do you express a lack of faith in a staff member, casting doubts on her ability to evaluate the child in front of her? Rather than the child that she expects to see? The implications of this are wide-ranging - assuming, of course, that the parent expressing this concern is heard. Deemed trustworthy, and generally non-bitchy.

Sigh.

The night before, the Man and I sat down and type up a list of points. We went for observations, not analysis - the analysis would be implicit, I hoped. Show the principal, don't tell her - let her see for herself what the problem is. Hopefully, anyway. We came up with a 6 point presentation: background; the Eldest's (stated) feeling about the staff member; how we responded to that (give her another chance, etc) and the outcome; what I have observed; what I like about her; my concerns, irrespective of that liking, based on the Eldest's opinion and my own observations. And our goals: the Eldest isn't left alone with her, nor is she to be involved in discipline/classroom interactions.

I got through three points, and was part-way through the fourth, when the principal paused in her note taking. Looked up. Then X is out of the picture, she said. Just done. Out of the picture, won't be involved with the Eldest any more.

Just like that? Something so simple and clean? Well, now wouldn't that be nice...

on the day that I was late

And oh, was I late. The Eldest had been splotching and itching (I'm fiiiine, he told me. Why are you here?), and we were all stumped. Benadryl was given, in hopes that it would stop whateverthiswas (it's didn't), doctors were called in hopes of light being shed (it wasn't), and teachers quietly peeked in to see the baseline, or what was the pin in the map of the kid's symptoms.

If it gets worse, do we call you? they asked. I shrugged. Depends on what "worse" looks like. There was a pause, while they thought this over. A quiet shudder. And, with a sympathetic smile, I left.

And cheered all the way to the preschool, quivering still with adrenaline, and preparing to babble apologies for being a full. 40. minutes. late. (omg, omg, I'm late. I've got the kid who can't be in the classroom when the others eat lunch and boy are they eating lunch now and I'm late and I got called on the carpet for being repeatedly oh, 7-8 minutes late because he just doesn't listen when he's tired and he wanders over to his friends with the wheat and the egg lunches and omg omg I know they said they understood that I had to take care of the Eldest but damn this is LATE.)

I drove up. Parked. Ran, and your son invented a new word today, the director told me, smiling. Relaxed. She was sitting on the empty playground with the Toddles, a demolished plate of apple slices, and one, lonely section of grapefruit. The Toddles, his face deep in a corn thin-sunbutter sandwich, didn't look up.

He did? I tried to sit, rather than crumple onto the bench.

Yes. Unpithing. She held up the grapefruit. The white stuff on the grapefruit is called pith, yes? I nodded. She grinned. So, he explained that he was un-pithing his slices of grapefruit.

You did? I asked the kid. He nodded, still chewing.

The adrenaline faded from my veins, and a slow peace crept in. I had an urge to look down, to check my footing. My kid was safe, being fed allergy-friendly food as if it was no big deal that a staff person has to be dedicated just to him (a big freakin' deal that affected all of the other teachers, shuffling the kids around to keep the ratios legal) and we're now talking about how funny he is with language. Um. So, is everything okay? asked the director. I nodded. And what about you, she pursued, are you okay? I nodded again.

I'm going to smack the person who pops this bubble, I thought. Because this has got to be some sort of a fantasy world, in which my children go to schools that understood them, adapted to them, and maybe even kinda liked them. Us. Especially on days when the cost is spelled out: he could have a reaction. You could actually have to use the needle-thing that I showed you. That mom could disappear because she has another kid with medical needs. You could be stuck with the anaphylactic wheat kid until she resurfaces. So, shall we talk about re-enrolling next year?

I'm fine, I told her. Actually, more than fine. Because today, I left my son at school while he was in the middle of an allergic reaction. A mildish one, and unlikely to proceed, but still - he wanted me gone, maybe needed me gone, and I went. And I could do that, knowing that he'd be safe, even if something happened. I met her eyes, and saw that she was as moved as I. And while that was happening, I was able to focus on him, knowing that the Toddles was fine - the teams that we have in place at these two schools... I trailed off, shook my head. It's extraordinary.

She shook her head, thinking. Yes, she said. It is.

in lieu of school bus

Note to self: stop bitching about driving the kids to school. It could be worse.

(shudder)

Now, if you'll excuse me, I have to go back to scraping gross, mildewy (then bleached, then rubbing alcoholled) caulk from our tub. Which, I hasten to note, I'm doing now because I can - and not because mildew has any bearing on Passover prep whatsoever.

It is mere coincidence that the lack of useable tub/shower has a bearing on our incoming houseguests....

honing their craft

On Wednesday, the Eldest worked on developing his skills at school.

H, wrote the Eldest cheerfully, you are a peice of rubbish.

For a moment, the boys doubtless wore the identical grins of small boys who are treading the edge of the great, wide Okay.

E, wrote H, you are a piece of moldy bread.

Looking at the Eldest's note in my parent-teacher conference, I laughed. And suggested that the boys needed more practice in the flourishes of friendly insults.

May the fleas of ten thousand camels do the electric slide in your armpits!

The teachers carefully did not smile. Bad mommy.

why my kid goes to this school

Purim is coming, and we are baking at Chez Imperfect. This year, I'm wimping out on the vegan GF hamentashen, and going straight for the sugar: vegan caramel corn. We're making batch #3 tonight, and the house smells amazingly of caramel... Come Saturday night, the Man will have bags of yumminess to offer to folks who come and listen to him do silly voices over the megilla.

But all in all, it's a holiday when we spend a lot of time watching other people eat - or judging it wiser to stay home. And as prone as I might be to self-pity, I'm actually pragmatic here: it's hard to find and safely prepare an Imperfect friendly yummy or two, especially when you are up to your ears in hamentashen flour. In fact, I am actively grateful to people who recognize this risk...and opt out.

The Man and I think of our mishloach manot as a kind of gentle persuasion: oh, do you like that? I can give you the recipe...it was easy to make. But primarily, as a way of saying to our friends and community, hey - good to see you! It might make you uncomfortable to receive and not give, but we're fine with that. We value our friendships and community more than some relationship balance sheet.

But sometimes, we get an unexpected revolt. This year, it happened at the Eldest's school.

After a flurry of emails and a phone call or two between me and the Cooking Club Leader (aka, lady whose club turns out yumminess with extreme wheat, dairy and egg content, but is very nice), the flurry concluded with the following result:

(From the Assistant Head of School, via email)

Dear Teachers and Mothers of Highly Allergic Kids -

I'm writing to let you know that we have allergy-safe treats for Mishloah Manot for your boys.

Tomorrow morning the Lower School students will pick up treats for Mishloah Manot from a "store" we're setting up in the Sabra classroom. Some of these treats are store bought. Hershey's Kisses, Starkist Gems, Twizzlers, and raisins. Those items are clearly marked and the boys will take what is safe for them to take.

Also available will be caramel popcorn, chocolate covered pretzels, and Rice Krispie Treats made here at school under Cooking Club Leader's supervision. Cooking Club Leader prepared special batches according to the specifications for Allergic Kid and the Eldest. Allergic Kid is able to have all three items. Eldest is able to have the popcorn and the pretzels. Their portions are specially marked and available in my office, separate from the rest of the goodies.

I hope this adds to a joyous Purim for all!

HUGE thanks to Cooking Club Leader!!

Erev tov,

Assistant Head of School

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

Oh, yes. And lest I fail to mention it, without fanfare and much punting, the Toddles' school has also made allergy-friendly mishloach manot for the kids. All of them.

Oh, the gifts that we are given...

thus spake the OT (part two)

The Toddles, deprived of a rather tidily built foil, is now exercising quasi-homicidal tendencies on some hapless bananas. While I'm rethinking the chances of banana bread, the Eldest is muttering about not having to do some bit of homework that he will, in fact, have to do.

While a peaceful moment staggers unconvincingly through our home, maybe I can start getting this post down on, well, electrons.

[the Eldest begins to wail something about there not being any math homework, there never is any math homework. A pause is offered by all parties, followed by some truly offensive parental logic. But I don't have my homework folder - I didn't bring it home - I NEVER bring it hoooooome. More parental logic is about to follow, and any guesses at the register of the italics coming thereafter? Right.]

So, (getting the post down ignoring whatever that was that went clunk, the small, fascinated voice saying, oh.) it begins with paperwork.

I happen to be fascinated by the paperwork that I'm given by medical types. As I fill it out, I play a mental game, trying to guess what the medico would think if I said yes to question 5, or frequently to question 12. This mingles gently with my awareness that I really want the doctor to like me. To think I'm sensible, possibly trustworthy. It's something I'm a bit embarrassed about (what if the cool kids don't like me?), but I'm pragmatic: a good relationship works better. When doctors treat me like a semi-sensible, primarily reasonable person who likes multisyllabic words, I am a better patient, and the relationship produces better medicine.

The paperwork isn't really an opening salvo, it's more of a formality. The real relationship building happens when the doctor walks into the room, I think - the paperwork just seems to set a stage. Gives me a chance to rehearse a little. Gives them (assuming they have time to read it) a warning about what's sitting in the room. But while medical questionnaires seem to ask largely verifiable, historical questions, therapists' paperwork seems more, oh, fluid in the kinds of information sought. Skewing them is, I suspect, much easier.

Ever so gently, I could hint that my child is very anxious - but maybe only tells me about it. That he melts down under circumstances that the OT might never see, could approximate but not reproduce. Maybe he had a bad day when you saw him, I could say. Maybe he had a very good day. Looking at the paperwork, I began to suspect that I had an alarming amount of influence in this relationship, that I had a frightening ability to talk/write/explain my kid's way into a diagnosis.

But it didn't occur to me that the tables were about to be turned.

I started answering questions, threading my way through precision and my own uncertainties. But the questions, simple as they were, started hammering at me. What are his sleeping habits? (don't ask) What are his eating habits? (when he can eat the food?enthusiastic. sometimes.) Does he like to run? (god, yes) get messy? (sometimes) dangle upside down from the monkey bars? (never, except when he does) Does he like/love/snore through/hate fireworks? (hate) the flushing of public toilets? (winces) Does he wiggle? (yes) fiddle? (yes) droop? (yes) what was toilet training like? (for me or for him?) The questions went on and on, and by the time I was done, everything seemed pathological.

What does it mean that the kid can't sleep in one bed? That he rolls around at night, is impossible to sleep with because he rubs his feet on my shins, needs to have another body (thankfully, his brother's) wrapped around him? Should I worry about that? What about his anti-firework stance? the bursting into tears during the shofar blasts on Rosh Hashana? I hadn't worried this much since I was a new parent, and frankly, I hadn't missed the experience much.

My sense of what was okay, or workable, was slipping away - overshadowed by what was Capital N Normal.

Of course, I said so out loud. And the OT nodded, agreeing. I asked her how she could make a judgement, based on an hour and a half of playing with the kid, a brain-tangling set of questionnaires, and she smiled wryly. With the clear cases, she said, there's no problem. But with the more borderline cases, it can be tricky. But that's why we follow up with more questions, if we have any. Oh. Your son is bright, and he's learned ways to cope with his bleeding disorder and allergies, which is good, because he could apply those methods to other challenges. But it also means that he's smart enough to know what answers to give, and that can make it harder to figure out what's going on. Oh. I echoed her, thinking it over. He's got enough experience with doctors to know what answers they want to hear. Right, she told me. We see a lot of kids like that. Ah. Experience with mothers like that, too.

Just in case, I handed her some questionnaires that the Man had filled out (for the uber-OT folks, who were also uber-not covered by insurance, and uber-didn't care), to offer a different perspective. More data, I said, and watched her smile manage to balance appreciation with a gentle tolerance for the overeducated, meddling parent.

And a month later, we had her report. Based on reporting by parents and observation by OT, the Eldest has a sensory imbalance in regards to motion and contact, both being under-sensitized. Therapies are recommended, roughly 8 or more visits to assist the Eldest in learning self-regulation techniques. And then there was a bibliography, including something about engines and how they run - a concept soon to be enthusiastically despised in our house.

I sat down, landing on some of the evaluation papers, feeling unexpectedly gut-punched. I'd walked into this mess, eyes open - or so I'd thought - but somehow, I'd managed to keep the rosy lenses in. This, I'd told the learning guru, is not what I'd expected you to say. It wasn't what I'd expected the OT to say, either. I thought about it, about the kid who hates crowds, and spent years hiding upstairs during his own (small) birthday parties. The kid whose shrieks of laughter seem to be higher, shriller than his friends, whose joys will inevitably be higher, and his challenges probably harder. Did this label fit him? I looked at the Eldest's binky-sucking, ancient sweatshirt rubbing, loud noise-hating brother, and mentally filled out his paperwork. Oh. Did this label fit him, too?

Could we trade the label in for an explanatory paragraph? I heard my father's voice, warning about medicalizing what could otherwise be an ordinary, messy life.

Watching the Eldest wriggle, pop out of his seat, and run, I wasn't sure. I can't stop, he told me, and ran down the hall. He flung himself into the air, bouncing off of a wall, and ran on, giggling - while something inside me quailed.

But still, does it fit? Cautiously, we accepted the diagnosis, and watched puzzle pieces fall into place. Until the kid himself staged a sit-in.

next post: the Eldest respondeth (part three)

whither the OT? (part one)

Okay, so you might recall that oh, back in September, maybe? I mentioned a drift of stuff, and an OT report buried in there somewhere. Well, it was. And it all started last year, with a teacher grab & chat:

Teacher: just so you know, the Eldest has been disrespectful in class today.

Me : oh, no!

Teacher: yes. This is a real problem. You will speak to him?

Me (calculating bucket volume, withdrawal quantities): absolutely.

And I did. And then I did again. And was informed that I needed to do so again. I changed gears, shifting my tone from understanding to irate. Each time, the Eldest promised to try, and I do believe that he did. It was an uphill battle: the kid just didn't like this teacher, and offered me any number of reasons why not. Listening to other parents, I realized that the Eldest was not unique in this, and changed gears. After a long chat with the boy about being respectful to those in authority, be they oh so irritating to folks under a certain height, I went for an end run.

If I complain about a teacher, then I am yet another mom, blaming everyone but her kid. But if another member of the school has a professional concern, ah, well. That's different. So I sat down with the school's learning guru, and asked her to offer a fresh pair of eyes. Maybe there's something I'm missing, I said, certain that there wasn't. I'd love to hear what you have to say, I said, sure that I already knew.

What could follow a set-up like that, other than the part where my jaw drops faster than my hand can catch it? Right. He seems to need to move more than the other children, the guru told me. He's mostly moving to get some sort of physical contact with something - it's disruptive, but doesn't seem to be deliberately so. Oh. I took furious notes for roughly half an hour, and then stared at them. Are you talking about ADHD? I asked.

Her pause scared me. Not necessarily, she said. What do you know about sensory integration?

Um, I said.

My understanding is that sensory integration is essentially when one or more of the senses is either too sensitive (everything sounds very, very loud, or most fabrics feel like sandpaper, and the tags on that shirt are pure evil) or under-sensitive (noise! need noise! need textures to feel, rub and roll in! Need to live on the swings, back and forth, back and forth, whooosh-up, whooooosh-down, whoooooooooshhhhhhhh). There's more to it, of course, and apparently you can have one sense turned way up to hypersensitive, and one way down, to under-sensitive, and a kid frantically trying to feed the under-fed sense (under-sensitive) and protect another, overloaded sense. Or so I understand.

But I have to admit that I learned this from sources other than the CDC, and that makes me a little, oh, twitchy.

From what I can tell, sensory integration dysfunction, or sensory processing disorder is a big, hissing argument between experts, with kids tangled up in the middle. I know parents of autistic kids who swear by the therapies, who talk honestly - poignantly - about the effects of the condition, and there are certainly any number of earnest, if not enthusiastic foundation/professional websites. And a book or two. The diagnosis has been around since the 70s, but there's no entry in the DSM-IV (TR) for sensory integration dysfunction. Will there be in the 2012 edition? Maybe. There are articles in journals. Databases being constructed. Hmmm, said my data-loving guy, and valiantly tried to raise a skeptical eyebrow.

Certainly, it didn't bode well when we discovered that the local experts did not accept insurance. Nor, I was told, would our insurer cover therapies for sensory integration, when provided by an otherwise in-network medical personage. Although, our go-to insurance person said, this was not because of the lack of formal diagnosis - it's an occupational treatment, not a medical one, said the nice lady, and both sides braced for the argument.

(purely gratuitous note: I won it. On a technicality, but still. Ha.)

Sitting in the guru's office, I smelled a concerned parent trap - one of those things that you can't ignore (concerned, right?), because it might be causing your kid problems, and you can't quite dismiss. So, you end up feeling obligated to plunk down hours, co-pays and oh yes, brain space on it.

And oh, I know that a kid with one medical condition can start a collection of them, as other diagnoses march in and politely join the group. Maybe it's because there's lots of people who care about the kid, and they are watching. The Eldest's grandfather calls it the medical microscope, and when it's on, says he, seek and ye shall find...something. But I wonder if the working assumption is that if the kid's cracked in one way, then surely he's cracked in another.

Silence fell in the room, while the guru waited. And I knew what I had to do: the unspoken deal between a school and a parent of a kid with a bucket is, we take you seriously, and you take us seriously. It's fair, respectful, and makes for a decent working relationship.

I settled on a position of sincere skepticism, and asked politely for second opinions. The school learning guru agreed to talk to some relevant medical types who know the Eldest, and heads were put together. Notes were compared. Because, I pointed out, a kid who is (alas) annoying, who clowns or is uncooperative could be a kid under stress. And some degree of stress is the way of things when you have a chronic condition. So, before we slap another label on the kid, let's take a moment to think about whether this is just an old wolf, in a new outfit. Please?

When the huddle broke, the guru's question still stood firm.

The coping clinic, a.k.a. psychiatrists at Big Famous Local Kid hospital who specialize in kids with chronic medical conditions, said that roughly 20% of children with chronic medical whatnots, also have some sort of sensory out-of-whackness. The psychiatrist and nursing chief at Hole in the Wall told me that their kids with diabetes and bleeding disorders have amazing pain tolerance - and we hemo-mamas tend to say the same. High pain tolerance could be the result of desensitization, I was told. And nobody laughed at the idea of putting this sensory thing and the Eldest in the same box. It's worth looking into, I was told by the coping clinic.

And I just didn't know if I wanted to agree.

The Eldest has a humbling array of coping mechanisms, from cuddles to thumb-sucking (with his dentist's reluctant approval), to the particular, odd sensation of the skin as it slides over a bony joint. Try rubbing the skin over your elbow sometime, sliding the skin over the bone. Does that feel good? It gives me the willies, but that soft-bony combination does something oddly soothing for the Eldest. A solid, loving squeeze makes something in the boy relax, resetting some sort of emotional metric. When I throw in a small rocking motion, he becomes boneless. He goes into my hugs wired, frustrated, furious, shriekingly joyous - and comes out a solemn-eyed happy. Calm. Like whatever he's carrying at that moment got rebalanced. But couldn't that come from the love, wrapped around him and holding him close? The silent, snug reminder that I love you, and I'm here?

Maybe. And maybe, echoed the learning guru, the coping clinic, the things I read and my own instincts. And so, sensory integration? I said, staring at my pages of notes. I've never heard of it. And the lovely, thoughtful guru at the learning center explained. You start with an occupational therapist's evaluation... and we did.

Oh, and the teacher? Ah, well, said the guru. And smiled apologetically. You might want to cut your losses there, she sighed. My shoulders slumped. If she'd disagreed with me about the teacher, then I'd have labelled her as a Person to Manage, but not a person worth listening to. But she agreed, offering a number of thoughtful observations while clang! went the concerned parent trap, and ouch, went my foot.

And possibly also the kid's.

next post: what the OT saith (part two)

oh, la difference kicks some heiny

If you haven't met this blogger yet, you might want to reconsider: I just read her latest post, and it left me thoughtful. And appreciating what a doctor has to do, in the face of a patient's need.

Oh, my.

But I digress. (go, digress. I'll wait.)

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

I cannot help but muse: one of these years is not, thank heavens, like the other. This time last year, I was wrapping up homemade yumminess for the boys' teachers. It was chocolate chip granola bars last year, and the bittersweetness, the splintering care to teach the Toddles to say thank you, even to the teachers who'd tried, but ultimately failed him. "That was good, the Toddles told me." And, picking my way between pride and sadness, I agreed.

But now, I think: kid, we had no idea.

That was my kid at the Chanuka celebration last week, you know. Mine, shoveling in potato and applesauce with the rest of the pack, singing the funny verses to I Have A Little Dreidel, and thankfully, without the potty humor. Mine. And absolutely, positively safe in a roomful of munching, belly-filling kids. Because the food is safe.

Because the teachers - and the school - gets it.

So, this year we said thank you again, and we did it in style, baby. We did it with sparklies.

The boys made necklaces and bracelets for their teachers, and I had a ridiculously wonderful time talking with them about the colors their teachers wear, what kinds of people their teachers are, and then, oh my goodness about design. Even the Toddles was happy to think about symmetry, and his second necklace was a two thread, three bead design: small black bead, chunky red bead of various types, small black bead. Knot. Switch to the other thread, and repeat. He laid out his beads in advance, considered how best to balance the various shapes and sizes of the red beads, and then patiently threaded and knotted.

See?

And nobody splintered - but my heart was very, very full. For this, as for so much else, I give thanks. Except, possibly, first thing in the morning, when I realize that I have to get the kids out of the house and to the car, and for some reason, this is going to take well over an hour and all of my patience.

But yes, we gave thanks. The Eldest, to nobody's surprise, muttered something about basketball until I mentioned that we could use stone beads. The kid loves stones, filling his pockets with the muddiest he can find, certain that each is enormously valuable and beautiful. He rummaged happily among the stones, and started jamming them on. Um. Not that he shouldn't do it his way, but, well -

I handed him a printout about Morse code. Design, I told him, is code. Sometimes the message is a feeling, or an idea. Sometimes, it's literally words.

And the kid took me up on it. He designed an organdy and cord necklace of unakite, jasper and hematite, of which the stones made perfect sense for my young miner-in-training, but the ribbon was an unexpected touch. And a nice one. And he arranged the stones in a code, to spell out his teacher's name.

And so, we gave thanks. You know, the Toddles' teacher whispered, fingering her necklace, just getting to have him in the classroom is thanks enough. My throat filled, swelling with old splinters and newer joys. I couldn't get the words out to tell her that she was absolutely right.

This year, it feels as if we'd lit our menorah in the midst of memories of desecration and betrayal, hopeful but not letting ourselves rest on that hope. And slept, only to wake and find it still burning, ruthlessly pushing us past sharp memory and into what comes next.

Wishing you all a season of light, joy and shared tables.

Toddliciousness: four

with apologies to imiriam, I should admit that the Toddles has had a birthday.

Oh, yes, the boy is FOUR, people. A calmly certain, then bouncing-and-shrieking, then curling up and cuddling, then leaping on my back four.

(Actually, right now he's a coughing, febrile, self-hydrating and calmly vomiting four, but let's not get sidetracked. Four.)

And he's in preschool.

It's like wandering in a haze, a sort of improbable dream, but one with sad edges in it - but yes, he's in preschool. I bring him to school, and the lead teacher smiles at me. Thank you for bringing our boy today, she tells me. I pick him up, and one of the teachers waves good-bye. Thank you for sharing your boy with us, they say. And over and over, we're so glad to have you as part of our school.

No, really? Even if we roughly triple the costs of your food budget - and we know that you are on a shoestring, and one of the classrooms is pretty small this year...really? Really. And that's when they hug me.

I keep waiting for them to become human, to make a snarky comment or look irritated. To make a decision based purely on pragmatism, rather than on what is best for my child- and for all of their children. Hey, I wrote to the director. We're going to be away on Friday, we're driving to NY for the holidays. This might be a good time, if you wanted to serve non-Toddle-friendly challah at snack time. The next day, the lead teacher caught me on my way in the door. We had a staff meeting, she said, and we talked about your suggestion. Our concern is that the children might learn that some things can be had when the Toddles isn't at school, and that this is something to look forward to. We don't want them associating his presence with something negative, or his absence as something to look forward to. Oh.

Who are these women? How do they get this so absolutely, astonishingly right? Sure, sure, they're mothers and grandmothers, former health care professionals, people who think and care and dammit, build and design a lot of their classroom materials. But anyone can do that, right?

All of that?

(I'm admitting now that my astonishment and wonder is, yes, a defense mechanism. I'm very much hoping that the bar really isn't that high...because dang, I left my pole-vaulting shoes at home. Um, or something.)

Look what I have for you, kiddo! said the lead teacher one morning. The Toddles, fresh from a 35 minute car ride in which the backseat taught the front about basic addition (oh, me achin' head), grinned. She held up a lunch tray, and showed him the circle that she'd drawn on it with a marker. The Toddles watched, carefully. She handed him a handful of little duck erasers. Count them, she invited. And he did. Ten!

Okay, now toss them on the tray. And he did.

How many landed inside the circle? The Toddles counted: six.

How many landed outside of the circle? The Toddles counted: four.

So how many ducks do you have? I was tempted to whip out some fingers and count, but he Toddles beamed - this was a no-brainer: ten! And threw the ducks again.

The next day, he asked for dice, and the teacher offered him a bowlful. And a notebook. I left him, rolling dice, adding up the numbers and carefully inscribing his equations in the notebook.

So I ask again, who the hell are these people? We have an ongoing debate as to whether people can really understand chronic care from empathy alone. Whether you just have to walk it in our shoes - or some other pair of diagnosed shoes - to understand just how crucial a child's life is. How potentially fragile, how not ever, ever to be taken lightly. And then, once you understand the seriousness and scope of the challenge, how to grin and joke about it.

Sometimes, I think that you have to wear the shoes. Sometimes, I'm wrong. Sometimes, it just takes a person with enough caring to think about a kid on their own terms, rather than how the kid fits into a relevant silhouette, or pigeonhole. These women do just that: they think Toddle when they see Toddle, they think Adorable Girl when they see Adorable Girl.

He's got a brain in motion, they told me. Full of thoughts. He led circle time on the difference between what God created and what Man creates - ask him about it. And did you know, he'd rather write than draw? (I didn't) And we've noticed that he doesn't like loud noises. (I nod) Or transitions. (I smack my head, thinking of the umpteen impossibly irritating late departures, the Toddles running around, delightedly bare-arsed, despite having already been absolutely, firmly dressed for the day.) But even when he doesn't want to join the class, he's very cheerful about finding something that he will do. Like doing everything that the class does during music, while standing in the doorway. (we grin at each other, delighted by the idea of the kidlet finding a way to take part in the goings-on - but on his own terms. We pause to reassure each other that this is, in fact, just fine. That we consider preschool to be a good thing, even if the boy isn't in the middle of the room, clanging away on a tambourine or whatnot with the other tambourine clangers. We stop reassuring, realizing that we actually agree.)

Bloody hell, you'd think I built these people from a kit. A parenting, pedagogical, caring something that had me folding an intricate origami of preschool as I'd wish it to be. And yet, there it is, sans papercuts. Worth every bit of the 40 minute drive. And just as I'd started twitching, waiting for the other shoe to drop, the dream to pop, there it was:

the vast majority of the parent population appear to be Republicans.

I'm not kidding here, people, and let me tell ya: I demand caring, I demand that my child be accepted and adapted to (or else I'll leave, so there!) and I require open-mindedness. I do not appear to return the favor, however, to those who sneer about public options.

Bloody idiots. (But I owe them for providing that shoe)

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.

any minute now: exhale. (ahem: ANY minute now?)

okay, okay, so it's been a ridiculous summer. And a quiet bloggish one, mostly because you couldn't hear me wailing, and there's this - and that - and I'm not ever getting enough sleep and ohmyfriggin'mmmmmphm there's THAT, and I just don't have time to blog about it (dissolves)

On the other hand, if you live within roughly 6.31 miles of me, probably you did.

It has been a ridiculous summer. Wonderful kid stuff, improbable mama stuff, some absurd kid stuff, some astonishing family stuff. And then slog stuff, which is expected and yet somehow seems to do a wonderful pufferfish imitation, when it comes to the amount of work-time it required.

I have a backlog of stories to tell you, but let me just let it rest with this: school has started.

The Eldest has begun second grade, and managed to be tense but pleased last week. He was even more pleased when the puppydog eyes worked on one of the teachers, and she let him take home one of the classroom books. He finished it the next day, and I spent a lot of time hollering for him, blinking at the silence before noticing the attachment of nose to binding.

Had that one coming, no? (Mother-mine, your comments aren't needed at this point. And yes, I can hear you laughing. You don't have to call and tell me how funny that is, because I was just like - oh. Hi, Mom.)

The Toddles has begun preschool, and did so with an astonishing lack of fanfare. While I hovered, teary-eyed in the background, the Toddles checked in with me once, twice, and then went to fall in love with his two new friends, Girl Adorable and Girl Lovely. When I picked him up, he asked if they could come and have a playtime with us? And sure enough, Girl Adorable did.

My teacher has a smile, he confided in me, that when I see it, I can tell that she gives hugs. I nodded. I knew that because, seeing me sniffle, she'd hugged me.

I inserted fanfare by managing to set off the fire alarm just before the kids sang happy birthday to the Toddles - a story that deserves its own post. (see? backlog!) And then took pictures of the aftermath, all of which have other people's children in them, so I can't show them to you.

Oh, and we managed to be on time 4 out of 5 times: an Imperfect record. This may have something to do with the promise of hot cocoa for children who are ready to go early, possibly related to the alarm clock that says hilarious things when you hit snooze, and then wake up enough to listen. And laugh. Which seems to set the day off to a good start. (except when they slow down and keep hitting snooze, rather than brushing teeth. Funny clock vs toothbrushing - can you see where this is going?)

But oh, yes. All manner of things will be well, and all manner of things will be well. Regular amounts of sleep will slink back in, and routines will establish. Even carpools. But for now, while the Man is resting his post-Jimmy Fund walk bones in another part of the country, I have to go and washdishesmakelunchespacksnacksprintdrivingdirectionsmaillettersfindcleanclothes and find the Eldest's bloody OT report (see? a whole backlog), so that I can argue with the insurance people tomorrow. Danged thing isn't filed, it's not in the random pile of Papers To File, and it's not, as I suspected, in the Man's inbox. He gave me permission to rummage through it, and while I did find any number of things that should have been dealt with 4-7 months ago, I didn't find the report.

At which point, still alarmingly tired and now out of sorts, I tossed out the surprising amount of extraneous paper, stapled repeat notices of various sorts together, put all of the recipes into a folder marked "RECIPES," and have made another folder marked "REQUIRING ACTION."

Because every escape from the loving home and hearth should come with a price, don't you think?

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!