Sunday, January 31, 2010

and the Eldest bites back (part three)

Don't let anyone tell you different: a diagnosis may be a blow to the solar plexus, it may be the shatter that presages your world's splintering and collapse, or it may be the best thing that ever happened to you. Sometimes, it's all three at once.

Ours was more like a great, galumphing oh, duh. Hand smacks head. Jaw drops open. Silence, then a blathering, spluttering set of epiphanies.

Who hugs you at school? I asked him, OT report in hand. His face slumped, suddenly sad. Nobody, he said, and we both stilled. Sat there, each waiting for the other to fix, or understand, or explain this. He curled up in my arms, coiled, then relaxing into satisfaction. As if, I guessed, the extra cuddle was sloshing, spilling retroactively into the hug-less school day. Oh. Duh.

I carried that melting-into-good moment with me, and used it in the face of the Eldest's uglier moments. I began hugging him at pickup, while on good days, he made resigned faces at his friends. And maybe the hug sloshed over, or maybe it didn't, but there were fewer days when he yelled at me for showing up, the anger, the shrieking, swinging a fist that almost-but-not-quite connected, the explosion of a kid who can't handle anything more. He had more days when he knew that the hug was coming, and it would let him rebalance himself. Once, twice he smiled - and on one astonishing day, he chattered happily all the way home.

My days wobbled, ousted from their solid orbit between the poles of Horrific Dash Out the Door to Duck and Grit Teeth Pickup. No fool me, I knew a solid duh when I saw one. And I began to spread the OT's advice around liberally.

A pleasantly heavy layering of blankets, and the Eldest began to sleep better - managing many nights in his own bed. Some of those nights, he managed without his brother wrapped around him, to the protests of the small, Eldest-cuddling brother. When I tried the trick on the Toddles, our bed seemed to grow cavernous and wonderful. Fuelled by slightly more sleep, I began to wonder. Duh?

I stepped into shouting matches, and hauled the Eldest into hugs. Thanks, Mum, he said, suddenly cheerful. I needed exactly that. I pressed a firm hand onto his shoulder during clashes with the Man, keeping the rest of my body neutral, uninvolved. The Eldest relaxed under my hand, pausing, and finding a new gear. Watching, we all four blinked - and I went shopping. Duh.

In a quirky little store, I found fiddly things, of fidgets, as the store owner called them. My son has ADHD, and I stock tons of these, she said, and began lecturing about their various virtues and drawbacks. A week later, fidgets blossomed in the classrooms, and any number of happy little fingers fiddled while their brains worked. And the Eldest beamed, loving that his friends shared his tactile pleasures, certain that anyone else was missing out.

His teachers beamed with him, while the air turned a happy Disney, diagnosed seashell-pink. All was right and good, suddenly. When the Eldest stood next to his chair while working, one knee on the chair - off the chair - on the chair - one foot tipping the chair backwards, that was fine, the teachers said. He often didn't join the others for a huddle and talk after a game in phys ed, but oh, that was fine, the teacher said. He drummed on his siddur, rather than reading from it - but that was fine, said the teachers, and on and on. Was it possible to be cured by dint of diagnosis alone? The Eldest seemed happier, and I? well, I was insufferably triumphant.

If the Eldest has a diagnosis, then I'm to be vindicated, aren't I? Freed from loving, caring criticism about how I parent, how I should parent, what my child really needs - or ought to do. See? I could say, he's cracked. That's why you should shut up and let me do this my way. Or, see? I could tell my Guilt-o-Meter, he's cracked. That's why you should flip that arrow back to zero, and let me off the hook. Neener, neener, neener, o ye People Who Know Better. And I sneered, happily.

It was fun, but frankly small, even petty in light of the kid himself. And to be honest, I was awed by his bonelessness in the midst of a hug, the sudden wash of peace when he found himself in my arms, or the sharp, even painful spike in energy and motion when he swung into motion. Touch and peace, motion and whooosh! - these are the two poles of the Eldest's diagnosis, and they are inevitably imbalanced, balancing each other while individually extravagant. Richly peaceful; screechingly in motion. Watching the kid teeter between these poles. knowing finally what I was seeing, the sight outweighed any neener-neener. I began trusting the diagnosis, and bullied our way into an occuaptional therapy clinic that specialized in multiply-cracked kids. Balance, not broken, I told myself, and repeated this silently as I drove to the OT appointments. Learning, not cracked. Have diagnosis, will fix. In the back seat, hugged and fed, the Eldest muttered to himself, drawing diagrams of possible coups.

The OT taught us about engines, and how they can run high, too high, or too low. Sometimes, rarely, just right. It was classic self-awareness, self-regulation stuff, and I was all for it. She taught the Eldest methods for giving himself measured bits of motion, without throwing himself into the whee, whizz, bam! of bouncing-off-walls motion. She asked him to chart his engine at various points in time, gave him cards and photos to use in selecting his tools. But he despised it all. Growled. Roared - and then, in true Eldest style, became very, very calm.

And quit.

This engine thing, he said, doesn't work. Sometimes my engine is supposed to be high. Like in gym class. Sometimes it's supposed to be low. I eyed the hairsbreadth between me and a shriek, wondering if he was right. The Eldest refused to discuss engines, tools, or to actively regulate his behavior. An old pro at pain-management tools, tricks to be self-aware, the kid now sneered at suggestions that he might want to choose something to help him sit and do his homework. Something to redirect him when he was fighting with his brother. Something to help him be a better teammate? I suggested, and he roared.

After school, I was pulled over by the teachers. He's having a hard time, they told me. It's been a rough week. And then, another.

Maybe, I asked, eyeing the end of my rope, and scenting the lower third of his bucket, maybe, the kid's right? I sat down with the Eldest. Okay, I told him. Forget the engines. You are right: they are wrong. Let's try something else. And truly, we did.

We mapped out speed zones - low, medium, high - and made lists of what activities fell into each category. We designed a speedometer, and found a plastic box for him to carry it in. There! I said, triumphantly. This is better. And I relaxed, certain that the problem was the tool, the Eldest's understanding of it, and especially his sense of ownership, of investment in that tool. We've fixed it, I crowed, and the adults happily anticipated success, while the Eldest tried gamely for a few days. Then quietly gave up, choosing diplomacy over the picket line.

Is he using any of the OT's methods? I asked the teachers, curious. No-oo, they said, slowly. Thoughtfully. When we ask him about his speedometer, he just takes that as a different way of telling him that he needs to be better behaved. And the inevitable followed.

Duh, I thought. And wondered if his real rebellion was against being broken. Sproinggg! went the Guilt-o-Meter, and I rather thought that I deserved it. The Eldest dropped his tools at the bottom of his bottomless backpack, and left us staring at the flattened, battered diagnosis.

Maybe, said the OT, we should do a few more sessions, after all. And nobody, I'm sure, sighed.

Friday, January 22, 2010

erm. well, then.

My apologies for the quiet, while armies of viruses held delighted, ancient victory dances on my bones.


They appear to be done now. But it was still radio silence today, while we disconnected all electronics, allowing the Window Guys to replace the window that has been broken for lo, these many frigid, blanket-wrapped winters. I used to shove towels in front of the study (a.k.a The Room In Which Children Do Not Go, Hey You - Get Out Of There) door, and no longer shall we do so. Heck, we shall now revel in the window-ness of the study, examining this new brave new world, in which windows keep out rain, cold, and even tilt - the better to be washed, my pretty.

Which may have a drawback, but I'm too giddy and unvirally-danced-upon to think of it.

But, returning to the viruses: it is possible, based on unverified rumors and highly reliable seventh-hand sources, that the flu has arrived. Again. Or possibly for the first time - I'm unclear. Not having had the energy to call my doctor, or even finish sentences for a couple of days, I really couldn't tell you exactly what walloped me, but I will say this: the next time that I mock the Man for being highly incompetent at being sick, laugh at me. Because on the day that I finally realized that I was running 101F, I then prudently decided to finish the filing, wrap some overdue baby gifts, and work on the next (and last!?) OT post for this blog. And pay some medical bills (hence, the filing). And send a couple of ridiculously overdue emails - and oh, I'm sure there was something else, but then I fell over.

Surprised. While on the phone, and trying to think about something involving a calendar.

This morning, I came to myself, skull splintering with a migraine, but nonetheless more mentally coherent than I'd been for much of the week. And was seriously tempted to roar. Somewhere in that week, the Eldest had swung on a towel bar (not built to hold your weight, buddy - whoops!) and we were now sans bar but plus bruised kid, I'd missed a chavruta, a playdate for the Eldest, a night out with a friend, getting the car inspected MENTAL HEALTH DAY. Which the Man and I had scheduled (!) last week, and now poof! gone in a cloud of virus.

sighhhhhhh. But hey, at least I can now wash the study window, right?

The question of feeding Imperfects, when mama Imperfect is non compos mentis, is hardly difficult. The Man makes pasta, cuts up cucumbers, tofu, and salad dressing features in there somewhere. The boys love it, but personally, I rather prefer the Man's crockpots.

Honestly? I have no idea what the Man made, but I can tell you that something smelled absolutely, unfairly delicious at one point. I fell asleep while trying to persuade myself to go and eat some, and woke up to find that someone had scraped the pot clean. Nonetheless, at some point it occurred to me that I ought to be making food, so I staggered out of bed and made this:

Comfort Food Soup:
adapted from Jeannette Seaver's Soups, this serves roughly 4-6 people

3 Tb oil
2 tsp caraway seeds (yes, yes, I know: caraway. But hang in there with me, people, somehow this actually works)
6 cups water
2 potatoes, cut small. Wash the taters first, if you like - I don't bother peeling them. But do cut them up small, because that helps.
1 onions, also cut up small (okay, diced)
1 package hot dogs, cut up small (because if you don't, the kids will pick out the hot dog bits. The goal is to make it sneakily tricky for them to just eat the 'dogs)
2 bay leaves
salt and pepper to taste

In a large pot, heat the oil. Add the caraway seeds, and when they begin to pop, toss in and saute the hot dogs and onion. When the onions are really nicely browned, add the rest of the ingredients. Stir, scraping the bottom of the pot to get all of the best bits off. Bring to a boil, then pop a lid on top - at an angle that will allow some steam to escape. Simmer happily for 25 minutes, then serve.

And serve again. And possibly, depending on the populace at your dinner table, stick an elbow in the spot best suited to letting you serve yourself fourths. Assuming, that is, that the viruses have stopped parading and are too busy doing something cirque du soleil-ish to stop you.

Thursday, January 14, 2010

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)

Monday, January 04, 2010

a pause for the Toddles

And did I mention that it snowed?

Also, that the rose colored glasses are somewhere, but I'm too tired to go find them. No sooner had I counted my blessings, than two of them ran down the hall and annexed most of my bed. When I retreated, the shorter one followed. Considered his options. Climbed into the twin bed where I was hiding.

I found you! he told me, cheerfully. Now we can snuggle.

And there's no really loving, gentle way to explain that, hey, kid, I love your snuggles - but I'm just not so much loving it at 3.56 of the a.m. Sigh. I know the drill - and if the Knuffle Bunny Dad didn't catch a break at this hour, then I'm probably not going to, either.

The kid is ruthless. Also, have I mentioned? fairly awesome.

Today was his long delayed 4 year checkup. He scored above the 25% for height, and at 60% for weight. whoa. You can count his ribs, but he's a solid little guy. And apparently, a chatty one.

Hi! said the suddenly non-shy Toddles. Is that homework?

In the doctor's waiting room, a woman looked up from her questionnaire. Well, it kind of is homework. Her companion leaned over. Do you have homework? The Toddles grinned, delighted. Well, I don't have math homework, like my brother, but I have robotics, and that's kind of something I like to do at home also. So it's homework! The adults smiled at the little guy, as he explained about how he makes robots, how I only know half of robotics. But I'm figuring it out each day.

I was tempted to explain (it's a study on child development, they use Lego - not wires), but she was so clearly enjoying the adorableness of the little kid that I don't bother. A nurse called the Toddles' name, and the adults looked slightly disappointed as he zipped off, his monologue unfinished.

One heartening checkup later (normal, normal, normal, and oh, cool said the pedi), the Toddles needed four vaccinations. This is came as a bit of a shock for both of us, as the first departure from our delayed vaccination, one at a time approach. We'd used this approach as an effort to avoid triggering the Toddles' immune system. Umpty-ump allergies later, the damn thing is triggered. And the Toddles, perforated. Cheerfully, which unnerves the nurse somewhat. It hurt, he told her. That's why my body went like this - and he did a fairly precise imitation of the taut arc of his back, and the set of his shoulders as the needle hit his thigh. But my legs are feeling good. Hurting 10%, but the rest is just fine.

The nurse hit the floor, and as we left, I heard her telling the other staff about this little kid, who said... But for all his calm, the Toddles dove for his bag, walking out of the waiting room wrapped in comfort. He had his binky in his mouth, and his favorite bits of cloth curved around his shoulders, and whisking gently across his cheek. His eyes were unfocused, and his face relaxed, melting into the comfort he was creating. All of that chatter, that cheerful, lovely boy stuff - and the improbable inoculations - and here was what balanced it. He walked next to me in a bubble of Toddles-touches, the sensations that he'd explained once as being things that feel right, and make me happy. I rather envied him.

From down the hall, a clear, quiet tenor drifted. When it passed the Toddles, he looked up. Smiled at the slim, dark man. And reached up, stroking his bit of cloth across the man's arm.

The man blinked, and stopped singing. Smiled back at the Toddles, who explained: it's edges, and reached up again. The man's face shifted to quizzical, then worried - is this okay, Mom?

Oh, um I said, hastily. That's something that he says is a good feeling, and I think he's trying to share it with you.

And the stranger's smile returned, streaked with delight. I've found a friend today, he said, surprising me with his pleasure. Or maybe a friend found me. He put his hands together, touching them to his forehead. May you be blessed, he said, and pulling a hospital ID from his pocket, disappeared into an office. Wrapped in his comforts, the Toddles nodded solemnly. Blessed, he told me. And I drove us home, determined to tell the cute story about the kid, the shots and the shared comforts that followed.

But of course, the comforts are bits of fabric that are frayed just so, brushed against the face in this one, proper way. And the oral comforts of the binky, that his brother eventually replaced with a thumb. The Toddles is awfully pragmatic about his edges and his binky - I could set my clock by him, the preschool teacher said, he goes for his edges and binky every day at the same time - but it's much the same thing. Tactile input, sensory input that balances his day's needs.

Which brings me circling back, I suppose, to the OT. Right, then, it's time to stop hiding and finish that next post. But for now, I'll leave you with this: the Toddles, re-balanced. And, might I mention, still awake at midnight...!!?

(Hey, Mo Willems: about that 2 am thing - can we discuss the example that Trixie's dad is setting?)