Backwards Motion

It's been a tough week. Power outages, Mamapop outages, booze outages, oh my. 

And then there's Noah.

Noah...well. Noah has not been receiving any real occupational therapy since school ended, and it's showing. It's showing HARD. 

He's a ball of tics, all of a sudden. A ball of walking, wiggling, finger-chewing, repetitive stimming behaviors. He speaks in scripts, he lives in rituals. He doesn't walk, he runs, while shaking his limbs and making vibrating-like noises with his mouth while every person in the area turns to stare because what the...? Ice cream is too cold, macaroni and cheese is too slimy, using a fork is too hard. He hums and squints and worries about everything. Last night he clapped his hands over his ears when I reached for the faucet because it was all too loud, TOO LOUD. 

He doesn't look me in the eye, anymore. His eyes stare somewhere off in the distance, right above my head. I repeat requests and questions to him, over and over again, before finally shouting his name to get his attention. He snaps back from outer space and seems surprised that I'm even there. 

"What?" he asks.

At camp, he's not participating as much as he used to, choosing instead to escape the group and spend his time doing laps of that strange wiggling-stim-run around the classroom over and over. Any emotional outburst from another child drives him up the wall. He begs to go to the OT room, a request the understaffed room can only occasionally grant, and even then, it's not the same without his therapist there pushing him, giving him what he needs in addition to want he wants. (Which is: Tire swing, all the damn time.) We sent him to the speech-focused camp simply because that's the one we had insurance approval for. Bad call, in retrospect, but...well, there's no rewind button on these things.

We're appealing our insurance's rejection of his OT sessions, of course. We have one more appeal -- this is our third, and we're doing it with help from Jason's company's insurance broker -- and then we get to file a complaint with the state and force yet another review and appeal.

A review and appeal for services Noah received in DECEMBER, by the way. If we're lucky, they'll approve our request for coverage through last...February? March, maybe? Then the process starts all over again, for the next approval of an extension of coverage for therapy that ALREADY HAPPENED. Now that it's obvious that Noah still desperately needs regular OT sessions, I'm guessing we'll be finishing up the appeals process sometime in 2032. 

(Insert crazy back-of-the-throat GAAAHZZZPPPBBBTT sound and a good head-smash against the wall)

I realize, though, that we are lucky -- at least we know what the problem is. We know what's missing and we know how to help. We can pay out of pocket, since the school district program is mostly concerned with his fine-motor skills and not so much the other havoc that dyspraxia wreaks on the rest of his body. It's just...so tough to see some of that hard-fought, so-throughly-documented-just-a-few-months-ago progress go away, but at least we saw it in the first place. He can do it, and so can we. Even Noah knows. He begs me every day when I pick him up from camp: I want to go to OT. I WANT TO GO TO OT. 

I know. And dammit, you're going to go to OT. 

Dear Insurance Company: Please Define "Effective"

Our insurance stopped covering Noah's occupational therapy back in November -- conveniently, right around the time we hit our out-of-network deductible, and actual promised benefits would actually have to be paid by them, but they indicated that they'd be happy to consider an extension of the coverage, so long as we provided them with X, Y and Z.

Two months later, they came back and said that actually, could we also send them W? And expand on Y? And provide some background on Z? 

And we did, and Noah's therapists did. We got doctor's notes and his school typed up reports and then longer reports and then the insurance claimed we hadn't sent something that we actually had, and on and on it went. For seven months. We continued to send Noah to therapy, the claims we submitted anyway came back rejected, the bills piled up unpaid. For SEVEN MONTHS.

Then finally, a decision: 

Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.

Rejected.

***

Noah never got mosquito bites, or at least, that's what I thought. I rarely, if ever, saw any welts, even when my arms and legs were covered in them. I assumed he had some kind of immunity to them -- if he did get bit, he didn't swell up, he never scratched. 

He never scratched anything, though. The ugly, scaly eczema that plagued him every winter seemed to bother me more than him. He hated the feel of lotion though, so sometimes I just left his skin alone, since he wasn't complaining. 

This winter, when the dry skin appeared, he scratched his body so hard he broke the skin, peppering himself with tiny scabs from his fingernails night after night. The itching, it turned out, was unbearable.

And this summer, he definitely gets mosquito bites.  I think he has all along. I just don't think he knew what to do about them. 

***

He walks barefoot across the grass, the beach, the scratchy welcome mat. He never used to.

He rides a bike, a scooter, the merry-go-round, the coin-operated cars at the mall. He never used to.

He says, "I'm thirsty." And, "I'm hungry." And, "I'm hot." And, "I'm cold." He never used to.

***

I remember the first time I heard him humming in his room, when he was supposed to be sleeping. I peeked in, expecting to see him singing to a stuffed animal or toy. Instead, he was violently rocking himself back and forth, flipping his head and torso back and forth, back and forth, with his hands tucked sweetly next to his cheek, in the sign for "sleep," though the fingers in one hand were wrapped tightly around a double-A battery, his attachment/transition object du jour.

He still stims. It no longer interferes with school, it's no longer quite so obvious to people who aren't looking for it, but I know he stims. He resets his vestibular system with a weird-looking full-body wiggle thing, and he still hums and lines up toys and squints at lights and chews on his fingers. Sometimes we can snap him out of it; sometimes he just needs to find his own way back to center. 

At night, though, he sleeps curled up with a stuffed rabbit he calls Knuffle Bunny. He hasn't rocked in close to a year.

***

I told another mother at camp about the insurance company's decision, bitching a little about the fact that if they really believed SPD/SID was bunk, they wouldn't have approved all those earlier sessions in the first place, or sent us on that seven-month paperwork goose chase, so WHATEVER, YOU CHEAP JERKS. Her solution: Take him back to the doctor and ask for a different diagnosis, one that they'll cover. 

The funny thing is, if we'd been able to see a developmental pediatrician last summer, I have no doubt that we'd have left with a PDD-NOS diagnosis, at the very least. But there was a wait, and by the time Noah was re-evaluated, he'd been receiving speech and occupational therapy twice a week for several months. "He's just...not," we were told, when it came to the Spectrum. He's a lot of things -- SPD/SID, dyspraxia, low tone, language delayed, extremely bright, this and that and this  -- but he's not any one thing that matches up with any one diagnostic checklist. Maybe he was, at one point, but not anymore, I mean, look at him. 

I'm sure, if we had pressed the insurance angle, we could have gotten someone to commit to a Spectrum diagnosis -- a diagnosis I've been accused online of purposely avoiding or not admitting to -- but all I ever really, genuinely wanted for Noah was the right diagnosis. We had it. I thought that would be enough.

***

Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.

I respectfully, emphatically beg to differ.

End and Beginning

Indulge me, you guys.

For lo, my memory card reader has been lost for many, many days, trapping so many lovely photos from last week on my camera, because I am dumb and forgot that you can just stick a USB cable directly in the camera, like oh. Right. Technology! What a country!

Anyway, I'm on a very tight deadlines everywhere today because I promised to take Noah to see Toy Story 3 after lunch. He is LIVING for after lunch right now. It is the center of his entire UNIVERSE right now. He cried this morning when he realized that he could not simply eat a peanut-butter-and-jelly sandwich for breakfast and thus trick the space-time continuum into suddenly being "after lunch." 

(He JUST became aware of the movie's existence earlier this week. He saw a commercial for it and seemed to think, at first, that it was one of the previous installments, but then that big number three appeared under the logo and he was all, "THREE? THREEEEEE?" He's been bouncing off the walls ever since. I foresee a lot of super-geeky camping out in lines in this fanboy's future.)

Anyway! Here are some pictures from Noah's end-of-school parties. They're really boring. But also cute. YOU WILL LOOK AT THEM. DON'T MAKE ME GET OUT THE SLIDE PROJECTOR.

 

Attempting a craft at the first party. I look confused. This is probably accurate.

 

Modeling his handiwork. 

 

Performing a skit about...something....at the second party. Not pictured: Amy, looking confused.

 

Last summer, this program succeeded in getting Noah to wear a hat.

 

Hats! We already wore a hat today! NOW WE ARE WEARING MASKS ON OUR FACE.

 

And sitting on chairs, looking huge and grown-up and so very deserving of an afternoon off with Mommy to see Toy Story 3.

 

P.S. OH HEY THERE YOU THINK ANYONE WILL NOTICE IF I SNEAK UP HERE AND STEAL NOAH'S CHAIR WHILE RIPPING DOWN THIS BANNER ALL CASUAL-LIKE? WHAT UP LADIES I AM SO SMOOTH.

Summer School

One of the things we were told to "work on" this summer was...shaving cream. No! Really. We have a note from a therapist and everything.

OBVIOUSLY, a lot of Noah's sensory/tactile issues have improved dramatically over the past year. He'll walk barefoot in the yard, play in the sandbox, get dirty at the playground -- sometimes he'll even fingerpaint! Imagine that! But shaving cream still freaked him out.

And oh, but early intervention folks LOOOOOVE the shaving cream. They paint with it, "cook" with it, encourage the kids to get really messy with it. They've been trying to get Noah to play with shaving cream for a good two-and-a-half years now. It's like an SPD rite of passage: BOW DOWN BEFORE YOUR GILLETTIAN GODS.

But he wouldn't go near it, ever. He refused. Sometimes there were tears. Sometimes he'd hide under a table. By the end of this school year he would simply scream "NO THANK YOU" as soon as the can of foaming gel made an appearance. His teachers eventually stopped trying -- Noah was improving in so many areas that they decided he maybe deserved a pass on this one little quirk.

So that was on our list of suggested summer activities from his OT -- try to get Noah to play in shaving cream or similar slimy-textured materials. I admit I wondered if they were making a bit too much of this -- don't most adults have certain textures that give them the willies? And don't we all manage to compensate and/or avoid them and/or more or less survive just fine? Who died and made shaving cream so goddamned important?

But since it is such a big part of the school day and curriculum, I agreed to see what we could do at home. I had this big whole plan involving Ezra and the bathtub and good old-fashioned peer pressure (mmm, sweet delicious rivalry), but then I kept forgetting to actually try it. I thought about maybe doing something Huge and Awesome with our wading pool but...come on, even I knew that had disaster written all over it. Put the buy-one-get-one-free coupon down and WALK AWAY. 

Yesterday, Noah asked to play with his phone. I said sure...after we played one last game. On a super-spur-of-the-minute impulse, I tossed a couple little toys in a bowl and buried them in shaving cream. I told Noah he needed to find all the toys I'd hidden in the bowl. Then I stepped back and bit my lip and cringed a little, waiting for the kind of reaction his teachers described.

"Okay!" he said.

He tested the foam with one finger, then quickly found the first toy. He then shoved both of his hands into the bowl and pulled out the rest.

"I found them!" he announced.

15 seconds. The whole endeavor took exactly 15 seconds. No crying, no resisting. He even laughed and posed for a photo before calmly trotting off to wash his hands. No big thing.

Shaving cream: 0

Noah: 3,490,029,280,901

 

Backpacks, Loops & Spoons

Today's the last day of school. There are parties, ridiculous fake graduations, special year-end slideshows. I'm bringing the napkins and paper plates. 

Noah wears a backpack now. We can drive around the loop without a bone-melting, ear-piercing tantrum. He can hold a crayon, cut with scissors, ride on the big-kid swings and a merry-go-round. He can write all his letters and his name, and will draw pictures of things he likes from his favorite books. He's starting to read a few words and is really, really good at math. We suspect that what we first assumed was synesthesia is actually something more like perfect pitch -- he identifies the song colors right along with key changes, and can describe the color of other tones in the world, like cell phones and car horns. 

And he can eat ice cream with a spoon.

Last summer, right before school started, we went to a pizza restaurant and bribed good behavior from Noah in exchange for chocolate ice cream. Which arrived not in a cone, but in a bowl with a spoon. Noah still ate everything with his fingers, but couldn't handle the mess and the cold of ice cream which is supposed to come in a cone like it usually does what is this nonsense no spoon no spoon NO SPOON. Needless to say, this was not a restaurant outing that ended well. He freaked out, epically, and we abandoned the ice cream on the table, and drove home in angry, baffled silence.

I've written quite a bit about our battle with utensils over at The Stir -- how it's been the perfect storm of fine motor skills, oral hypersensitivity, insanely picky eating and Noah's general refusal to do anything that he's not immediately good at. How we enlisted the help of teachers and OTs and strategic snacks and school and bribes of old first-gen iPhones. 

Well.

Game, set, match.

These little triumphs -- loops and spoons and hours and hours with patient, amazing teachers -- have helped win a bigger war: Noah is confident and flexible now, so much more willing to try new things and join the group. The world is not out to get him anymore, to overwhelm him with things he doesn't like and concepts he can't process. He understands how to play and how to talk and how what when why who. 

I had to miss his Field Day last week because of work, though when I saw the announcement I admit I didn't think it was anything worth rearranging my schedule for -- Noah probably wouldn't participate but would just run around the outskirts and yell at anyone who dared put demands on him or offered to show him how to hit the teeball. 

Another mother took photos for me -- photos of Noah throwing beanbags, attempting a long jump, happily holding the edge of a parachute next to his friends, leading the rolling charge in a huge herd of children chasing a ball almost as big as they were. I was shamed to realize that I still expect the Then instead of the Now. 

And the Now is better. The Now is so good. 

 

 

Congratulations, Noah, on a great year. We're ridiculously, insanely proud of you. 

It's Not Him, It's Me

Birthday parties. What in the world is it about the stupid BIRTHDAY PARTIES?

We've gone to a few very successful birthday parties since, well, the very unsuccessful ones. I've gotten selective about which ones we attend -- if it seems like a low-key affair at your house, yes. If it sounds like something with a lot of structure and set activities, I usually decline. 

We went to a party this weekend. At someone's house. It was big yet fun and low-key and full of general mayhem, in a good way. There was also...a petting zoo. 

It was so cute! So fun! Delightful! Some ducks and chickens and bunnies and a pony whose head barely reached my knee (but whose penis practically touched the ground and I'm sorry I can't help but notice it I mean look it's right there and it's huge OMG). Noah initially resisted the call to round up around the enclosure and meet all the animals, but by the end of the handler's introductions he was begging to have a turn inside. 

He stepped in and accepted a lap-mat of some old carpet and the tiniest baby bunny ever. He held it gently and giggled and declared his love for it over and over again. Jason and I beamed from the other side of the fence and I wondered how much this sort of thing cost, like I do at every party we attend because I guess a successful party turns me into Liz Lemon in Cleveland. This is a great party! ! I want to have this party! I want to live at this party!

And that's about what I was thinking around the time Noah suddenly decided he was done holding the bunny. And...I don't know what happened, except that...one second the bunny was on his lap and then...oh my God...the bunny was on the ground. He dropped the bunny. 

There was a collective gasp from every adult in the vicinity and Jason and I kind of screeched in unison at him and the handler scooped up the bunny and...oh my God...Noah was LAUGHING. 

The handler scolded him. "That's not funny," he said. Jason took Noah inside for a Serious Talking To while I just sort of stood there in the mob of parents and kids, hoping maybe the ground would open up and swallow me up. Oh hi, yeah. I'm the mother of the kid who dropped a baby bunny on its head and then laughed about it. Parenting win! Wanna playdate? 

Noah spent a few minutes in time out and then rejoined the party. Just in time for the animal handler to bring out one last friend: a tortoise. He plopped it outside the enclosure in front of a crowd of mostly unsupervised toddlers and preschoolers and instructed them to only pet its shell, and NOT to touch its head. 

I crouched down with Noah and repeated these instructions. He patted the shell and then tried to get a better look at the turtle's face. I pulled him back slightly because I just had a really bad feeling about this -- there were easily a dozen kids crowding around the turtle and I felt the level of impulse control was collectively dropping.

And then, for reasons I simply cannot fathom, Noah raised his foot and moved it slowly in the direction of that turtle's head, like he was going to kick it.

I had my hands on him again within a millisecond and yanked him completely away from the crowd and the turtle. I looked up and there was a finger in my face. It was the animal handler.

"KEEP HIM," he said, moving his finger from me to Noah, putting much emphasis on the word him, "AWAY FROM THE ANIMAL."

***

When I was in first grade our teacher attempted a slightly too ambitious art project involving covering cardboard stars with aluminum foil. I guess she bought the wrong foil or something, because we all had a terrible time with it. The foil kept ripping and puckering and nobody -- not even The Kids Who Were Good At Art (of which I was one of) -- could get their star looking remotely decent.

The teacher kept giving out new pieces of foil whenever we tore ours, and after having my hand raised for awhile, I approached her in the aisle and requested a new one. 

Instead of giving me the foil, she spun around and yelled at me. She used my full name and told me to go sit down at my desk that instant and use the foil I already had.

I went back to my desk and cried. I remember the sight of that shredded foil and my ugly star blurring up under my tears. I did the best I could to fix it but it still looked terrible -- doubly terrible, now that I was one of The Kids Who Get Yelled At (of which I'd never, ever been). 

I get that my teacher was probably stressed out and thoroughly annoyed, and that my request for a third or fourth or fifth piece of foil simply came at the absolute wrong moment, and I wasn't supposed to step away from my desk in the first place, but oh, to this day I remember everything about that moment -- the tone of her voice and the look on her face. 

She hung everybody's star over their desks anyway, Mine was not a Good Star. I hated it and hated looking at it and when they finally came down I tore it into little pieces before tossing it in the trash. 

***

I guess you can add "birthday party petting zoo animal handler guy" to the list of people I never expected to get yelled at by. But even now, many many hours later, I can still remember everything about THAT moment. The way he instantly singled Noah out as the troublemaker, the way his voice changed from the enthusiastic party entertainer to General Serious Angry Person, and the way he turned the word "him" into something more like "your out-of-control sociopathic kid."

My chest deflated like I'd been punched. I nodded meekly and grabbed Noah's hand and walked quickly and wordlessly back inside the house, where I proceeded to give Noah a verbal dressing down of epic proportions.

Jason -- who hadn't witnessed any of it -- came in and tried to find out what happened. He thought, from the way I was talking to Noah, that he'd actually kicked the turtle. Which...he hadn't. And...I don't think he was really going to. I think maybe he thought he could get around the "no touching" rule if he didn't use his hands? Maybe he was just overwhelmed and weirdly impulsive? Or maybe he wanted to scare the turtle? Oh God, why would he want to scare the turtle? WHAT. THE. FUCK.

Another father overheard my shaky-voiced explanation about what happened and declared it all to be bullshit, there's a good 50-plus kids here under the age of five (many of whom are, BY THE WAY, considered special needs), the turtle shouldn't have been outside the enclosure in the first place. 

And I agreed with that to a point, but still. I looked back at Noah and his mostly oblivious face and got whacked with a huge secondary wave of emotion. He didn't care that I was upset, he didn't care that he might have hurt or scared the animals, he only cared that I was making him sit in time-out. I felt kind of woozy at all the implications of the situation. Where's his empathy? Is this normal? This isn't normal. What have we done wrong? We have pets, we love our pets, his father can't even bring himself to kill a mouse. He laughed that time I accidentally stepped on Ceiba's paw and she yelped, I'm always reminding him to be more gentle. How did I miss this?  I'm a good mother. I work so hard. I love him so much. How did I end up being the mother of That Child at the birthday party?

Or, conversely: How did I end up being the mother who allows six words from a complete stranger to send her into an absolute tailspin of parenting confidence?

I told Jason I wanted to leave, but he insisted we stay. We swapped kid duties so I could watch Ezra and have a break from Noah and my face-melting anger and embarrassment. Ezra watched the ducks inside the pen and tried to imitate the quacking. The handler asked if I wanted to bring him inside. I politely declined, saying I thought he was a bit too young. 

(Fuck you, I also thought.) 

(I'm sorry, I also thought, immediately after.)

We came home and had several more talks about what happened. Noah was able to correctly parrot back what he had done wrong, though I couldn't help but feel that he still wasn't getting the why. Jason Googled some books on being nice to animals. I went through our DVD collection and plucked out anything that presented people or animals getting hurt as "funny." 

And I calmed down. I dialed back the terrible fears that This Was All So Indicative Of Something. Noah is not going to grow up to be a serial killer because he may have almost maybe thought about kicking a turtle at a four-year-old's birthday party. It was not my proudest parenting moment but I must be doing okay if it actually does end up being one of my worst.  I thought about what happened in first grade and laughed at myself, a little bit. Deep breaths, moving on, sack up, ho. 

He's still a Good Star. 

A Very Good Weekend

Jason and I overthink the weekends, sometimes. We get our hearts set on elaborate outings that end up being enjoyable for all of 45 minutes but require three times the planning and travel time. 

We purposely decided not to do that this weekend, and the most ambitious activity we planned was a trip to the playground. We spent a buck-seventy-five apiece to ride the park's miniature train, which to Noah and Ezra, ranks just above everything else in the world in terms of face-melting awesomeness. 

 

For Noah, the most thrilling aspect of the train is the fact that he gets his very own ticket, that the conductor personally takes and punches a hole in, just like in The Polar Express. I especially enjoy watching this very serious transaction early in the season, when the conductor -- usually a teenage boy or retired train-loving grandpa -- is not achingly sick of his life yet and still seems openly charmed by little four-year-old boys who regard him with immense awe and reverence, because in their minds a summer job driving an electric train for the Parks Department is just about on par with being an astronaut or professional dinosaur wrangler.

 

He's a Leslie Knope in training. 

 

Ezra technically rides for free, but he was so heartbroken over his lack of a very own ticket that we splurged and laid out an extra $1.75. And it was totally worth it. 

 

The first time Noah rode this train he was Ezra's age. He cried and clung to me in terror, to the point I thought they'd have to stop the train and let us trudge through the woods back to the station. He was never, ever like Ezra, who simply accepts that things are fun because they are meant to be fun. If other kids seem to be enjoying themselves, well, he'll take that as a sign that we're NOT all going to die a fiery explosive death while being force fed mashed potatoes and finger paints. 

 

To be fair, Noah's been enjoying the train ride for several summers now. And the slides, and the wobbly bridges, and the rock walls, and the big boy swings, and essentially most playground equipment he was once too fearful or uncoordinated (or both) to attempt. (Never mind that "once" could be as recently as last month for some of the last few obstacles.) The list of things he can't (or won't) do is shrinking at an awfully, wonderfully fast clip these days. 

 

 

 
He has all the confidence a little boy his age should have, and probably some to spare. "I'm going to do it myself," he announced in the car, while attempting to buckle his own seat belt. "And you're going to be so proud of me."

 

 

 

 

And Ezra, our Fearless Monkey, looked on from his own seat as Noah successfully buckled himself in. You could tell he was so jealous, but he clapped for his big brother anyway.

Verdict

In the end, the decision was easier than I thought it would be. Jason and I essentially did a "on the count of three everybody say their gut feeling okay one, two, three" conversation and both blurted out the same answer.

And it felt like the right one. Even though it wasn't the answer I originally saw myself choosing, honestly.

Not that we haven't revisited the topic over and over and over again since (because oh, Christ, we have, and I am so sick of talking about this, even though I am here on my blog continuing to talk about it gah stab this entry with a fork I am so done). But each time we've ended up back where we started, nodding in agreement. 

We're going to stick with the IEP, the public Preschool Education Program.

(breathes into a paper bag)

I think I've mentioned it before, but we are fortunate to live in an AMAZING school district. And we live in a pocket of that district with especially well-regarded schools. Every time I set foot in the elementary school where Noah attends PEP I am endlessly impressed with the facility and the teachers and the quality of services we get for free there. ("Free" after high housing prices and taxes and blah dee blee.) And it is where we want Noah to attend kindergarten the year after next. (His September birthday puts him juuuust past the cut-off so we've got a nice automatic cushion of an extra year). Of the two schools he attends, this is the one that has laid out a clear plan to get him there, with whatever accommodations he still needs at the time. Keeping him in this program should hopefully result in a steady progression and a seamless transition.

The private school has been mostly pessimistic about Noah's chances of mainstreaming in kindergarten. So I guess we're choosing optimism.

I still wish Noah could attend both school again next year, but he can't. I hate having to look back on how far Noah's come since September and figure out which program deserves most of the credit, or if it really is both. And while neither school will have a morning option for him next year, the private school is run by an organization that DOES offer other services in the morning. Occupational and speech therapy, sensory integration groups, etc. He will definitely need additional services next year. (So trust me when I say: our decision really has nothing to do with finances; going a la carte with this stuff isn't really any cheaper.) His favorite occupational therapist moved from the preschool to the outpatient division: he's never stopped asking for her, so as much as I know he'll miss the school, I think he'll be really, REALLY happy with regular sessions with her.

So yes. I think this is our best shot at duplicating our current arrangement next year. It won't be the same, but hopefully: close enough.

We actually took Noah to his IEP meeting -- it's distracting to have him there, but I just like the team members to SEE HIM and interact with him while discussing all the more clinical stuff and All His Shortcomings instead of talking about him through the filter of paperwork.

He sat next to his teacher. He behaved beautifully. Though all he wanted in the world was her attention. When she gave it to him, he lit up. And I watched her face, and...it was so kind and loving. Genuinely loving. She laughed at his jokes and asked him questions and knew exactly how to bring him back to "inside voice" and was obviously so proud of the progress he's made this year. "He is soooo smart," she sighed, as she gave the rundown on his academic skills -- which for the first! time! ever! were actually in line with what we knew he could do. If he stays in PEP, she'll be his teacher again.

I watched her face and swear I could see what she wanted and hoped for him, and what she believed he was capable of. And in that moment, it was like looking into a mirror.

Choices We're Lucky To Have (But Still Don't Want To Make)

Well. So. That happened. And it was fine. And now I have absolutely no clue what we're supposed to do next. I've been sitting here in a sandwich shop for an hour and a half staring at a bowl of cold soup, trying to string words together, trying to come up with anything else besides: Damn! Fuck!

The Immersion Program. It doesn't exist! I mean, it does, but not for kids Noah's age. Kids his age have one basic option: a five-days-a-week version of the class he's in now, though with more of a focus on the kindergarten transition. And it's in the afternoon. They want him in it.

Where did we get the brilliant idea of sending Noah to a non-existent immersion option? From his five-days-a-week private school, who originally suggested it without fact-checking the age requirements. The private school that also wants him to return next year. That also meets in the afternoon. 

He cannot attend both. We have to choose, one over the other. 

I realize how silly this sounds: We only get to send our child to ONE nationally-recognized special-education program? And one of them is FREE? Damn! My life is so hard, dawgs.

And yet. Damn! Fuck!

In one corner, we have the public school program. A very academically driven program, focused on skills and behaviors. And oh yeah, it's FREE. Noah's progress there has been well-observed and documented and everybody loves him. I know plenty of parents have negative experiences with district special-ed programs, but our experience has been the polar opposite. They admit he will be probably the most verbal and highest-functioning child in the class next year, but feel this class is still his absolute best shot at transitioning to kindergarten (and this is the school where we want him to attend kindergarten) the following year. He could have the same teacher, whom he also loves; he'd enter kindergarten with protection and an established IEP in place. AND ALSO: IT'S FREE. Walking away from this program would be insane. 

In the other, we have the private program. The one we agonized over. The one we saved up for and sacrificed for. It's less about the academics and more about addressing Noah's underlying issues, on developing core competencies and stuff like confidence, trust, bonding, the idea that school and peers can be fun. He loves it more than anything on earth, and they love him back, and have helped us figure out how to parent Noah in more ways than I could ever list. I do not regret a single penny spent. We could probably arrange outpatient therapy there, but I know it won't be The Same. Since October, he's blossomed and grown and made enormous strides and the whole place feels like a big extended family now. Walking away from this program would be insane.

So that's where we are, with our very uniquely privileged problem. 

And now I have a meeting with the private school people so I can tell them what the public school people told us. And then I need to tell myself that with so many amazing people who care so deeply about my amazing kid, there's hopefully no such thing as a wrong decision. 

I, EEEEPPP, Round Two

Today is Noah's IEP meeting, to determine educational goals and his placement for next year. We plan to ask for the immersion program, a new speech evaluation, and to argue against a recommendation of reducing occupational therapy to every other week.

  

I'm going prepared, yet white-knuckled and throat-clenched and stressed-out beyond belief. So. You know. Business as usual. 

(Wish us luck.)