Last night we took the kids out for dinner. We'd heard about a nice-sounding restaurant with a "kids eat free" night on Sundays, and we're always, ALWAYS trying to find places that fall within that elusive category of Noah Can Order A Damned Grilled Cheese Sandwich But Mommy And Daddy Can Order Something Besides A Damned Cheeseburger. This place looked like it might fit the bill. I missed the thing on their website about the magician, though. We didn't know about the magician until our waiter stopped by to check in on us -- yes, yes, everything is fine! The food is delicious! Love the kids' bento-box style meals! Ezra ate every bite, including the entire section of ketchup, and Noah still cannot BELIEVE he just got a side of Goldfish crackers AT DINNER, like ARE YOU KIDDING ME, OUT-OF-CONTEXT SNACKTIME, THIS PLACE IS AWESOME -- and he told us that a magician would stop by in a few minutes to show the kids some tricks. Uh-oh. Right on cue, Noah started to protest and amp up into a fight-or-flight level of worry. "No magic! No magician! I don't want a magician! I don't want that!" Jason and I hugged... Read more →


What It Looks Like

A lot of families, as part of the path to diagnosis and treatment, videotape their children's behavioral...quirks, I guess. Tics. Possible symptoms. Just so the doctors or therapists or evaluators can "see" what you see at home. We've never done that, at least on purpose. Noah's school does a lot of videotaping for therapeutic/assessment purposes, but I've always just INTENDED to capture the normal happy fun stuff. I say "intended" because if I go through old videos of Noah I'm often kind of retroactively shocked by something we inadvertently captured that's like, "THAT. RIGHT THERE. THAT TURNED OUT TO BE THING." Noah tip-toeing across the living room; screaming in terror the first time we put him on a teensy pedal-less baby tricycle; telling some great-sounding story that we would only later realize was little more than an echolalic script. We're still in insurance limbo. We haven't heard the results of our last and latest appeal, which will dictate whether we get to 1) file a grievance with the state, or 2) finally get a couple months' of bills paid right before filing for YET ANOTHER request for an extension of benefits, bwaaaaaaaaahhhhzzzzzzzbbbtttt etc. I also need to go back to... Read more →


About 10 minutes or so into the Blogging Autism panel at BlogHer, the table surface started to get all fuzzy and my eyeballs felt hot. "Shit, I'm not gonna make it," I mumbled to Christina, as we'd already briefly debated the odds of getting through the session without crying. Nothing had even been SAID yet, beyond introductions to the panelists and the theme for the discussion, and yet there I was, hiding my reddening face behind my conference schedule as the weight of the previous days with Noah decided to drop from the ceiling and land squarely on my chest. "It's just been a really bad week," I whispered as my neighbors patted my back and scrambled for tissues, probably wondering what the HELL had managed to happen in that 10-minute timespan, because I'd all but floated in like, WHAT UP BITCHES, LET ME ENTERTAIN YOU WITH ANECDOTES AND EXAGGERATED HAND GESTURES. ALSO, MY SHOES ARE CUTE, NO? Just a few days before, Noah had a panic attack. A really, really bad one. And while we've certainly dealt with anxiety and freak-outs in the past, this was...different. Worse. Especially because goddammit, wasn't he doing so much BETTER, a few weeks... Read more →


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... Read more →


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... Read more →


Camp, day two. Huddled at B&N again with, unfortunately, no wallet. Hiding behind a...pillar thing so the Imaginary Authority Figures don't catch me poaching free wifi despite not purchasing anything. Though I would love to purchase something! Maybe one of those Twitter marketing books could tell me how to beg for spare change. If every Rockville-based follower stopped by with a nickel I'd be halfway to a latte right now! Where are you assholes? God, but social media is useless. I've now been officially singled out as an Old Timer at the drop-off and pick-up. Mothers are all but sidling up to me all, word on the street is that you've been here before and know a few things about this here special ed jungle. Can I get a preschool recommendation in exchange for a playdate? Who's your occupational therapist? Come on, man, help me out, I'm dying over here. It's funny, but true. I apparently now give off the vibe of someone who knows what they're doing. Maybe I seem less...insane or high-strung or HI HI HI LIKE ME LIKE MEEEEE than I used to, or because I know all the therapists and counselors and even a few of... Read more →


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... Read more →


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... Read more →


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... Read more →


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.... Read more →