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.)
On Thursday, I took Ezra to a belated Valentine's Day party at Noah's school. He sat at one of the little tables, clearly impressed with himself, hanging out with the big kids. He ate a plateful of cantaloupe chunks with a fork. When he was done, he carefully placed the fork on the plate and carefully toddled over to the classroom's play kitchen. He then placed his dishes in the little sink and fiddled with the faucet for a bit before going back to his seat.
I couldn't believe it. I pointed and jabbed in his direction just in case anybody else was watching. No one was, though I insisted on telling everybody about it anyway. Who taught him that? I didn't teach him that. Who is this kid, this mimic? What different species of toddler did I produce this time? Wow.
***
On Saturday, we took Noah ice skating. We bribed him, of course: If he tried ice skating for awhile we'd go to the toy store and let him pick out anything he wanted. Jason laced up his skates -- my heart clenched up in preparation for a Big Fight about New Things On His Feet, but he was perfectly calm -- and took him onto the ice while Ezra and I hung on the bleachers. I aimed the video camera at them, zooming in on the tiny skates on his feet, ON HIS FEET, WHERE HE LET US PUT THEM, and away from his shrieking, terrified little face.
It was Jason's turn to be the Patient Ocean this time, first picking him up, then moving him to the wall, somehow distracting him from the dozens of other unsteady little skaters wiping out all over the rink. By the time they came back around to where Ezra and I waited, Noah was smiling, cautiously plunking across the ice while holding onto Jason's hands for dear life. "OH WOW, NOAH," I shouted over the din of the crowded rink.
***
Ezra, meanwhile, found a slightly elevated, slightly slippery metal bleacher that he was determined to walk across. He stepped up and toddled for a bit before his foot slid off and he went down...while I dove after him to protect him from whatever terrible injury a four-inch stumble off a bleacher seat could inflict. And he would get back up, and try again. Soon I stopped helping him up or offering my hand. He wanted to do it by himself anyway. When he finally made it all the way down to the end without falling, he looked back at me and beamed. "OH WOW, ZAH," I shouted again, and clapped for him.
***
Later, at the toy store, Noah picked out a Build-a-Road set. Jason and I were so impressed with the ice skating we likely could have been talked into the expensive Playmobil set he's already requested for next Christmas, but he was adamant. Road. He wanted the Road.
Ezra took advantage of a slight miscommunication between Jason and I and attempted to walk out of the store while we weren't looking. A salesclerk brought him (and the personalized "Brooke" mug that he'd tried to abscond with) back to me, more than slightly annoyed at our carelessness. "Is this yours?" she asked. I sheepishly said he was and pretended to be all kinds of shocked at my fearless, daredevil child.
***
Later, at home, he evaded us again.
***
Noah and I assembled his new road and bridge, and when we were done, I turned on one of the battery-powered cars and set it loose on the track. Noah screamed. He howled. He grabbed the car and switched it off. After he calmed down, I asked him why he didn't like it. The noise, he said. The noise was too gray.
I looked at Jason, like, OH, WOW. DID YOU JUST HEAR THAT? He nodded. We know about the blue songs, the green songs, the red and yellow
and purple songs. But we've never heard him describe anything as gray
before.
***
That night, Ezra just happened to walk into the room right when the
skier on the TV fell down. He pointed at the screen and burst into
tears. He shook his head, nonononono, and covered his eyes. I picked
him up and he buried his head in my shoulder. Nononononono, he said,
out loud this time.
***
On Sunday, Jason made the questionable decision to put on our DVD of Star Trek: The New Lens-Flarish One Without a Semicolon & Subtitle Which Just Feels Kind of Wrong while Noah was in the room. I clucked and chided but couldn't find the remote. Noah positioned himself on the arm of the couch, a look of increasing curiosity on his face while everything on the TV started exploding and zooming and shwoooom vroooom bang blasting.
He stayed there, frozen, throughout the entire opening scene. His eyes were like saucers, but he wasn't scared. He was FASCINATED. He was clearly watching the GREATEST THING EVER, this space opera explode-y movie, this crazy rocket-airplane-boom-thing.
Right as the movie title and Star Trek logo revealed themselves on the screen, his jaw dropped, he leaned forward and...gasped. "Oh. Wow." he whispered. "Oh. Wow."
***
On the first day of our vacation, I took Noah to the beach. Just us. Jason was putting out one last work fire. Ezra was...well, he was eating, having already figured out that 1) all the food here was delicious, and 2) he could get into the kitchen via an always-open back door, and that there was ALWAYS someone in there cooking something, and they were ALWAYS happy to give him a taste, like an over-eager puppy begging for scraps.
So Noah and I went to the beach. I might as well have taken him to the dentist, because he did not want to go to the beach, because of the ocean. He did not want to go near the ocean. He did not want to look at the ocean or hear the ocean. NO OCEAN. He stood as far back on the sand as he possibly could, practically climbing up a wall of rocks in his bare feet, adamant about the NO OCEAN part.
The ocean in Jamaica is not like the ocean here, which knocked Noah over two summers ago and he has refused to go near since. (He holds a mean grudge, I've learned.) It's calm, shallow. There's no undertow and the breakers barely come above your knees. But he didn't care. NO OCEAN. I went in the water without him. I waved and cajoled and explained. I tried to talk him into sticking just a toe in, or to just come a little closer where we could build a sandcastle.
NO OCEAN. He said he wanted to go back to the house.
And I felt that familiar feeling. I was frustrated and annoyed, even though technically I understood. Technically. But still. COME ON. It was like the end of every birthday party or disastrous outing, the miserable ultimate conclusion of something that was supposed to be fun. I felt that tired old instinct to throw up my hands and say FINE. WHATEVER. WE'LL LEAVE. To give up.
Most of the time at home, I admit: I just give up.
I sat down next to Noah and tried to think of what else I could say. He was throwing sand, something we're always scolding him about at the crowded Maryland beaches, where there's wind and other people to annoy. He looked at me, waiting for the rebuke. Instead, I picked up a clump of sand and hurled at the water's edge.
"YOU DON'T SCARE ME, WATER." I shouted.
Noah looked at me like I'd lost my mind. But he smiled. I did it again.
"YOU DON'T SCARE ME, WATER."
Another smile, this time with dimple. He picked up some sand and threw it at the ocean, repeating my challenge.
We did this for awhile. Then I crept closer and stomped on a wave as it lapped up the beach. "YOU DON'T SCARE ME, WATER." I kicked at it, sending a spray upward. Noah laughed.
And he came over and kicked the next wave. "YOU DON'T SCARE ME EITHER, WATER," he shouted.
After awhile, I picked him up and took the plunge. We waded in. He clung to my neck and howled. The water touched his feet and he screamed.
I smacked at the water, making another huge splash. "YOU DON'T SCARE ME, WATER."
Noah raised his head from where he'd buried it in my shoulder and watched me splash again. I walked in a little deeper and he hesitantly reached his hand out to hit the water's surface. It splashed back over both of us...and he laughed.
"YOU DON'T SCARE ME, WATER."
And from that moment on, it didn't.
Before the snow, before we lost power, Noah announced that he wanted to draw some pictures.
This...was news to me, as Noah does not particularly like to draw. It frustrates him. His fine-motor delays clash with his perfectionist nature. He favors his left hand but is more skilled with his right, he has difficulty getting all of his fingers to do what he wants, he sees Pixar in his head but scribbles on the paper, and within minutes he's pushing the crayon at me, asking me to please recreate the Paradise Falls tableau from Up, complete with the House, Balloons, Carl, Russell, The Snipe, The Mean Dogs and Also Russell's Lost GPS Unit Right Over There, NO, NOT THERE. THERE. All of which are also way beyond my own limited skills with an unsharpened Crayola, but whatever. They please him more than his own creations, apparently.
So anyway, this request came out of the blue, as if he'd randomly asked for a bowl of Brussels sprouts. But we quickly supplied the crayons and paper and he got to work.
After he was done, he asked for a toy airplane.
This is the airplane outside our house.
This is the house in Jamaica. It is smaller than our house.
This is the plane flying to Jamaica. The red parts are trees. There were more trees in Jamaica than outside our house, you see.
And there were, in fact, trees with very red bark in Jamaica, which delighted him. Soon after we arrived, he declared Jamaica to be Oz. The path down to the beach was the Yellow Brick Road; the wall of tropical greenery around the pool was the Emerald City. He stood on the steps and conversed with an imaginary doorman about the broken bell; he stood by a tree stump in the backyard asking for his oil can; he was incapable of going indoors without attempting to whip everyone into a frenzy about "IT'S A TWISTER! IT'S A TWISTER!"
At the airport, on the way home, he skipped down a stationary moving sidewalk and sang every word of "We're Off To See The Wizard" at the top of his lungs. Any irritation our fellow travelers had about the mechanical problem vanished about halfway through the song, as they all smiled and laughed as he unselfconsciously butchered the phrasing of "a wiz of a wiz if ever a wiz there was."
His hands might not be able to keep up with everything going on in his head just yet, but you know, I'm not too worried.
First, though: You know you're in for an interesting conversation with your child's speech pathologist when she starts out by saying, "Yeah. So this might sound weird, but the other day I was at Babble.com and..."
Yesterday was a mini-parental-update day at Noah's private school. I don't know what else to call it. I stick around for an extra half hour after school and meet with all of the various teachers and therapists (last count we were up to a baker's goddamn dozen, I think) and discuss Noah's progress at school and at home. But we don't sit down for it. And no one takes notes. So it doesn't feel like a real thing. I completely forgot about yesterday's and didn't even take my coat off until the third therapist came over to talk, which is when it finally dawned on me that oh! Right! That's today. The mini-thing. Okay.
Noah's progress is, in a word, spectacular. A little over three months into the program (it's the DIR/Floortime model, for the special ed geeks out there) and they're all thrilled at the improvements they've already seen. They want to throw everything they've got at him -- listening therapy, music therapy, more speech -- because he responds so well, because he's *right there* and *so close* and it's *allsogreat.* This time last year we were still reeling in the wake of his teacher's not-very-veiled threats of expulsion. This year, everyone loves him. He's a sponge, a positive spirit. He is loving, he is kind, he is so very bright.
I've been carefully and cautiously celebrating the little things: fingerpainting, riding a bike, Halloween costumes, the loop, the very first time he ever looked at me and asked "why?" (last week. LAST WEEK.), the very first time he zipped up his winter coat all by himself (today. TODAY.). And yet I still feel like I missed something, particularly in this past month. I can count on one hand the number of real, honest-to-God kill-me level of fits...yet can't put a finger on exactly when the good days started to outnumber the bad, and at such an uneven ratio.
He digs around in his backpack after school, eager to show off his latest project: N O A H spells Noah, Mommy.
He brings me elaborate Lego creations that no longer resemble the ones he once saw on the box: Look what I made, Mommy.
He plays more like a kid than a ruthless engineer, the last stand between order and chaos in case someone puts a blue block next to a yellow block instead of the RED BLOCK RED BLOCK. There is imagination, purpose, even the occasional good guy and bad guy. I am the Mommy Airplane with a broken wing, he is the Baby Airplane who calls the Compliceman to come and bring me a Band-Aid. A weirdly-shaped office building with an ugly radio antenna on the roof becomes mysterious and magical: Look at that pyramid, Mommy! There are mummies inside that pyramid, Mommy.
He tells me about his friends, his teachers, what he did that day. What they had for snack and who got in trouble on the bus. He tells me about the blue songs and the red songs and how the Christmas tree is "spicy" and that he can't eat a certain food because it's too much like "the ocean" and that shade of orange is too "rough" and every day we get a clearer picture of the nonstop sensory assault he faces and what the world looks and sounds and tastes and feels like for him: This song is yellow, but also kind of green, Mommy.
When he gets overwhelmed and overstimulated, he no longer screams or lashes out or kicks. He gives his body a good head-to-toe wiggle instead and starts everything over. Sure, it looks a little strange, but four-year-olds are a little strange, and it's a pretty effective reset button -- and one that he seemingly came up with on his own, his very first self-discovered coping mechanism: I shaking the itch out, Mommy.
Everyday he is more "in" than "out," his teachers say. Everyday the other children in the class appear more foreign to me, more difficult than my own, and I am acutely aware that of all of them, Noah's chances for mainstreaming are much, much higher than theirs.
He is still delayed, of course. Just because he finally asks "why" questions now doesn't mean we're allowed to ignore how long it took him to get to that point. When you teeter on the barest edge of "pervasive" there is always something else to worry about. He still has a very hard time interacting with children, with dealing with the inevitable, unpredictable aspects of daily life. He cannot use a spoon or a fork, or unbutton his shirt, or hold a crayon correctly, or...or...
He throws his arms around me a hundred times a day: I love you, Mommy.
The Hardest Part, at least from a day-to-day basis, the rigid, inflexible thinking. Things that must be done the way they've been done before. No variation, no deviation, from morning (and the order that breakfast items get set on the table) to night (pants come off first but socks come off last and books must be read while sitting on the right side of the bed RIGHT SIDE RIGHT SIDE!). Routines become rituals and the rituals are a religion.
It's all CONNECTED, of course, we're told. I fret about OCD but am assured that no, it's SPD. Dyspraxia is a motor-planning disorder, but when you add in tactile and auditory hypersensitivity and fine and gross motor delays and receptive and expressive and pragmatic language delays and whatever-the-fuck else we've been diagnosed with at some point or another...well, you've got a child who can't sequence day-to-day problems, or recognize patterns in events and behavior, who can't reason things out to their logical conclusion, who doesn't understand the order of the world and other people and basically exists in a tensed-up state, minutes away from fight-or-flight mode at all times.
Okay, not at all times. But just enough for it to feel that way some days. Some little inconsequential details doesn't go as planned and a mental wire gets tripped. He goes from a happy, smiling chattering little boy to...well, something else. Something I'm getting weary of describing, because I still can't seem to get it right. Please to reference EVERY OTHER POST EVER.
So lately we (with help and guidance from his teachers and therapists) have been working hard on improving Noah's problem-solving and abstract-thinking skills. You do this, in part, by deliberately creating problems and then pretending to be a complete moron.
Problem One: Oh no! You need to get dressed for school and Mommy put on your bathing suit! And now she's trying to put your socks on your hands! And your underwear on your head!
Solution: STUPID MOMMY.
Problem Two: You come downstairs for breakfast but your chair isn't at the table. It's in the middle of the kitchen. When you say you want your chair at the table, Mommy pushes it in the wrong direction.
Solution: STUPID, GOOD-FOR-NOTHING MOMMY.
Problem Three: You get permission to go play in the basement, but the baby gate is closed. Mommy suddenly can't get it open, insists on making wild dramatic gestures about WHATEVER SHALL WE DOOOOO in the general direction of a nearby stepstool. IT'S LIKE WE NEED A TOOL OF SOME KIND. HMMM!
Solution: Ask to watch TV instead, because DAMN, WOMAN.
And...so on and so forth.
It's working, we think. Not all the time, but in past couple weeks we've managed to get him to work and reason through a couple change-ups and "why/how come" questions. A good start, but nothing that seemed to curb the Big Bad Reactions to a triggering event.
One such triggering event is, and has always been, taking the alternate way out of our neighborhood. Our house is on the edge of a street that loops around a couple of other houses, kind of like a cul-de-sac but not. But weird. It's like whoever built this development was legally required to toss up some affordable townhouses among the gigantic single-family homes, but sure as hell wasn't going to put them where anyone would actually have to look at them. Thus, we have two ways out.
Obviously, the preferred exit is shorter, but quite often gets blocked by landscaping trucks, extra cars that simply don't fit into two- or three-car garages, I mean, MY LANDS, and...I don't know. Piano-and-Ming-vase delivery trucks. So it's sometimes a little easier to just go around the other way.
Except that Noah always, ALWAYS loses his shit when we go that way. It's takes all of three seconds to end up exactly where we would end up ANYWAY, but in three seconds he can manage to completely lose it. He screams and kicks and pulls his hair and thrashes around in his seat. We actually moved him out of his booster and back into a harnessed carseat thanks to one of these fits, when he managed to turn his body completely around and slide out of the seat belt and onto the floor.
We tried everything we could think of: we took walks around the block, we took pictures of the road for social stories, we drove that way every day on purpose, we drove that way only when we absolutely had to.
It's a little, silly thing, right? But that's how it is. Even if we can avoid a three-second detour right outside our front door, we may have to take one further down the road because a traffic light is out. We have to turn on a blinking red light instead of green. We have to double-back in the grocery store because we forgot something, order orange juice at Chipotle because they are out of the usual apple, wear this red coat because the blue one is in the wash, and on and on it goes. Explaining, comforting, bargaining, begging, completely unable to get him to understand that it's GOING TO BE OKAY. REALLY.
Yesterday I had to drive around the way of doom, thanks to a tree-removal crew blocking the corner. Noah freaked. We continued on. We got to the highway exit for his afternoon program, driving under the bridge we'd soon circle back onto.
"Are we going on that bridge?" Noah asked.
"Yep," I said. I thought about leaving it at that, but instead plunged onward with the kind of endless chatter I do, never knowing how much of it he absorbs, plus, who else am I going to talk to? Fucking Twitter?
"See, we drive arooooound this ramp and get on the bridge! Wheeeee! It's like a big loop."
"A loop." Noah repeated.
I was about to define the word for him when he continued.
"A loop. Just like the one outside our house."
And that was it. He caught sight of a nearby school bus and changed the topic.
***
I drove around the loop again today, on purpose, just to see.
In the backseat, Noah started to protest. Then he tentatively raised his arms over his head.
"WHEEEE!" he said, and he laughed.
