The Friendship Jungle

Noah's friendship with the little boy next door continues. Though it's only been two weeks and I'd already have to describe it as "rocky." 

On  the other hand, the confidence boost was almost immediate -- Noah excitedly goes outside in search of Other Kids, and is bitterly disappointed when they don't magically appear. One day a couple of (much older) kids rode by on their bikes and Noah greeted them with boundless, innocent joy: "Are you here to play with me?" They (very kindly) admitted that they were not before pedaling off, leaving Noah behind and his little heart melting all over the sidewalk. 

"They didn't want to play with me," he said quietly. He looked at me with his big brown eyes and I felt my chest clench, but I felt weirdly prepared for this moment. Like I'd been expecting it, ever since Noah marched up and knocked on our neighbor's door. Kids are mean little bitches. Even when they don't mean to be. So I calmly explained (over and over) that those kids were just so much older and were allowed to go different places and probably already had somewhere to go or maybe it was just time for them to go home and eat dinner. Eventually I just suggested he come back inside for a cookie.

(Jason would later ask, as we drove through the neighborhood on our way out for dinner, if a certain group of kids we passed were the kids in question. "Who should I run over?" he asked, only kind of jokingly. Look at me! Being the reasonable, appropriate one! I hereby win at both scraped-up knees and hurt feelings.)

I was less prepared for the next day. 

The little neighbor boy (let's call him Sammy) (who is six) came over after school and knocked on our door. Noah was delighted, and I was too, more than a little bit. Sammy's mother asked if I could keep an eye on him while she picked up her husband from work, so Ezra and I headed outside to play in the general (but non-helicoptering) vicinity. 

The boys were playing so nicely I let Ezra wander a bit, up and down a path that runs behind our house. We bumped into another young family whom I have been stalking for a good year now in pleasant (but so far mostly one-sided) attempts at friendship. We chatted and chased our toddlers around and I finally got a stab of GUILT GUILT GUILT SOMEONE ELSE'S CHILD HAS NOT BEEN IN MY LINE OF SIGHT FOR 10 MINUTES NOW AND THIS IS HOW YOU END UP ON THE NEWS, ASSHOLE.

We headed back and I saw Noah standing by our front door. Sammy was sitting in front of a stone wall on our corner, peering around before hiding completely. Hide and seek! I thought. I wonder if Noah is playing the right way or the Noah Way. 

"What's up, Bud?" I asked him. "Whatcha playing?"

He opened his mouth and a telltale string of utterly indecipherable nonsense fell out. She there no inside play scooter friend tomorrow, or something similar.  A sure sign that he was upset or confused or overwhelmed. 

I sighed, guessing that Sammy's inevitable rejection of his younger, kind of oddball playmate had come, and pulled on my Armor of Being Reasonable and Suppressing the Urge to Give Another Child What-For. 

But when I approached Sammy I realized that he was crying.

And not just crying. CRYING. Tears, bloodshot eyes, snot. He'd been crying for awhile. 

I panicked briefly before remembering that I could, you know, TALK to this kid and possibly get real answers. 

"Noah hurt my feelings," he said. "Noah said he didn't want to play with me. And that he wasn't my friend anymore." 

I opened my mouth and tried to reel in my own string of indecipherable nonsense in the wake of my shock. Here I'd been crouched and ready for Noah's hurt feelings, but was COMPLETELY unprepared to hear that it was my child who had just casually broken the heart of another. 

I called Noah over and tried to get him to look at Sammy and tell me how he thought he was feeling, and if he had said anything that would make him feel that way and Noah seemed entirely baffled but dutifully apologized, with words and sign language. 

"Okay!" Sammy said brightly. He wiped his face and jumped up and they took off down the block on their scooters as if nothing had happened.

Oh. Right. Kids. Resilient little buggers. 

A few minutes later, after eavesdropping a bit, I figured out what had most likely happened: Noah wanted to play inside. WITH Sammy. While he'd managed to correctly convey this invitation once before, he was having trouble today and was resorting to more canned phrases and responses than usual. He didn't want to play outside on scooters anymore but jumbled the message, swapping "you" for "outside." When Sammy got upset, Noah pulled out a response that matched Sammy's mood: "You're not my friend anymore." (He often says this when he's upset, regardless of the context. He's even said it to his toothbrush a couple times.)

Noah tried again, though, and did better the second time. The boys were still playing inside when Sammy's mother came to get him. I figured I better explain what happened in case it later got worse in the retelling. Injuries or Major Tears seemed worthy of a full report.

"Why did Noah say that?" she asked. I caved and gave her the nutshell description of...you know, ALL OF IT. 

"I really don't think he meant it," I said. "He's so happy to have Sammy as a friend. He just has trouble sometimes getting the right words out."

And...well. Guess who else went to speech therapy. And early intervention. And gets occupational therapy for fine motor skills at school. 

I wanted to hug her, but we just smiled at each other while Noah and Sammy hugged their goodbyes instead. 

"I'll play with you next year, okay?" Noah said.

Sammy looked at me and smiled. "I think he means tomorrow. So I'll come back then."

A Special Year

One year ago today, I performed the Heimlich on Noah to save him from choking on a fruit bar, because he liked shoving too much food in his mouth, a common trait of SPD kids. 

One year ago, he ran away from us in public and threw multiple tantrums a day. We were preparing for his first evaluation from the school district. We were arguing with our insurance company's denial of coverage for speech therapy. He couldn't pronounce "green" correctly.  Or ride a bike, or color a picture, or make friends, or do anything that wasn't part of his rigid, inflexible routine. We lost a deposit to a Montessori school that he would not attend, because in just a few weeks he'd have an IEP through our school district and be officially placed in special education. 

Less than a year ago, I received a report from a psychological evaluation that took place at his preschool. It shook me to my core, because my son was slowly, steadily disappearing into himself and his rituals. He was withdrawing from a world that overwhelmed him. I remember putting the papers down, then folding my arms over them, and sobbing. We had to stop it. We had to fix it. 

We enrolled him in an occupational therapy summer camp, which would later lead to placing him in a terrifyingly expensive (at the time, anyway) private preschool. Both of these decisions turned out to be -- just as hundreds of commenters promised -- the very best things we've EVER done for Noah. 

Everything started changing from that point on -- we got a diagnosis, insurance approval, a plan, hope, results, success and a kid who is finally enjoying life as a kid in the world he's in. 

Noah's next IEP meeting is coming up in a few weeks, and we plan to ask that he be placed in the less restrictive immersion preschool classroom next fall -- a class of half special education kids, half typical peers, the next baby step in the path back to mainstream.

But we're also sending him back to the private school in the afternoon. And to the camp this summer. We don't even think about the money anymore. How could we? LOOK AT HIM NOW.

Still, though. It does cost money, so when CafeMom asked if I was interested in taking on another blogging gig, I jumped at it. (CafeMom, as ClubMom, was actually the company that offered me my very very first paid writing job. I'm happy that my newbie bumblings from back then didn't turn them off forever.) So now, in addition to the Advice Smackdown and Bounce Back and Mamapop, I'll be writing a column every Thursday called Isn't That Special, about (shocker!) special needs parenting. I know. I'm tired of listening to myself talk too. 

But seriously. LOOK AT HIM NOW.

Music: Hey, Won't Somebody Come And Play by The Little Ones

Mad Skillz

Social skills are still a struggle for Noah. "Social skills" being probably the most vague and imprecise bucket of Early Intervention nonsense we have come across so far. People hear "social skill problems" and immediately assume that Noah hits or bites or plays roughly or...I don't. Spits and hisses, like he's spent his life locked in a closet. So when those people meet him, all charming and bubbly and eager to please, they wonder what in sam hill we're talking about. "Social skill problems. My ass. That I just farted out of. Loudly. In an elevator. NOW who's got 'SOCIAL SKILL PROBLEMS'?"

So...yeah, it's not exactly something that makes a lot of sense the first time you meet Noah. Especially if you're an adult. It's subtle. It's more of an inability to connect with peers. Other children. (Someone once sent me a link to a blog entry they wrote about dyspraxia being a "social planning disorder" in addition to motor planning and it was absolutely perfect and I cannot for the life of me find the link now.) Noah likes the IDEA of other kids, but not much else. Mostly he just wants to go to their houses and play with their toys. Over here, by himself. You go over there and do something else, preferably something that will allow him to keep 10 feet of personal space at all times. Independent or parallel play, but no cooperative play. No turn-taking, no engagement, blah dee bleep bloop blah go the assessments. Questions like "what is your name?" or "how old are you?" are not things he knows to ask -- hell, getting him to answer those questions is still a crapshoot. He gets anxious and unnerved around groups, easily annoyed by any inadvertent bumping or touching, tantrums when another child wants things done slightly different from him, is apt to wander away mid-conversation and avoid eye contact and generally just seems painfully aware of how painfully awkward the whole thing is. 

But oh, he's definitely improving. The private school, in particular, has been AMAZING at helping us with the more vague big-picture sort stuff like this. (The public school basically classifies social skills as "HITS, IS TROUBLE" or "DOESN'T HIT, THEREFORE FINE.") I've seen the improvements. I've written about the improvements!

Here is another improvement:

There's a slightly older boy who lives next door. I don't really know how old he is -- they're a diplomat family, the mother doesn't speak very much English and/or seems terrifyingly shy. Every morning she takes her son to the main bus stop around the corner where all the kids from the public elementary school get picked up, and most mornings she's just returning as Noah's bus picks him up right at our door before taking him to the exact same school. She wonders what's up with that, I can tell, but she doesn't ask. Her son is probably first or second grade, at least.

Sometimes the boy comes outside and joins Noah on his scooter. He's got a bigger, faster one, but slows down to indulge Noah's attempts to keep up with him. Noah refused to ask his name at first, but instead shrieked "LITTLE BOY! COME BACK HERE LITTLE BOY!" after him until I finally asked him myself.

"Noah talks funny," he said to Jason a few days ago, but he didn't seem too bothered by it.

Yesterday, after school, I was unloading Noah and Ezra from the car and told Noah he could play outside for a bit, since the weather was so nice. "Maybe your  friend will come out and join you," I suggested, gesturing at their front door.

Noah had a better idea. He walked up to their house and knocked on the door. Then he turned back to me, terrified. What had he done? What was he supposed to do now? He looked like he was about to turn and flee when the little boy came to door and opened it.

Noah stood there, completelysilent, while I watched from back on the sidewalk, wondering how much coaching I was supposed to provide. After what felt like hours but was probably seconds, Noah pointed at the boy's scooter parked in their foyer, then back at himself.

"Okay," the little boy said. "Let me ask my mom."

He emerged with his helmet on a few minutes later and they were off. He attempted to teach Noah how to play tag but goodnaturedly let it drop when it was clear Noah didn't understand how to play. They took a break and sat side by side on the curb for awhile, chatting about something I couldn't quite hear. 

Ezra was hungry, so we came inside and I kept poking my head out the door or window, chewing on my fingers and generally not really knowing whether it was okay to let Noah be so...free and unsupervised, just out there on the sidewalk. I started to head back outside when I heard Noah ask the question:

"Do you want to come to my house and play?"

"Okay," the little boy said. "Let me ask my mom."

She arrived a minute or so later, struggling to explain that she needed to go pick up her husband, so actually if he could stay with us for 20 minutes or so, that would be really helpful. I assured her that it was fine.

Fine! ARE YOU KIDDING ME? DOES HE WANT DINNER? PIZZA? I COULD MAKE CUPCAKES. WHATEVER. NO BIG THING, EXCEPT OH MY GOD YOU HAVE NO IDEA.

The boys marched down to the basement and Noah stopped on the stairs and looked back at me. "You keep Ezra up there. Not down here. This is my friend." 

I know, Noah. I know!

Jedi Master

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.

Cocoon

On Saturday morning, I wrapped Noah up in two layers of outerwear, a musty-smelling scarf around my head, some vaguely Christmas-y paper around an awkwardly-shaped birthday present and headed out in the snow -- our first of the year -- to attend a preschooler's birthday party. Also our first of the year.

Save for the occasional laid-back house party, we've politely declined all birthday invitations. I know I wrote about Noah and birthday parties -- my memory is suggesting that I very much watered down just how awful our last attempts were, but I simply cannot bring myself to go hunting up the entries to confirm that. Awful. The helpless shock of seeing your child behaving in a way that suggests he has been set on fire, instead of being asked to come sit on a brightly-colored parachute for a minute. The confusion of not knowing what's wrong, the hurt of knowing that whatever it is, your child lacks the verbal skills to tell you about it, and of course: the searing, shameful embarrassment of knowing that all eyes are on you, the parent who cannot control their child. 

We were, not surprisingly, never a very popular playdate choice at Noah's school last year. Except for one family, one mother, one little boy who befriended Noah and I and understood, or who at least attempted to. Her son now attends the Montessori school that we'd also optimistically chosen for Noah before --thankfully -- coming to our senses and swallowing our pride about his real level of need.

And like more friendships than I'd like to admit, we don't talk as much as we should anymore, or get the boys together as much as we should, and it's all my fault because...well, sometimes it hurts to be around Typical Kids. Like being around pregnant bellies when I was trying (and failing) to conceive.

But. She invited us to his birthday party. It was at one of those paint-your-own-pottery places, so no gym equipment, no circle time or song time or multiple transitions. Just sitting and painting.

And so I waffled and debated and fretted both about potential disaster AND selling Noah short -- it's been so long, he's made such progress -- and...DUH, I already told you that we went to the party. (Nice narrative structure there, self.)

Well. It was a disaster. Beyond a disaster. We lasted 20 minutes before Noah had a complete and utter sensory freakout -- imagine something akin to a panic attack crossed with those times when you are almost overcome with the urge to throw some dinner plates at the nearest wall. The 20 minutes prior to the meltdown weren't really much better -- the children were assigned seats and asked to color until everyone arrived and the painting could begin. Noah scribbled halfheartedly with a blue marker while I tried desperately not to look at everyone else's paper. We were surrounded by classmates from last year -- something that I do not doubt contributed to both of our stress levels. They were drawing things. Letters, cats, family members, trees. A younger sibling -- a girl who was probably Ezra's age when I met her -- drew perfect circles and straight lines while Noah held the marker in his fist and banged it into the paper a few times.

"Draw an L, Noah!" I suggested, though as soon as the words were out of my mouth I regretted them. Why not just come out and say it: Stop making us look bad, kid. 

His agitation grew when he realized he was surrounded by children on both sides, and I stupidly didn't think to move him to an empty chair at the end of the table.. A personalized smock appeared, and I stupidly suggested he wear it. After that, it's a blur. I think he kicked me, kicked the table. Screams so loud the pottery rattled on the shelves. A frantic, red-faced dash to the bathroom. My hands on his shoulders, his face, my voice pleading, then rising, my patience sapping, trying to penetrate the force field of the fit, and finally sitting back helplessly watching my son lie on the floor and sob and beg to go home. He breathed an audible sigh of relief when I told him we could.

We left the bathroom and put on our coats, hats, mittens, the musty scarf. I apologized to my friend, gratefully accepted her kind, reassuring hug...and left without another word or look at any of the other parents. 

***

The craziest thing is this: just a few hours later, we went to a second birthday party. One of the children from the district's special ed program. All afternoon I kept picking up the invitation and staring at the telephone number. I should call. I should cancel. I should just apologize now and spare us all. The party was just at their house, though. The entire PEP class was invited. They'll understand, we reasoned. They'll be...more like us, like Noah.

"And if not, we'll leave," Jason said, as if that had solved just fucking EVERYTHING that morning.

At this party, there were no assigned seats, no smocks, no activities, save for a ribbon-pull pinata that delighted everyone, including Noah. Cupcakes, juice boxes, soda, beer. The children did laps around the house and jostled each other around in the play kitchen and tried to climb into an exersaucer. Noah greeted his classmates with hugs and "I love you's" and was given them in return. When it was time to sing happy birthday, Noah and another little girl both clapped their hands over their ears and howled, and her father and I laughed over how we had to decree NO SINGING at both of their birthdays. "I've never met another kid who does that!" he exclaimed. Everyone wanted to hear about the afternoon program we use, to compare Early Intervention horror stories (we were the winner, with our Early Graduation Of Bullshit and Year Of Mainstream Preschool Terror). "We could switch our sons and no one would ever notice the difference," another mother told me, after watching them play together, referring more to their shared quirks than any physical resemblance. Everyone wanted to plan the class holiday party and rave about our wonderful, lovely teacher.

Noah cried exactly once...when it was time to leave. We'd all overstayed the invitation time by a good 45 minutes. A playdate for the entire class is set for this weekend. 

***

If you asked me what my number-one goal for Noah is, at least in regards to the next couple years, I would have to say: Mainstream. Get him out of special ed, off his special bus, out of the folder filed under "developmentally delayed."

I believe he can do it -- we had the equivalent of an IEP meeting last night at his private school, and they believe he can do it too, adamant that he is not on the Spectrum, that he is a brilliant little sponge who will be able to attend school with minimal accommodations one day -- though I know that it won't necessarily be an easy goal to reach. There will be more freakouts and judgmental looks and therapy bills and insurance rejections and days where I feel like throwing unpainted pottery at the nearest wall. 

So I'm grateful, in the meantime, to have this cocoon, this soft safe space, full of people like us, and kids like him.

Yesterday @ 1 P.M.

So...yeah, OBVIOUSLY it went way better than that. I mean, I knew it would, even while lying in bed at 4:07 A.M., all saucer-eyed and tense, like WHAT THE FUCK WAS THAT ABOUT, because I honestly had no idea I was that worked up over it. This is...what? Evaluation number five or six this year alone? The seventeen-dozenth since this all started over just about two years ago?

Up until last night I hadn't even double-checked the appointment time, so I guess my subconscious decided to SURE SHOW ME how entirely NOT used to this shit I am after all. Triple-check and obsess while you're AWAKE, next time, sweetcakes. Or face our nocturnal wrath. And...imaginary stressful haircut scenarios.

(I have been putting off getting a trim for a few weeks, actually. Maybe I should put a reminder in iCal, just so I don't have to wait for my brain to inform me that my hair looks like ass.)

ANYWAY.

It went well, as they tend to go whenever I am left out in the waiting room rather than brought along to sit there and apparently provoke all kinds of horrible uncooperative behavior. We get the full report tomorrow (TOMORROW. as in THIS CENTURY.) but it definitely sounds like Noah's speech delay has been bumped up out of "severe" and into "moderate"...or possibly even "mild." We are like, the valedictorians of quirk! 

And oh. Yeah. There was one other mother in the waiting room and...she...she totally reads this blog. And it was really nice to have someone to talk to and joke around with and help keep Ezra from disappearing down hallways at rocket speed, but the whole time I was desperately hoping I was just coming across as even slightly normal because secretly I was FREAKING THE FUCK OUT, BECAUSE I CAN SEE THE FUTURE I AM TOTALLY PSYCHIC YOU GUYS.

(Last night I dreamt something about having to protect Ceiba from some kind of insane feral cat, but the worst part was that the whole thing was secretly videotaped and posted to Gawker, like MOMMYBLOGGER IS SO MEAN TO KITTY CATS OMG SCANDAL.)

(In other news, I have decided that Unisom is Not For Me.)

Today @ 1 P.M.

It starts off badly, right in the parking lot. It's crowded, very crowded. I see someone pulling out of a spot on the end and am halfway in before another car appears out of nowhere, honking and yelling. I protest meekly before backing out and taking another spot down the row, only to realize that it's too narrow and I cannot open the doors and get the boys out of their seats.

I stand there, panicking. We are going to be late. Suddenly, three girls appear and offer to help. They know our names and I realize they know us from my blog.

Somehow, we're all inside. It's bigger than I remember -- more like a cavernous warehouse than a waiting room. There are dozens of people milling around rows of chairs and cafeteria tables. I check in with the front desk (Noah Storch, speech evaluation, 1 P.M.) and we're instructed to wait and listen for our names.

We wait. And we wait. There are books and toys but neither of the boys wants anything to do with any of them. Names are being announced over an echo-y loudspeaker that I can't understand. Noah has climbed up a bookshelf and when I leap to retrieve him I notice he's wearing a Pull-Up. Why is he wearing a Pull-Up? He doesn't wear Pull-Ups. I look at his face and hair and...it's like he's morphed back into the two-year-old version of himself. And what's that awful sme...oh, GOD.

A woman appears, clearly annoyed. They've been calling our name for 20 minutes, why didn't we respond? I stammer an explanation and ask for five minutes and a changing table and am informed that if we forfeit this time slot we go to the back of the line. She questions the state of Noah's potty-training and I stammer again -- no, seriously, I'm so confused, he's totally trained, I don't know what's going on today -- she simply scribbles something on a clipboard and storms off.

Our turn comes up again and we're directed to a random set of chairs in the middle of the warehouse, and after I sit down I realize I have left the baby behind. I frantically look over and see that the three blog readers have appeared again. They are holding him, and nod to me reassuringly. It's okay, it's all okay.

I don't remember anything about the actual evaluation. It was too loud and I couldn't hear anything. We're waiting again. The toy area has been changed into some kind of stage, like for a puppet show. Ryan Seacrest hands me some sheet music and orders me to sing. I stand there and face a bored-looking audience, all uncomfortably perched on tiny preschooler-sized plastic chairs. Clipboard Lady comes midway through the song -- a showtune from Little Shop of Horrors, though not one I've ever heard before -- and tells me that the evaluation results indicate that I need a haircut. Luckily, they have someone on staff who can handle it.

I'm whisked out of the huge waiting area and through a series of cluttered rooms -- they look nothing like a school, but more like a grandmother's house, full of not-particularly attractive knickknacks. A woman surveys my hair and shows me some photos of other bloggers. Their hairstyles are all very short and I tell her that I don't look good with short hair. She tries to insist but I finally hold my ground. NO SHORT HAIR. I MEAN IT. She sighs and rolls her eyes at me, but wraps a brightly-colored knitted afghan around my neck and begins cutting, assisted by a cranky old man who looks like Noah's morning school bus driver. She makes about four snips with her scissors and my hair looks absolutely amazing. Then she asks for $750, plus another thousand for the evaluation. I gasp and tell her I don't have that much, and she removes the afghan and I'm in my underwear and Clipboard Lady asks about the whereabouts of my children and I realize I don't even know the names of the three blog readers but suddenly they are there too, without Noah or Ezra, and they shrug and say they can't help me anymore and I start crying and then I wake up and it was four in the morning and I've been awake ever since.

***

Noah has yet another evaluation today. For speech, at The Preschool. Starts at 1 P.M. I think it's going to go great!

Beyond It

It occurred to me that I never wrote about our orientation night at Noah's summer camp from a couple weeks ago. Perhaps I initially decided that it was a boring topic that no one cared about. Perhaps I was more than likely right. But camp starts on Monday and I JUST finished filling out all the case history forms and permission slips and assorted release forms this morning, so needless to say, I've got Occupational Therapy Camp on the brain in a big way.

The camp is nice. The camp will be nice. There are three motor skills gyms, a 1:1 ratio between therapists and children and two field trips to a therapeutic pony farm. Every Friday is Water Day, with inflatable pools and sprinkler toys. Noah will have a blast, and hopefully we'll see some real steps forward. Jason was thrilled and pronounced the expense officially more than worth it -- a fucking bargain, were his exact words, I think. I agree. 

Of course, me being the big fat stupid pessimist who wore the wrong shoes and had a headache that was totally probably brain cancer had to go and get overly sensitive and philosophical as we wandered the halls of the facility -- a facility that is primarily used as a special needs elementary and high school for children with high-functioning autism and other speech/motor/sensory problems. I wondered if these students had been through Early Intervention. If they'd gone to special summer camps and exhausted the district's offerings. I wondered if they had, and if this was still the result, costly non-mainstream tuition, worries about college and afterwards, a label that stuck. Our goal had once been "regular" preschool; now we're pinning our hopes on kindergarten. I wondered if these families had similar goals once, and still ended up here.

It looked like any school, complete with lockers and bulletin boards and posters documenting the students' activities and achievements. The photos on these posters were mostly boys, much older than Noah, and...I guess because I KNEW, I couldn't just look at the photos. I saw it. You know? I saw the eyes looking at the camera but not quite focusing. The bodies standing next to each other but without any touching, without any arms slung around each other's shoulders, without the natural ease that comes from knowing the boundaries of your own body and how it relates to the person next to you. I saw slumped shoulders, defensive posture, splayed fingers, low muscle tone, protruding tongues, an endless checklist of stuff I've read about and occasionally witnessed myself.

I was deeply ashamed to realize that I saw all that stuff before I saw the boys, the children, the other people's precious chubby-cheeked babies.

Jason chided me the other day for interpreting almost everything Noah does these days through the filter of his sensory problems. He couldn't just be scared of the flying house in Up. He couldn't just be worried that all the balloons would pop and the house would crash. No, I fretted over his rigid thinking, his terror over the slightest change in routine and things Not Being Exactly Just So All The Time, and the force of his reaction and the volume of his shrieks and on and on it went and I went until Jason suggested that I take a break from all that reading and researching and compulsion to know more! and fix more! and advocate and educate and on and on and etc!

At our IEP meeting, when Jason and I started talking about all the different tactics we've tried to help strengthen Noah's skills in certain areas, the occupational therapist suggested that we could maaaaybe start relaxing now. We could let the experts handle things and get back to the business of simply enjoying our child. I just stifled a snort because LEAVE SHIT TO THE EXPERTS? AS IF THERE ARE ANY EXPERTS. HA HA. EXPERTS. THAT'S A GOOD ONE. The importance of being part of your child's therapy is undeniable -- YOU know your child best, YOU are there day in and day out, YOU have more of an impact than 45 minutes of therapy a week. YOU. YOU YOUYOUYOU. Don't forget that, don't slack off. And don't fuck it up.

This is..a tremendous amount of pressure, particularly when you're talking about your firstborn, when you feel like such a goddamn ROOKIE about even the simplest thing. Noah has completely shattered my expectations of what motherhood would be like. He has both humbled and enriched me. He has given me a greater sense of purpose but also the occasional feeling of drowning in my own inadequacy.

(And a tendency towards overwrought metaphor, apparently. Yeesh.)

One of the things I am guilty of is keeping a List. It's in my head, though I've occasionally rattled off a few choice items to Jason and my mom and in imaginary blog postings that I compose while brushing my teeth, before I have coffee and think better of it. The List is the answer to a question that no one has ever asked me.

Do you think Ezra is...you know...the same?

The List is evidence that no, I don't think so. From his early back-and-forth conversational coos and strong preference for me, to his fascination with Baby Faces books and joyful interest in other people. He babbled at people instead of inanimate objects. Ezra loved the feel of grass beneath his legs and between his fingers -- Noah simply raised his legs up away from it until he toppled over. Ezra eats anything and everything -- Noah's textural issues were already becoming apparent by this age. Ezra does not appear to be as sensitive to music and sounds, but does complain when his diaper is wet or when he is cold. Ezra waves and claps and mimics certain noises and facial expressions -- the very first official warning flags we saw at Noah's 12-month appointment when he couldn't do any of that. The List is long, very precise, with dozens of little moments that I've filed away for reassurance later.

But again, Jason has (rightly) pointed out, it's not fair to suddenly look back and sweep every memory of Noah's babyhood -- every personality trait and preference for different books, everything that we once celebrated as being part of our "exceptional" baby -- under the rug of SID/SPD and the looming Spectrum. It's not very fair to Ezra, either, to observe him strictly through that lens, hovering over him with a checklist in hand, breathing a sigh of relief every time he acts "normal" or "typical," instead of just viewing the differences as just that: Two. Freaking. Different. Children. My. God.

It was a bad night, that orientation night, because I realized that more and more, I only saw it. I was losing sight of my own baby, my child, my amazingly smart, sweet Noah, and letting his quirks and issues and my worries and fears for his future cloud over the son.

***

This week there was no school, no camp, no playdates or birthday parties or anything we had to do. We rarely got dressed, Noah watched TV whenever he asked nicely, dragged as many toys into the living room as he wanted, and ate macaroni & cheese for lunch pretty much every day. If he asked for white milk in a red cup and the red cup was dirty, I rinsed out the red cup rather than engage him in an argument about the blue cup. We cuddled and tickled and roughhoused. We made a big happy birthday banner for Jason using fingerpaints. He asked for a napkin after every other paint streak, and I gave him as many napkins as he wanted. When we were all done, we hung it on the front door. 

It remains pretty much the only thing we accomplished all week. And I feel pretty good about that. Camp starts on Monday; this week was a week to enjoy being with my boys, my beautifully different, equally essential boys, a brief vacation from it.

 

 

The Missing N

Today was the last day of preschool. A stunningly non-momentous occasion, made even more so by the facts that the end-of-year party already happened yesterday, and that our classroom's little fake diplomas had mysteriously gone missing. We were presented with a laminated piece of construction paper with a poem on it instead. I'm sitting here staring at the thing, thinking...well, I guess I'm supposed to keep this, because they LAMINATED it, but...eh, I guess I'll just put it up on the fridge, or something. Or in this nice pile of bills.

The year ended with a whimper and a sensory bang, as Noah whined all the way to school that he didn't waaaaant to go to school for the paaaaarrrrty, he waaaaaanteeeed to goooooo toooo Bennnnnjaaaamiiiinnnn's houuuuuuuuuuuuusssssssse, and we were late and I was annoyed and had left my coffee on the kitchen counter and realized that the baby had horked blueberries onto my boob and was busy trying to adjust the sling to cover the stain when Noah took one look at the brightly-decorated classroom, with paper lanterns and inflatable beach toys hanging from the ceiling, and decided that whining was not enough to express his displeasure and launched into full-on screaming. The fake grass festooned around the doorway had the audacity to TOUCH HIM when I took his hand and tried to encourage him to go in, and he collapsed on the floor and howled while everybody in the room -- teachers and kids and parents and siblings -- turned around to stare at us just in time to watch him kick over a row of tiny adorable chairs.

"I. WANT. TO. GO. HOME." Noah wailed.

So I shrugged, made eye contact with my one friend in the room -- the one who had spent the entire day before decorating the room and icing shark and beach-themed cupcakes -- and mouthed an apology before walking back out.

"Okay. Let's go home." I told him. "Whatever you want. I'm done."

We made it halfway down the school's hallway before Noah started to mayyyyybe reconsider his stance on the party. He looked absolutely miserable -- he didn't like that different room, with all the extra people and the things and the loudness...but. There were cupcakes.

The cupcakes won out, and we returned.

I am always simultaneously encouraged and heartbroken to see firsthand just how much Noah struggles in situations like these. He TRIES! He tries so HARD! I watch him attempt to talk to a classmate and...his words just fail him. The words sort of...fall out of his mouth in a jumble instead of an ordered sentence. ("Hey what you doing down there with the carpet truck tunnel?" instead of something like "Hey, are you making a tunnel for the truck on the carpet?") His peer will generally sort of regard him in confusion for a bit before simply turning away because he's not making any sense to her. And then Noah, apparently used this kind of response, will either try again using something he's memorized from the TV (which makes sense, because at least on TV that line seemed to work in a give-and-take conversation), or simply flit off to a corner to talk to himself, or line up some toys in rainbow order, turning his back on the rest of the world for awhile.

And then he gets up and tries again. And again and again and again.

***

Today was anti-climatic. Half the class was already off and gone on summer vacations, stuff was rapidly disappearing off the walls and bulletin boards, and I realized I'd neglected to even get a card for Noah's teachers, much less a gift. His teacher hugged me anyway and told me to patient, to fight, that while it might seem dark and scary and sad right now, we'd get there. Someday, we'd get there.

I collected a thick pile of art projects and photos from his cubby and we left for the very last time. For old times sake, I felt just as nauseous and anxious as I have every day since...oh, December, since his teacher threatened to expel him.

***

I don't usually make a habit of reading my archives -- I regard them for the most part as testaments to what a moron I once was, though the un-moroning of Amy is still a work in progress -- but the other day I happened across of the first entries I wrote about preschool. And I REALLY couldn't read them. My hope and optimism are so fresh and unwounded and downright dripping with sugary sweet naivete. This was going to be okay! This was going to be more than okay! I'm going to just go ahead and stop worrying about anything because we're SO TOTALLY OKAY!

Reading them is like watching a teenage girl in the grips of puppy love throttle towards the inevitable heartbreak while doodling little hearts all over her angst-y mix tapes.

***

When I got home I started sorting through the pile of art projects -- the first real bounty I've seen in months, since our last progress report noted that "Art is no longer one of Noah's choices." There was a baggie full of small squares featuring letters of the alphabet. I sat on the floor and lined them up.

The kids had done one square a week, as they worked through each letter. Our collection is missing N, and then stops all together at S, marking the point when Noah either stopped participating all together or when the teachers decided to stop fooling us and making squares for him.

I tried to find any evidence of Noah's actual handywork -- I'm pretty sure he did the E, because the three googly eyeballs are lined up to perfectly resemble a traffic light: red, yellow and green. I know he didn't do the G because it's got another kid's initials on it. Several of them give me a clear mental picture of his teacher trying hard, cajoling him, bribing him, pleading with him to just put a prepasted and precut-out figure SOMEWHERE on the paper, look, here, I did part of it for you, before Noah finally maybe obliged and placed a letter halfway on the paper before running off to the corner to line up more toys.

Basically, just like we do at home, over everything, every day of our lives.

Most of 'em, though? Noah totally had nothing to do with. Good thing they're not laminated.

***
Tonight we're going to a parents' orientation thing at the OT/sensory integration summer camp Noah will start in a couple weeks.

(By the way, does anybody else get as annoyed by the "no children allowed" nature of these things as I do? Hi, I've just handed over half of the contents of my savings account to you, could you maybe think about bringing in some college interns for the night to watch the kids for an hour so I don't have to pay a babysitter with the change I found in my couch cushions?)

I have rearranged my entire life to accomodate taking Noah to this camp, my mornings will be spent camped at a Starbucks or wandering around Not Buying Things At Target and hopefully keeping Ezra somehow entertained and adequately mothered while waiting to pick Noah up -- since the traffic won't allow for driving home and back in time. I have filled out all the paperwork, the case histories, the my child does this never/sometimes/always questionnaires; I have collected the previous evaluations and assessments and the triplicate copies of our IEP. All so we can start over, try again.

I am hopeful. I am optimistic. It is going to be okay.

It's going to be more than okay.

Evaluation Nation

Where do I begin?

On the one hand, I'm glad I never got around to writing that entry about all the fabulous leaps and bounds we've made with Noah over the past couple weeks -- at least not the version I had in mind, which was puff full of Confidence! We've Turned a Corner, Everything Is Fine Now! We're Totally Going To Rock This Evaluation Wheeeeeee!

(I just love setting myself up to look like a complete jackass on the Internet. I really do.)

On the other hand, I'm glad I at least mentioned it, because otherwise you'd all probably pelt me with your liquor bottles when I tell you Noah's results:

Motor: Failed. Spectacularly.

Vison: Passed. Non-surprisingly.

Hearing: Abstained. With EXTREME PREJUDICE. (Though his tympanogram looked fine.)

Cognitive/Educational Concepts: Passed, sort of. It's complicated. We'll say: Passed. With EXTREME ASTERISKS.

Speech:

Ha ha ha ha. Wait. No. Sit down.

Speech: Passed. Spectacularly.

The speech therapist praised his articulation (ha ha ha), his ability to label objects and actions and answer questions, his spontaneous speech (which mostly consisted of elaborate protestations and declarations of woe, misery and the unfairness of life as he knows it) and finally admitted that she didn't understand why any concern was still being raised about his speech. He's FINE.

And I was all, "Yeah...I've been meaning to blog about that."

Noah's speech has EXPLODED over the last couple weeks. We have CONVERSATIONS with him. He tells jokes, he makes up stories, he answers your questions with honest-to-God actual answers instead of context-less scraps of dialogue from TV or books.

Last week, while we were away, he told me he was sad, that he wanted to go home, that he missed Daddy. When we went away a few months ago, he told me he was sad, but when I asked why he said something about 15 missing puppies and left it at that.

I don't know whether the leap coincided simply with inching closer to four years old, with reducing his preschool attendance, or our discovery that hey! You know how he really, really, really likes music? You think it would be nice if we played more music for him? How about I put my iPod in his room with a playlist of his favorite classical music and the Vince Guaraldi Trio for him to fall asleep and wake up to, or to go "chill out" to in lieu of endless "time outs?" Huh, I dunno, does he seem a little more centered and calmer to you, like his teacher maybe mentioned a few months ago, when she started playing background music during the day?

No, no. Hold your applause. We are not parental geniuses, we're just really, really slow on the uptake.

ANYWAY. The speech ruling did not come as a surprise, though it was still a huge, HUGE fucking relief to hear it.

It was our one small relief in an otherwise hellacious morning, however. You know it's bad when OTHER PARENTS in the screening clinic are giving YOU the "I'm glad that's not MY kid" looks.

I knew this situation was not going to be ideal. I knew it was going to trigger a lot of Noah's worst behaviors. I knew he wasn't going to move from station to stations easily or be interested in the assessment tools or willingly allow them to put headphones on him to test his hearing and I knew that was kind of the point.

I wasn't prepared for Noah being the ONLY kid having difficulties. I wasn't prepared to sit and watch three-year-old after three-year-old obediently leave their puzzles to go show the occupational therapist that they could stand on one leg while my kid howled, screamed, kicked and fought. I wasn't prepared to watch him fail so many activities -- can't copy a circle, can't hold scissors, can't shape clay, can't fasten a snap, can't catch a bounced ball, can't stand on one leg -- one right after the other. I wasn't prepared to see how many of his mastered skills fall to pieces in the face of his unease with structure, demands and transitions. I wasn't prepared for my sweet, loving, gentle little man to smack me -- repeatedly -- in front of the child psychologist.

The upshot: those damn sensory issues, man. We were aggressive with speech and it paid off. We allowed ourselves to be rattled and bullied by a terrible occupational therapist and are paying for that now. The OT today was shocked that Early Intervention graduated Noah on the basis of speech alone, when clearly he has significant motor delays. Follow-up recommended, check.

The special education teacher had the MOST success out of everyone when it came to coaxing cooperation from Noah, and even she was unable to fully complete her assessment. Her take: he's smart, very smart, but the level of non-compliance makes it appear that he doesn't know half of what he really knows, and his non-involvement and discomfort at school are causing him to shed skills and resist absorbing new ones. (When he started preschool he could count to 20 and recognize most numbers and letters of the alphabet. Now he can count to 10 and gets numbers and letters mixed up.) Basically, this is a smart kid on track to hating and underperforming in school because *something* else is going unaddressed. Follow-up recommended, check check.

(Whenever I write stuff like this I invariably get comments reminding me that "he's ONLY three!" like I need a refresher course on my kid's age, or like I'm expecting him to be mapping the human genome as opposed to sitting on the stupid blue carpet at preschool. I used to get the same comments when he was "ONLY two!" Does anyone know at what age people stop hassling you for trying to be proactive about your child's developmental and educational issues, or for taking advantage of early childhood programs that EXIST FOR A REASON? When he's ONLY four? Seven? When he's dropped out and knocking over convenience stores at ONLY 16?)

The school psychologist will be observing him at preschool, and we're going back for another (more thorough, less sensory-triggering, hopefully waaaay more enjoyable for Noah) assessment with the OT and special ed teacher at the end of this month. At that point, recommendations for services will be made. Check check, check.

***

Dear Noah,

I'm so sorry. I'm so sorry Daddy and I had to take you that place this morning, that place with all the cool toys that they only let you play with for a few minutes before whisking you away time and again to go play with less cool toys. I'm sorry that lady tried to put the beeping thing on your head. I'm sorry that other boy grabbed the elephant out of your hand but we made you share with him because we were too busy filling out forms to realize that he was the one who wasn't sharing. I'm sorry the little things are so hard for you. I'm sorry that I just don't understand sometimes.

I'm so proud of you. I'm so proud of you and your smart, wonderful, mysterious brain. I'm so proud of your good strong eyes that never miss a thing. I'm so proud of how far you've come and how well you talk now. I'm so proud of what a happy, confident boy you are, in spite of everything else.

I love you, Noah. I love hearing everything you have to say. I love your voice, your smile, the way I hear you humming along to the music in your room. I love how you manage to thoroughly charm people, even when you're making their job a little harder. I love how you always give me another chance to be a better Mommy, a more patient, fun and understanding Mommy, and how a rotten morning can still lead to a wonderfully sunny afternoon.

You're too amazing for this world, Noah. And that's our problem, not yours. Don't ever forget that.

Love,
Mommy