Yes Ike Can

Despite an early surge of talky-ish mimicry, Ike pretty much clammed up and stopped talking altogether around his first birthday. He'd gesture and babble and all that, but it was a long time before we heard any real words from him again. 

He was testing me, of course. He was waiting for me to say something about it, to put the soupy dash of worry I was stirring around in my brain into words and admit that I was concerned about his lack of speech, especially as he rapidly approached 18 months — the age when Noah was officially put on the wait-and-watch list.

(Noah was 21 months when he was evaluated and found to be speech delayed, though by that age some of his sensory issues were already very pronounced — toe walking, texture and oral motor issues, lining up toys, etc. — and it was pretty clear that was all probably related.)

I refused to play that game, this time. Instead, I did exactly THE OPPOSITE what I've probably advised a hundred dozen advice-seekers who have emailed me over the years with concerns about their own children's development. I ignored the shit out of it. 

To be fair (and to sound slightly LESS monstrous), Ike has two older brothers who are basically talking ALL THE TIME, and quite often talk on his behalf. He uses gestures and sigh language (Noah did not point or wave, either), and does not toe-walk or exhibit any signs of sensory issues. Food textures, grass, clothing, noises — nothing bothers this kid. No delays in fine or gross motor, either. So I told myself his silence was probably just another sign of his laidback personality and general affability. A language explosion was just around the corner, probably. 

SPOILER ALERT: He's fine. He's talking now. I won. This time. 

He's certainly not as advanced a talker as Ezra was — that child started talking at 12 months and was practically speaking in paragraphs by this age, but...wow. It's almost like I gave birth to three entirely different human beings, or something! Imagine that. But Ike is now saying a perfectly acceptable number of words and making decent attempts to learn and use more on a daily basis. 

WORDS HE CAN SAY: Shoes, sit, go, off, open, peekaboo, ball, book,  cat, woof woof, vroom vroom, hi, bye, there it is, what's that, teeth, cheese, juice, hat, Elmo, Ezra, Daddy.

WORDS HE CANNOT SAY: Mommy. Or mama. Or mom. Or wonderful exalted woman who gave birth to me. Whatever.

But his favorite word — oh my goodness, his favorite word in the whole world that he says a million times a day — is quite possibly the most marvelous thing ANY of my children have accomplished. And they've all accomplished some pretty damn marvelous things. 

"YES." 

Yes! The opposite of NO, which he actually does NOT say. He'll shake his head for no if he has to, but 99% of the time he'd rather answer your question with YES. 

IT'SSOADORABLEYOOOGUYZZZ.

And yes, it's hard not to abuse a little bit and ask the same question over and over again, or ask questions that he doesn't understand in the first place, like whether he believes in climate change or whether these jeans make my butt look amazing. "YETH!" he'll respond. "HIGH FIVE!" I'll say. "Good talk."

(And double-yes, I realize that by typing all this out and uploading that video, he will probably wake up from his nap screaming "NOOOO" at the top of his lungs, forever and evermore, amen. But it was real cute while it lasted, I guess.)

First Grade, First Grade

On Friday I took Noah to his school's Open House. We met his new teachers, checked out his classrooms, and I was completely thrilled to see that the school assigned him to the teachers of his dreams, to exactly the kind of teachers Noah has historically responded best to and worked hardest to please.  

(Young, babyfaced-types with gobs of enthusiasm and no fear of Bribery With Snacks.)

(I am about 99% sure his special ed teacher from last year hand-picked them for us.)

Before we left, Noah insisted on visiting every former teacher and classroom. There were big hugs and high fives and marveling over his missing front teeth from his kindergarten teachers (and yes, Hot Teacher Is Still Hot, Only Now More Tan And How Did I Not Notice The Tattoos Oh My God), and then we stopped in to visit his preschool teacher. He had the same teacher for two full years of the Preschool Education Program (PEP), though it already feels like forever ago.

Noah ran in and gave her a hug and they chatted about his summer (BEACH WATERSLIDES BEACH AND 14 MILLION HOURS OF LEGO), and I stood there and stupidly beamed at him, all big and huge and grown-up looking. 

And then I saw the other parents. The other parents with the terrified, nervous faces, because it's not the same for them. A classroom visit is never just an informal, no-big-thing. For them, this visit is loaded with meaning, with promise, and with a million things that could go wrong. What if my child doesn't like it here? What if they have a fit, a tantrum, an "episode?" Are the other kids "the same" as my child? Better? Or worse? Autism? SPD? Downs? Non-verbal? Is that kid still in a diaper? Does anyone notice that my child is still in a diaper? 

And:

What if this teacher can't help? What if this wasn't the right decision?

I knew what they were thinking because I remember thinking all of those things, forever ago. 

I tried to make eye contact and smile at a couple of them, perhaps so I could work in an encouraging comment about how wonderful this teacher is, or how happy we were with the program or something.

But they were all watching Noah. Handsome, bubbly, talkative Noah, proudly announcing his first grader status and talking about waterslides.

He was all the encouragement I could possibly offer to any parent in that room. Look at him. Listen to him. You'll get here too. It's scary and overwhelming right now but you can do this. Keep swimming. Keep fighting. You'll get here too.

He's a first grader now. Officially.

Bring it on. 

Mr. Fixit

We have an IEP meeting today, the first of two IEP meetings scheduled over the next few months. For this year is Noah's re-evaluation year, the year he's due for...wait for it, oh, you'll never guess...a re-evaluation of his strengths and weaknesses and needs and services, up to an including the Big Label that keeps him in special education and keeps my mother-in-law up at night for fear of his PERMANENT RECORD and her continued, unshakable belief that the public school system is legally allowed to tie him to a cheerful Circle Time Chair and forcibly inject Ritalin into his veins. IT HAPPENS. SNOPES IS IN ON IT TOO.

This particular meeting is, quite frankly, going to be bullshit. Not much more than a procedural checkpoint. We will show up and be told about all the different evaluations and testing procedures they plan to do before our next IEP meeting, the big one that will determine his placement for first grade. (Where there are no Circle Time Chairs, but I believe you may be able to request one of those coin-operated massage recliners for your child's Clockwork Orange-style med drip. Fingers crossed!) They will hand us five trees' worth of paper detailing everything we just talked about and our 17th copy of the Parental Rights & Responsibilities handbook that we cannot turn down because they found a typo on page 47 of the last version, thank you and we'll see you again in a couple months, time for the next family, moving on, thanks. 

***

At almost half past six years old, Noah has no real trace of a speech delay, the thing that started All Of This. He never shuts up, actually. Sometimes his grammar is a tad mixed up and full of extra words that buy him precious processing seconds, and he still adorably pronounces V as B. (As in "This lebel of Plants Bersus Zombies is really hard.") But other than that, he's your typical chatty exuberant omg inside voice, Noah kid. Bonus: he's learned all kinds of delightful words from his classmates, or at least he thinks he has. 

"Damage!" he says, deviously scanning my face for a reaction. "Beenis slug! Poople tale!"

His brain seems to be running a constant loop of things he's seen or heard -- usually TV or movies which he memorizes like a human tape recorder -- and he has a hard time turning off the recall or understanding that not everybody else in the room has any idea what he's talking about when he randomly decides to talk about how the bad bird was up on the roof but then the thing fell down and that was funny, right? Right? Right Mom? Right? 

"What are you talking about?" I usually end up asking, exasperated that I am unable to coax more than five words from him about his day at school but will get several hundred about some bit of an Angry Birds fan video he watched once on YouTube.

The thing is, TV and movies help, too, especially with the bigger social picture and his ongoing issues with rigidity and anxiety. The Diary of a Wimpy Kid movies and books, for example, maybe play to his current obsession with potty talk than I'd like (OMG THE MOTHERFUCKING IRONY), but have completely changed the way he treats his friends, and especially Ezra. "I'm not a mean brother like Rodrick," he says. "I'm a nice brother. I'm a friend brother."

The various iterations of Star Trek -- with different costumes and ship details and characters and hell, even actors -- have been hugely helpful when he's confronted with something being "different" or "not normal." Before that, Star Wars and Harry Potter and The Wizard of Oz taught him how to use his imagination.

And Kung Fu Panda 2, of all things, gave us the phrase "inner peace" as an effective code for "rest your body" or "holy sensory freakout child, please calm dowwwwwwn." 

And the auditory recall seems to work at school, too, despite how easily distracted he is by...well, EVERYTHING. The wiggly leg on his chair. The edge of his shirt sleeves. That other kid who is in time out for saying Something That Sounds A Lot Like "Damage." Anything and everything in the classroom that may have been moved from its usual location. The sound his mouth makes when he blows air out like this or like that.

Despite all the distractions, he's learning. He's reading. He's writing. He's drawing elaborate re-tellings of his favorite movies comic-book style on the wide sheets of paper we set out on his kindergarten-teacher-recommended Writing Station, up to and including the closing credits. His fine motor skills have never been better, and his teacher even declared his handwriting "beautiful," especially for a kid who only really figured out how to hold a crayon properly a year or so ago. 

He says he hates school, which of course bothers me, but I sort of think that's the point: I roll my eyes at "damage" and "fartle fart" and "pooper diaper" but have a hard-to-resist kneejerk reaction to "I hate school." Why? Why do you hate school? What's wrong? What's happening there? Is it your teacher? The other kids? TELL ME SO I CAN FIX IT. I CAN CALL ANOTHER IEP MEETING AND FIX IT.

I should know by now it doesn't exactly work like that. Sure, there are things about Noah that I could cautiously, inelegantly call "fixed" or "resolved." Things that took years of therapy and effort and money. And other things that simply faded away with a little extra time: maturity on his part, understanding and creative thinking on mine. And other, other things that found unlikely, almost sudden solutions: A curved exit ramp, Star Wars, karate or sometimes just actual, real-life magic. 

And of course there are still other things. Big things, subtle things, question-marky-let's-keep-our-eye-on-that things. The IEP helps with some of those things, along with OT and diet and a truckload of patience, so we keep chugging along and showing up and doing everything we possibly can to help, to guide, to aid.

But not to "fix."

Because you can't fix something that isn't broken. And my child is not, and never has been, broken. 

 

The Road To Here

I woke up this morning to discover that a big giant kid crept in and ate Noah up last night.

I was pretty annoyed, so I walked him to the neighborhood bus stop and sent him off to school with a bunch of other big kids. Whatever.

***

The other parents snapped pictures as their kids lined up and boarded the bus. I just stood there. I'd abandoned my camera on our front step because Noah was having a hard morning and me standing around trying to capture the preshus memories of childhood rites of passage was clearly NOT HELPING. He didn't want to get out of bed, he didn't want to get dressed, he didn't want a shirt with too many buttons and he didn't want breakfast and he CERTAINLY didn't want to walk to the bus stop. 

But of course the minute we rounded the corner and he spotted other kids at the bus stop his anxiety melted. He cheerfully climbed on the bus and stopped mid-step to turn around and give me the most picture-perfect first-day-of-school wave in the HISTORY of first-day-of-school waves. 

I waved back. I bit my lip. I turned around and walked home. 

Noah will spend part of his day in the mainstream kindergarten classroom. Mostly the "easy" stuff like homeroom, lunch, art, recess. Close to 30 kids with one teacher. (Who, okay, is a dude. And Ezra's preschool teacher [he starts next week] is a dude. Lots of dudes all of a sudden!) The rest of the day he'll be in a smaller special education class. He'll get one-on-one OT once a week and other support services as-needed for issues related to attention, behavior, anxiety, sensory stuff. It's all good. We're extremely pleased and are hoping for a mostly-smooth year. We're also continuing to take Noah to private services every week to plug the holes in his IEP, because we still aren't that idealistic. Ain't our first rodeo, and all.

I get asked from time to time about the whole blogging-about-Noah thing, and it's a totally fair question. (Provided it's asked in a way that doesn't assume 1) that it's something that has NEVER EVER OCCURRED TO ME TO THINK ABOUT, and 2) that there's only one right answer, and that it is not the one I've come up with.) 

Here's the thing: Yes, I suppose it is possible that Noah's classmates might one day read this blog and learn that he experienced developmental delays. It is possible. Likely? I dunno. I imagine by the time they're of the age where they're Googling each other and allowed to visit random blogs with R-rated langauge unsupervised, Noah will have his own online presence that will supercede this one in the search results, or this blog will be offline or entries will have been removed (I do that, sneakily like, sometimes) and hey, if kids really want to spend hours and hours tracking down an unformatted cache of overwrought ramblings from somebody's boring old MOM on Wayback Machine, well...Noah has my blessing to mock the SHIT out of them right back. 

(I also own the possibility that any of my children might one day look at me and say, "Wow, I really wish you hadn't done that," about blogging or posting pictures or hell, any number of parenting choices we make that might, in hindsight, suck.)

But the fact is, other kids don't need to do all that much to figure out some of the things I've shared here, if they want to. They just need an older sibling with a yearbook, because Noah's name and picture have been in there for the past two years, as part of the district's preschool program. 

And they'll see him leave the classroom every day. That part worried me, as hypocritical as that probably sounds.

I asked the special education teacher about it on Friday: Do the other kids...notice? Do they ask? Do they figure it out? 

No, she assured me. Just about every kid gets "pulled out" at some point during the day or week. There's a large ESOL population and those kids go to their own classroom too. Some kids need handwriting help, or speech therapy for lisps or stutters. Others go to special reading groups -- both remedial and gifted. Some kids see the school pyschologist, some get tutoring, and all of this happens in mysterious "other" rooms than the homerooms, so no one knows why anyone is leaving. When everyone is special...no one is. Huh.

"Mostly, the kids who stay behind think the ones who leave are lucky," she said. 

And really, Noah IS lucky. He has an amazing barrage of services being made available to him, even in an age of crazy district budget cuts and school overcrowding. He has received great services from this school already, in addition to all the private therapy and camps and whatnot. 

And he is lucky because once upon a time, his mother poured her heart out to the Internet when she feared her baby might be speech delayed. And when she found out that he was. And when she first heard of "Sensory Processing Disorder" and "Pervasive Developmental Disorder - Not Otherwise Specified" and Asperger's and dyspraxia and ADHD and any number of acronyms and diagnosis codes that have shown up in paperwork or conversations. 

He is lucky because when I did that, people listened. And they helped. They left comments and emails and sent me book and website recommendations and phone numbers and taught me how to be his advocate and let me cry on their shoulders both virtually and in real life. They taught me how to write social stories and that visual schedules help and have you talked to the miracle workers at The Treatment & Learning Centers? They donated money and a kick in the pants when I was stressed and hesitant about an insanely expensive private school tuition bill. They told me I would never, ever regret spending that money and they were 100% right. They taught me not to be afraid or ashamed, but let me know that it was okay to feel that way sometimes.

You listened. You shared. You taught. You helped.

Thank you.

I don't really feel compelled to share the daily ups and downs of raising a challenging child quite the way I used to, when Noah was little and baffling and I felt so lost and overwhelmed all the time. He's big and still baffling but...we got this. More or less. Some days are better than others, just like always. We're trying some new things and re-introducing some old things that stopped working so well but seem to help again but mostly we just...enjoy being around our boy. Who enjoys going places and doing things except for the places and things that he doesn't. We just have to try to keep it all straight, and then be prepared when he changes the rules on us again. No biggie. 

But, you know. I'll still keep you posted. Don't worry. 

In the meantime, though, one small favor: If your child comes home from school and tells you about how some kids talk funny or can't sit still or can't keep quiet or don't like to be touched and those kids get pulled out of the classroom during math and reading and science and asks you where do those kids go? And why? 

Tell them that gee, you can't say for sure. But those kids sound pretty lucky. 

Apple Store of My Eye

I had to ask what, exactly, a "word retrieval disorder" meant, when we met with the child psychologist to go over the action-packed, 25-page report on Noah's evaluation. I understood most of what was in there -- ADHD, auditory processing, some too-early-to-tell red flags for dyslexia for us to "keep an eye on" -- but the word retrieval bit was a new one. 

Was it like apraxia? I asked.

No, she said. That's an inability to form words. This is more about plucking the right word from your brain soup. Basically having it right there on the tip of your tongue, but unable to remember it, or only coming up with words that are similar in concept, but not quite right. 

For example: saying shovel when you mean hammer, bicycle for motorcycle, or in a unique-to-Noah coping mechanism the psychologist noted, expanding a simple sentence to include a ton of extra, early "filler" words, thus buying himself more time to come up with the more difficult verbs and nouns that would come later. 

That was really fascinating to see, she said. He's already very aware of what's difficult for him, and is coming up with his own accomodations in lot of those areas. That's a very, very good thing. 

***

The suggested school-based accomodations for a word retrieval problem include providing Noah with a "word bank" to choose from during fill-in-the-blank tests, or allow him to write expanded responses instead of counting on him to remember a single specific word, and to use lots of mnemonic devices and categorization exercises to help with his word-memory skills. 

I couldn't help but think that man, we are getting crazy obscure here, with the stuff you can now officially label as a "disorder." I mean, really:

PROBLEMS WITH WORD RETRIEVAL! CAPS LOCK COMPULSION! PUNCTUATION DEFICIT DISORDER! I HAVE ALL OF THESE PLUS WEIRD DOUBLE-JOINTED RING FINGERS. 

***

Last night, after dinner, Jason suggested we all head to the Apple store to check out their selection of educational games, to see if they included some age-appropriate typing or keyboarding skills. (This was another accomodation the psychologist recommended, to teach Noah to type as a less-frustrating alternative to handwriting.) Noah demanded clarification, probably thinking that we wanted to take him to a fruit store, which would have to be one of the WORST IDEAS EVER, unless we were talking bananas. Did the apple store also have bananas? 

No, we told him. The computer store. The one with the Dora games you like to play. 

Oh, okay, he nodded. I like the computer store.

A few minutes later we hadn't left yet, and Noah was getting impatient. 

Are we going to the...

That's as far as he got before his face contorted and the tears started. 

The word! I can't say the word! My voice doesn't remember that word! Naughty voice, why won't you remember!

Then he balled up his fist and started punching himself in the throat. 

Holy shit, I thought. Stop!

Computer, I said, as soothingly as I could. The computer store.

He repeated it and immediately calmed down, taking big deep breaths. I don't like when my voice forgets the words. It makes me angry. 

Of course it does, I said. It's frustrating. Everybody's voice forgets the words sometimes, though. 

We decided to go to the fruit store another time. We went to the playground instead. 

From the Rooftops

The thing, with Noah, is that his victories, however small, are so hard-fought for. And harder won. Little things like preschool, karate class, swim lessons, riding a bike, talking to another child or simply using an idiom or bit of slang correctly are huge for him, and for us to witness. He is playing a constant game of catch up. 

And we are his cheerleaders, celebrating every baby step and breakthrough, screaming from the rooftops. 

And then there's Ezra. 

Things come easily for Ezra. What once was a sigh of guilty relief over his "typicalness" is now a gasp of wonder at all the things he can do already, at his seeming bottomless well of innate talents and abilities. 

He doesn't just talk. HE TALKS. Full sentences. Every word he hears he immediately absorbs and starts to use. He talks about things he sees and thinks and did earlier that day and would like to do tomorrow Nouns, verbs, abstract concepts and feelings and scenarios playfully pulled from his imagination. He asks questions, he wants to know what and why and when and how come, and he ponders your answers with a seriousness in his eyes that looks so out of place right above his chubby baby cheeks. I might not catch every word of it -- his two-year-old tongue is not always up to his much-older-than-that vocabulary -- but I understand more than enough. We have conversations.  

He is social and affectionate. Strong-willed and determined. He will not let fear or failure stand in his way of trying new things. "Too young, too small, too little" mean nothing to him in his furious quest to master all big-kid things. The self-critical, perfectionist streak I admittedly passed on to his older brother seems to have skipped over Ezra completely, replaced with boundless optimism and a refusal to quit trying until he gets something right. 

Not that he even needs to try that hard, that often. He can pedal a bike, kick a ball, hold a crayon, use a spoon, run and jump and climb and balance. He can count to 12 and name all his shapes and remember EVERYTHING after a single viewing, hearing or doing. He's funny and he knows it, irresistably naughty and mischeiveous and he knows a hug and a kiss will melt any and all of my defences. "Thank you you're welcome," he says, after offering me some pretend pasta from his pretend picnic spread.

He is the biggest little person I've ever met in such a compact, cuddly package. 

He followed Noah to karate and watched from the sidelines, once, then rushed in to demostrate a perfectly mimicked forward kick at the target. The teacher's eyes grew wide. "Wow. He's a natural," he said, genuinely impressed.

"Hi-YAH!" Ezra said. Then he put his arms down and bowed. HE BOWED. HOW DID HE KNOW TO BOW?

I worry. I worry that it will be hard for Noah to see his little brother naturally excel at the things he struggles with. And God, aren't enough things hard enough for him, already? Ezra, of course, idolizes Noah. Worships the ground he builds Lego castles on. They bicker and argue, but things only get really heated when Noah is doing something that Ezra can't, or simply can't yet. I worry that those roles are already getting reversed.  

So I say things like, "Noah is soooo talented musically, you know, he has perfect pitch and already makes up his own songs and if we can just get his fine motor skills up where they need to be I bet we can really set him loose on a piano and..."

Ezra sings loud and terribly off-key, you see. And then I worry even more, because I know what I'm doing, right there, and it's awful and not fair, that my pride in my second child gets colored by concerns for my first. 

Oh Ezra, you are so uniquely, breathtakingly amazing. I hope I tell you that enough. You blow my heart up every day with pride and laughter and I love you so, so crazy much.

I'm your cheerleader too, and you're never going to get rid of me embarassing you from the sidelines of whatever thing you choose to do, because I already know you'll be the greatest and most brilliant boy to ever attempt whatever that thing you choose to do is. 

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.

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. 

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.

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.)