Special Needapalooza

I went to Noah's IEP meeting yesterday, our first "real" meeting with the new school. We had an initial "move everything from County A to County B and try to not let anything get lost in translation" meeting in the beginning of the year, but this was the Actual Annual Big-Deal one, where we determine services for the next 12 months. The good news is that...well, it's all good news. Noah has transitioned beautifully and his new team loves him, and even better, REALLY understands him. After years of being classified solely as a SPD/ADHD kid at his old school, to the point that the team seemed surprised by his eventual Autism diagnosis (and then had to rapidly overhaul his IEP), I think it was really beneficial to move into this school with the ASD code firmly in place. No question, Noah needs those specific needs met, and here is everything this school can possibly provide. His new IEP is strong, comprehensive and best of all, was written from the point of view that this is just who Noah is and how he thinks and learns. He is not a problem to be solved. He is a child who will... Read more →

The Stuff in the Space Between

Throughout all the hours with bouncy-voiced strangers, the weekly treks to various therapies, the years of classroom pull-outs and special accommodations, Noah never asked us why. Not surprising at first, of course, since the majority of our early efforts centered around his reluctance to talk much at all. And even though he's never been the most flexible child, there was still always that element of understanding that We Took Him Places Sometimes, And So He Was At That Place, Okay, Cool. Most of the places we took him were pretty fun, anyway, and full of grown-ups who played games with him the whole time. Best not to question it. But now, the Matrix is glitching. School is not fun. School is hard. School is hard for him, in a way it doesn't seem to be for the other kids. The other kids, whom he still doesn't understand how to be friends with, or why he should even want to be friends with them, especially since they don't understand why it's so hard for him to stay calm and still at school, seem to have it easier. And now he wants to know why. And he doesn't just want to know... Read more →

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... Read more →

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... Read more →

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... Read more →

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... Read more →

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... Read more →

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... Read more →

Our insurance stopped covering Noah's occupational therapy back in November -- conveniently, right around the time we hit our out-of-network deductible, and actual promised benefits would actually have to be paid by them, but they indicated that they'd be happy to consider an extension of the coverage, so long as we provided them with X, Y and Z. Two months later, they came back and said that actually, could we also send them W? And expand on Y? And provide some background on Z? And we did, and Noah's therapists did. We got doctor's notes and his school typed up reports and then longer reports and then the insurance claimed we hadn't sent something that we actually had, and on and on it went. For seven months. We continued to send Noah to therapy, the claims we submitted anyway came back rejected, the bills piled up unpaid. For SEVEN MONTHS. Then finally, a decision: Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy. Rejected. *** Noah never got mosquito bites, or at least, that's what I... Read more →

Today's the last day of school. There are parties, ridiculous fake graduations, special year-end slideshows. I'm bringing the napkins and paper plates. Noah wears a backpack now. We can drive around the loop without a bone-melting, ear-piercing tantrum. He can hold a crayon, cut with scissors, ride on the big-kid swings and a merry-go-round. He can write all his letters and his name, and will draw pictures of things he likes from his favorite books. He's starting to read a few words and is really, really good at math. We suspect that what we first assumed was synesthesia is actually something more like perfect pitch -- he identifies the song colors right along with key changes, and can describe the color of other tones in the world, like cell phones and car horns. And he can eat ice cream with a spoon. Last summer, right before school started, we went to a pizza restaurant and bribed good behavior from Noah in exchange for chocolate ice cream. Which arrived not in a cone, but in a bowl with a spoon. Noah still ate everything with his fingers, but couldn't handle the mess and the cold of ice cream which is supposed... Read more →