The Long and Winding Road

Last week, out of the blue, one of the doctors finally called us back. The one we wanted to see in the first place, but had given up on. He could see us on Sunday. Would that work? Uh. Yes? Noah and I spent several hours with him yesterday. I sat with my giant binder on my lap — every piece of important paper we've generated since the Early Intervention days — while Noah played with a Magic 8 Ball and simultaneously broke my heart and took my breath away with his amazingly self-aware and articulate answers to the doctor's questions. I see too many things all the time. I'm always distracted. My ears don't work. My brain needs to be fixed. Can you help fix it? I want to be smart and I'm not. My ways are not the world's ways. And: There's a war in my head and the bad guys are winning. Of course, these responses came out in between long, detailed descriptions of the entire plot of The Lord of the Rings trilogy, and were spoken while he turned upside-down and backwards on the couch, as if it were physically painful for him to sit still... 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 →


Sideways

It's been a tough couple months for Noah. I've been tangled up over what to say or what to post — the fist-pump GO NOAH! entries are so much easier for me to write; going back to the days of routinely wringing out every tiny neurotic emotion via the keyboard isn't something that interests me much. Because even during the tough periods, we're still moving forward. Backwards isn't an option. But I guess lately we've been moving more sideways. Summers are always tough; the back-to-school transition is even tougher. The same old issues are there: anxiety, rigidity, social and attention/impulse control issues. They just take new shapes and forms and ebb and flow in their frequency. The loop is still there, looping around and around, as my child tries so hard to make sense of a world that just doesn't make sense to him. And a world that increasingly isn't quite sure what to make of him, either. (He quit karate, by the way. Yeah. At the beginning of the summer. Just a few weeks after all that earlier drama and my premature pride in coming up with a solution to keep him going. I probably started a dozen blog... Read more →


Noah first met his occupational therapist at summer camp. He was three-and-a-half years old and had already developed a fierce dislike of school (and any school-like activities) and a deep distrust of teachers (and any teacher-like adults). But for some reason, Ms. M___ was different. He liked her. He liked her a lot. For over three years now, she's worked with him. First, almost daily, at preschool, then weekly. She was his anchor, the thing he looked the most forward to all week, the one person who could always — ALWAYS — coax the most and the best from him. Balance, coordination, motor planning, social skills, play skills, handwriting, attention span, self-regulation. She's encouraged him, pushed him and challenged him. But most of all she's believed in him, and loved him. Genuinely, unconditionally. She's the first person to hear about Noah's victories and breakthroughs, big or small. She is one of his biggest cheerleaders. She's also the first person I talk to when I'm having a rough time, or need ideas or strategies or some empathy from someone who gets it. Or maybe just to geek out about The Hunger Games. She's kind of been my cheerleader, too. Yesterday she... Read more →


I don't know about you, but I'd give money to that face. Before anyone jumps to the wrong (yet probably all-too-common these days) conclusion: No worries, Noah's photo wasn't ganked from my blog or Facebook. TLC is the non-profit organization that has been helping Noah (and us) for years now. It's where he attended the Miraculous Summer Camp of Miracles and The Preschool That Changed Our Lives. He still receives weekly occupational therapy there for ongoing issues with rigidity, self-regulation, social skills, etc. A couple years ago they asked if they could take photos of Noah and his therapist for brochures and stuff, and we agreed. I always forget about it, though, until one of the photos shows up somewhere, blast-from-the-past style. I don't know how much longer Noah will require OT. (After several ridiculous tussles with several ridiculous insurance companies, we are finally on a plan that covers the weekly sessions without protest, so I am admittedly in no rush to change anything or draw the slightest bit of attention to ourselves.) All around, the reports are good-to-excellent: his teachers, his therapists, even his karate instructors are singing his praises and talking about corners turned, strides made, breakthroughs and... 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 met with a new child psychologist this morning. So I spent last night organizing and re-filing the mountains of old paperwork we've collected over the years. Old evaluations, assessments, treatment plans, progress reports, IEPs, re-evaluations, insurance rejections and appeals and God knows what else. Something old, something new, something photocopied, something blue. (The cup. The cup is blue. The cup is also full of vodka.) Reading through those old files is both oddly inspiring and completely masochistic. On the one hand, how far he's come! The things he says and does! The mind-boggling number of victories, both large and small (and medium and miniscule!), that we've celebrated since that fateful day when I took my non-verbal almost-two-year-old to the pediatrician. When that pediatrician cocked his head to the side and asked, "Does he walk like that a lot? On his toes?" He did it. We helped. I have no doubt that the things we've done and the people we've worked with have absolutely helped. There are miracle workers in that pile of papers. Bona fide. And yet. Ugh. The mistakes are all there too. The consent to discontinue services form I signed for Early Intervention. The progress reports from... Read more →


After Noah learned to ride his bike sans training wheels, and after the trip to the toy store and the coveted Ninjago Lego Set Of Six Hundred Eighty Four Infernal Fucking Pieces Are You Kidding Me was procured and assembled, Noah calmly asked us to put his training wheels back on. Uh. Well, see, the point was... "I'M NEVER RIDING MY BIKE AGAIN," he shrieked, before I even finished the sentence. He may have stomped up the stairs and slammed his bedroom door, but I can't specifically recall if that was over the training wheel thing or any of the MILLIONS of hideous injustices his six-year-old self is forced to endure on a daily basis, including but not limited to: 1) not being allowed to watch TV 2) being told he really shouldn't wear that sweater, it's 80 degrees outside 3) YOU HAVE TO EAT ACTUAL FOOD SOMETIMES 4) AND GO TO BED 5) being told to bend over all the way to the ground to pick up the thing that he just dropped, I mean, MY GOD, he's tall for his age. It's like, three whole feet away, down there. YOU DO IT, MOM. He stuck to his stubborn... Read more →


When the flyer came home in his backpack, I groaned. The Valentine's Day class party was going to have a "theme." A 1950s sock hop, with music and dancing. Dressing up in poodle skirts and "greaser" costumes was encouraged. Please remember that all treats must be store bought, not homemade. Sometimes integration in the general education classroom sucks. No way would the room parents in special education plan something like that, with so many of the kids easily unnerved by changes in routine and costumes and noise and cupcakes frosted with Red 40 dye. But there was no party for the special ed class -- parties fall exclusively in the domain of the homeroom. The giant overcrowded homeroom, like the one I toured just over a year ago with other parents from the preschool program. We observed it with wide, terrified eyes -- one mom grabbed my arm and squeezed it while shooting me a WTF look, because we were both thinking the same thing, because our kids won't be ready for this environment in a million billion years. The kindergartners moved around the room in quiet, controlled movements, focused on independent activities, tuning out their dozens of classmates 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 →