March 04, 2011
Noah started swimming lessons this week. So did Ezra, but Noah's class kicked off first.
Jason took him, so I could stay home with Ezra and preserve his little toddler-sense of fairness and gloss over the fact that Noah gets to do EVERYTHING FUN with the help of some chocolate-chip cookies.
Jason videotaped the session for me, though, so I could watch. We alternate karate nights too, so we've both gotten plenty of chances to watch that as well.
But it took the video for me to really see.
It was exactly what I've been seeing at karate, and what I've been seeing at home. What the babysitter has been reporting, what's between the lines of the teacher's notes home, and what I've been reporting every Thursday morning to his occupational therapist, even though I didn't really KNOW what I was reporting, other than, "help, we're struggling again, and I don't know what's going on this time, because the stuff that worked before isn't working anymore."
I went through our pantry and re-read ingredient lists, just to make sure I wasn't missing something. I tried re-instituting naptime, in case he was just plain worn out from the bump in his activity level. I tried forcing more outside time and making sure he was getting enough activity on the inbetween days. We set up an elaborate new visual schedule/sticker chart to target the more frustrating behaviors and tantrums and keep him on-task. We upped the sensory diet, brought out the sensory clothing, transition timers, anything to help center a kid who was flailing daily off his axis. We took away privileges and TV and sent him to time out and bed time. We explained. We begged. We threatened. We yelled. We Googled.
Then I saw the videotape and SNAP, CLICK, it all fell into place like a puzzle piece. I think I know what the problem is. Was this always his problem? Instead of the SPD and PDD and dyspraxia and language disorders and whatever the hell else we've had slapped on various insurance forms over the past three years?
Or is this just...in addition to all that?
We almost missed the bus yesterday. Noah was still dawdling distractedly over his sandwich at the table when I saw it pull up outside. I hollered and barked and grabbed his jacket and backpack and hustled him outside. I gave a half-smile and wave at the driver when the aide's head appeared over the front seat.
"NOAH'S NOT LISTENING." The volume and anger in her voice startled me. I stared at her and blinked.
"HE'S NOT LISTENING," she repeated, and then started listing his many grievous offences, the biggest of which seemed to be an inability to keep his hands off the various buttons and controls at the front of the bus while lining up to exit.
I stared at her some more. I blinked again. I had absolutely no idea what she expected me to do with this information. But holy crap, she was furious, and clearly waiting for me to...I still don't know? Yell at Noah in front of her? Apologize that she had to deal with the same things I do? Promise to drive him to school instead?
"Well," I finally stammered out. "He's...special needs? The stuff you're describing? The not listening? The off-in-his-own-world thing? Impulse control? That's part of why he goes to PEP in the first place. That's why he's on this bus."
"HE NEEDS TO LISTEN ON THE BUS," she shouted again. The "or else" was implied, though again, I had no idea what she thought she was threatening, because I'm pretty sure "touching the radio buttons" is not a get-kicked-off-the-public-school-bus-level offense, unless he was touching them with like, knives or illegal fireworks.
I wish I could report that I let her have it, that I raised my voice back and asked her what the hell she was doing in this particular job in the first place, if she was unable to control the all of SIX PRESCHOOLERS in her care for a 10-minute bus ride around the freaking corner without losing her temper like this over behavior that frankly, didn't even strike me as that atypical for a five-year-old little boy.
"We're doing the best we can," I said quietly.
I looked at Noah, sitting obliviously in the front seat. "Please be a good boy, buddy. You need to listen, okay?"
He propped his bookback up next to him. "Look Mommy, it's a cave!"
I wish I could report that I immediately went inside and picked up the phone and called the school, the special needs office, the bus depot, anybody.
I went inside. I sat down. I pulled out my phone and composed a couple angry messages on Twitter.
Then I emailed the person our OT told me to contact that morning about getting a new evaluation done. An email I planned to send anyway, but now seemed loaded with an extra heaping of defeat.
"We think Noah might have ADD," I typed.
And then I put the phone down and burst into tears.
It's not even the specific potential diagnosis that's upsetting. Well, it IS, to ME, because it's MY CHILD, and I think every parent is entitled to lose their shit momentarily whenever their perfect, precious baby is facing anything more serious than a hangnail. But I'm fully aware that in the large world of Bad Shit Your Child Could Have, Attention Deficit Disorder is pretty minor league. We've certainly had "worse" things on the table before, if you want to get gross and blunt with the Diagnosis Olympics.
No, it's mostly the feeling that once again, OH MY GOD, we're being booted back to square one. I don't know much about ADD or ADHD, except that there's a big steaming load of controversy over whether it's a real thing or not, overdiagnosed (or diagnosed too early or too late) or not, to medicate or not. I know that untreated, it can make life really, really hard for people. Which, you know, is the exact opposite of what I want for my little boy.
Once again, our mental marker for the day we can hope to put Noah on the bus without the giant knotty ball of worry and concern over whether we've made the right choices to get him through the school day has been pushed far, far back on the horizon.
The next evaluation will be at least three days of extensive testing, and will measure everything from his attention span to his IQ to ruling out (or IN) a number of other possible learning disabilities or ongoing developmental problems. We could certainly still be pleasantly surprised, or completely blindsided, or it could simply confirm what we -- Jason, me, his OT, among other people -- already suspect.
I always thought the next time we went through this, it would be to obtain an official PDD-NOS diagnosis, one that wouldn't really MEAN anything too different, other than "Yeah, he's still all over the place, we dunno, but here's a fancy label to make sure the school district continues to do the right thing." If we had to go through this again, that is.
The wonderful folks at The Stir offered to extend my contract into 2011 so I could keep writing the column on special-needs parenting, but after thinking it over, I turned them down. Yes, I was busy with Mamapop and plans for Moxiebird and AlphaMom and OH YEAH THIRD BABY ON THE WAY, but really, I turned them down because Noah was doing so well! I didn't have anything to write about, week after week! Coming up with topics was increasingly challenging, and every week the comments on my posts mostly just served to remind me that damn, we have it so easy compared to other families, and I really have no business cobbling together 500 words or so about All The Important Things I Know About This Very Important Topic.
That was around Christmas time. It's almost laughable, how quickly things cratered. Or more accurately, how quickly things were thrown into sharper focus. His speech is great. His social skills and his imagination are great. His sensory issues and fight-or-flight anxiety are incredibly improved. School behavior...well, that's still a challenge, but yes, we're FINALLY at a point where he can attend birthday parties and karate and swimming lessons without freaking out, without constantly being led back to the group, without having to beg him to try. He WANTS to learn karate and swimming. He really, truly wants to, so badly.
He's there, and...he can't. He can't pay attention. He can't hold focus. He can't follow directions, or even absorb them until they've been repeated three, four, even five times. He can't stand still. Despite crystal-clear instructions from the teachers, he either belatedly attempts to mimic what the rest of the class is doing or simply repeats whatever motion/stance/kick he did the last time in case that's what they were asking for again. It rarely is.
Eh, I thought. He's five-and a-half. He's a boy. We know he's delayed. It's a big deal that he's even here in the first place. All that matters is that he's having fun. Just ignore the other kids and what they're doing. Just look how happy he is.
But then, almost every time, when he realizes that class is over and he's missed something important or got knocked out of a class-wide game first because he didn't understand the rules...he cries. He SOBS. He's frustrated. He's heartbroken.
"I didn't win. I didn't do a good job. Why can't I not ever be the one who wins, Mom?"
As I let myself indulge in a good ugly cry yesterday, letting the Bus Disaster open up the floodgates of weeks of stress and worry and lost tempers and Noah and my dad and pregnancy hormones, I felt little hands on mine, pulling them away from my face.
"Oh no, Mommy sad!" Ezra said. "Mommy cwying!"
He brought me, in turn, the remains of his granola bar, then a plastic egg, then a receipt he found on the floor. I went from a shaky smile to bust-a-gut laughing in no time.
"All better?" he asked.
"Not yet," I told him. "But it will be."