Tantrum: A Time-Out From My Stinkin' Positivity

Every time there's some version of the meme "If only my life were like I make it look on Facebook," I laugh with a knowing nod -- and a little bit of a lump in my throat. I've always had a bit of a Pollyanna image (read: annoying bubbly person), so it's no surprise that I post positive things on Facebook. And I do and have a lot of amazing shit, so I'm not making up the stuff I say that makes my life look rockin' (and it is). The 7 days of positives excercise was cake...I could have written 1,000 more. As an aside, it's been a pleasure to read the ones from others who are, well, not always so positive.

So why the lump? Maybe because I know that when it comes to Theo, I paint a one-sided picture on Facebook. I talk about his beautiful mind, the sweet way he sees the world, his happiness to see his sister in the morning, his soothing voice and gorgeous face. I show not just Theo in the most positive light, but autism, because I want people to see that he's doing great and so am I. They don't need to feel sorry for us.

The reality is, no one nominated Theo to be the face of autism for my friends and family. I have so appreciated his support system on Facebook. Everyone loves an underdog, so when I post stuff about his small triumphs, he gets an outpour of love. And it's genuine -- everyone genuinely loves this kid, and should.

But then there's the shit I don't post. The stuff that wakes me up in the middle of the night (when I'm writing right now).

Last night was Theo's middle school orientation, and what did I post to Facebook? A photo of the incredible view from his school in LIC.

I didn't post how painful it is when we're in a room full of kids his age and the differences are so in-your-face. Look, comparing kids sucks. We shouldn't do it, but we do. I'm not proud that when I meet kids with disabilities a whole lot more severe than Theo's, I am grateful. "It could be worse" is a frequent commentary running through my brain, or spoken aloud with my husband.

But it could also be better, something I try not to think or feel or say. Most of the time, when his differences are not so glaring, I'm fine. It's just those damn occasions when he's in a room of his peers (so yeah, any time I've ever visited him in school, ever).

So here's what I didn't post to Facebook about middle school orientation. I watched the incoming 6th graders get their new schedules, check to see if they have friends in their classes, wondering who's in homeroom with them, hoping they got the teacher they wanted. What team will they try out for, what club will they join? Some kids were excited to be there, some nervous, some clearly unhappy summer was ending, but regardless of their emotions, they showed true understanding of what was occurring -- this new junior high journey they were starting.

Theo's big takeaway was that there are 8 periods in his new school instead of 7 (I never even knew there were 7 periods in elementary, but of course he did). This is not to say he is unaware of what's happening. He is nervous about middle school, and excited. He's glad he's taking the schoolbus because he's not ready to take a train himself, he says with a self-assuredness that's so wonderful to see. In general, I've been pleased with his age appropriate level of anxiety about starting a new school.

But as we sat there eating potluck dinner, I sighed as Joe had to constantly beg Theo to wipe his face and hands as he ate his meal like an animal, chicken grease all over him, everywhere. All I could think about was him sitting at lunch on a typical day and all the kids watching him eat this way, with no one to tell him to eat like a human being.

He gets therapy for so many things, so why can't anyone teach my kid to fucking eat? If you'd seen the looks I've gotten in IEP meetings when I've brought this up... as if to say, Your kid is way behind on reading and you want us to show him table manners?

After the teachers introduced themselves to the crowd, we had the chance to meet them individually. Like a nutty overbearing mom, I marched him over to the math teacher to gush about how he loves math, and the teacher was met with a few forced nods. Then I proudly told the music teacher about the theater Theo's done and how much he loves it. Excited, she asked what he likes best -- the singing, the dancing... He stood there bored and unresponsive, so she teased, "Or is it just something your mom sticks you in?" I was mad at him for making me look like an idiot, but really I knew I was pushing it and it was a bad time to be meeting teachers. He was tired and overwhelmed.

Sometimes I can't sleep, and like every mom, I think of everything I'm doing wrong. How does Joe take it all in stride? Why doesn't this stuff bother him? His response to all kinds of concerns is a simple "He's Theo, babe." And he's not being aloof -- I believe that he truly doesn't need Theo to be like anyone else.

You see it all the time on the autism blogs. "My child is special, and I wouldn't change him for anything." Well, on days like these when I'm mid-tantrum, damn straight I would change him. Damn straight I would want him to be the forbidden N-word -- normal. So there, I said it. I admit it. Sometimes it just gets so hard. This parenting business in general is hard. Pollyanna confesses she doesn't know what the hell she's doing.

Today we'll head to the Poconos and I'll have my usual smile on my face, and Theo will be happy because he lives for trips like these, and I will enjoy his pleasure. I will relish seeing him in his element, in the lake and the cabin and the woods getting good and dirty and smores-y like kids should in summer. Next week, I will post pictures of Theo in his new school uniform looking handsome as hell.

Theo is a happy kid. Maybe the happiest I've known. The things that bother me don't bother him, which makes me a jerk. Maybe I shouldn't have put all this in writing. Maybe I shouldn't share it with anyone. But for some reason, all of a sudden I couldn't stand that I was putting up a front on Facebook. Stupid, probably. Probably middle-of-the-night delirium. But here it is: the dark side.

Back to the Brain Doctor

Yesterday Theo and I returned to the neurologist we'd last seen Theo in 2009. In those days we visited a bunch of times in the span of two years, and those appts were always an emotional strain for me. As Theo and I sat in the office yesterday waiting for the doctor, Theo lined up legos in a pattern as he probably would have in 2009, only this time he was constructing an entire game in his head using the surrounding toys. This time he could tell me what he was imagining... I wondered what he was imagining when he was 5 and we first started seeing this doctor. The thought of it made me teary.

Then through the wall I could hear the doctor talking to parents in the office next door, and they were talking about the kid's noises, his gibberish. Parents starting out on this journey into autism. That got me going, too. The beginning is so tough. It's never easy, but when your baby is so little... man. I'm glad those days are behind us.

A few days ago, with the help of YouTube, Theo and Melody learned about autism and that Theo has it, along with some of their friends. He pointed out things in the videos that he could relate to--clothing tags bothering him, trouble communicating (I was shocked to hear him call that out), and, lol, liking video games and TV (I told him that was all kids).

Theo took the news great. Melody asked if autism was good or bad and I explained that it was neither. The conversation went as well as it could have, and I'm glad Theo understood we were going to a brain doctor to talk about autism. We needed an updated evaluation because this year, we start our apps for j...j...junior high. Phew, that was hard to get out.

The doc came in and Theo delivered a friendly but clearly jammed-into-his-brain "Hi, nice to meet you." The doc didn't remember us yet, but he read his old reports and could immediately see a big difference in Theo's attention and demeanor.

He sat and talked with Theo awhile, about how often he gets services in school, whether he's bullied, about his friends, what he did for his birthday. I was worried when Theo could not think of anything we did when we went to Mystic last weekend, a trip he enjoyed so much. But he does freeze up when he's in shy mode.

We talked at length about Theo, what my biggest concerns are... I mainly talked about his obsessive need for revenge when he's been wronged, and his desire for fairness. The doctor wrote this down and joked that his notes read like a novel tagline.

We talked about other concerns and he didn't think most problems I named were a big deal for his age. Occasional aggression at school didn't worry him since it's only occasional and we're dealing with it. We talked about stimming and how he still does it all the time but mostly during pretend play since his imagination is going all day and he's always creating games and worlds. He doesn't walk around flapping his arms anymore. The doc was thrilled. I complained that Theo is a messy eater and it doesn't bother him at all to have chocolate or something all over his face, and he chuckled that that's not autistic behavior. I agreed, it's pretty much the opposite of sensory issues, which he has none of other than disliking tags in his clothes. He's fine with loud music and noises and loves the theatre. I mom-bragged to the doc that he's great at improv and enjoys doing shows.

I gushed about Theo as the sweetest kid--an incredible brother, incredibly compliant, funny (the doc tested his understanding of sarcasm and jokes and Theo did well. There was a time he didn't understand jokes or expressions!)

During the appt Theo kept putting his legs up on the chair and I kept tapping them to indicate he put them down. I didn't realize the doc was observing me, too. More on that later.

He had Theo read a bunch of words that increased in difficulty, and occasionally asked their definitions. He declared him at an early 4th grade reading level, which sounds about right. A year behind sounds pretty good considering years ago I worried whether he'd ever read (or hold a conversation for that matter).

The doc drew some shapes for Theo to copy. I smiled when he said "good pencil grip." Years of occupational therapists working on this, and it's finally happening! But the lines were shaky and the shapes were terrible as Theo rushed through them. The next batch was better when he was asked to slow down.

Theo was asked a series of questions. "What animal gives us milk?" He said cow, and when the doc asked what else, Theo laughed thinking that was a joke. Giggle! He named some animals that lay eggs and answered a bunch of math questions correctly, including some that involved logic, which impressed the doc.

He said Theo's of average intelligence. In his old report, he'd written Theo was borderline. Wow. Not every parent is thrilled to hear "average," but this one was! He kept saying Theo was smart-; picture Forest Gump's face when Jenny tells him their son is smart, and that was me. He even wondered if Theo was aspbergery (his words) which shocked me, since I never saw him that way, and he said that time would tell. Apparently we'll know more when the hormones kick in. EEP! Puberty terrifies me!

By the way, this doctor is kind, personable, funny--and he's also blunt. He had no problem telling me years ago that he thought my GFCF attempts were pointless (he was right, thankfully) or that I was babying Theo (he didn't put it quite like that). So it took me off guard when he suddenly told me he'd been watching me, and he's delighted by everything I'm doing. He said it was just all so...proper. "I don't get a lot of mothers like you in here," he said. My throat went dry. Even now, thinking about it, I am on the brink of tears. I never feel like I'm the warrior mom my friends are and that I don't do enough for Theo. And here was an expert saying I'm getting it right. He said he wasn't just being nice (thanks to previous experience, I believed him.) He used my quietly tapping Theo's leg as an example, and said I'm calm.

Now, people tend to tell me I'm calm. It's nice to hear, but never rings true... I'm good at putting on a calm show. The only person who would never say that to me would be my husband, who's privy to watching me go off the rails with my children. But still, the doctor reinforced what I know but can't always implement...that Theo needs me to be calm and even, even when he's melting down. My frustration doesn't help him. This is true for any kid, of course.

Ultimately what I take away from this appointment are nuggets from the doc: that on the spectrum, Theo's autism is mild; that he's smart; that the difference between this time and last time is night and day. These are things I know. But it's nice to hear from not-his-mom.