Thursday, September 18, 2014

When Does He Learn About Stuffing a Sock in His Pants?

My kid who's never been embarrassed in his life: "It's a little hard to change in front of everyone [for gym]." I'm so excited by this authentic junior high experience! Then he added, "Actually, no one's looking."

Friday, August 29, 2014

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.

Thursday, May 29, 2014

It was the best of ages, it was the worst of ages

Five was an all-encompassing age.

It was learning to read slowly, then click, devouring words. 

It was opinions.

Her Big Five
It was pure gratitude, it was not knowing it was possible for a child to be so delighted. It was unsolicited thank yous.  

It was abysmal ingratitude, going to bed wailing an hour after getting a special present or not getting her way.

It was words like "unfortunately."  It was "calepittar" still going strong.

It was begging for high heels and grown-up make-up. It was scraped knees and dirty fingernails. 

It was freckles on her face, and I wanted to kiss them all.
It was wearing these yard sale boots every. single. day.

 It was the dubious question every day of whether she looked particularly big or particularly small. 

It was conversations with her friends. Real conversations. 
It was goofball, it was grace.

It was daily outfit wars, it was can I let my belly show, can I get my hair cut short like Nera’s.

It was begging to sleep up in Theo's bunk. It was nights of them reading to each other to sleep cuddling, and nights of hysterics and someone ending up in my bed.
It was Kindergarten. It was center of the cliques in the front yard in the morning, it was tears when someone didn’t like her shoes. 

It was frustration learning a language she didn’t understand, it was breaking into random Spanish phrases at home. “No se!”

It was treating me like a celebrity when I picked her up from school.

It was, "Does it hurt when you put your eye-tacts in?"

It was being "such a girl" but a knack as "one of the boys."

It was co-ed sleepovers.

It was refusal to eat breakfast, it was that special request for cherries and plums.

It was startling manners here, astonishing disrespect there.

It was the year she finally started singing because Frozen swept the Little Girl Nation.

It was I’m not your friend anymore, it was a new sister in all her family portraits. 

It was switching from gorgeous, elaborate artistic swirls to hurried stick figures to tell a story.

It was piano lessons with Grandma.

It was good grades and mutual fondness with her teachers. It was behavior disciplinary charts and her teacher having "talks"with me.

It was "This is for you, mom. Make sure you don't lose it." with every rock and flower found on the street. It was "But this is special to me" with a cry when asked to share with friends.

It was a new love -- and talent -- for improv. It was dancing wherever and whenever she could. 

It was chess, ballet, hip hop, tap.
It was hours playing Wii with Theo, and being good at it, too. 

It was asking for help with spelling on some words, and the hilarity of the words she assumed she knew. 
It was comforting a sad or bruised friend, it was laying down the dramatics for bruises of her own.

It was spontaneous love letters to her family.

It was sounding like Bart Simpson when she laughs.

It was monthly packets of drawings and books and how-tos she wrote that she brought home from school that had us in stitches.

It was carrying the cat around for hours, and it was tears of pure betrayal if she was scratched.

It was training wheels coming off.

It was charm, it was a nickel in the jar whenever she said "penis." 

It was taking care of me when I was sick. 

It was cooking with me, it was ditching me mid-project.

It was "you sound like a real singer, mommy."

It was compassion, it was empathy, it was infuriating selfishness. 

It was contradiction, disobedience, testing us, testing herself.  

It was the color blue replacing "all the colors of the rainbow" as her favorite. 

It was changing mommy and daddy to "Mata and Tapa." And sticking with it.  

It was my big girl at Broadway shows. It was her face in daddy's chest during scary parts of movies.

It was playing Belle's Beast

It was never wanting to take this hair out.

It was growing close to her brother Clay.

It was these curls

It was a brief but intense stint with Monster High

It was the first lost tooth
It was the first day of K

It was Flower Girl Perfection.

It was her extreme comfort spending hours in the Dominican Republic making hats with this guy

It was performing

And more performing

It was preschool graduation

It was going to school like this
It was insisting on "side hair"

It was this face

It was over too soon.