31 January 2011

your optimistic eyes seem like paradise

It's rare that I look at Emma and don't wish I knew what she was thinking. But no parent gets that privilege, and so I'd happily settle for a short conversation. Spontaneous language, instead of a script. That she could answer  my "how was your day" with the simplest "okay." I'd probably burst into tears, just like I did when her daycare teacher said, "Bye, Emma," and Emma returned, "Bye, Leslie!"

In other moments, it's not the words I'm wondering about. Sometimes, I'd just give anything to know what those huge blue eyes of hers are seeing.

Tonight, at the dinner table, she was happily munching her waffle, delicately licking off the apricot preserves before she started to chew. And then she went still, all her attention suddenly focused on the drinkable yogurt in her right hand. She tilted her head, closed her right eye, and squinted ferociously, her lips curving into a pleased half-smile after a few seconds of scrutiny. Apparently what she saw - whatever it was - satisfied her curiosity, because she set the yogurt down and returned to eating. 

I want to see through her eyes and know what the world looks like to my girl. What she sees that I don't or can't. What colors look like to her, though she stubbornly refuses to acknowledge that she can differentiate between them. What knowledge she can glean from a squint and a new angle.

I try so hard to anticipate her reactions - avoid the things I know will set her off, fill her days with whatever's likeliest to earn that joyful giggle. But I can't filter my view so that it matches hers. I don't know why she's suddenly afraid of the TV, to the point that when it's on, she will tiptoe no farther into the living room than the very edge of the entertainment center, and when she cranes her neck to see the screen, she claps both hands over her eyes and retreats.

Maybe, though, the point isn't that I don't understand the hows and whys of Emma. Maybe the point is that I'll never stop wanting to.

18 January 2011

with your smile just as bright as the sun

(Originally posted on Jan. 4, 2011)

“What’s wrong with you?”

I didn’t hear those words yelled in my 5-year-old daughter’s face on New Year’s Eve. I’m not sure how I would have responded to the 7-year-old boy who said them, but maybe I couldn’t have done a better job of simultaneously explaining and defending her than my friend’s daughter, who is a wise and tender 9.

“Don’t be mean to her! She just does her own thing! She’s really cool!”

Hearing this story after the fact, I was close to tears. Because someone was cruel to my child. Because I wasn’t there when it happened. And then because someone championed her, in that sweetly fierce way only another child could have.

First I wanted to cry because someone didn’t understand Em. I was equally undone to realize that someone else did.

Neither was a first, of course. Em has never taken an interest in kids her own age. They share the same spaces, and she navigates around them, intent on whatever activity has captured her interest in that moment.

On New Year’s Eve, it was a ball. She was happily trotting around the basement of a friend’s home, tossing it into the air and retrieving it wherever it fell, chirping, “Ball, ball, BALL! Fwow it!”

A little boy – the hosts’ son – approached and made an effort to engage her. She carried on as if she hadn’t heard him, continuing her game with a smile on her face. He got angry. He got in her face.

“What’s WRONG with you?”

I’d have been tempted to flip the question back to him, I think. Or maybe to haul him upstairs to his parents, and ask them to explain why being different isn’t scary. How we should treat people like people, even if we don’t understand why they do the things they do.

It made me wonder if I should have listened to the instinct that told me not to bother going to the party. I knew it’d be crowded; I knew Em had never been there. So much unknown – I waffled over the decision all day, finally deciding that we’d try.

I was stressed the moment we walked in the door. Within 30 seconds, Em had clambered onto the couch, still wearing her dripping wet boots, unaware of anything besides the new, plush landing pad she’d discovered. I pulled them off her feet and she was off again, with my wary, worried eyes tracking her every move.

More people came, and her activity level seemed to jump with each body that walked through the door. As Em got happier and more hyper, my friend took her daughter downstairs, taking hold of Em’s hand as she went, laughing at the expression on my face.

“Sit down. Relax. I’ll stay with her.”

It takes a lot of trust to relinquish Em’s care to someone else, even momentarily. Even when I’m under the same roof. Even when Em was clearly delighted to follow along and discover the delights of the basement playroom.

If we went back to that house today, she’d remember the basement, and she’d tug my hand until I followed her down the steps. She’d be looking for the ball. She doesn’t remember the confrontation — she wasn’t even an active participant when it happened — and that aspect of her autism is a gift that I’m oddly grateful for, because it allows her to be untouched by that kind of ugliness.

The protective bubble that I sometimes wish I could wrap around her? She already has one.

Joy to the world

(Originally posted on Dec. 26, 2010)

We survived a really strange Christmas at home on our own, just the two of us, for the first time ever. There was a tree. There were presents, cookies for Santa and lots of last-minute wrapping. But it didn’t really feel like Christmas – just a day where we ate a little more food than usual and felt no shame about staying in our pajamas all day.

Not being with the rest of our family didn’t bother Em, of course, because the concept of Christmas isn’t really there for her. She likes the tree and the lights. She loves opening her gifts. And she was especially appreciative of the cookies we left for Santa. But the rest of it, the expectation of being with family, the pressure of the perfect gift … none of that touches her.

It was just another day. Which meant that she was as she always is: happy.

I think for me, the beauty of Emma’s autism is simultaneously the worst part of it: the majority of the time, she’s in her own world, entirely unconcerned with what’s going on around her. It means she doesn’t need me to be happy — and it means she doesn’t need me to be happy. So while it allows her to be her own favorite form of entertainment, escaping to her room with my phone to fiddle with the apps I’ve downloaded for her or to sit in the corner with a book, it also means that a lot of the time, my attempts to draw her into an activity or a game are rebuffed — or more likely, flatly ignored.
It doesn’t hurt my feelings like it used to. Every day I spend with Emma helps me understand her better, and it also helps me focus on what’s important.

Life with Emma is so amazingly complicated sometimes, because I make it that way by getting bogged down in the worry and the details. Therapy. Insurance. Whether this preschool will decide, as the last one did, that her needs are just too special for them to deal with. If potty-training is a milestone we’ll ever reach.

And then she comes to me, with a book or a ball or a toy in hand, and holds it out to me. So I read, or throw, or play, and she laughs that perfect child’s laugh. No matter how long the day has been, I can always laugh with her.

She loves to be tickled, so last night, I sang her a silly song while she wiggled and wriggled. “I love you, boop boop boop boop boop.” After a few minutes, she ran away to catch her breath, only to come back and stand in front of me, grinning.

“I wuv oo, boop boop boop.”

Don’t get me wrong – I’m not some perfect, glass-half-full Pollyanna. But moments like those remind me how very special the privilege of being Emma’s mom is.

Life with Emma? Simple: joy.