31 March 2011

to my daughter

Dear Em,

Sometimes, a lot like you, I don't have the words to say what I'm feeling. How much your tiny steps forward mean to me. How much you mean to me. And I don't know what it means to you when I tell you that I am so, so proud of you.

It only took one word tonight for you to blow my mind. We were done with supper, and you'd retreated to the living room to find the remote so I could turn on Word World for you. I started on the dishes, and you came back to the kitchen, your snack bowl in hand.

I asked the question I always ask: "What do you want, Em?"

Before you answered, I was already turning to the cupboard, because you answer that question the same way every time. After supper, you always want goldfish crackers. "Feesh!" It's a pattern, and since it involves you verbalizing a preference, we usually go with it.

I don't know how to tell you how I felt when you said "gwapes." Gwapes, not feesh. One simple syllable, but oh, beautiful girl, do you know what you did?

You answered my question. You didn't parrot my words. You stepped away from the routine that you cling to, and we had a meaningful exchange where you told me exactly what you wanted when I asked you. You talked to me.

One little word, and I feel like I'm flying.

Tomorrow starts Autism Awareness Month. And of course I want people to know all about you and what autism means in our lives -- the challenges you face, the resources you need, the ways you're the same as any other 5-year-old.

More than that, though, I want you to know that I get it. I know how hard you work to do some of the things that come so easily to other kids, and your cheerful determination amazes me. All that progress, Em, it doesn't go unnoticed. I am always beside you, cheering you on -- and probably crying a little, because that's just what moms do.

There's a Japanese proverb about perseverance that says, "Fall seven times, stand up eight." That is you in a nutshell: you fall down where others are already running ahead, and yet you pick yourself up and give it another try, usually with a smile on your face.

You're kind of amazing.

I love you, monkeyface.


23 March 2011

a dream worth the keep

Today was not a great day. Nothing horrible happened, just a series of small annoyances that built and built, but as I walked out of my office to go pick Em up, I was convinced it was going to be fine. Then two drivers in a row cut me off, the sun disappeared and a big, fat raindrop snuck underneath my glasses to unnecessarily moisten my eye.

But Em was going riding, and Em loves riding. And sure enough, when the car's tires hit the gravel lane leading to the stable, her grin appeared, and she leaned her forehead to the window, a 40-pound bundle of happy anticipation.

"I ride a horse?"

"That's right, babe, you're going to ride a horse."

As she helped groom and tack Hershey, a pony with attitude that belies his advanced age, the grin stayed in place. Shyly, she reached out to touch him with her right hand (the left already occupied by thumb-sucking) as she followed the volunteers through the routine.

Then she was riding, sitting up tall and holding her reins as Hershey quick-stepped around the ring. They passed by the fence where I was standing, and E., one of the volunteers, turned to ask me a question.

"Does she sign?"

I was already shaking my head when she continued, "I thought maybe she signed because she doesn't talk."

Doesn't talk? My girl? Well, obviously E. has never been woken from a sound sleep at 5 a.m. by Emma "not talking." I took a moment to gather my indignance as they walked on, but when I let the breath out, it wasn't anger I was feeling.

Like Tori sings, "doesn't take much to rip us into pieces."

Is Em nonverbal? Maybe. Mostly. Probably, by the technical definition, which is "involving little use of language." Yes.

And that hurts. It sounds so harsh, like a thousand big, fat raindrops hitting you square in the eye at once.

A full sentence is a rarity for Em, and when she does say one, it's usually playback of whatever was just said to her. She has her favorite phrases, though -- "We go in the car," "I take a bath," and anything that starts with "more" and ends with a food.

I want to write a list of all the words I've ever heard her say, tally them up and consult some nonexistent chart. Surely she gets credit for "xylophone" and "waffle" and "jellyfish." My daughter says words. All kinds of words. And they count. That's speech. Right? 

It's lightyears away from what you'd hear from a neurotypical 5-year-old. But it's also lightyears away from where she used to be. She's come so far; she's done so much. And I can't let someone who knows nothing about all that struggle and all that progress to casually steal my hope. I know she has so much more to show me.

There were days I was sure I'd never hear a response to my "I love you." I always told myself it didn't matter, that we didn't need words for that bond. But tonight, I tucked my daughter into her bed, and as she gathered her stuffed animals around her, I said it again.

"I love you, Em."

She pulled a penguin into her arms and glanced at me, then reached for a monkey. I kissed her forehead and stood to turn out the light as she rolled toward the wall. It was faint, but I heard her speak as I left the room.

"Luv oo."

"'Cause this life is a beautiful one
And though I seen it comin' undone
I know most definitely
That it’s gonna be you
It’s gonna be me
So baby, keep your head up
Keep it on the up and up
Cause you got all my…
Love love love"

--Tristan Prettyman, "Love, Love, Love"

03 March 2011

Emma, victorious

After a ridiculously long streak of snow and sickness, Em was finally feeling better today when I picked her up to take her to speech therapy. I'll be honest, a lot of times this is an hour I dread. It's important, and I know it's important, but the frustrations usually seem to trump the triumphs, and most of the session is spent with the therapist patiently repeating a word or a question - and Em concentrating all her focus on the wall.

Not today.

I thought the 10-minute wait for the therapist to call us back was going to undo Em, but we counted and sang and tickled our way through. We walked into a different room than usual (also a potential hazard), but Em shrugged out of her coat and obligingly headed over to the table.

To get things going, the therapist (M) pulled out two flippy toys, the kind that you invert and press into the ground, so they can pop up. They were different sizes and different colors -- neither of which is a way that Em has ever used -- at least not verbally -- to differentiate objects.

I admit it: I was skeptical.

My girl loves to prove me wrong. "Emma, do you want orange or yellow?" M asked, holding one in each hand. Em reached forward, ponytails swinging, to point at M's left hand. "Owange."

I am not at all ashamed to say that I nearly burst into tears. "She never says color names," I said to M, my voice shaking. "I've never heard her say orange."

They kept going, Em giggling every time the toy launched itself into the air. And every time, she made a choice. "Yellow." "Owange." I bit my lip harder and harder.

And then M pulled out a picture board, so Em could choose what she wanted to do. This has been a real trouble spot in previous sessions, one that usually ends with Em putting her thumb in her mouth and wandering away, overwhelmed. When I saw that there were six - SIX! - choices on the board, I felt the encouraging smile fall off my face.

I admit it: I doubted.

My girl is amazing. She not only pulled her choice off the board, she labeled it. "Story." And then she sat in a chair - without wiggling or wandering - and let the therapist M flip through the pages, naming objects when she was asked.


It's not that Em doesn't know the words, just that she usually doesn't use them when someone's asking her to, unless there's an immediate benefit, like a snack.

And for the rest of the session, she rocked it out. Pointing to her choices, labeling them out loud, and actually participating in the activities she'd selected. I led her out to the car in a daze.

Those are the good days. This is what's possible.

Last night, I sat through a kindergarten roundup and wondered how that could possibly work for my daughter, if our other plans fall through. Today, Em showed me once again how little I really know about what she knows, like she was reminding me of her potential and asking me to keep helping her reach it.

Always, baby.