13 July 2012

The shine

Act as if what you do makes a difference.  It does.  -William James

Em and I had a moment tonight, sublime in its simplicity. She'd scampered off to bed after supper, totally skipping the clean-up routine. So I followed her with a damp washcloth, amused at the evasion tactics.

She was already under the covers, face pushed into the mattress, shoulders shaking. 

"Emmmmmmma," I whispered. "Give me your face!"

Giggling, she flipped over to face me. "Oh, Mommy!"

It was such an appropriate, conversational response that I froze for a second before swiping the washcloth over the ketchup on her cheek.

"Oh, Emma," I said back to her, matching her tone.

And then it was a game. "Oh, Mommy!" "Oh, Emma!" Both of us laughing, smiling. Both of us in the same moment.

She nestled her head onto my shoulder and snuggled close, content to let me hold her.

The greatest good you can do for another is not just to share your riches but to reveal to him his own.  -Benjamin Disraeli

My girl is happy. She's a four-foot-tall bright, sunshiny day with dimples. She is a joy to be with, a fact that has made daycare and preschool somewhat easier for a nervous mama. I know she's going to be liked. 

But liking her is not the same as understanding her, as believing in her, or as seeing past all the complexities to the simple truth of her potential.

She had a teacher once who was supposed to get it, who should have been able to at least scratch the surface. Who shouldn't have let her sleep through the only time she had devoted to helping her bridge the developmental gaps. After two years, I think that teacher would have remained convinced that I was lying about Emma's ability to count to 10, because she didn't do it on command, but for the time Emma sang out her numbers while the teacher's back was turned.

I kid you not, that parent/teacher conference involved the incredulous phrase: "She does know things!"

You can imagine my relief when we had a new teacher the next year, and then my amazement when I learned that she was certified in "getting it" -- our first encounter with a BCBA.

I was boggled at how quickly things changed, how the seemingly small things she focused on with Emma (showing my picture when I changed the routine by picking her up instead of sending her on the bus, for one) made such an impact.

During Em's time in her class, I started working toward securing insurance that would make full-time ABA possible. And then the news that due to funding cuts, Em's beloved teacher was going to have to find a new position. She did, and we said our goodbyes -- but only temporarily.

A few months later, on Em's first day of ABA, a familiar smiling face was there to greet her. And lucky us, she was the one in charge of Em's programs. That sounds too clinical for what I witnessed. Really, she was in charge of helping Em shine. 

And for the past year, it has been magical to watch my daughter flourish. We said goodbyes again this week, because talent and compassion and cheerful determination are all qualities that get recognized, and people with those qualities are asked to do bigger things so they can help spread the shine.

I know Emma is still in the best place she could be, with people who care so much about helping her do her very best. I know her progress is going to keep overwhelming me.

Still. We'll miss her.

I've seen and met angels wearing the disguise of ordinary people living ordinary lives.  - Tracy Chapman

You, I should say. We'll miss you. Knowing you might see this made me want to reach, one more time, for the words to tell you what you've meant to Emma, and to me. 

I will never stop being grateful that Emma found her way into your classroom. That first day, you knelt in front of her, looked in her eyes, and waved. You were on her level from the very first minute you met her.

You changed her life, and that's not even an exaggeration. You changed her life. 

Because of you, she has more words to tell me how she feels and what she wants. She has life skills that give her dignity. She has tools to help her handle situations that were once impossible.

I always, always believed in Emma. And then you did, too.

Thank you seems insufficient. But I think you know how deeply I mean it.

Thank you.

Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not.  -Dr. Seuss

09 July 2012

Being Real

I am fierce, and I am fragile.

It seems like an odd combination, but I'm guessing most of the moms out there will get it. Especially my tribemates, the women who get it because they live it, too. It's that finely honed instinct to protect, whether it's the quick hand on a shoulder to keep Em from charging ahead in line (likely because she didn't notice there was a line) or the lightning-fast explanation that leaps to my tongue when she does something that proves her Other, and the stares and whispers begin.

I want everyone to get it.

Like at the community pool last week, when her gleeful trip down the slide she's nearly too big for paused abruptly, simply so she could stare at her surroundings and beam. Pure delight. It was a simple moment, and it was magic for her. But there was a line, and she was holding it up. I watched another mom roll her eyes and huff, and I wanted to ask her what schedule my daughter's joy was disrupting. I don't know that explaining to her that Emma has autism would have smoothed things out -- and in this situation, I decided that someone who'd show visible annoyance with a happy child over a five-second delay wasn't worthy of an explanation. I think we could all benefit from an occasional joy break.

I can absolutely admit that my skin is too thin when it comes to my girl. I can't shake the desire to police her world and keep everything and everyone in it from hurting her. It's an impossible goal, and this skin isn't likely to thicken with time. I'll own up to getting stung by conversations that have nothing to do with Emma, nothing to do with autism -- but there's something in them that hits home, something in a phrase that just hits me where it hurts. (For example -- use "retarded" in casual speech, and I won't call you evil and refuse to speak to you, but I will be hoping your vocabulary improves to the point where you can find a much better word. I'll even chip in for the thesaurus.)

Emma was a few months shy of her fifth birthday when I stumbled across a thread on Facebook, a 'friend' posting excitedly about their child being potty-trained at age 3. The mom joked that she was relieved that this huge milestone had been achieved before her child started school. A commenter chimed in: "No joke, can you imagine having a child be 5 and NOT potty-trained?"

Neither of those people know Emma, and neither of them were attempting to slight her. I wish that prevented it from stinging. But just like neither of those moms couldn't imagine having a child with developmental delays, I can't imagine otherwise.

Emma is all I know, and all I want to know.

It's kind of like apples and oranges, I guess. No peeling required for an apple -- just bite in and enjoy. For oranges, you need to put in a little more effort. Work at the peel, get your hands messy, all the while knowing that the end result is going to taste nothing like an apple. And so what? Oranges are their own thing, with their own appeal. Just like I've never bitten into one secretly wishing it was an apple, I don't wish I had your child when they hit a milestone or do something amazing. I just wish the best for mine, knowing that I will celebrate just as much when we get there, in our own time.

Speaking of milestones, we hit that huge one ourselves recently. Instead of diapers, now there's a four-foot blur streaking by me, cheerfully calling out, "Bathroom!" and "Wipe me!" and "Toilet paper!"

I'm going to go home tonight and read The Velveteen Rabbit to my daughter, who will never be ugly to me.

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. It doesn't happen all at once. You become. It takes a long time. That's why it doesn't happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."