How it is

She is the girl scampering around the playground, that smile seeming permanently etched on her face. She looks like every other kid playing. She swings, she climbs, she slides - and then, halfway up or down, the illusion shatters. She stops, halting her progress to stare into space, looking at something I can't see.

A line forms behind her - other kids, impatient to continue their fun, not able to see what's holding them up. They wait. They grumble. Sometimes they roll their eyes.

I am the mom that's never far away, the concern always showing in those moments where Em's world seems to pause - and the rest of the world is forced to follow. I encourage her to keep going. I make sure the waiting kids don't crowd or push her, but I try not to intervene. Sometimes I have to force myself to let the moment play out, because Em's not doing anything wrong - but neither are the kids who don't understand.

Then, Em gets un-stuck, and everything goes on.

I had to remind myself of those many moments at the park last week, after we got home and pulled into the garage. I unbuckled Em's car seat and held out my hand.

"Come on, babe, let's go eat."

She scrambled out of the seat immediately, but instead of climbing out of the car, she turned away and bent down to the floor.

"Em, let's eat supper! Come inside with Mom."

During our drive home, the stuffed animals we (always) travel with had made their way to the opposite side of the car, wedged under the driver's seat. With her back to me, Em dislodged them, returning them to their rightful place beside her seat.

"Okay, you got them! Good job! Let's go in the house now."

She was crouching again, her back still to me. Now there were books on the floor. Those, too, she carefully replaced. My encouraging smile was starting to feel forced, and then she slid back into the car seat.

"Sweetheart ... please."

Every time we're in a store and a cashier hands Em a sticker, she wears it out of the store on her shirt, but once we're in the car, those, too, have a place. Stickers go on the back of the passenger seat, so she can reach forward and touch them while we're tooling around town. The Target dog was starting to peel off, and so she leaned forward, carefully patting it smooth.

"Emma?"

She turned to me then, took my hand and climbed out of the car with a smile, her work done. Everything was where it needed to be for the next car trip.

Next time, I won't begrudge my girl the 30 seconds it takes for her to shift her world back into place.

a good, good life (part two)

So ... this isn't soon. It's not reasonably close to soon. What happened to August? It fled before I finished talking about July, that's what. But before I go back to that, here's the latest in the string of adorable stories about Em is her newest song, described by her therapist as "The Goodbye Song."

"What's The Goodbye Song?" I asked.

Na na na na, na na na na, hey hey hey, goodbye


I spent the next evening trying to coax her into singing for me. And finally, while she was flipping through a book this morning, curled up on my bed, I heard a little voice singing very, very quietly.

Na na na, hey hey hey, goodbye


I whipped out my phone, desperate to capture it on video, and managed to record an even quieter version. Like all my moments with Em, I wanted to sear the sweetness of this one into my memory. Just like our hot July day.

We left the museum with me flying high on our success there, and our next stop was a splash park. I got lost. There was construction. But I called for backup, and we finally ended up in the right place, trudging down the sidewalk toward the water.

More water than I'd imagined, and the place was busier, too. At her first glimpse of the water, Em began to bounce. There were a few dozen kids giggling and splashing ... all in their bathing suits. I glanced at Em's tank and denim capris, shrugged and slipped her crocs off.

And she was off. It was one of the few times in a strange place where I wasn't worried about her wandering. Where there is water, there is my girl. She stood on top of one of the jets of water and giggled as it soaked her. She ran her hands through the spray, watching the water rush through her fingers.

A man standing beside me watched me watch her for a minute. "No bathing suit, huh?"

I explained that we were just visiting; I hadn't known she'd need one. He glanced at me strangely. "On vacation ... and you came here?"

We did, and six hours into our mini-getaway, I knew it was the right choice. Even if the day fell apart at that moment, I'd seen a week's worth of smiles out of Em already.

Finally it was time to go, and I coaxed a reluctant, waterlogged girl to come sit on the grass and dry off. I didn't care that her clothes were soaked, but the capris had worked their way down ... past the diaper, which had absorbed all the moisture it could and had swollen to three times its normal size (like one of those awful, awful commercials). There was no other way to get the pants back up over her hips, so in a proud parenting moment, I picked Em up by her pants and wiggled her.

It got us to the car, at least. We walked hand-in-hand in the late afternoon sunshine, and my smile was as big as hers.

(Looks like a three-parter after all. This time I won't say 'soon' for the follow-up.)

a good, good life (part one)

For the most part - though with notable exceptions I'll easily admit to, like when something electronic misbehaves or the tricycle instructions are written in German - I feel self-sufficient. As far as Em and me and our daily life, I've got this down to a wacky kind of science.

So sometimes I hesitate to enlarge that box. We're happy here; things are great. Should I risk the possible rewards of the unknown and disrupt our painstakingly established routine?

Yeah. I totally should. I tried it this summer and got rewarded with the most sublime 24 hours I remember Em and I having together.

Vacations are great; most families love them. They're new! They're exciting! But they are decidedly not routine, and so for us, they get a little tricky. Em and I have never taken one on our own - exposing her to that much newness at once is a situation where I've always requested backup.

At the beginning of July, she had a week off from her ABA program. I had a week off from work. We had appointments: getting the stove fixed, interviewing babysitters and heading to her last private speech therapy session. But the weekend was a blank slate, and on Friday morning, I decided to pencil something in.

A night away.

Had I thought about it longer, I'd have probably talked myself out of it, but the excitement of a last-minute trip won out. I spent my workday grilling a co-worker on the ins and outs of our destination, and the next morning, we were in the car, just a couple hours away from a whole lot of newness.

Even with a forced detour, the trip there was easy; Em loves to ride as much as I love to drive. The first wrinkle came at hotel check-in, when she caught sight of the pool.

"Go swimming."

"We will, babe. We're swimming later."

"GO SWIMMING."

"Em, I promise we're going to go swimming. Later."

The lip quivered, and I used one of the only tricks guaranteed to avoid imminent meltdown: I distracted her with lunch. And then I kept her day so full that she didn't think of the pool again until it was time to get in.

First stop: a children's science museum. At first glance, I guessed we'd pay our admission, wander around and be done in half an hour. When I next checked the time, we'd been there for two hours, which meant 120 minutes of complete glee for Em.

The place was nearly deserted, so she explored in her usual way, darting from exhibit to exhibit. Once she was sure we'd touched everything, she made another circuit of her favorites. She was thrilled to discover the giant slide that started on the third floor and ended on the first. She was not thrilled to discover that it wasn't available to her just then. And the attendant guarding the entrance probably wasn't thrilled when Em tried to sneak through her legs.

This time I didn't offer food, I mentioned water. A water table, to be exact, in the great play area that even a space already designed for kids needs. Em got to splash and climb and splash me and climb me. And then we wandered downstairs to the mirrors. I've never seen her so enthralled. She darted by the first mirror, glanced sideways and came to a screeching halt.

Back she came, to position herself squarely in front of the mirror. She was perfectly still for a minute, just staring at her distorted reflection, and then the dimples flashed. She jumped forward, never taking her eyes from the mirror, and then she laughed. The next 20 minutes were all wiggles and giggles, as she danced and jumped and grinned in front of every mirror.

I couldn't take my eyes off her. Sure, it was a rush to see her enjoying herself so thoroughly, but more than that, it was watching her make those discoveries. I got to watch her figure something out for the first time. She was learning, and she was loving it.

(Seems a good place to stop what's turning into a long post, so I'll finish the story soon.) (Hold me to that.)

Dum spiro spero

If you know me well - or at all, really - you know about my affinity for words. Turning a phrase for a project at work, attempting to wipe the floor with you in Scrabble ... I like words.

Never more than when they come out of Emma's mouth, which they've been doing a lot more often lately. Doesn't that seem crazy? In the first two weeks since her ABA program started, she's been coming home and talking to me. She repeats more. She requests more. She talked to Grandma on the phone instead of just smiling at her picture.

And Saturday morning, she grabbed a DVD case and turned to me.

"Watch puppies?"

She was holding up 101 Dalmatians.

I'd been awake for more than a day at that point, so it took me a minute to find my own words and tell her "Yes, yes, yes, of course you can watch puppies. You can watch puppies all day long if you keep talking to me."

"Want bread." I handed her a piece, hoping for the next step. She frowned, handed it back to me, and walked into the pantry to grab the peanut butter. She shoved the jar into my free hand. "Want sammich." Maybe you can imagine the silly victory dance I did. Use your words, baby, and I will make all the sammiches you want.

"Go in the car." It is no hardship to invent a quick errand so I can let her know I understand what she's saying to me. That her words have power.

It's progress; it's measurable, visible progress, and watching it happen is such a thrill. I worked hard to get her here, and now she's the one doing all the work.

I have loved her fiercely since before she was born. I believed in her potential before her diagnosis, and I've continued to believe in it since. But I can't remember the last time I felt so much hope, so sure that some of the things I want so desperately for her are reachable now.

These steps forward may not always be so big, and loving Em has taught me about the inevitability of the in-betweens, when progress stalls or even vanishes. I know my girl, though, and she never stops trying.

Right now I'm listening to her sing herself to sleep, and I could not invent a sweeter way for her to remind me that what I say matters.

"Yes, Jesus wuv me. Yes, Jesus wuv me. Yes, Jesus wuv me. Bible ... so!"

I love her words most of all.

hello, goodbye

As soon as we walked in the door, Em let go of my hand and sprinted past the smiling therapist who'd knelt to greet her. I'd wondered how well she'd remember this place, having been there twice before. When she made a beeline for the trampoline, I knew: she remembered perfectly.

Day one at her new center got off to a happy start, not that I'd expected otherwise. Happy is my girl's usual state of being, usually interrupted only by hunger or sleepiness, and sometimes not even then. We walked through the center, putting lunch in the fridge, snacks in the pantry and diapers in her cubby. Before I knew it, I was standing outside in the sunshine, and Em had begun her new adventure with ABA.

The week went by in the same blur that first drop-off had, but the constant was Emma's smile. She was always happy to step into the center in the morning, and after a day that was busier and longer than she was used to, her grin was always there when I came back.

As usual, the adjustment was far easier for her than it was for me. I needed a few days to miss what she'd left behind: a wonderful place with people who genuinely cared about her, not just for her. But because they cared about her, each and every one of them took the time to tell me how excited they were for the possibilities of this new program. How amazing they know it will be. How much progress they hope she'll make.

Me, too.

It was easy to look forward when I read the binder that gets sent home every day. Notes from her first week: "She's asking for items she wants!" "She had a great day!" "She is doing a SUPER job." "We had so much fun."

I believe she will thrive here, that the one-on-one attention from people who've devoted their careers to understanding and working with kiddos just like mine is going to go far toward unlocking her potential.

I've heard from other parents that a month in this program has brought their child a year's worth of progress. I can't imagine what that would look like for Emma, where that would take us.

I can't wait to find out.

walking in place

Emma knows what I need. I sat down a week ago to start writing this post, thinking about how to sum up the whirlwind the past week had been, and she came and handed me the card I gave her for Easter. The musical card that, when you press it, plays "Walkin' on Sunshine."

I pressed it, and she beamed.

She was back 30 seconds later, and this time she tugged my hand, pulling me into her room, where she plopped onto the floor.

"What do you want, Em?"

She handed me her shoes, I set them in front of the appropriate feet and she put them on. And we went outside so she could ride her trike around the block. So I could blow bubbles for her to chase. So we could water the flowers (and each other, inadvertently).

When we came back in, I had some perspective.

I'm a terrible housekeeper. I'd rather pick up a book than a feather duster, and having a few dirty dishes in the sink doesn't bother me as much as it probably should. I go through cleaning binges every so often -- where once I get going, I find it impossible to stop until the whole house looks as good as the area I started with. (Clearly, it's much easier to not start.)

Follow-through can be a problem for me. Except when it comes to Emma.

For the past five months, I've been following through. And following up. And checking in. And freaking out. Appointments, paperwork, phone calls: none of them are my favorite things, but they've all had a purpose. And it paid off, at long (long) last.

Now Emma has an insurance policy that will pay for her to get applied behavior analysis. Here in town. At a center where someone's focus, every day, will be setting goals for Em and helping her reach them. Someone who's trained to work with kids like Em, in a one-on-one setting where she won't get lost in the shuffle.

Finally, finally, finally.

I lost sleep during the wait. I panicked on a regular basis that things wouldn't work out, that somehow I wouldn't be able to do this for her. But then the letter came. "Approved." I read it probably 17 times to make sure it was true, that the word I'd been waiting for was actually printed on the page.

I rode that high for a week, until another fairly major wrinkle presented itself. It felt like I'd run a marathon and exultantly crossed the finish line, only to be told there was another marathon ahead of me, and I had to run it that very moment.

I hate running, but I love my girl madly. I might be crawling by the time we get this all sorted, but the forward motion will continue. I will keep the promise I made a couple years ago, when I leaned my forehead to Emma's in the middle of the grocery store and told her we'd be okay. And that means I'll see this through, because I believe it's what she needs and it's my job to make it happen.

All the best of what she's done is yet to come. Just watch.

nothing to see here

You could probably say that I asked for it when I wrote these words to Emma.

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. 

I wasn't expecting a phone call the day after that post was written, asking me to do a television interview about autism awareness and what it means, to me and to Emma and to the entire local autism community, to have ABA centers coming to the area.

"So we'd like to interview you!" the reporter said.

"On camera?" I asked stupidly, knowing she was going to answer in the affirmative and fruitlessly wishing otherwise.

Oh, how I wanted to say no. Anyone who knows me at all knows how shy I am, that I would rather shove the spotlight in any other direction than have it on me.

That was the thing, though - they weren't asking to put it on me. They wanted to talk about autism and Emma. They wanted to make people aware. And I'd just written that I wanted to do the very same thing.

So I said yes, and then I sent several panicky text messages, ranging from "Cameras are coming to my house. Help!" to "I'm not sure what just happened, but I think I'm going to be on TV."

And so I was, stammering and fumbling my way through the reporter's questions, wishing I could have written out my own script beforehand, watching Emma dart in and out of the room while I shoved a cat off my shoulder. (Yes, that really happened, and it was fortunately edited out ... unlike the part where I mixed up the centers' names. I'm not being modest when I say I'm a terrible public speaker.)

I was really grateful to have the opportunity to be a (somewhat trembling) voice for autism. And I was also really, really grateful when the reporter left my home and took her camera with her.

But more than that, I'm glad there was a reason to do the interview at all, that there are now two centers in the community providing ABA therapy. I'd like nothing better to see Emma enrolled at one very, very soon. Maybe when the months of hoop-jumping that have been required to make that happen pay off, I can share the good news.

Here's hoping.