28 December 2011

falls apart

You gotta be hard, you gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm, you gotta stay together

The sensor bar for the Wii is pretty easy to dislodge from where it perches atop the TV. Em's curious fingers proved that tonight, and it came crashing down. She darted a glance at me and bent to scoop it up, and I got up to survey the damage. There was none -- I simply had to put it back in its place, and I said gently, "Em, it's not for you to touch."

Most of the time, a quiet reprimand or redirection is easy for her to handle. Often she's immune to a raised voice -- like my panicked cross between a scream and a yell when we walked outside to get in the car, like we do every day, and instead of going to her door, like she does every day, Em darted down the driveway, straight for the alley. A car was coming.


She stopped where she was, still smiling, and trotted back to me.

Tonight, her routine was missing, and she was tired, and ... well, and any other number of factors I'm not aware of. It didn't matter that I wasn't angry. It didn't matter how soft my voice was. She was undone.

Herald what your mother said
Read the books your father read
Try to solve the puzzles in your own sweet time

Sometimes I can't reach her. I can hold her in my arms and rock her while she sobs, and we occupy the same physical space, but she's in a different place entirely. And as much as I love her and as much as I want to fix it, sometimes I simply can't.

Those are the worst moments for me, when my sunny girl's composure dissolves in front of me. It usually happens in a matter of seconds. Even when I act as soon as I see her starting to melt down, mostly it's too little, too late. She's crying helplessly. She's on the floor of the mall, her limits stretched. She's pushing back against me as I try to guide her forehead onto the guide at the eye doctor. And I feel, in all those moments, like I've failed her.

A hug should fix it, right? I held her tightly tonight, thinking of Temple Grandin's hug machine. If deep input would have helped, I would have stayed on the floor for hours, soothing away the hurt. She pulled away and ran to the couch, arms flailing, red-faced, and started to jump up and down. I kept talking to her.

"I'm not mad, baby. It's okay. It's okay."

After a few minutes, she'd burned through the emotion, and she settled into her chair, eyes refocusing on Nemo swimming across the television screen. She tugged a penguin into her arms and pulled her blanket over her head.

She fixed it for herself, because I couldn't help her. The only thing I could do for her was to let her be, since she knew what she needed. As her mom, I want to give, do, be everything for her. Understanding her challenges that deep-seated need. Sometimes the best way I can love Em is to take a step back.

So I'll just wait. And I'll be here when she wants to have a dance party, burrow her head into my shoulder or just slip her still-tiny hand into mine.

All I know, all I know, love will save the day

07 December 2011

pretty good year

If there was such a thing as a sea of nostalgia, all the time I've spent remembering this week would have turned me into a human prune.

My girl turns six tomorrow. And apart from the constant thought "my baby is growing up, and it's happening too fast," I've spent most of my time reflecting on where we stand now.

A year ago, her words were so, so rare.

A year ago, I wasn't sure I'd ever see Emma play with another child.

A year ago, I was shuttling Em to speech and OT, using so much family leave time that I owed my company money at the end of the year.

A year ago, I couldn't envision the day where she'd be thisclose to dressing herself independently.

A year ago, thinking about her future made me bite my lip. Hard. The resources I knew she needed weren't available yet. The insurance issues looked fairly insurmountable. And the thought of kindergarten ... I tried not to think about kindergarten.

But that was a year ago. Now?

Now she's in a full-time ABA program, with therapists and program managers who cheer just as much at her progress as I do. I am not the only one who gets all teary when she does something amazing. She is in a place that makes that growth possible and then celebrates the heck out of it. (And speech and OT are part of that package. One integrated approach, with a team of people who work together to work with my daughter. All in the same facility.)

Now I've gotten to watch her acknowledge another child, using his name. I've seen her play a game with a peer, her dimples flashing as she laughs. She has programs designed to help her build those precious social skills. Now I start to believe that someday she might have friends.

Now she slides on her own pants. And her socks. And her shoes. (Not always in that order.) The day is coming where I'll be able to put an outfit on her bed and let that be my only contribution to getting her dressed. That'll be a good day.

And her words. The more words she gains, the more mine fail me. It's a gift that she's beginning to be able to boss me around. "I want fish." "All done; I go play." "Watch Nemo." I find it nearly impossible to say no to her, even when we've already watched Nemo 73 times.

I am in awe of the leaps and bounds forward. She works so hard. I can only hope that all the changes I see are as amazing to her as they are to me. I hope she knows she's growing and reaching and achieving. I hope it feels good.

I hope she knows, just like I do, that it's been an amazing year. "Pretty good" falls short.

It seems impossible that I've only loved her for six years. Happy almost birthday to my sweet, sweet girl.

04 December 2011

the button

There's a quote by Norman Vincent Peale that I particularly like this time of year.

Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.

I was putting Emma's pajamas on tonight after her bath -- a task she's started to really help with recently. Pants? Those are her responsibility. I lay them in front of her, and she takes it from there. Tonight's PJs had a top that buttons, so I stepped in after she pulled her arms through the sleeves.

I buttoned the first three buttons, and then Em's hands slipped past mine to grasp both sides of the shirt. Her little fingers positioned themselves on the button while the other hand found the opening. 

I sat still in front of her, afraid to move and distract her focus. I kept my hands in my lap as hers worked. And it was work she was doing, as her eyes followed her fingers and she coordinated her motions. There was effort. There was concentration. 

And then there was a button sliding through its hole. There was success. And I pulled her into my arms, tears forming, celebrating the moment.


Several weeks ago, I sat in a room with other moms like me, while our children played in a gym and swim program designed just for them. We introduced ourselves and we talked about the beloved kiddos that had brought us there. And then we each shared the most important thing we've learned since we became the parent of a child with special needs.

I had so much to say; we all did. All of it's important. But the thought that formed first is the reason for this post.

I told those other moms that I have learned to savor every step forward. That there's no such thing as a small step, because no steps are guaranteed. I don't take Emma's progress for granted. I get excited about the fact that we drive by golden arches and a tiny voice pipes "McDonald's?" from the backseat, because it's a word. It's a choice. It's communication. And it is no small step.

So I cry happy tears when my girl buttons a button on her own for the first time. I write it down, because I want to remember how this felt. All the insignificant details-- that she was wearing her penguin pajamas, her hair was drying into tendrils around her face and that she grinned so hugely when I hugged her. 

Emma buttoned a button. That would be beautiful to me even if it wasn't Christmastime. 

27 October 2011

we steal a perfect moment

One evening in the not-so-distant past, I picked up the phone and called my mom.

"Okay, I have a weird question for you."

Having been my mom for 32 years, she's used to that sort of lead-in, and she told me to go ahead and ask.

"Do you think Em loves me?"

I had a reason for asking. I'd just picked my girl up at the babysitter, and I got the sense when I walked in the door that she would've been just fine staying there. Possibly forever. She was far from upset to go with me, but I had to bribe her with promises of supper to interest her enough to abandon her play.

When her dad comes to pick her up, she practically vibrates with joy. When grandma visits, I wonder if it's possible for a smile to actually split someone's face open. When it's me -- eh. She takes my hand and traipses alongside, but there's no joyous vibration, no wow-your-cheeks-must-hurt smile.

It makes sense. I'm always with her. She starts and ends her days with me; she knows I'm going to be there. There's no surprise when I show up. I am constant, I am boring, I am Mom.

Oh, but today. Today, she had a hearing test, so I picked her up instead of the babysitter. And I picked her up early. When her therapist led her out to the lobby and said, "Emma! Who's here?" she took half a second to gape at me, and then --


And my girl galloped across the room to me and flung herself into my arms, beaming that sunshine smile of hers. Her therapist reminded her to get her backpack, so she obligingly headed down the hall to her cubby. Halfway there, she turned back, making sure I was still there. When she saw that I was, she grinned. She bounced. She absolutely wiggled with delight.

The backpack retrieved, she darted back to my side and took my hand. I was ready to prompt her, but she stole the word from my mouth, tugging me forward to the door.

"Bye!" she said loudly, clearly impatient to get her farewells done so we could just LEAVE, ALREADY.

The center's staff was laughing at her exuberance, but I was just soaking it in. As if she knew exactly how much I needed that boost today, she met me with that gorgeous smile and a hug. A real hug -- not her usual, which is her backing into your arms so you can embrace her without reciprocation.

It was some kind of wonderful. No, she is.

"I can't remember all the times I tried to tell myself / To hold onto these moments as they pass"

14 September 2011

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.


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.

01 September 2011

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.)

27 July 2011

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."


"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.)

28 June 2011

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.

19 June 2011

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.

24 May 2011

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.

19 April 2011

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.

06 April 2011

this life is a beautiful one

 (Originally posted on Mar. 18, 2009, about three months before Emma's diagnosis)

It was a beautiful day here yesterday, so after supper, Emma and I walked to the park in our neighborhood. Emma made a beeline for the slide, and as she haltingly climbed the steps, a smiling face appeared beside her.

"Hi!" chirped the little girl, who looked to be a few years older than Em. "Hi! Do you want to play with me? Do you want to slide?"

Em being Em, she gave the newcomer a distracted smile and kept climbing. The girl looked to me, and I nodded. So as Em climbed, the girl darted ahead and bounced with excitement. She helped Em sit down, and the next thing I knew, they were both coming down the slide. Headfirst.

Emma was laughing; her smile was radiant. She and her new friend-- whose name I never got-- went down this slide a few times, and then the older girl's eyes went to the bigger slide. The twisting, curling slide, with 10 steps instead of 5.

"Emma, Emma! Do you want to go on the big slide?"

I bit my lip. "Well ... okay. We can try."

And so the older girl darted up the stairs, and Em painstakingly started to climb, with me right behind her. She neared the top-- after a mere 17 reminders to keep both hands on the rails-- and I congratulated her.

"Emma! You did it!"

Her new friend looked at me archly and reached out a hand to help Emma up. "Of course she did. She's a big girl."

Of course she did.

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.

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.