the man with the plan

Last fall, I was sitting in the local autism support group meeting, listening to the guest speaker, and I came to a realization.

I can't ever die.

The speaker at that meeting happened to be a financial planner who's devoted his career to helping parents of kids with special needs make plans for their children's futures.

"What would your child's life look like if you weren't here tomorrow?" he asked the room. It was a verbal gut-punch. It's kept me up at night more than once since then, because the answer to that question is pretty bleak.

Laws of metaphysics and life expectancy aside, I'm kind of serious. I have to be here. I'd never want to imagine my world without my Emma, but it's just as impossible to imagine hers without me.

Don't get me wrong: Emma is loved. Oh, my girl is loved, and well, by pretty much everyone who knows her. That's the thing, though -- who knows her like I do?

I know that she needs to have her green apples peeled, or else she'll carefully chew off the skin and bring it to you in tiny pieces, smooshing it into your hand (never the carpet). I know that there are three things she can't fall asleep without: her Nemo, her penguin and her phone. And I know that sometimes when she stands in front of me silently, not asking for a snack or a drink or a movie, what she wants is a hug.

Now I'm not the only one who knows those things -- you're taking notes, right? -- but that's the tip of this 6-year-old iceberg. The what-ifs are unthinkable, but not thinking about them is worse.

Normally, I'm a fairly terrible planner. It's not my thing, it doesn't pique my interest, it's best left to someone else. Emma, of course, is the exception to that (and so many other) rules.

I'm going to see that speaker from last fall tomorrow.

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.

"EMMA, NO!"

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

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.

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. 

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 --

"MOMMY!"

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"

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.)