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.