tag:blogger.com,1999:blog-43082957106940946852024-02-08T04:01:18.332-08:00Sunny Days OptionalKerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-4308295710694094685.post-8021745236490878042013-07-24T17:26:00.001-07:002013-07-24T17:26:56.761-07:00so much to sayI've left this space alone for months now, but not because there was nothing to say. There was too much, and I couldn't find a place to start.<br />
<br />
I've found a place now.<br />
<br />
It was a hotel, one with an indoor water park attached. It was going to be the perfect mini-getaway for Emma and me, rolled into the long Fourth of July weekend. We needed a break, and we needed it badly.<br />
<br />
We walked down what felt like the world's longest hallway to get there, Emma tugging my hand impatiently. I'd told her we were going to swim, and though she didn't know where the pool was, she was on a mission to find it. When we did, and pushed open the heavy double doors, her face lit up. It was all I could do to get her flip flops off before she darted for the shallow water.<br />
<br />
I followed her, because I always follow her.<br />
<br />
If she's in the water, I'm in the water.<br />
<br />
There was a lazy river, a pool, and a play structure with stairs, water slides, sprinklers and hidey holes. Em bee-lined for the stairs, but hesitated at the top of the slide. I stood below, coaxing her down. Nothing doing. She turned away.<br />
<br />
The next time, I held her hand as she came down. And then she was off. Pattern formed. She'd climb up-- pausing every time to duck down and stick her face in the sprinkler on the steps-- and slide down. The steps were on the opposite end from the slide, and I realized quickly that if I followed her up, I wasn't there when she came down.<br />
<br />
So I found a spot where I could see her going up and coming down. She'd grin at me as she splashed past to go again. We were having a great time.<br />
<br />
I watched her duck yet again, and she stayed down a little longer this time. I stepped forward, knowing I'd see her creating a traffic jam on the stairs, face in the water.<br />
<br />
But she wasn't there.<br />
<br />
I took another step forward, hurrying now, twisting to see the top of the steps. I ran up to see if she was at the top.<br />
<br />
She wasn't there.<br />
<br />
I ran back down, around the whole structure, checking every face I passed, searching frantically for the one-shoulder paisley swimsuit with the pink flower. I looked at the sitting area, where we'd put our towels.<br />
<br />
And she still wasn't there.<br />
<br />
The panic was choking me, and I was going to grab a lifeguard and start screaming, even though my throat felt too thick to form words.<br />
<br />
Then I saw her, directly across from me. In the pool.<br />
<br />
She can't swim.<br />
<br />
I ran, and I jumped in, and I grabbed her to me, squeezing until she struggled free. My tears probably looked like the drops of water on anyone else's face. The water was four feet deep where she went in. She could touch bottom ... but she didn't know that.<br />
<br />
Probably you've heard some of the news stories, right? The tragic stories about some of the autistic children who've wandered and then drowned? If you've read them, maybe you've read some of the commentary from people who say "their parents should have watched them". People who blame in the face of tragedy, because-- well, no, I don't know why. Does it make them feel like better parents to shame someone else?<br />
<br />
Here's the thing. If you know me, I hope you think I'm a good mom. My friends-- yes, even the ones who have autistic children themselves-- tease me for tending toward overprotective. I am not the mom lounging in the sun at the pool while my girl splashes in the water.<br />
<br />
If she's in the water, I'm in the water.<br />
<br />
And this still happened. My phone was in the hotel room. I wasn't chatting with a friend. I wasn't half-watching from a chair. I was there. I was <i>right there.</i> And I still lost her. It was maybe 30 seconds-- the longest of my life, by far-- but it could have been forever. Change a few of the variables-- the depth of the water, how quickly I noticed, how quickly I found her ... and the outcome is the unthinkable that so many other families have already experienced.<br />
<br />
It could have been us. It could have been Emma.<br />
<br />
The moral of the story here isn't how lucky we were. It's how quickly it happened. How quickly it <i>can and does</i> happen. To good moms who are paying attention, even. I never read one of those stories and thought "those awful parents"-- I always thought of Emma's affinity for water, and how stealthy and quick she is when she really wants something. And now it will hit even closer to home, because I've experienced the threat of that same loss.<br />
<br />
It could have been Emma.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-53002487523448992832012-12-12T16:19:00.001-08:002012-12-12T16:19:20.012-08:00shine until tomorrow<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;"><i>"And when the night is cloudy, there is still a light that shines on me / Shine until tomorrow, let it be"</i></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">It was maybe a month ago. Emma came to me where I was sitting on the couch and climbed into my lap, putting her arms around me and resting her chin on my shoulder. She was smiling, all giggles and dimples.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I felt myself flinch. Waiting. Just waiting for the moment to change into one that's become all too common: her chin, slamming insistently into my shoulder. Her face, red and streaked with tears. Her body, arching forcefully backwards, seeking input from the floor, my chest, my lip.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I was waiting for the breakdown. And that realization was a shock as I held my daughter in my arms and her soft cheek rubbed against mine. I wasn't fully in the sweetness of that moment, because I didn't trust it to last. (It did, in that instance. She let me hold her until something caught her attention, and she clambered off my lap without fuss.)</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I've been struggling for months. Struggling to reconcile this drastic change in behavior with the sunny girl I know so well. Struggling not to take it personally, because I know no malice exists in her. And struggling to figure it out-- the function, the right intervention and what brought on this shift.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I'm still struggling, and there are no answers yet. Not for want of trying, though-- her entire team is baffled. As different symptoms and behaviors appeared, we visited the ER. Her pediatrician. Her dentist, which led to emergency surgery to fix an issue that we thought might be at the root of everything.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">It wasn't. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">The worst part isn't my struggle. It's hers. It's seeing the bruises on her jaw and chest and legs and knowing she put them there. It's having watched her put them there without being able to stop it from happening, and without knowing why.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I mailed out Christmas cards this week. On the front, there's a collage of smiling Emmas, with the caption "merry and bright". Those are two words I would easily use to describe my girl ... except, now? It feels ever so slightly hypocritical. Sometimes, even most of the time, she IS merry and bright. But a good number of the people receiving those cards have no idea about the other times, when that beautiful smile is absent and those blue eyes are full of frustration. Should I have included a picture of that girl?</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I don't write an annual Christmas letter, and I never have. I feel like they're a too-glossy version of the year, covering only the highs and skimming over the lows. Who cares about the lows, right? Well, hopefully everyone who cares about you does.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">So here's our Christmas letter.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Dear loved ones,</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">What a year it's been-- both amazing and awful. Emma has made incredible progress. Some of it's stuck. And sometimes she and I are both stuck in this new behavioral rut, where she acts in ways I don't recognize and I try my damnedest to see her through.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">The area continues to add activities and events designed for kids like Emma. Our church had a sensory-friendly Easter egg hunt, and it was fantastic for her. She still loves the gym+swim program (although we all know she'd be happier just staying in the water).</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Halloween was a high-low. She was the world's most adorable penguin, and Grandma and I took her to the zoo event. She spent 15 minutes watching the 'other' penguins, completely transfixed and blissed out. Those 15 minutes were worth the price of admission. Good thing, because then I decided we'd try her first roller coaster ride. The short line did her in, and she was a sobbing, shaking heap of girl by the time we boarded. The coaster ride itself? Total hit. But it was done too soon, and we ended up on the ground, rocking back and forth as she cried out all her frustration. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Potty training was our highest high. She caught on quickly, and it has changed both our lives. Now? There's been some sliding backwards, and I want to think-- need to think, maybe-- that everything is connected, that whatever's causing the behavior has to also be causing this somehow. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Her team continues to amaze me with their dedication to helping her achieve, to being her best ... and when things are rough, to figuring out what the heck is going on so we can just help her get through the day. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Sometimes just getting through the day is enough. And we have gotten through each day this year-- maybe not always with a ton of style or grace, but always with enough love to see us through. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">I can't answer the whys, and I can't shift her world to eliminate everything that causes her to struggle. I can only think back to something I read, where the author said, "I want to be stronger than the challenges are hard."</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">So that's my Christmas wish-- for me, for Emma and for all of you. </span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">Love,</span></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;">Kerry</span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;"><br /></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial; font-size: 14px; line-height: 20px;"><i>"There will be an answer, let it be"</i></span><br />
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>
<span class="Apple-style-span" style="font-family: 'Segoe UI', Corbel, helvetica, verdana, arial;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-46340566130192907782012-10-21T16:39:00.000-07:002012-10-21T16:39:04.824-07:00the kindness of strangers<i>"Feeling gratitude and not expressing it is like wrapping a present and not giving it." - William Arthur Ward</i><br />
<br />
It was less than 48 hours after Emma's emergency dental surgery, and as I drove to pick her up, I was so relieved to have a fun activity ahead for her. Kiddo'd had a rough, painful couple of weeks, and the gym+swim program would be just the thing.<br />
<br />
First she needed to eat, and I had a plan for that, too -- Moe's, her favorite place, where she asks for a "'dilla" every time we drive by. A quick, easy win.<br />
<br />
We pulled into a space right in front, and Em was already wriggling in her seat, the smile spreading across her face. I picked up my purse and frowned at how light it felt, and then, even before I looked, my heart sank and the furious inner monologue began.<br />
<br />
<i>Really, Kerry? Where's your wallet? You know where it is. At work. In your desk drawer, where you haphazardly tossed it after ordering lunch. If you'd taken half a second to make sure it was in your purse, but no. You couldn't be bothered.</i><br />
<i><br /></i>
A quick, panicked search proved me right: no wallet, no debit card, no cash. Nothing but a checkbook. We might barely have time to drive across town and back-- a 40-minute round trip-- get our food and dash home to get Em's gear, but that wasn't a viable option.<br />
<br />
Pulling away from Moe's without a quesadilla would have triggered a (completely understandable) meltdown. I couldn't do that to Em, not after what she'd already been through that week. Not when it was my own stupid fault, and not if there was any possible way around it.<br />
<br />
"Hang on just a second, babe!" I told her in my brightest voice, grabbing my checkbook and running inside. I went straight to the register and waited, ready to volunteer a check written for triple the amount of our food, if it only meant I could bring Emma inside for her beloved 'dilla.<br />
<br />
"Hi there!"<br />
<br />
My head jerked up, and instantly, I knew somehow it was going to be okay.<br />
<br />
--<br />
<br />
As her teeth began to really bother her a few weeks ago, getting Em to eat had been an issue. So anytime she expressed a preference for something edible, I tried to make it happen. (Verbally requesting is a big enough deal, when it becomes a habit, I'm not about to discourage it.) So we'd become regulars at Moe's-- and one employee had noticed.<br />
<br />
"Hey, you guys again!" she said once.<br />
<br />
The next time, she bent to smile at Emma, making deliberate eye contact. "What's her name?" she asked, and when I offered it, she said, "Hi, Emma!"<br />
<br />
She said "Hi, Emma!" the next time we came in, too.<br />
<br />
And the time after that, she came around the counter to offer her greeting, hand outstretched. "Can she have this?" She held a neon green rubber bracelet, stamped with "Welcome to Moe's!" I said yes, and she handed it to Emma, who beamed.<br />
<br />
I'd been impressed enough when she bothered to ask Emma's name. My surprise when she remembered, and continued to use it-- it's so rare these days to find that kind of customer service. Especially in a busy restaurant where the amount of time you spend interacting with someone is less than a minute, and especially when the girl you're talking to might not answer you back.<br />
<br />
But Emma made an impression. And this employee took the time to form that connection. As brief as the exchanges were, she never tried to force Em to respond. She just smiled and accepted, and we kept coming back.<br />
<br />
---<br />
<br />
It was her friendly face looking back at me in my panic, and I blurted out my story. "I left my wallet and didn't realize ... I know you don't take checks, but I have checks ... she won't understand if we have to leave ... Can I write a check? Please?"<br />
<br />
She was smiling when she told me they didn't accept checks, and I thought I was going to cry in front of her, until she continued.<br />
<br />
"Don't even worry about it. I've got you. Go get Emma."<br />
<br />
I think I blurted out that she was awesome as I sprinted back to the car to get my girl. We ordered, and Em's wide eyes watched the food being prepared, and at the register, I pulled out my checkbook again (along with a Sharpie, the only writing utensil I had in my purse-- clearly my best day ever).<br />
<br />
She shook her head again. "Seriously! It's fine." I thanked her again, and we went on. Em devoured her dinner, having no idea how close her day had come to being ruined.<br />
<br />
But I knew, and it was no small thing. I wrote an email that night to Moe's corporate headquarters, the best way I could think of to say thank you being to let someone in charge know that one of their employees was making an active difference in a little girl's life, and that difference had earned them the loyalty of two customers for as long as they stayed in business. I admitted that I didn't know the name of the girl I owed this gratitude to, but promised to learn it.<br />
<br />
Today we went back, and as we paid, I confused the guy at the register by asking him to overcharge me by $10. I explained, and he shook his head. "Nah, it's okay," he said, then asked if I remembered who the manager had been.<br />
<br />
I shrugged, then glanced toward the back of the store and realized that Emma's friend was working. I pointed: "It was her!"<br />
<br />
He called to her, and she turned, smiling at the sight of us, and we both started talking at once.<br />
<br />
"I can pay now!" "Don't even worry about it," she told me, and then went on. "You didn't have to write that email-- our vice president sent it to me."<br />
<br />
"And you didn't have to do what you did. But you saved her day-- you really have no idea."<br />
<br />
She does now. And now I know the name of the girl who spared a few seconds to be a little extra kind to my girl, and who went the extra mile to fix an unfixable situation.<br />
<br />
Thank you, Jess.<br />
<br />
<br />Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-35446061662591032432012-09-24T17:01:00.003-07:002012-09-24T17:02:39.002-07:00okayI was going to channel my not-so-inner mama bear for this one. I had all sorts of righteous indignation and sarcasm and just plain anger. And before I sat down to write, I tucked my girl into bed.<br />
<br />
She gathered the stuffed animals that accompany her every night and waited patiently for me to pull her covers up to her chin. I leaned in to kiss her, and she beamed at me. I opened my mouth to say, "I love you," and she beat me to it.<br />
<br />
"Love you," said that soft, beautiful voice.<br />
<br />
And then there just wasn't any anger left. There was just Emma.<br />
<br />
Dear beautiful girl,<br />
<br />
Some people don't get it. They don't get you. They can't find room in their view of what the world should be for you, and so they can't drum up an ounce of compassion or patience for a little girl's tears.<br />
<br />
I'm sorry, baby.<br />
<br />
People are kind of terrible sometimes, and I can't explain that to you. That's not your fault, and all I can do is tell you that you're okay. Being you is okay. It's okay to cry if you're sad or you're frustrated and you don't have the words to say that. (It would also be okay for your mom to deliver the tirade of a lifetime-- and then some-- to the woman who suggested someone should shut you up. Just sayin'.) Feel what you feel, Em, and show me how you need to. It's always going to be okay. Promise.<br />
<br />
I love who you are. Your irrepressible sweetness, the unending giggles, the driveway dances that make me look forward to mornings-- even tonight, when you thoughtfully said, "Blueberry," then picked one off your plate and giggled as you marched it over to the trash can before dropping it in. Even when you repeated that routine 17 more times. Even then.<br />
<br />
There is nothing mean in you. You will never deliberately hurt someone. That makes it so much harder for me when people try to hurt you with the things they say. I understand a lot of things, Em, but how someone can be cruel to you will never be one of them.<br />
<br />
Those people, though? They don't matter. You are loved, and I know you know that. You are loved by a very large number of people who get you, whose lives are touched and bettered by knowing you.<br />
<br />
I am so much better for knowing you.<br />
<br />
You teach me what it means to be patient and compassionate, and you force me to live that knowledge out. Because of you, Em, I will never be the woman in the store telling someone to shut their child up. I'll always see those tears and know that I can't know the whole story from what the surface tells me.<br />
<br />
Loving you is the best kind of overwhelming. I never knew how my heart could clench when you look into my eyes and really see me, when you grin in just that way and time freezes, and there is nothing in the world but those huge blue eyes and that smile.<br />
<br />
You're my girl, and I love you. And you're more than just okay. You are perfect to me.<br />
<br />
To the moon and back, baby.<br />
<br />
<i>Pretty, pretty please</i><br />
<i>Don't you ever, ever feel</i><br />
<i>Like you're less than, less than perfect</i><br />
<i>Pretty, pretty please</i><br />
<i>If you ever, ever feel</i><br />
<i>Like you're nothing</i><br />
<i>You are perfect to me.</i><br />
<span class="line line-s" id="line_9" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; font-family: arial, sans-serif; font-size: 12px; font: inherit; line-height: 15px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 5px; padding-right: 5px; padding-top: 0px; vertical-align: baseline;"><br /></span>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-47753090654227657702012-08-20T17:46:00.000-07:002012-08-20T17:46:08.429-07:00walk on<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span>
<span class="line line-s" id="line_4" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; font-size: 12px; font: inherit; line-height: 15px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 5px; padding-right: 5px; padding-top: 0px; vertical-align: baseline;"><i><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Go ahead, release your fears / Stand up and be counted / Don't be ashamed to cry - Des'ree, "You Gotta Be"</span></i></span><span class="line line-s" id="line_4" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; font-family: arial, sans-serif; font-size: 12px; font: inherit; line-height: 15px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 5px; padding-right: 5px; padding-top: 0px; vertical-align: baseline;"><br /></span><span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: 12px; line-height: 15px;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-size: 12px; font: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><br /></span></span><br />
Maybe the first thing I need to say is that this life is not a tragedy. Mine isn't, and Emma's certainly isn't.<br />
<br />
If I said that my daughter's diagnosis with autism had ruined my life, I'd be lying. Changed it, certainly, but this is the path we're walking, and so forward we go.<br />
<br />
I'm thankful for the diagnosis. I want to know. Knowing not only gives Em access to services, but it gives me a lens through which to see her, to try and start understanding.<br />
<br />
It's not the whole picture; it's a word.<br />
<br />
She has autism. She is autistic. It's not a shameful secret, and it's not an excuse. It just is. It doesn't hurt me to say that out loud.<br />
<br />
What hurts me is when her autism hurts <i>her.</i> When her pain is so big that she doesn't have words, and she forms a tiny fist, driving it into her mouth until her lips are bleeding. It hurts me that's the only way she can tell me she hurts.<br />
<br />
I've read a lot recently about the damage that parents of autistic children do, in some eyes, by saying that it's hard, by admitting that sometimes they hurt. And while I agree that the language we use to say that is absolutely important, I refuse to agree that saying it at all does damage to Emma, or that it means somehow I love her less.<br />
<br />
It's not a tragedy, and it's not a cake walk. It just is.<br />
<br />
The inimitable Jess at A Diary of a Mom wrote on <a href="http://adiaryofamom.wordpress.com/2012/04/17/thoughtful-not-scrubbed/">this very topic</a> -- "Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she's made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day."<span class="Apple-style-span" style="color: #666666; font-family: Verdana, Arial, sans-serif; font-size: 11px; line-height: 17px;"></span><br />
<br />
Call me crazy, but I think those stories have to be told. The services, resources and activities in our community are growing, and they should. And that growth needs to continue. For people to help, they have to know how to help, and they want to know why.<br />
<br />
The why is that sweet, sweet face that greets me with a smile in the mornings, the one who clambered onto my lap tonight before the sitter had even left, throwing her arms around my neck. The why is my girl, whose spirit is indomitable, whose self-inflicted bloody lip and tear-filled eyes couldn't keep her from asking for "tickle!"<br />
<br />
Most of the time, she runs down this path at a speed that leaves me breathless, that ever-present smile making it easy for me to go along with her. Sometimes she trips, and we pause, and I take that moment to consider how long this journey is. Sometimes I get tired, and sometimes I snap at cashiers when they ask my daughter, "Can't you talk, honey?" Sometimes it's hard, and some days it's really hard. And I won't feel guilty for saying it or for feeling it, because I will always love her enough to keep going. Because it will always be worth it to keep going.<br />
<br />
It just is.<br />
<br />
<br />Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-32425408113297466662012-07-13T18:18:00.000-07:002012-07-13T18:18:11.843-07:00The shine<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><i><br /></i></span></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i>Act as if what you do makes a difference. It does. -William James</i></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><i><br /></i></span></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">She was already under the covers, face pushed into the mattress, shoulders shaking. </span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">"Emmmmmmma," I whispered. "Give me your face!"</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">Giggling, she flipped over to face me. "Oh, Mommy!"</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">It was such an appropriate, conversational response that I froze for a second before swiping the washcloth over the ketchup on her cheek.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">"Oh, Emma," I said back to her, matching her tone.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">And then it was a game. "Oh, Mommy!" "Oh, Emma!" Both of us laughing, smiling. Both of us in the same moment.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">She nestled her head onto my shoulder and snuggled close, content to let me hold her.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<br />
<div style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span></div>
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i>The greatest good you can do for another is not just to share your riches but to reveal to him his own. -Benjamin Disraeli</i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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. </span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">I kid you not, that parent/teacher conference involved the incredulous phrase: "She does know things!"</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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. </span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;">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.</span></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><br /></span></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;">Still. We'll miss her.</span></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><br /></span></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><br /></span></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i>I've seen and met angels wearing the disguise of ordinary people living ordinary lives. - Tracy Chapman</i></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><br /></span></span><br />
<span class="Apple-style-span" style="color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><span class="Apple-style-span" style="border-collapse: collapse;"><i><br /></i></span></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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. </span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">You changed her life, and that's not even an exaggeration. <i>You changed her life. </i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">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.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">I always, always believed in Emma. And then you did, too.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">Thank you seems insufficient. But I think you know how deeply I mean it.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">Thank you.</span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"></span><br />
<div style="border-collapse: separate; color: black; font-family: Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i>Unless someone like you cares a whole awful lot, nothing is going to get better. It's not. -Dr. Seuss</i></span></div>
<div>
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span></div>
<div>
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><i><br /></i></span></div>
<br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #330000; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-67958733471253637462012-07-09T15:00:00.000-07:002012-07-09T15:00:01.960-07:00Being Real<br />I am fierce, and I am fragile.<br /><br />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 <i>was</i> 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.<br />
<br />I want everyone to get it.<br /><br />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.<br />
<br />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.)<br />
<br />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?"<br />
<br />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. <br />
<br />Emma is all I know, and all I want to know. <br /><br />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.<br />
<br />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!"<br /><br />
I'm going to go home tonight and read The Velveteen Rabbit to my daughter, who will never be ugly to me.<br /><br />"<i>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."</i>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-28692396770834130352012-04-10T16:23:00.000-07:002012-04-10T16:23:13.528-07:00calling all cheerleadersWhether you go for awareness or acceptance, if you love someone with autism, April is the month to say it loud. (Not that we don't do that the other eleven months.) I told a friend the other day that I'd been struggling to write a post here, because the weight of the month made it seem like I had to find something hugely important to talk about.<br />
<br />
Then I thought about it a bit more, and I can't think of anything more hugely important than Emma herself.<br />
<br />
Autism awareness and acceptance both start at home. If I don't get it, if I can't love Emma for who she is, how can I expect that from someone else?<br />
<br />
She is ridiculously easy to love. Sweet spirit, beaming grin, light-up-your-day laugh: she's got them all. That part doesn't need my help. To know her is to love her at least a little, and I don't think I'm exaggerating. Much.<br />
<br />
It took some time to get to the place I am, where every milestone gets a standing ovation. Even -- or especially -- the ones that aren't at the top of the Things Hoped For list.<br />
<br />
Speech and potty-training duel for pride of place on that list. And I get it. I was there. I was the mom filling out paperwork before Em started full-time ABA, thinking about the gains I knew she'd make.<br />
<br />
No more diapers. Full sentences.<br />
<br />
It was my list, too. I wanted those things for her -- I still do. But that was about my idea of what progress looked like, leaps forward that would make my role easier.<br />
<br />
For the past 10 months, I've been going to parent meetings every six weeks, getting a fact-filled report on what Emma's doing every day. How she's growing every day. How hard she tries ... every single day. I'm the only one there, soaking in all that information, looking at the columns and lists and pages of things Emma's mastered.<br />
<br />
And so I get it when someone asks if we're still buying diapers. I understand the sympathetic grimace when your "is she talking more?" is answered with me see-sawing my hand.<br />
<br />
But I know that you'll agree with me when I tell you that Emma herself is not less because of her autism. So go with me on this one, too: her progress doesn't mean one bit less because it doesn't look how we expected it to. It's there. She is leaping and bounding forward, and it's kind of a thrill to watch it happen. It makes me want to pick up a set of pom-poms and just follow her around all day, cheering her hard work and its rewards.<br />
<br />
Get a set of your own. Cheer with me. Things like this are happening:<br />
<br />
<i>posted on Facebook, March 12:</i><br />
<i><br />
</i><br />
<i>"Yesterday, at Target, Em was in the cart with a huge smile on her face. She kept repeating a word, and I leaned in to listen so I could catch it.</i><br />
<i><br />
</i><br />
<i>So glad I did.</i><br />
<i><br />
</i><br />
<i>Over and over, she was saying, 'Happy.'</i><br />
<i><br />
</i><br />
<i>It's not extraordinary that she was experiencing that emotion. But she recognized it. Labeled it. Verbalized it. And that is progress. Beautiful, extraordinary progress. She's not the only one who's happy."</i><br />
<br />
Last year, I made my first (and man, do I hope my only) television appearance to talk about finally having ABA centers in the area. Today I went to a meeting to talk about what ABA has meant to Em and to me, in hopes that a lot more kids will have access.<br />
<br />
Pom-poms for everyone.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-58195540850579098722012-01-10T19:29:00.000-08:002012-01-10T19:29:29.646-08:00the man with the planLast fall, I was sitting in the local autism support group meeting, listening to the guest speaker, and I came to a realization.<br />
<br />
I can't ever die.<br />
<br />
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.<br />
<br />
"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.<br />
<br />
<br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">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.</div><br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I'm going to see that speaker from last fall tomorrow.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-36774183005275261482011-12-28T16:25:00.000-08:002011-12-28T16:25:22.898-08:00falls apart<i>You gotta be hard, you gotta be tough, you gotta be stronger</i><br />
<i>You gotta be cool, you gotta be calm, you gotta stay together</i><br />
<br />
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."<br />
<br />
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.<br />
<br />
"EMMA, NO!"<br />
<br />
She stopped where she was, still smiling, and trotted back to me.<br />
<br />
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.<br />
<br />
<br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><i>Herald what your mother said</i></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><i>Read the books your father read</i></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><i>Try to solve the puzzles in your own sweet time</i></div><br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"I'm not mad, baby. It's okay. It's okay."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
<i>All I know, all I know, love will save the day</i>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-78630342460707133752011-12-07T19:10:00.000-08:002011-12-07T19:10:14.597-08:00pretty good yearIf 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.<br />
<br />
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.<br />
<br />
A year ago, her words were so, so rare.<br />
<br />
A year ago, I wasn't sure I'd ever see Emma play with another child.<br />
<br />
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.<br />
<br />
A year ago, I couldn't envision the day where she'd be thisclose to dressing herself independently.<br />
<br />
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.<br />
<br />
But that was a year ago. Now?<br />
<br />
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.)<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I hope she knows, just like I do, that it's been an amazing year. "Pretty good" falls short.<br />
<br />
It seems impossible that I've only loved her for six years. Happy almost birthday to my sweet, sweet girl.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-85737017561173575302011-12-04T16:08:00.000-08:002011-12-04T16:08:39.418-08:00the buttonThere's a quote by Norman Vincent Peale that I particularly like this time of year.<br />
<br />
<span class="Apple-style-span" style="font-family: inherit;"><i><span class="body" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.</span></i></span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><i><br />
</i></span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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.<br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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. </span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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 <i>was </i>work she was doing, as her eyes followed her fingers and she coordinated her motions. There was effort. There was concentration. </span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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.</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">--</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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.</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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.</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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.</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">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. </span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Emma buttoned a button. That would be beautiful to me even if it wasn't Christmastime. </span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span><br />
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><br />
</span>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-57136831504354913182011-10-27T16:23:00.000-07:002011-10-27T16:23:28.773-07:00we steal a perfect momentOne evening in the not-so-distant past, I picked up the phone and called my mom.<br />
<br />
"Okay, I have a weird question for you."<br />
<br />
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.<br />
<br />
"Do you think Em loves me?"<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 --<br />
<br />
"MOMMY!"<br />
<br />
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.<br />
<br />
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.<br />
<br />
"Bye!" she said loudly, clearly impatient to get her farewells done so we could just LEAVE, ALREADY.<br />
<br />
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.<br />
<br />
It was some kind of wonderful. No, <i>she</i> is.<br />
<br />
<i>"I can't remember all the times I tried to tell myself / To hold onto these moments as they pass"</i>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-25563538743931022262011-09-14T17:33:00.000-07:002011-09-14T17:33:38.130-07:00How it isShe 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Then, Em gets un-stuck, and everything goes on.<br />
<br />
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.<br />
<br />
"Come on, babe, let's go eat."<br />
<br />
She scrambled out of the seat immediately, but instead of climbing out of the car, she turned away and bent down to the floor.<br />
<br />
"Em, let's eat supper! Come inside with Mom."<br />
<br />
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.<br />
<br />
"Okay, you got them! Good job! Let's go in the house now."<br />
<br />
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.<br />
<br />
"Sweetheart ... please."<br />
<br />
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.<br />
<br />
"Emma?"<br />
<br />
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.<br />
<br />
Next time, I won't begrudge my girl the 30 seconds it takes for her to shift her world back into place.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-85058767302328361082011-09-01T19:16:00.000-07:002011-09-01T19:16:58.965-07:00a 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."<br />
<br />
"What's The Goodbye Song?" I asked.<br />
<br />
<i>Na na na na, na na na na, hey hey hey, goodbye</i><br />
<i><br />
</i><br />
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.<br />
<br />
<i>Na na na, hey hey hey, goodbye</i><br />
<i><br />
</i><br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
A man standing beside me watched me watch her for a minute. "No bathing suit, huh?"<br />
<br />
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?"<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
(Looks like a three-parter after all. This time I won't say 'soon' for the follow-up.)Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-71135745893123250432011-07-27T18:08:00.000-07:002011-07-27T18:08:22.246-07:00a 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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
A night away.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"Go swimming."<br />
<br />
"We will, babe. We're swimming later."<br />
<br />
"GO SWIMMING."<br />
<br />
"Em, I promise we're going to go swimming. Later."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
(Seems a good place to stop what's turning into a long post, so I'll finish the story soon.) (Hold me to that.)Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-3958373519434070272011-06-28T16:52:00.000-07:002011-06-28T16:54:44.251-07:00Dum spiro speroIf 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.<br />
<br />
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.<br />
<br />
And Saturday morning, she grabbed a DVD case and turned to me.<br />
<br />
"Watch puppies?"<br />
<br />
She was holding up 101 Dalmatians.<br />
<br />
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."<br />
<br />
"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.<br />
<br />
"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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"Yes, Jesus wuv me. Yes, Jesus wuv me. Yes, Jesus wuv me. Bible ... so!"<br />
<br />
I love her words most of all.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-75304320454094824112011-06-19T18:30:00.000-07:002011-06-19T18:30:18.581-07:00hello, goodbyeAs 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Me, too.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
I can't wait to find out.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-4574531886377437442011-05-24T17:43:00.000-07:002011-05-24T17:43:02.863-07:00walking in placeEmma 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."<br />
<br />
I pressed it, and she beamed.<br />
<br />
She was back 30 seconds later, and this time she tugged my hand, pulling me into her room, where she plopped onto the floor.<br />
<br />
"What do you want, Em?"<br />
<br />
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).<br />
<br />
When we came back in, I had some perspective.<br />
<br />
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.)<br />
<br />
Follow-through can be a problem for me. Except when it comes to Emma.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Finally, finally, finally.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
All the best of what she's done is yet to come. Just watch.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-80237853308841993332011-04-19T16:40:00.000-07:002011-04-19T16:40:48.014-07:00nothing to see hereYou could probably say that I asked for it when I wrote these words to Emma.<br />
<br />
<i> 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><br />
<br />
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.<br />
<br />
"So we'd like to interview you!" the reporter said.<br />
<br />
"On camera?" I asked stupidly, knowing she was going to answer in the affirmative and fruitlessly wishing otherwise.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
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.)<br />
<br />
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.<br />
<br />
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. <br />
<br />
Here's hoping.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-22596462260301048732011-04-06T16:29:00.000-07:002011-04-06T16:29:37.756-07:00this life is a beautiful one<i> (Originally posted on Mar. 18, 2009, about three months before Emma's diagnosis)</i><br />
<br />
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. <br />
<br />
"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?"<br />
<br />
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. <br />
<br />
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. <br />
<br />
"Emma, Emma! Do you want to go on the big slide?"<br />
<br />
I bit my lip. "Well ... okay. We can try."<br />
<br />
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.<br />
<br />
"Emma! You did it!"<br />
<br />
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."<br />
<br />
Of course she did.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-53169827223451659482011-03-31T16:18:00.000-07:002011-03-31T16:18:35.305-07:00to my daughterDear Em,<br />
<br />
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 <i>you</i> 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.<br />
<br />
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.<br />
<br />
I asked the question I always ask: "What do you want, Em?"<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
One little word, and I feel like I'm flying.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
You're kind of amazing.<br />
<br />
I love you, monkeyface.<br />
<br />
MomKerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-1342859487241399372011-03-23T17:38:00.000-07:002011-03-23T17:38:53.136-07:00a dream worth the keepToday was not a great day. Nothing horrible happened, just a series of small annoyances that built and built<i>, </i>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.<br />
<br />
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.<br />
<br />
"I ride a horse?"<br />
<br />
"That's right, babe, you're going to ride a horse."<br />
<br />
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. <br />
<i><br />
</i><br />
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.<br />
<br />
"Does she sign?"<br />
<br />
I was already shaking my head when she continued, "I thought maybe she signed because she doesn't talk."<br />
<i><br />
</i><br />
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.<br />
<br />
Like Tori sings, "doesn't take much to rip us into pieces."<br />
<br />
Is Em nonverbal? Maybe. Mostly. Probably, by the technical definition, which is "involving little use of language." Yes.<i></i><br />
<i><br />
</i><br />
And that hurts. It sounds so harsh, like a thousand big, fat raindrops hitting you square in the eye at once.<br />
<br />
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.<br />
<br />
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? <br />
<br />
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.<br />
<br />
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.<br />
<br />
"I love you, Em."<br />
<br />
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.<br />
<br />
"Luv oo."<br />
<br />
<i>"'Cause this life is a beautiful one<br />
And though I seen it comin' undone<br />
I know most definitely<br />
That it’s gonna be you <br />
It’s gonna be me<br />
So baby, keep your head up<br />
Keep it on the up and up<br />
Cause you got all my…<br />
Love love love"</i><br />
<br />
<i>--Tristan Prettyman, "Love, Love, Love" </i>Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com1tag:blogger.com,1999:blog-4308295710694094685.post-39045067866371518662011-03-03T19:09:00.000-08:002011-03-03T19:09:05.194-08:00Emma, victoriousAfter 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.<br />
<br />
Not today.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I admit it: I was skeptical.<br />
<br />
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."<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
I admit it: I doubted.<br />
<br />
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.<br />
<br />
WHEN SHE WAS ASKED.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Those are the good days. This is what's possible.<br />
<br />
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.<br />
<br />
Always, baby.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0tag:blogger.com,1999:blog-4308295710694094685.post-10031643834847530172011-01-31T18:50:00.000-08:002011-01-31T15:51:48.523-08:00your optimistic eyes seem like paradiseIt'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!"<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Kerryhttp://www.blogger.com/profile/12434908388717039780noreply@blogger.com0