12 December 2012

shine until tomorrow

"And when the night is cloudy, there is still a light that shines on me / Shine until tomorrow, let it be"

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.

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.

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.)

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.

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.

It wasn't. 

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.

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?

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.

So here's our Christmas letter.

Dear loved ones,

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.

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).

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. 

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. 

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. 

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. 

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."

So that's my Christmas wish-- for me, for Emma and for all of you. 


"There will be an answer, let it be"

21 October 2012

the kindness of strangers

"Feeling gratitude and not expressing it is like wrapping a present and not giving it." - William Arthur Ward

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.

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.

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.

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.

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.

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.

"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.

"Hi there!"

My head jerked up, and instantly, I knew somehow it was going to be okay.


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.

"Hey, you guys again!" she said once.

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!"

She said "Hi, Emma!" the next time we came in, too.

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.

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.

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.


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?"

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.

"Don't even worry about it. I've got you. Go get Emma."

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).

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.

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.

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.

I shrugged, then glanced toward the back of the store and realized that Emma's friend was working. I pointed: "It was her!"

He called to her, and she turned, smiling at the sight of us, and we both started talking at once.

"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."

"And you didn't have to do what you did. But you saved her day-- you really have no idea."

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.

Thank you, Jess.

24 September 2012


I 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.

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.

"Love you," said that soft, beautiful voice.

And then there just wasn't any anger left. There was just Emma.

Dear beautiful girl,

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.

I'm sorry, baby.

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.

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.

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.

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.

I am so much better for knowing you.

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.

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.

You're my girl, and I love you. And you're more than just okay. You are perfect to me.

To the moon and back, baby.

Pretty, pretty please
Don't you ever, ever feel
Like you're less than, less than perfect
Pretty, pretty please
If you ever, ever feel
Like you're nothing
You are perfect to me.

20 August 2012

walk on

Go ahead, release your fears / Stand up and be counted / Don't be ashamed to cry - Des'ree, "You Gotta Be"

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.

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.

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.

It's not the whole picture; it's a word.

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.

What hurts me is when her autism hurts her. 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.

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.

It's not a tragedy, and it's not a cake walk. It just is.

The inimitable Jess at A Diary of a Mom wrote on this very topic -- "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."

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.

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!"

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.

It just is.

13 July 2012

The shine

Act as if what you do makes a difference.  It does.  -William James

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.

She was already under the covers, face pushed into the mattress, shoulders shaking. 

"Emmmmmmma," I whispered. "Give me your face!"

Giggling, she flipped over to face me. "Oh, Mommy!"

It was such an appropriate, conversational response that I froze for a second before swiping the washcloth over the ketchup on her cheek.

"Oh, Emma," I said back to her, matching her tone.

And then it was a game. "Oh, Mommy!" "Oh, Emma!" Both of us laughing, smiling. Both of us in the same moment.

She nestled her head onto my shoulder and snuggled close, content to let me hold her.

The greatest good you can do for another is not just to share your riches but to reveal to him his own.  -Benjamin Disraeli

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. 

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.

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.

I kid you not, that parent/teacher conference involved the incredulous phrase: "She does know things!"

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.

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.

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.

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. 

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.

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.

Still. We'll miss her.

I've seen and met angels wearing the disguise of ordinary people living ordinary lives.  - Tracy Chapman

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. 

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.

You changed her life, and that's not even an exaggeration. You changed her life. 

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.

I always, always believed in Emma. And then you did, too.

Thank you seems insufficient. But I think you know how deeply I mean it.

Thank you.

Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not.  -Dr. Seuss

09 July 2012

Being Real

I am fierce, and I am fragile.

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 was 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.

I want everyone to get it.

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.

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.)

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?"

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.

Emma is all I know, and all I want to know.

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.

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!"

I'm going to go home tonight and read The Velveteen Rabbit to my daughter, who will never be ugly to me.

"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."

10 April 2012

calling all cheerleaders

Whether 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.

Then I thought about it a bit more, and I can't think of anything more hugely important than Emma herself.

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?

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.

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.

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.

No more diapers. Full sentences.

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.

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.

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.

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.

Get a set of your own. Cheer with me. Things like this are happening:

posted on Facebook, March 12:

"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.

So glad I did.

Over and over, she was saying, 'Happy.'

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."

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.

Pom-poms for everyone.

10 January 2012

the man with the plan

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

I can't ever die.

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

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

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

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

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

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

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

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