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.

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

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."

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.

the man with the plan

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

I can't ever die.

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

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

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

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

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

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

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

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

falls apart

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

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

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

"EMMA, NO!"

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

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

Herald what your mother said

Read the books your father read

Try to solve the puzzles in your own sweet time

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

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

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

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

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

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

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

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

pretty good year

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

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

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

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

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

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

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

But that was a year ago. Now?

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

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

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

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

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

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

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