One of the Gang

This afternoon I drove up just as Maggie pulled into our shared driveway with Dylan and two of his friends in her car. The boys were stopping at the Crandell house to change their clothes and have a quick snack before heading to soccer practice.

When we all lived in one house together, Ben loved it when “the soccer boys” played through on their way to practice. It was loud, chaotic and kinetic and Ben couldn’t get enough of it. He would insert himself right in the middle of the action, following those boys around, doing whatever they did, eating when they ate. But most importantly, he laughed when they laughed (even when I’m quite certain he didn’t know why). Have you ever noticed the power in that? The power to belong can be found right there in the laughter we share.

Ben loves to belong and laughing when others laugh is something he's always done to achieve that. There aren't many social skills that we didn't directly teach Ben—very few he just "picked up out of the air" like other kids do. But sidling up to a laughing group of kids and joining in their laughter is something I didn't teach him—that’s one he came up with on his own. It’s not fake or phony. It's just one of the ways Ben has found to fit in. To feel like one of the gang. One of the ways he connects.

I always believed that the soccer boys tolerated Ben insinuating himself into their group because it was, after all, Ben’s house too. But maybe it had more to do with the power of shared laughter—the power of Ben’s laughter—than I realized.

This afternoon as Maggie and I both pulled into the driveway, Ben came walking up the hill from school. He saw Dylan and his friends piling out of Maggie’s car, smiled broadly and said to me, “I’m so glad it’s soccer season!”

I held my breath for a moment, wondering what would happen next. We no longer live in the same house with the Crandells. Same roof, yes, but we have completely separate spaces in the duplex we now rent. Ben no longer has an excuse to be where those boys are. I honestly wasn’t sure what to expect. I envisioned Ben watching Dylan and his friends walk inside without him, then quietly sulking away to our own house in the back, feeling left out and disappointed. But that’s not what happened.

Instead, Ben breezed right past me and followed those boys into the Crandell’s house, still carrying his school backpack and his viola. He didn't ask. He wasn’t invited. He wasn’t even encouraged. He just followed them inside as if he belonged. And in that moment, I guess he did.

I’m not sure which makes me happier or gives me more hope: Ben having the confidence to follow that group of middle-school boys, completely uninvited into the Crandell’s house, or Dylan and his friends tolerating their elementary-school tag-along without question. I stood there and watched as the front door closed behind them and I could hear them laughing as I started down the path to my front door.

I believe there’s real power in shared laughter. The power to belong can be found there.

I'm so glad that Ben has a really great laugh.

Some Things I Shouldn't Admit

I had every intention of being productive this weekend. The kids were away and my to-do list a mile long, but I got to very little of it. An unexpected call from an ex derailed my weekend (not to mention my psyche) and made fresh again the pain I’ve been working so hard to dull. On the bright side, I've always wanted to work, "What fresh hell is this?" into a conversation and this presents the perfect opportunity.

In Houston last weekend I discovered photos of him and a date on Facebook. Photos that everyone could see but me. Hiding photos from your ex on Facebook is as easy as a mouse-click, but when you have 52 mutual friends, it’s not exactly a fool-proof way of keeping a secret. Already feeling sad about being at the Halloween party without him, I felt my heart break just a little bit more when I saw him smiling in those photos. Of course his intent was to spare me pain, but if you have to hide big chunks of your life from a Facebook “friend,” they probably shouldn’t be your Facebook friend any longer. So I did the logical thing and unfriended him. Then I cried. And then I rallied. I relished in my time with my dearest friends, ate too much Tex Mex food, drank margaritas and generally put my game-face on (along with a costume so terrifying I won the Scariest Costume prize in a landslide).

And all of that made me feel a little bit better. Until the phone rang and his name popped up in huge letters on the comically-oversized screen of my new cell phone. Along with a photo of the two of us smiling and embracing (god-damned giant cell-phone screen).

It seems he had an “overwhelming urge” to hear my voice. He said he didn’t think I would pick up the phone. If he knew me at all he would know that was ridiculous. Because here’s the thing (and I shouldn’t admit this, but here goes): every time he contacts me out of the blue, a tiny part of me thinks (hopes) he’s contacting me to say he loves me and he’s sorry and he can’t imagine life without me. I have to pick up the phone. Just in case. I know I’m not supposed to admit that. It goes against the unwritten code of strong, fabulous women.

More than one well-meaning, strong and fabulous girlfriend has said to me, “You don’t need a man.” That’s the party line, right? And of course it’s true. I don’t. So I usually smile and nod and accept the love, friendship and solidarity conveyed in those words. I’m not supposed to say, “No, but I really want one. I don’t want to be alone.” I’m not supposed to admit that. It goes against the code. But every now and then I say it anyway.

And then I gather my wits about me, remember the unwritten code of strong, fabulous women and do what one does when trying to mend a broken heart. This weekend, for example, instead of completing any number of tasks on a to-do list, I drank a bunch of wine, bought a kick-ass pair of boots and became a red-head (technically a dark brunette with hints of mahogany—everyone knows I’m prone to exaggeration). I left out getting a pedicure, enjoying a bubble bath and making out with a stranger in a bar because all of those seemed like too much trouble. Now I’m camped on my couch alternating between the sappy programming on Lifetime Television for Women and The Hallmark Channel. Like I said, just doing what one does.

But if I haven’t surfaced by the time you read this, send help. I may need an extraction team.

Letting the Days Go By: Even More Candy Wrapper Wisdom

I have David Byrne stuck in my head. As voices in my head go, the lead singer of the Talking Heads isn’t bad. In fact, given that “Once in a Lifetime” is the song he’s singing, I’d call him downright insightful. “You may ask yourself, how did I get here?” You got that right, David Byrne. I have been asking myself that.

Next week I’m heading to the infamous Halloween party I attend in Houston every year. My favorite weekend of the year, hands down. But this year it’s yet another thing that I shared with Troy that I’ll be doing solo. Another thing I believed I would be doing with a partner this year. And next year, and the year after that too.  Instead it’s yet another time I’ll explain to friends why the man I was sure I’d grow old with—the man who told  everyone closest to me that he was in my life to stay—is not with me.

How did I get here?

Since our breakup, I’ve flown solo for my summer trip to Dallas and the Autism Walk. Next is the Halloween party and then Thanksgiving and Christmas—all things we shared last year. Things we shared with the promise that each would be the first of many. Once I make it through these milestones I’ll have done without him all the things I did with him that were so meaningful to me. I’ll be one year removed from the memory of how good it felt to share these things with him. One year removed from the feeling of contentment and security I felt when I was with him. One year removed from that wonderful feeling of being part of a team. And one year removed from the intoxicating feeling of being loved.

I hope the distance created by that one year will provide clarity and some measure of peace. But for now, I’m just letting the days go by (at the suggestion of the song stuck in my head) and letting the distance unfold.

Last night while I was doing just that, I figured I might as well eat some chocolate (I could tell you that I also figured I might as well drink some wine, but that probably goes without saying). So I sipped my wine, unwrapped a Dove Chocolate Promise and checked the inside of the wrapper. It said, “Chocolate won’t let you down.”

Normally I feel gypped when I find some bullshit about the wonders of chocolate where my pithy pearl of wisdom ought to be. Normally I would read “Chocolate won’t let you down,” and say, “I’m sorry…what?” to no one in particular, “What kind of crap is that?” But last night I looked at that tin foil square and thought, “Whoa. Dude.” (And I wasn’t even high.) Chocolate won’t let me down. Ditto wine and far too much coffee. A true friend. Hugs from my kids. (And let’s face it, a certain battery-operated appliance, provided I keep enough batteries on hand.)

                                                                              

Armed with the knowledge that I would not be let down, I opened another chocolate (and poured another glass of wine). The wrapper on this one read, “You are exactly where you are supposed to be.” I looked at this tin foil square and thought, “Seriously?” Because if you’d asked me a year ago, my idea of “where I’m supposed to be” would have looked nothing like this.

However, I’m not one to doubt the wisdom and insight dispensed on the inside of a Dove Chocolate Promise wrapper (lest you forget, I once checked the car’s glove box and under my bed when one suggested I look for love in unexpected places). So at least for the time being, while I’m letting the days go by, I have decided to sit very, very still.

Y’all be careful not to jostle me, OK?

Love Notes

This year, on the first day of school, instead of putting notes in my kids’ lunchboxes as I’ve done every year before now, I left the notes on the kitchen counter next to their sandwiches. “Happy first day of 6^th grade, Ben,” and “Happy first day of 4^th grade, Lucy,” each followed by a small heart and “Mom.”

While treating my kids with respect is something in which I’ve always taken pride, being hyper-vigilant to avoid embarrassing them is still pretty new to me. I’m learning, but I still mortify them from time to time (unwittingly, of course). It doesn’t take a rocket-scientist, though, to know that opening a lunchbox in a crowded school lunch room to reveal a Post-It emblazoned with hearts, smiley-faces and “Mommy loves you!” would prove humiliating for any nine or eleven-year old.

Or would it?

The kids packed their own lunches, so when I found the counter empty except for the note I wrote to Ben, I assumed he had glanced at it, shrugged and said,“huh,” under his breath before leaving it exactly where it was. I couldn't be sure, though, what Lucy had done with her note, but I imagined it went something like this: she picked up the note, read it carefully, smiled to herself (perhaps while holding it to her heart) and then promptly recycled it. I thought I had a pretty good idea of how each scene had played out.

Until Lucy walked through the kitchen, saw Ben’s note still on the counter and shouted,“Ben! Why didn’t you put your note in your lunchbox?”

Why not, indeed?

A couple of weeks later during Curriculum Night at school, I tore a corner off the Parent Hand-Out on which I should have been following along, wrote Lucy a note and tucked it away in her desk for her eyes only (so as not to embarrass her, obviously). After the first-day-of-school lunchbox note, it really shouldn’t have surprised me that when she found the note in her desk, she slid it into the clear, front sleeve of her binder where it has remained ever since. Right where anyone can see it. It says, “Hi Lucy,” followed by a smiley face and, “Mom.”

It shouldn’t have surprised me, but it did. Don’t worry, though, I didn’t gasp and tear up at the sight of it when she walked out of the classroom with her friends.

Because that would have been embarrassing. (I may still be learning, but even I know that.)

My Name is Lori (And I’m an Addict)

I’m addicted to sentence fragments. It's true. My writing is littered with them. I use them for cadence. I use them for impact. And sometimes when I’m just being lazy. (See?) I honestly can’t make it through the day without a good sentence fragment. Or two. Last March I created a sentence fragment that ended a relationship I swore would last forever. How’s that for impact?

“I’m sad and confused,” he said. “How can I not be?”  When I didn’t answer, he repeated himself, more loudly this time, “How can I not be?”

I paused and considered the question before saying, "I'm going to need you to finish that sentence."

“What are you talking about?” he asked, annoyed. Fair enough, I thought. He had, in fact, spoken in complete sentences; it was the thought that was incomplete.

“I need you to finish the sentence,” I said again. “‘How can I not be sad and confused when…’ Fill in the blank. I need to hear what follows. I need to know what you think has happened here.”

My battle with depression had taken its toll on our relationship and we were near the end. We both knew it. He couldn’t hang on—couldn’t withstand the distance, neither the physical, nor the emotional distance caused by my struggle. And I could no longer withstand his apparent lack of empathy and what felt like disapproval of a “weakness.”

“Finish the sentence,” I said yet again.

Silence followed. And then, “How can I not be sad and confused when the woman I fell in love with no longer exists? How can I not be sad and confused when the woman I would have done anything for no longer exists? How can I not be sad and confused when the woman who made me feel like I’ve never felt before NO LONGER EXISTS?” By this time he was shouting and on the other end of that telephone line, 2,391 miles away, I was shrinking a little more with each perfectly-formed sentence.

I had only days earlier written about my depression here in this blog. I described feelings of being “separate” from the rest of the world, disconnected and somehow “not real.” I wrote about “folding in on myself and disappearing.” And here was the man I loved, using those words, using my darkest thoughts as a weapon. Hammering away at what precious little “me” I had left.

So I told him he had to stop. And I didn’t mean just his tirade. We had to stop. He didn’t put up a fight. I may have been leaving him, but the truth is he was already gone.

And it all started because I asked him to finish a sentence. I’m sure the hypocrisy is not lost on you (especially if you've already counted the sentence fragments in this blog post alone), but I have to insist that if you’re going to come at me with words, they’d damn-well better form a complete sentence. If words are your weapon, be prepared to finish your thought.

My name is Lori and I’m an addict. Addicted to sentence fragments. (And I’m an appalling hypocrite besides.) 

Big Life/Small Container

If we’re Facebook friends, you may already know that the Heaglers have moved. But, in case you’re hearing it here for the first time, it’s true—our communal living experiment with the Crandell family is over and Chez Crandler is no longer. Not to worry, though, we still live under one roof, but now it’s a roof that covers a duplex, so each family has their own space. But it’s not a typical, side-by-side, mirror-image duplex, it’s a single-family home that’s been converted. The Heagler portion of the house is a daylight basement with a “front door” that’s in the backyard. And it’s quite, um…cozy. Roughly 990 square feet worth of cozy. It has two bedrooms—one for each of the kids—and a small space where I can sleep. Not a bedroom exactly, it’s more like half of a one-car garage with exposed concrete on the walls and no window, light fixture, heating vent or closet. In fact, that’s precisely what it’s like. My "bedroom" could maybe pass for "quaint". But warm and inviting? Not so much.

When I sat down to write this blog post, I started with the idea that our lives keep getting smaller. In fact, it was the opening line of the first draft. In the past ten years, the kids and I have gone from a large, beautiful, 1927 Tudor that I was pretty sure was my house soul-mate, to a smaller, new-construction house with a great yard that again I thought might be my house soul-mate. (Don’t judge me—I’m a Taurus and generally speaking, we cherish “home.” Plus, I’m a bit of a serial monogamist when it comes to houses…OK, and some other stuff too.) Then we moved to a not-particularly-nice, yet fairly large rental house that we shared with another family, our dear friends, the Crandells, in order to afford the rent. And now we’ve landed in this teeny duplex (or, “Someone else’s basement with a door in the backyard!” if you’re an emotional nine-year-old venting some frustration at your mom’s appalling inability to adequately provide for your family).

                                                                 

At first glance, it certainly seemed as if our lives were getting progressively smaller. But on closer examination, it dawned on me it’s really just the container that holds our lives that’s getting smaller. Our lives, in sharp contrast, are getting bigger by the minute.

Since moving into this duplex, Lucy has slept in her own bed every single night. With the lights off. Before moving here, that had not happened consistently in nearly a year. That’s big.

With the money we’re saving on rent, I was able (with the help of a partial scholarship form Autism Speaks) to send Ben to a sleep-away camp for kids with Autism, ADD and ADHD. His first time camping was a positive, as-stress-free-as-possible experience due to a phenomenal, highly-trained staff and the extraordinary three to one camper-to-staff ratio. With that experience under his belt, he’ll now face sixth grade camp with new confidence. That’s really big.

I am now flying solo in my volunteer position as Walk Chair for 2012 Puget Sound Walk Now for Autism Speaks. My co-chairs and mentors stepped down in the face of some pressing family matters. So it’s sink or swim for me and even though I feel like I’m in over my head, I’m swimming (more like dog-paddling really). But still, that’s huge.

And I finally bit the bullet, re-worked my resume and began looking for a big-girl job (wearing my big-girl panties, obviously). I’m looking for something not only challenging and rewarding, but also that has some semblance of an opportunity for advancement (oh yeah, and more money and some benefits would be good too). Unfortunately, I no longer have the luxury of approaching this job search on my own timeline, and quite frankly I’m terrified at the thought of my ass hanging out here in the wind, but I’m moving forward with at least some degree of optimism. That’s enormous.

It seems the Heagler family’s lives are getting bigger every day, and yet the container that holds those lives has become quite small. And as much as the Taurus in me cherishes “home,” the choice between a big life in a small container and a small life in a big container isn’t really a choice at all. It’s quite possibly the very definition of a “no-brainer.”

And even if that container had to get smaller still, that would be OK with me if that’s what it takes to show my children their lives are boundless and their possibilities limitless. To show them they can walk among giants (and so can I)…no matter the size of the container that holds their life.

Admittedly, however, I hope our lives’ next container will have an honest-to-god bedroom for me. A girl can dream. (And now Journey's "Don't Stop Believing" is stuck in my head. I guess there are worse things.)

Sharing Our Story

I’m sometimes asked why I share so openly (sometimes painfully so) my family’s life with autism. Ben is so high-functioning that most people would not even know he is affected. Ben can and does “pass for typical” most of the time. So why talk about it? Why tell our story?

Families affected by autism experience hardship in a variety of ways. Affordable access to diagnosis and treatment is not readily available because most insurance companies won’t cover it. We sometimes have to fight tooth and nail for the free and appropriate public education to which our children are entitled. We cannot easily find answers to our questions about the myriad of treatments available. Our marriages far too often crumble under the stress. But perhaps most devastating, we hide in our homes, isolated, sometimes for years, because our children behave in ways that are unexpected and an uninformed public is often unkind. We are made to feel ashamed.

I share my family’s story, not to label Ben, but to strip away the need for a label at all. To dispel any negativity an uninformed public might associate with the diagnosis of autism. I share our story hoping that other families affected by autism, especially those with newly-diagnosed kids, might see that there is no need to hide. There is no shame. To let those families know there is community and help and hope for them.

There is no cure for autism, but we are often able to affect behavioral change with our high-functioning kids, especially when diagnosis is early. We were lucky to have an early diagnosis for Ben and because of that, we were able to give him the tools to “appear typical.” But just because we’ve given him those tools doesn’t mean the requisite behavior comes naturally. I think Ben works harder than anyone I know at fitting in and behaving in ways that society expects, but only those closest to him truly understand just how hard. Only those closest to him see what a struggle it can be.

I share my family’s story to honor Ben and his incredible determination. To acknowledge how very hard he works at things the rest of us don’t even have to think about. To celebrate his courage.

In the community of people affected by autism, there is some debate about the need for a cure—a debate I honestly think is unnecessary. Parents of children on the low-functioning end of the spectrum desperately want a cure and I stand with those parents and support the funding of research into finding a cure. But those of us with high-functioning kids might believe that a “cure” would change our kids—that it would somehow take away my Ben’s “Benness.” Those of us with high-functioning kids desperately want acceptance and inclusion for our kids. We advocate for these things, very often with parents desperate for a cure advocating right along beside us. Because no matter where we stand on the issue of “cure,” we all want answers. We all want tolerance and dignity and respect for our children. And we all want to be heard.

A speaker at a conference I attended recently observed that parents of children affected by autism are drafted into this cause. We work hard to raise awareness and fight for our kids, but our work will never be enough. This speaker was of the opinion that what the cause really needs is more enlisted.

I share my family’s story to increase awareness among those not personally affected, hoping to make even one person hear us. Hoping to make even one person care about the struggles of the thousands of kids affected by autism. Because these beautiful, unique, wonderful children, who touch people every day with their strength and courage, deserve a better future. They deserve our compassion and support. I was drafted into this cause, but the cause needs more enlisted. I share our story hoping you’ll enlist.

But perhaps the most compelling reason I share our story is because I so often feel powerless to affect change on behalf of these kids. I feel I almost have to share my family’s story with autism so openly, brutally honestly and, let’s face it, sometimes painfully, because it’s what I can do—it's quite possibly the very least I can do—for this cause and these kids.

One in 88 is one hell of a lot of kids. I think it’s time the world got to know them. And that's why I will continue to share my family's story...until all the pieces fit.

Click here to support Team Heagler and help us raise awareness at the 2012 Puget Sound Walk Now for Autism Speaks