Kindness Isn't Complicated

During Autism Awareness month there are all kinds of autism stories in the news. The numbers catch people’s eye and bring much needed attention. One in 88 kids diagnosed with autism is startling. More kids being diagnosed with autism this year than with AIDS, cancer and childhood diabetes combined is shocking. Autism research receiving less than five percent of the funding of other, less-prevalent childhood diseases is appalling. The numbers grab your attention, but I hope you will look beyond the statistics and see the very human stories that are tied to those numbers.

A Facebook post circulated the internet recently about a girl with autism and her sister and a wonderful experience they had at a restaurant when they sent back a "broken" (cut in half) hamburger that the girl could not tolerate. The staff at this restaurant replaced the hamburger free of charge, but more importantly, showed incredible kindness to this family in the process.

I remember all too well the “hamburger issues” we had when Ben was younger. His motor skills were questionable at best and any hamburger would invariably get pushed off the bun while he ate it. By the time Ben reached the middle of the burger he would require a new bun because he simply could not tolerate a bun that no longer covered the meat. Like the girl in the Facebook post above, his hamburger was “broken,” and Ben loved a hamburger, so it was distressing for him. So many times I requested a new bun (for which I was perfectly willing to pay) and received objections, attempts to talk Ben out of it and even admonishments that he was too old for such foolishness. Never mind the exaggerated eye-rolls and unkind comments spoken in voices loud enough for us to hear when I would carefully tear the new bun to precisely fit the half-eaten hamburger.

The Facebook post about the girl and her sister ends with: "MacLean has since read the hundreds of comment from strangers on her Facebook post, many of whom admitted they have never thought of something like that when encountering a screaming child at a restaurant. Her hope is that the next time they see a kid being a little different they might just think, "Maybe they have autism; maybe there’s something a little more than meets the eye.”

I think it’s wonderful when awareness causes people to stop and think and possibly treat a family dealing with autism with kindness and respect when they might not have otherwise done so. But I can’t help but also think, "Why should it matter if that screaming kid has autism or not?" Why can't we all just be a little more kind to one another regardless of why it’s happening?

I spoke to a room full of sorority girls at the University of Washington earlier this week and part of what I talked to them about was about raising awareness about autism. I told them a story about a social faux pas Ben made in Kindergarten and how his Kindergarten classmate didn’t think much of it. I told those girls that it has always been my goal to stay ahead of the curve where that same classmate, five years later, witnessing Ben’s social screw-up would look at him and sneer, “Whatever, you weirdo,” and recount the embarrassing incident to other classmates or even via social media. Staying ahead of that curve is not easy and I haven't always been successful. But what if raising awareness would allow parents to stop worrying about keeping their kids with autism ahead of that curve and instead simply focus on raising healthy, happy, successful kids? What if we all were just a little more kind?

Ben’s sister, Lucy, turned 10 recently and we wrote birthday messages to her on a poster labeled, “What I Like About Lucy.” Ben wrote: "Lucy, What I like about you is your sense of humor. Your personality makes everyone smile. I also like your determination, whether it's begging mom to get you some really cute boots or take you to Maine, or trying to hit a softball. But what I like most of all is your heart and kindness. You try to make people laugh so hard that milk comes out of their nose after their dog died or they watched the movie, P.S. I Love You. You're the best sister or friend anyone could ever have in their craziest dreams. Happy Birthday. Love, Ben.”

Many kids with autism have difficulty understanding intent or intuiting emotions. But it seems Ben recognizes Lucy’s kindness just fine. What he likes most of all about Lucy is her heart and kindness (it’s what I like most about her too). I believe Ben can see that just fine because kindness isn’t complicated.

It’s simple. Be kind to a person with autism.

Or better yet, just be kind.

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.

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

This One Goes to 11

Yesterday was Ben’s 11^th birthday.  How is it possible 11 years have gone by since I held that baby in my arms and dreamed big dreams for him?

I’ve shared a lot of Ben with you over the years. His loves, his quirks, his fascinating brain and his befuddling (and often hilarious) behavior. I love his beautiful spirit and the wonderful weirdness he brings to our lives. I’ve shared stories about his love of music, his legendary iPod and his encyclopedic knowledge of all that resides thereon. I’ve shown you his lists and chronicled the adventures of his beloved Lego Guy. I once told you how he labeled with Post-Its all the spaces in our house when we moved in with the Crandells and showed you months later when I found the last sticky-note still stuck under the dining room table. It read, “Under Table.” I’ve been nearly run out of Facebook-Land on a rail for recounting his obsession with a truly creepy scary clown mask (mostly because I insist of photographing it, scaring the bejeezus out of unsuspecting visitors to my Facebook page).

But when I was considering what to write for Ben’s 11^th birthday, I started thinking I had nothing left to share. And then he forgot to take his binder to school today. He texted asking me to bring it to him and when I saw the binder lying on floor in his room, I knew exactly what to write.

Earlier this year, after watching the Oscars, Ben Googled, made a list and then printed a small picture of the movie poster for every Best Picture Oscar winner since the Academy Awards began in 1929. When he started the project he told me he wanted to decorate his binder with them. I pictured a sheet of paper (or more likely two) with several small images inserted into the clear sleeve on the front of his binder. I thought maybe he’d trade out the two sheets from time to time to display different posters. He did, in fact, print several images on each sheet, but then he meticulously cut them apart until he had 84 mini movie posters, each one about 1 ½” tall x 1” wide.

Every day he displays one (and only one) of the mini movie posters in the front sleeve of his binder. One barely-larger-than-postage-stamp sized image on the front of a binder that measures 10.5” x 11”.  Today: “A Man for All Seasons,” Best Picture winner in 1966. I have no idea where he keeps the 83 others not currently in use, but I have no doubt I’ll find out when I pack up his room this weekend.

Ben is not the 11-year-old I thought I’d have and my dreams for him have certainly changed over the years. But those dreams have by no means become smaller, because Ben is so much more—so much “bigger”—than the 11-year-old I naively imagined when I held that baby in my arms all those years ago (his diminutive binder decorations aside).

When I Grow Up

Ben and I sat together on my bed last night and talked about what he wants to be when he grows up. A completely normal and wonderful conversation to have with a ten-year-old boy, but with a healthy dose of ‘out-of-left-field’—it was a Heagler family conversation, after all.

He thinks he might want to be a professional football player and he spent a lot of time telling me which team he hoped would sign him, based not only on what he predicts their chances of winning a championship during his time on the team to be, but also on whether or not he deems them to be a “talented group of guys.” Never mind that Ben has never played football (or any sport for that matter). Or that any time I've asked if he’d like to try playing a sport he’s declined. Add to all of that the fact that he’d very likely find football particularly difficult given the amount of human contact involved, and what you have is a highly unlikely scenario for what Ben might be when he grows up. No matter, though, because today Ben thinks he has a real shot at being a player in the National Football League someday. Maybe for the New England Patriots (a talented group of guys).

Next he said he might like to own a store instead. “What kind of store?” I asked. “I’d like to own a store that sells stuff that people don’t think is cool, but really is, like suspenders and berets and stuff.” “Stuff that’s so uncool it’s cool?” “Exactly.”


I paused to mull that over for a moment, appreciating the symmetry of this particular idea coming from my Ben. It was then, while I was basking in pride for my son and appreciation for just how incredibly cool he really is, that he admitted conspiratorially that neither professional football player nor the owner of a So Uncool It’s Cool store was his first choice for what he wants to be when he grows up. Apparently, what Ben would most like to be when he’s all grown up is a DJ. In a candy store.

I probably should have seen that coming. After all, he did say in a recent conversation about heroes that his were Neil Diamond and Mr. Peanut.

Come to think of it, during that same conversation, Lucy claimed that Flo from Progressive was her hero.

Maybe now's a good time to check in with Lucy about what she wants to be when she grows up.

I'll get back to you.

Control Freak

 “If you hold on to the handle, she said, it’s easier to maintain the illusion of control. But it’s more fun if you just let the wind carry you.” –Brian Andreas

Maggie’s parents and her 90-year-old grandmother have arrived from Ohio. They’re moving here to be close to Maggie and a bigger part of their grandkids’ lives. They’ve rented a house nearby, but stayed with us for a few days while they readied the house and waited for the truck with their belongings to arrive. So the Crandler house has been even more chaotic than usual (if you can imagine).

One morning, Maggie’s dad found me in the kitchen getting my coffee, put his arm around my shoulders and poked a little fun at me with a keen observation: “Every morning I walk past your room and see your perfectly-made bed and I would swear, were it not for the fact that there’s not enough floor space in your room to do so, that you had slept on the floor next to it, rather than in it. And every morning I think, 'there’s someone trying to carve out a little slice of order amid chaos'.”

Maggie’s dad is a very astute man.

I do, in fact, protect rather fiercely the 8 x 11-foot space in this house that is mine alone, for I am one who appreciates order and predictability and who enjoys at least some measure of control when it is possible. Perhaps it’s no surprise that I have a son who very nearly requires these things.

Recently, a long break from school, the holidays and the arrival of Maggie’s family has made for an extended interruption of our routine, and Ben, understandably, has been a little off his game. I encourage him to try different strategies to cope with his anxiety with some success, but it’s an arduous (and probably life-long) process for Ben and kids like him. So, in addition to encouraging him to work hard to accept what he cannot control, I work hard to control what I can for him. You might call it over-parenting or hovering, or even whisper “helicopter-mom” or "control freak" behind my back. Unless you’ve walked in my shoes (or perhaps lived in my household) it would be difficult to understand.

I serve donuts on Sunday morning… no matter what. And say the exact same thing at bedtime every night… no matter what. And always, always serve corn on the white plates (never the green)… no matter what.  I control what little I can for Ben because there’s so very much that I cannot. I consider it to be just about the least I can do for him.

I will most certainly continue to hold on tight to the handle so that I might maintain the illusion of control when it helps Ben…or me. And I will do so unapologetically. But I will also try to remember to let go whenever I can and experience the fun of letting the wind carry me.

The Space Between

An old friend called this week and told me a story about introducing a woman he’s been dating to a visiting family member. Politeness dictated she come inside and meet my friend’s aunt, but she wasn’t ready to meet the family and it resulted in tension between them. I told my friend that while I understood his girlfriend's not being ready, I hoped she understood that there was a lot of space between coming inside and politely saying hello to a boyfriend’s visiting aunt and joining his entire family for their Christmas morning celebration.

And that got me thinking about space.

My boyfriend and I are in kind of a weird place at the moment. Ours is a long-distance relationship, but we’ve decided we want to be together permanently. He plans to move to Seattle and we’re both so excited about the prospect we can hardly stand it. But between the prospect and the reality is a lot of space. Finding a job, a place to live and the money to fund the move all have to happen before he can get here. We’re trying to not let the stress of all that must happen before we can be together diminish our happiness, but it’s hard. Some days the space between the prospect and the reality seems insurmountable.

My sweet Ben is doing so well in school that he might “test out” of special education services at the end of the school year. I’m so proud of his incredible progress and yet so scared of how he will handle it when he must go it alone at school. The space between appearing typical enough to test out of services and actually leading a typical existence scares me. What if I can’t provide him all the help he needs?

I’ve written recently about some pretty big projects to which I’ve committed myself, and at the risk of sounding like a broken record, I worry that I’ll disappoint someone, most likely myself.  The space between my intentions—to chair the autism walk successfully, complete the school yearbook on time, finish the first 50 pages of a book, submit articles to publications on a regular basis (and of course, mail birthday cards in a timely fashion)—and that which I will actually accomplish is causing me to feel anxious.

I’ve been feeling scared, frustrated, overwhelmed and apprehensive about the space between, but my conversation with an old friend—the one that got me thinking—made me realize that I’ve been looking at it all wrong. The space between isn’t something to be feared, endured or overcome. In fact, the space between may just be what life is all about. In “Beautiful Boy,” John Lennon wrote, “Life is what happens to you when you’re busy making other plans.” Perhaps the key is simply learning to find some joy, no matter how small, in  that space between. That space where life happens.

The space between exchanging niceties and joining the family, between prospect and reality, your child’s reliance on you and his burgeoning independence. The space between an idea for a book and a completed work, between economic struggle and financial freedom, intentions and accomplishments. Quite simply, the space between where you are and where you’re going—between who you are and who you want to be. Life happens in the space between and I believe it’s possible that whether or not we can find joy in that space may very well determine if we can find joy in life.

As I did this week, I often have to remind myself to look for the joy in that space between. Sometimes I have to look very hard. But each time I manage to find some joy there, I hope I’m teaching my children an enduring lesson: always keep an eye on where you’re going, but remember to find joy in the space between while you’re getting there. Revel in the messy, undone-ness of it all. Embrace the possibilities that can only exist in that space. Feel the fear that lives there and move forward anyway. And when you get to where you’re going, celebrate your success, enjoy the rewards of having gotten there and even pat yourself on the back.

And then, Ben and Lucy…make some more space.

A Beautiful World, a Life That's Too Short & Plenty of Big-Girl Panties

 “She said she usually cried at least once each day not because she was sad, but because the world was so beautiful and life was so short.” –Brian Andreas.

Not only is life short, but it also seems to fly by at breakneck speed. And like most everyone, I often find myself short on time. I wrote a post here recently in which I lamented my many shortcomings of 2011 and promised to model my future behavior after the illustrious and prolific Harry Harold, the Heagler Elf-on-the-Shelf. I even went so far as to strongly imply that I would send you a birthday card in 2012. It’s possible I spoke too soon, however, so please don’t hold your breath. I’d hate to be responsible for your passing out and hitting your head.

After the 2011 autism walk, the co-chairs of the event and the Pacific Northwest Manager of Autism Speaks invited me to dinner to celebrate our success and talk about the 2012 walk. I knew that they would ask me to be more involved in the planning committee and on the day I was scheduled to meet with them, my roommate, the consummate volunteer, sat me down over breakfast and gave me a talking-to about knowing when to say “no."

I went to dinner fully expecting them to encourage me to become a full-fledged member of the planning committee and reasonably prepared to say “no.” So you can imagine my surprise when they asked me to co-chair the 2012 Walk. Co-chair an event of this caliber? But that's a big-girl job! And even more surprising than being asked was hearing the word “yes” come out of my mouth. I’m still not entirely sure what came over me. I am, admittedly, a little concerned that I've agreed to something that’s beyond my skill set. But I’ve decided to put on my big-girl panties and give it my best shot (fortunately I have about 47 pairs from which to choose—big-girl panties can be hot-pink lace or leopard-print...right?). So 15 minutes into dinner and I'm co-chairing Walk Now for Autism Speaks Puget Sound 2012 (and did I mention 2013 as well?). Why not, right? Now that the holiday season is over I have an open slot in my schedule from midnight to 2:00 am.

In 2012 it’s likely I’ll continue to cry at least once each day because the world is so beautiful and life is so short. But the cry will have to be brief because I have a lot of work to do. And nothing could make me happier.

What Would Harry Harold Do?

So here’s the thing: while, by most accounts, it’s been a banner year for me, I feel as though I’ve let some things slip through the cracks.

• How many of you got a birthday card from me this year? I can tell you it wasn't very many.
• How often have the kids and I gotten together with my beloved Boozy Mommies and their delightful children? Not nearly enough.
• Did I forget that your mom was in the hospital, your daughter was trying out for cheerleading, or your son was waiting to hear about a college scholarship? Yep. I probably did.
• Did I fail miserably to accomplish my goal of posting to this blog at least once each week? Yes, I’m afraid I did.
• Did I haphazardly slap together my kids’ birthday parties at the last minute? Uh huh. I did that too.
• And don’t even get me started on that towering stack of papers on my desk at home that never seems to get any smaller.

I'm sorry for all of the above, I truly am. Looking at that list, you might think I completely suck (or more to the point, I might think I completely suck) were it not for a few good things I did this year as well. I took on more time-consuming roles as a volunteer and I did spend time on my writing albeit outside of this blog, attending a writer’s conference and even entering a contest. I raised so much money for Autism Speaks I was asked to speak at the opening ceremonies of their walk. And oh yeah, I added a whole new relationship to my life. A whole new person to love. A whole new wonderful, thrilling, not-sure-how-I-lived-without-him way to spend my time and energy (thank goodness).

And while I certainly wouldn't wish away any of these exciting, new things in my life, I do wish I could have all these and still keep up with everything else that means so much to me, most importantly being a thoughtful friend and good mother. I want to have my cake and eat it to. Who doesn't? I mean what’s the point of cake if you’re not going to eat it—am I right?

So maybe this is a time of transition in my life and I need to modify my expectations a bit, rethink my time-management and prioritize more thoughtfully. Or maybe I just need to ask myself, “What would Harry Harold do?”

Harry Harold is our Elf on the Shelf. A truly beloved holiday tradition for the Heagler family, Harry is pure magic—pure don’t-care-how-long-it-takes, get-the-job-done, who-needs-sleep?—magic. Harry doesn’t think twice about spending an hour prying apart an entire bag of stale marshmallows to stage a snowball fight with Lego Guys or meticulously frosting Cheerios to make donuts for an elf tea party. He doesn't bat an eye about losing sleep to finish someone's laundry (folding it super-tiny) or put up the Christmas tree so it would be ready to decorate in the morning. He doesn’t balk at making a huge mess to delight the children of the house even knowing he’ll have to clean it up himself. Harry goes the extra mile, always thinks of others and never forgets what’s important. And he’s hilarious to boot.

Harry is my idol and “What would Harry Harold do?” may just be my new motto.  Expect big things from me in 2012…maybe even a birthday card. It could happen.

How Many Times?

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." -Elizabeth Stone.

But what happens when the child walking around with your heart is particularly vulnerable? When he cries because he’s not invited to a party, my heart breaks right along with his. When he simply cannot manage what is expected of him, no matter how hard he tries, my heart breaks along with his. When unkind words cause him pain, my heart breaks with his. I often wonder just how many times my heart can break.

But whenever it seems my heart can’t break one more time, something will happen—something rare, pure and beautiful. He’ll be invited to a friend’s house to play. He’ll successfully navigate a tricky social situation as if it were second nature. Maybe he’ll even be elected Student Council Vice President amid a field of 30 students vying for only four officers’ positions. Or who knows? Maybe...just maybe...he'll shoot for the moon and try roller-skating. It could happen.

When Ben told me he wanted to run for Student Council office I was worried. What if he didn’t win? Would his reaction upon hearing the news of his loss in his classroom, among his peers, cause him embarrassment and alienation? I worried, but I didn’t stop him. Instead I helped him. I made sure he brought home the proper forms and signed up on time, ensured he followed all the rules about posters, listened to him practice his speech and role-played all the possible scenarios for when the winners were announced. I prepared him the best I could and then sat back and watched. Admittedly concerned, but (as luck would have it) needlessly.

I was able to go to school and watch the assembly where the candidates presented their campaign speeches. Ben didn’t seem at all anxious and did a great job, even throwing in an unrehearsed finger-point on “I want to be your Student Council Vice President.” But on the morning the winners were to be announced, he must have felt nervous because when I told him I needed to get to work, but that his special educator would be there should he need help, he paused, looked at me and said, “Can you come instead, mom?”

How could I refuse? I made a few calls and went to school with him. And I’m so glad I did, but not because Ben needed my help dealing with disappointment, instead I got to witness a truly exciting moment in his life. (But just barely, because while I was trying to appear cool, as if I was simply helping out in the classroom that morning, I left the room to make some copies and just made it back when the intercom crackled.) When the winners were announced, Ben’s name was among them. The room erupted in congratulations from his classmates and his smile was positively electric. It was pure magic.

A couple of weeks later, perhaps buoyed by his Student Council success, he decided to go to the school roller-skating party for the first time and he even wanted to try skating. I was nervous, but I shrugged my shoulders and said, “Let’s do it.”

Apparently I didn’t hide my dread as well as I thought, though, because Ben asked, “Mom, are you terrified?”

                                                      

I put an arm around him and said, “Not unless you are, Ben,” and off we went.

That night, Ben did something I didn’t think he’d ever do…he roller-skated. (I’m not even kidding.) And after a while, I think he even liked it…a little. I got blisters on my feet from stalking him—skating slowly behind him until he sensed me there and shooed me away and then racing around to check on him again, I skated roughly three laps for each of his one—trying to appear nonchalant while watching closely for signs of trouble. Seeing him slowly (and oh-so-awkwardly) propel his body around the rink took my breath away as if he were speed skating in the Olympics.  Another incredible achievement for Ben that I certainly could not have predicted—and just when I thought I couldn't be any more proud of him. He never ceases to amaze me.

I’m certain I will still periodically wonder just how many times my heart can break as it walks around with Ben, outside my body in this great big world that often seems like it wasn't really made for him. And while there’s no way to know the answer to that question, I know one thing for certain...my heart can break at least one more time than Ben’s can.

So keep shooting for the moon, Ben. I'll be right here to scoop you up should you fall (but far enough away so that your friends won’t notice—I promise).

Why I Walk

This weekend I’ll be participating in Walk Now for Autism Speaks Puget Sound. It’s an event in which the kids and I have participated for years. We started walking for autism even before Ben was aware he had autism. The event is important to us. We raise money, recruit walkers and design truly awesome Team Heagler t-shirts (and sometimes even tie-dye them). And this year, I’ve even been asked to speak at the opening ceremonies. Among others, I will be speaking for three to five minutes on the topic of “Why I Walk.” That seems easy enough, right?

I walk for Ben. Obviously. In my speech I will most certainly say that I walk for Ben. Not because I want to change him, but because I want to affect change for him.

In my speech, I also plan to say that I walk for Lucy. Not only because she’s helpful, compassionate, protective and wise beyond her years, but also because I wish she didn’t have to be.

And finally, I plan to say that I walk for myself in the hopes that I might have the strength to raise awareness, change opinions and advocate for these kids. But not just for me – for all the moms who walked this road before me and all the moms who will walk this road after me.

Three to five minutes – Ben, Lucy, me. That’s all I’ll have time for, but that’s not all there is. I walk for so much more.

I walk for the Crandells, our family of choice. Because they love us for who we are and support us without reservation, hesitation or conditions. They’ve seen it all and like us anyway. They’re my heroes. All three of them.

I walk for Suzanne and Gretchen, the original Boozy Mommies, who have been with me from the beginning, through thick and thin (and god knows how many bottles of wine) and who have always taught their kids that Ben is just Ben…their friend.

I walk for the amazing Miss Melissa, part-time nanny turned Boozy Mommy, who has probably seen me cry more than anyone in this world. Melissa was in my house day in and day out when Ben was a baby and through his diagnosis. We gave her a truly crappy, part-time nanny gig and in return she gave us friendship, compassion and loyalty.

I walk for Troy who has enough love in his heart for all of us.

I walk for The Divine Miss Jane whose baby gift – an amazing, lovingly-compiled CD set – I hold responsible for Ben’s love of music.

I walk for Ben’s friends at school…Mallory who looks out for him, Erika who empathizes with him and Angie who includes him.

I walk for Vicki and Kirk who are never afraid to take Ben on an adventure, even knowing it could go terribly wrong and they might have to turn back at a moment’s notice.

I walk for grandparents who love him unconditionally.

The list goes on and on....I could certainly never recognize everyone (as much as I wish I could). I walk for all of you who laugh with us and cry with us. Who cheer, encourage, support and commiserate with us. Without you, we’d be lost.

Team Heagler ROCKS because of you.

Click here to see my walk-day speech

Never Enough

Ben’s birthday is tomorrow. I can hardly believe he’s going to be ten and that I am the mother of a kid whose age is in the double-digits. Time flies and in an instant there’s a “tween” where your toddler used to be.


Earlier this week, during a particularly challenging situation, I offered to buy my nearly-ten-year-old a $4.99 package of Nerf darts to replace the ones he had shot onto the roof. With considerable effort, Ben choked back tears and said, “That’s OK, Mom – you don’t have to. You've already been put through enough with me."

Now I’m certain I’ve never uttered those particular words to Ben and I’m not sure who might have. It seems strange to me that he would come up with those words all on his own. But while I would most certainly go full-scale momma-bear (and decidedly Southern) on anyone who would say that to my sweet Ben, I honestly wouldn’t spend a moment trying to figure out who (if anyone) did. My only concern was making sure Ben understood there is simply no such thing as "enough” when it comes to moms and their kids.

So I looked at him incredulously and said, "Enough? What on earth do you mean enough? You're not even 10-years-old yet, Ben! I have so much more to be 'put through' with you, my love." (Thank goodness.)

Enough? Pfft. Puh-lease.

That conversation got me to thinking, though, about what Ben has “put me through.” When Ben was born he took my idea of what it meant to be a good mom, swung it around over his head, smashed it on the ground, jumped up and down on it good and hard and peed all over it (a couple of times).  But then the strangest thing happened. When I picked up that twisted, shattered, ruined mess of my idealism, what I had was far more beautiful than anything I had previously imagined. After what Ben has “put me through,” the person I see in the mirror is a far better mom than any June Cleaver ideal I could have conjured up in my mind. What Ben has “put me through” is nothing short of a transformation. And for that I’ll never be able to thank him enough.

Happy Birthday, my sweet Ben. I love you all the time. I’m proud of you every day. You awe, inspire, humble and teach me. How did I ever get so lucky to be “put through” so much?

Shining a Light on Autism

This weekend I replaced the lightbulbs in my outdoor light fixtures with blue bulbs in recognition of World Autism Awareness Day. This weekend I shined a light on autism and encouraged others to do the same. A small gesture for each of us, but combined with thousands of others all over the world, the effect of that gesture was anything but small.


Autism has been a part of my life since my son, Ben, was diagnosed when he was 2 1/2.  I believe autism is just a part of who Ben is.  And while I would do anything in my power to help him manage his autism, I don’t think I would change it – I really don’t. It's my goal to give him the tools to do whatever he wants to do in life. It's my goal to make things less hard for him. And it's most certainly my goal for him to experience life, relationships, joy and love as fully as his neuro-typical counterparts. But do I want him to stop making endless playlists? No. Do I want him to stop alphabetizing my CDs? Good lord, no. Do I wish he didn't remember every joke he’s ever heard and bust them out with less-than-stellar comedic timing at the oddest moments? Not really. Do I wish he wouldn’t memorize the order of every song on every Now! CD ever made, quote completely out of context from a movie and try to pass it off as conversation or tirelessly arrange and rearrange Lego Guys in his bedroom? No – I really don’t. It's all part of the package that is Ben Heagler - part of his truly wonderful "Ben-ness."

And while I wouldn't want to change my Ben, I do dream of a more tolerant world for him.  During Autism Awareness month, and always, I dream of a world where kids like Ben - and kids with differences of all types - are embraced and bullying them is unthinkable. A world where the strengths of the quirky kid are celebrated like those of the star athlete. When I sometimes post "I believe intolerance is intolerable" as a Facebook status, I am speaking globally about race relations, religious freedoms and genocide, but I am also speaking very personally about my own quirky kid and thousands of others like him. Kids who "flap" when they're excited or "scootch" on the floor like an inchworm to calm themselves, or who sit at a computer for hours on end typing a 610-song playlist entitled ZZ Top (which inexplicably contains not even one ZZ Top song).

When Ben, Lucy and I gave away blue lightbulbs to our friends last week, Ben thanked them for participating in Light It Up Blue for Autism Awareness. And I know he’d want me to express our thanks here as well. The Heaglers thank those of you who shined a light on autism by putting a blue bulb in your outdoor fixture this weekend. We thank those of you who donate to autism causes and who read this blog to learn more about life in a family living with autism.

And I, personally, thank those who offer an understanding heart, kind word or encouraging smile. Thank you for sharing a cup of coffee, glass of wine (or the occasional shot of tequila) with me. For laughing and crying with me. And for offering a hug… to me and thousands of other parents just like me. All of us doing our best every day to give our kids the tools they need to live the lives they want while preserving that which makes them "them."  Doing our best to raise our kids with grace, dignity and the respect they deserve.

Can't Touch This

This weekend, Lucy had two different friends over within two days, eliciting from Ben the question every parent with a kid on the autism spectrum dreads: “How come I never have a friend over?” I stayed calm. I kept it casual. Easy-breezy. “Huh. That’s a good question, Ben. Why don’t you give me the names of four friends you might like to have over and I’ll see what I can do.” Ben promptly produced a list of names of four boys, all of whom have unlisted telephone numbers and none of whose parents speak English. I like a challenge as much as the next girl, but come on! Seriously?

So I called the first kid I could think of with a published telephone number and english-speaking parents. Ben sat next to Carter the night before at the school talent show. It wasn’t much to go on and I had no expectation of finding this kid at home, but a girl’s got to try. So I left a message and that done, took a minute to consider my options. I decided to go with: (a) pretending I was completely confident Carter would call back any minute, (b) acting as if nothing could possibly go wrong, and (c) distracting to beat the band. I took a deep breath, turned and smiled at Ben and said, “Hey Ben, are you hungry?” fully intending to feed him anything he asked for.

He looked at me incredulously and said, “Mom! Do not interrupt your son when he’s singing MC Hammer.” Apparently with all my mental gymnastics, I had missed the fact that Ben had been dropping some Hammer Time on me. I stared at him blankly, a little off my Conversations-With-Ben-Game (you really have to be on your toes). Ben shrugged, walked past me into the kitchen and said, “It’s in all the parenting books.”

While he fixed his lunch, he announced each move in a booming sports-announcer voice. “And now he gets a knife, spreads the jelly on the bread and puts the knife in the sink, ladies and gentlemen!” (And then quietly, under his breath, “Puts the knife in the sink, ladies and gentlemen.”) When he was done announcing every last detail of his lunch preparation, he stood in the doorway of the kitchen, saluted me and sat down to eat. So I took my own lunch to the table and sat down next to him.

While we ate, Ben explained to me that 40% of human excrement is composed of living organisms and advised checking my own excrement closely if I doubted his claim. I nodded thoughtfully and wondered aloud if I would need a microscope for that. He then went on to tell me why I should never drink the water from an airplane bathroom sink. I assured him I would never consider such a thing even without his stern warning, but he still launched into a lengthy explanation of the Boeing Corporation’s water filtration system design anyway. I think my eyes glazed over a bit, but I don’t think Ben noticed.

When he ran out of steam on the topic of water filtration and human excrement, I smiled at him conspiratorially and asked if he wanted whipped cream on his Thin Mints. He raised his eyebrows suspiciously and said, “Seriously?” Yep – seriously. And how about a couple more while we’re at it? And then, while Ben was marveling at the taste sensation of canned whipped cream atop the chocolately-minty goodness of a Girl Scout cookie, I nudged him with my shoulder and said, “Want to play What Tastes Terrible With Mustard?” He smiled his most devious smile and said, “Thin Mints and mustard.” I scrunched up my face, said, “Eewww!” and countered with, “Mustard on butterscotch pudding.” Ben laughed a truly infectious belly laugh and the game was on.

Carter never did call back and eventually Ben realized I was intentionally distracting him from that fact. And even though his good mood subsided with that realization, I’m pretty sure I sensed appreciation from my sweet boy for the laughs and the fun we had shared that afternoon while Lucy played downstairs with a “real friend.”

I love me a Ben Play Date. Carter has no idea what he’s missing.

Sorry About Your Shoes, Mom

It’s been a long couple of weeks at the Crandler house. Maggie’s been preparing to start a new job, I’ve been putting together a ten-page piece for a literary contest, the kids hand-made more than 25 Valentines each for their school friends and nearly everyone in the house has fallen victim to an ugly stomach virus. With everything going on I haven’t posted here in nearly two weeks. So tonight I poured a glass of wine and sat down to write. Unfortunately, the only story that came to mind is about vomiting. Weird, huh? I’ll do my best to make it funnier than it is gross, but if you’re about to have dinner, you may want to come back to this later.


I’ve written about Ben’s sensory issues here before, as well as his motor-planning difficulties. But unless you live with a kid like this, it’s hard to understand how those things impact your daily life. Haircuts and toenail cutting – perfectly mundane parts of most kids’ lives – were both monumental obstacles to be conquered for Ben (the toenails took years).

Vomiting poses a unique challenge. Ben can’t stand to be messy. At all. He’s been known to leave the dinner table to change his shirt if he spills water on it. See where I’m going with this? Vomiting = messy. And gross. And not at all predictable. It’s pretty nearly Ben’s worst nightmare. In fact, it’s so upsetting for him, his motor planning tends to break down as well. If Ben is vomiting, it’s likely you’ll have to hold not only the trash can for him, but also his head in the right position to hit the trash can. Oh, and you’ll probably have to find a way to control his hands too so they don’t fly around and inadvertently knock the trash can across the room. Helping Ben vomit is not for amateurs. Or sissies.  You should have seen me trying to explain all this to Maggie the other day when Ben was sent home after vomiting at school.  Maggie is unflappable like no one I've ever met, but I swear I saw the tiniest hint of fear in her eyes.

But my favorite Ben vomiting story involves a spectacular rally right at the end. (That’s right – I have a favorite Ben vomiting story. Is that weird? It is, isn’t it?) So anyway…

This particular day, I managed to hustle Ben to a tiny powder room in my house when I could see he was about to barf. By “hustled” I mean I put my hands under both of his armpits, picked him up off the floor and carried him to the bathroom holding him in front of me at arm’s length (have I ever mentioned my freakish physical strength?). Once in the tiny powder room, though, we didn’t quite make it to the toilet. Ben started to vomit and lost all control. He threw his head back and pretty much sprayed the entire room (including me) with an impressive volume of barf. When I finally managed to reign him in I wrapped my arms around his shoulders tightly.  We were facing each other, foreheads together and I was holding his head down with one hand.  All he could really see was our feet. It was then that he yelled at the top of his lungs (any ability to regulate his voice or anything else at this point was gone), “MOM! I AM SO SORRY I BARFED ON YOUR SHOES!” And I burst out laughing. I was covered head to toe in Ben’s barf, as was the powder room, but all he could see was my shoes. So for him those shoes were all that existed.

Maybe this isn’t a story about barfing at all. Maybe this is a story about remembering not to miss the forest for the trees. It’s true that sensory integration dysfunction and motor planning problems still impact our lives after all these years, but that was an impressive show of empathy on Ben’s part. See how far we’ve come?

Forest vs. trees. What a spectacular forest.

Are We Having Corn Tonight?

When Ben was little his auditory sensitivity ruled our lives. Certain sounds were physically painful for him. The squeals of particular children, Velcro, thunder, fireworks, the vacuum cleaner, hairdryer, blender and coffee grinder would all cause him to scream and cry uncontrollably. And forget about smoke alarms or sirens. Sometimes it could take up to an hour to calm him. And even after he’d stopped screaming, he was often on edge for the rest of the day.

When Ben was three-years-old we lived in the Fremont neighborhood of Seattle. The Navy flight demonstration squadron, The Blue Angels, perform at a Seattle summer festival every year and they would fly pretty close to our Fremont house during their practice flights. I tried to keep track of their schedule, but this particular day, the time of their scheduled practice flight had escaped me. I was upstairs when I heard the roaring engines approaching and getting louder. I yelled, “Ooooh shit!” in that stretched-out, slow-motion, action-movie kind of way and took off running. I knew Ben was playing on the back deck and I made a mad dash for him, but couldn’t reach him in time. When I got to him, the Blue Angels were directly overhead. The sound was deafening, but I could still hear Ben’s screams. The door to the house was wide open and only steps away, but he didn’t make a move towards it. He also made no move to cover his ears. We hadn’t taught him to do those things yet. He just stood there, in obvious pain and terrible distress, screaming uncontrollably. I scooped him up and ran into the house and spent the better part of the remainder of that day calming him down.

Ben’s autism diagnosis was new and I still had so much to learn. I couldn’t understand why he just stood there. I didn’t know about motor planning and executive function (or the fact that he had no command over either when he was in that much distress). The first goal we ever wrote for Ben at his first treatment center was quite simply for him to cover his ears with his hands when a sound was painful for him.

As is often the case with these kids, over the years, his sensitivity has changed and improved. While it used to rule our lives, now it’s an occasional inconvenience. And while I’m thrilled the improvement has been so dramatic, the unpredictable nature of the sensitivity that remains can prove challenging. We’ll go months at a time without a single sound setting him off. This afternoon an ambulance drove right by us on our walk home from school. The sound, quite frankly, hurt my ears, but Ben didn’t even flinch. I was amazed. But just a few hours later while playing with the other kids in the house, an innocent (albeit loud) squeal sent him running to his room screaming and crying. There is seemingly no rhyme or reason.

At a recent family dinner, the sound of forks scraping on plates more than usual when corn was served sent Ben over the edge. As soon as we figured out what was happening, we moved everyone's corn into plastic bowls and I promised never to serve corn on those particular plates again (our blended household has two types of plates and the ones we were using that night have a finish that is slightly less-smooth than the others making them somewhat louder when a fork scrapes across).

Ben sets the table nearly every night for dinner and every night since then, like clockwork, Ben asks if we’re having corn, even if it's completely illogical based on the other things we're serving (pancakes and corn anyone?). Sometimes with Ben and countless kids like him, progress doesn't look exactly like we'd hoped it would. Admittedly, there are still times when Ben forgets to cover his ears when sounds are painful. And one could argue that his asking if we’re serving corn night after night constitutes nothing more than a repetitive and ritualistic behavior. But I chose to call his repeated question progress in the area of self-management.

And progress is progress (no matter how strange it looks) so I’ll take it - even if I have to answer the same question every night for the next year... or two... or even ten.

No, Ben - we’re not having corn tonight. But I’m so proud you thought to ask.