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.

THIS Close

Harry Harold, the intrepid Heagler family Elf on the Shelf is THIS close to his fundraising goal!

A few days ago he set out to be the first elf ever to raise $1,000 (or even more) for charity. If he does this, the money he raises would push me past the $10,000 mark as an individual fundraiser for Autism Speaks (something that still seems unfathomable to me).

Harry's also pretty sure that this accomplishment will make him a shoe-in for Elf-of-the-Year. I had no idea such an award existed and I'm not entirely sure he didn't make it up, but on the off-chance he's telling the truth, I'd like nothing more than to see him hang that plaque on his tiny, elf wall.

As "Other Impressive Feats" go, this one would be huge. Please help us out if you're able.

Harry for Elf-of-the-Year! Click here to donate.

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

Brake Repair

"You cannot teach a man anything. You can only help him discover it within himself." -Galileo Galilei

The school district is currently re-evaluating Ben for special education services—a process that is required every three years. A variety of evaluation methods are used, including parent-reports. So a couple of weeks ago I sat down to answer 86 questions with Never, Sometimes or Often on a Behavior Rating Inventory of Executive Function as part of the process. I asked Maggie to go through the questions with me to offer her opinions as someone who has lived with Ben for nearly two years and to provide a sounding board for my perceptions as well. Many questions made us snicker and wish for an “Always” option, but question #55, “Has trouble putting the brakes on his/her actions,” caused me to turn to Maggie completely aghast and say, “Hold on. Ben came with brakes? Good lord—why didn’t anyone tell me? Those don't work at all! I need to get those looked at!”

Maggie chuckled and said, “Yes Lori. They’re standard equipment, but I guess it makes sense you wouldn’t have realized it. Lucy’s don’t work either.” Then it was my turn to chuckle. “I guess you’re right,” I said, cocking my head to one side and gazing up at the ceiling, lost in thoughts of my brakeless children careening through life at terrifying speed, wondering where they got such defective parts. Then Maggie jolted me back to reality when she cleared her throat and I realized she was staring at me.

“What?” I asked.

“Yours don’t work either.”

And I started to say, “What on earth are you talking about?” with just the right amount of righteous indignation, but the words stuck in my throat when my mind flashed to my illustrious, half-baked college career that I insisted must take place 1,200 miles from home for absolutely no logical reason, my (count them) three marriages, my take-no-prisoners mission to have children after the scare of losing an ovary at the age of 30, and more recently the 400 puzzle pieces I hand-cut for an Autism Awareness display at school (my hand still hurts a little) - just to name a few. Frankly, it was a dizzying array of images.

So instead of an indignant, “What on earth are you talking about?” I went with a nearly-imperceptible head-nod and, “Huh.”


It seems my brakes don’t work either and I might just be the last person to realize it. Who knew answering 86 questions about my autistic son’s behavior (and a good-natured barb from my keenly insightful roommate) would help me discover something new about myself.

And now that I realize they're broken, I should probably get my brakes looked at. Or not. I'm pretty proud of the awareness raised with those puzzle pieces and their accompanying autism fact-sheet.


And that take-no-prisoners mission to have kids after a health scare? That worked out pretty well too.

Until All the Pieces Fit

Puzzle piece created by the
daughter of a dear friend

This week I replaced my porch lights once again with blue bulbs in honor of World Autism Awareness Day. I “Lit It Up Blue” to shine a light on autism. But this year, wanting to go a step (OK several steps) further, I made a plan to Light It Up Blue at the kids’ elementary school as well.

I got permission to do an Autism Awareness display in the lobby. I was thinking strings of blue lights, an informational bulletin board and maybe an art project with puzzle pieces for the kids to decorate. But when I sat down with the person in charge of lobby displays, she didn't think my idea of asking the teachers to do an art project would fly. It’s close to standardized test time. Preparations are under way and teachers simply don’t have time for anything extra this time of year. She suggested sending home puzzle pieces for each of the school’s more than 500 students in their weekly “boomerang folder” with an informational sheet on autism attached. I thought it was genius. The kids could participate if they chose to without burdening the teachers and I could get an autism fact sheet in the hands of a lot of parents. But I hadn’t really planned on personally cutting out more than 500 puzzle pieces (and I wasn't entirely sure it was even possible in the time I had available). I told her I’d think about it overnight, but who was I kidding? Of course I was going to do it (despite Maggie's objection to the unreasonableness of the endeavor and insistence that there must be another way to do it and contention that somebody had to stop me and some other stuff about the Voice of Reason). The Voice of Reason and I have never really spoken the same language.

I made a plea for volunteers and gave out puzzle pieces to cut in packs of 25 to everyone who offered to help. And then I started cutting. Over four days, I cut puzzle pieces pretty much non-stop. I not only cut them while I watched TV, I cut while the girls roller-skated at Lucy’s birthday party, while the kids and I waited for dinner at our favorite local restaurant and while I got my hair colored. Truth be told, the act of cutting the puzzle pieces, in itself, raised awareness—at least in my little corner of the world—with all the explaining I did to the friendly strangers  curious enough to ask what the hell I was doing. By the end of the weekend I had personally cut more than 400 puzzle pieces, Maggie had cut nearly 100 (I knew she would...once she had given up on trying to save me from myself) and my rag-tag group of the all-time coolest volunteers on the planet had cut 250.  It was enough to put one in the hands of every kid at school and still have enough left over for the preschoolers and the extended-care kids to do a project with them.

I put up the display along with a few puzzle pieces decorated by the Crandler kids and my intrepid volunteers and waited for decorated puzzle pieces to come in and fill up the rest of the board. The more that came in, the better it looked. My sweet friend, Sandra, who has personally stapled dozens of these sublimely unique puzzle pieces to the bulletin board, said it’s the wall that love built. And I couldn’t agree more.

Ben's puzzle piece

Tonight Ben finally completed his puzzle piece for the Light It Up Blue display in the lobby at school. He took one of my blank puzzle pieces, turned it upside down and drew a face of a man with buck-teeth and a pencil-thin mustache. Under the buck-teeth he wrote the word Dictionary and under that he wrote the first 24 words in his pocket dictionary. Under that, he divided the round part of the puzzle piece vertically and drew mirror images of mountains which he labeled “Mt. Rainier” and “Mt. St. Helens”. And all around the outside of the puzzle piece he wrote "LIGHT IT UP" over and over again. It’s completely random, a bit peculiar and altogether wonderful. Just like him. I wouldn't have it any other way.

It’s Autism Awareness month and the Crandlers are shining a light on autism. You can too. Ask me how.

Maggie's puzzle piece representing
her corner of Ben's world.
I especially love that Lego Guy & Scary Clown are among
his army of supporters, friends & protectors on this piece. 

For more information about autism:

Click here to visit the Autism Speaks website or Click here to visit Autism Society's website

To donate to Autism Speaks on behalf of Team Heagler: Click here to donate to Autism Speaks on behalf of Team Heagler

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.

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