All That I Cannot Say

I've often been asked why I write so personally about my life. People have, at times, wondered why I would lay open my life, my heart, my very soul for all the world to see. I've been asked more than once, “You're so talented. Why don’t you just write something else—like fiction?” I’m never really sure how to answer that question. People seem to think that writing is writing and if I can write about my own life I can surely make up a life to write about. But it just doesn't work that way. At least it doesn't for me. I write so personally about my life because once I started doing it, I had to.  I needed to.  But now when I cannot write about what’s on my mind and in my heart, it’s painful. Emotionally, physically, spiritually painful.  And believe it or not, as much as I share, there is much that I simply cannot.

Years ago a Facebook friend told me that she followed my posts like she would follow a favorite author. I was taken aback. I had no idea why she cared what I had to say, but I was flattered that she did. And I was inspired to write more. I began writing stories about my life as a single mom, my kids  and the occasional bad date and posting them as Facebook Notes for those on my friend list. Eventually a blog was born.

I’m ashamed to say I haven't cared for this blog-child as I should have. I haven't done what is needed for it to gain stature and readership. I haven't done what is necessary for it to become self-sufficient, or dare I dream…profitable. I've failed time and again to follow through with opportunities to advance it towards becoming a book. I've simply written. That’s all. And even that I've not done reliably, letting this blog-child sit silent for months at a time on more than one occasion. I've given in to the silence during the parts I cannot write.

I've been thinking about why I've not tried harder to somehow form this into a book. The answer is pretty simple: because it’s not a book—it’s life. Technically there’s a beginning and an end I guess, but even those elements are shaky. I have no desire to write about “the beginning” and let’s face it, “the end” will only occur when I’m…well…unable to write. The "plot" meanders and there's no discernible story arc. And my drinking, cursing, multiple divorces, questionable parenting and constant teetering on the brink of financial ruin illustrate that character development is limited at best. It’s not a book—it’s life. Messy, chaotic, erratic, unpredictable and confusing. It is at once mundane and exhilarating, hideous and heart-breakingly beautiful. It’s life, not a book. At least mine’s not. And given all the parts I cannot write, it would be a book with a lot of holes anyway.

I've also been thinking about why anyone wants to read about this life of mine. Why does anyone care what I have to say? I think that answer is simple too. It’s not because I’m extraordinary—quite the opposite actually. I believe it’s because I’m not. I’m someone you know. I’m your best friend who’s been divorced three times. I’m your brother-in-law raising an autistic son from a previous marriage. I’m the barrista at your coffee shop who had to file bankruptcy.  I’m the mom who’s terrified she's somehow “blown it” raising her children. I’m the girlfriend who fears she's unlovable. I’m the employee scared of losing her job. I’m the girl you see walking by, taking teeny-tiny steps and cursing the pencil skirt that seemed like such a good idea. I’m everyone. I’m you.  I believe that’s why you read—and I’m so grateful that you do—because it’s comforting to feel like you’re not alone. And because you read, I don’t feel alone either.

I’m going through a hole in my life right now—a part I can’t write—and I’m afraid I've once again given in to the silence (and just when it probably seems I would have so much to say). It just goes to show, things are rarely exactly what they seem. But because it hurts—it truly does—to not write what’s in my heart, I will try harder to find the parts I can share. Because even if I can’t write what’s right on top, I can probably write what’s been shoved over to the side or squished underneath. I will try again tomorrow to find one of those parts and write something good about it.

I really hope you’ll want to read it.

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.

What Could Go Wrong?

This morning I leaned my head back in the shower to rinse shampoo from my hair and noticed a single strand of longish, brown hair stuck to the ceiling with steam. The kids and I live in a basement apartment and consequently the ceilings are pretty low, but not low enough for me to simply reach up and remove it. I should have finished my shower, dried off, found a step stool and removed the hair from the ceiling in a safe and sane manner. But that’s not what I did. Where would be the sport in that? No, instead of taking the safe and sane approach, I looked at that hair on the ceiling, reached towards it and jumped, not once, but three times before successfully grabbing it.

The Center for Disease Control reports that there were 234,094 nonfatal mishaps in the bathroom in 2008. Eighty-one percent of injuries resulting from those mishaps were caused by falls and 67% of all the injuries occurred in the bathtub or shower. Also, according to the National Safety Council, one person dies every day in the United States from using the bathtub or shower. I’m only guessing here, but I’d be willing to bet most of those accidents, injuries and deaths occur in the absence of jumping up and down in the shower. And because neither Ben nor Lucy was home during my shower plyometrics, if I had fallen (as the statistics suggests I might have) and been lying unconscious in my still-running shower, there’s no telling how long it might have taken for someone to notice and add mine to the CDC's 2013 tally of bathroom mishaps. 

If you’ve read this far, you might be asking yourself why I’m telling you this bizarre (and let’s face it, unnecessarily long) story. The truth is, I’m testing out a new motto and this weird, little tale sets the stage perfectly. “I’ll drink to that,” “Don’t mind if I do,” and “I blame Justin Bieber,” each served me well, but now I'm thinking, “What could go wrong?” strikes just the right chord.

                                                                                            

So look out, Universe, I have a brand new motto and I’m jumping in with both feet. (No, not into the shower, silly. Didn’t you read the statistics on bathroom mishaps?) Jumping into my life and the exciting possibilities that exist there—even the really scary ones. Oh hell, especially the really scary ones. That’s right. Both feet, baby.

What could go wrong?

Hitting the Pause Button

Last weekend I met a woman similar to me. She has two kids – a son on the autism spectrum and a daughter who is not. A friend introduced us and pointed out my involvement with Autism Speaks. After we had talked for a while, this woman I had just met looked at me a little bewildered and said, “So you chair this event?” (She was talking about the Walk.) “You’re the person in charge?”

“Yep,” I told her. “Trust me—no one is more surprised than me.”

“And you’re a single mom? And you lead a Yearbook Club for Elementary School kids?” (I think here she added, “Who does that?” under her breath.)  “And you work full time?”

“Uh huh.”

“Where do you find time to do all that?”

I mumbled something like, “Oh, you know…” and let my sentence drift off knowing full well it had no ending. And just for a moment I saw myself through her eyes as she looked at me waiting for the end of the sentence that wasn't coming. What I saw was a capable, dedicated, somewhat sleep-deprived woman…who is just a little bit crazy. (In my defense, being just a little bit crazy is super-helpful in the getting-it-all-done department.)

For Christmas a friend gave me a framed quote:  “Now and then it’s good to pause in our pursuit of happiness and just be happy.” –Guillaume Apollinaire. A not-so-subtle suggestion that maybe I should, oh I don’t know, stop and breathe every once in a while. Pause. It’s a great idea…in theory. An idea I’ve been considering since receiving this thoughtful gift.

And then last weekend I saw myself through a stranger’s eyes. And I began to consider the idea a little more carefully.

When Ben was four he began to “sing his iPod” when he felt stressed. When I say “sing his iPod,” I mean that quite literally.  At first glance, it seemed as though he was singing songs at random for fun, or to self-soothe—not a terrible idea, really. But on closer examination, I could see what he was doing. He began by singing the first song on his iPod (if sorted by “Songs”) and continued in order until you stopped him. Singing the songs was not for fun—it was perseveration, not pastime. The iPod housed eight or nine hundred songs at this point so waiting for him to finish wasn’t really an option. Stopping him was difficult, however, because he so desperately wanted (needed?) to complete the task. Parenting requires that you get creative sometimes, and parenting an autistic kid is no different. So I got creative: I installed a pause button on Ben’s nose. It was important that it be a “pause” button and not a “stop” button because completion of the task was important to Ben and I didn’t necessarily want to keep him from that. I simply needed him to pause in his pursuit from time to time. It took some hard work to implement the nose-pause-button technique, but eventually Ben would pause without too much fuss whenever I touched his nose. (He later installed a "play" button on his chin, but that's a story for another day.)

It occurs to me now that I may need a pause button of my own (but maybe mine could be on my elbow, or my shoulder—somewhere a little more subtle than my nose). I have to admit, though, I’ve been worried about what might happen if I use that pause button. I’ve been wondering if I might pause in my pursuit of happiness only to find there’s no “happy” there to enjoy.

I sat with that worry for a while before arriving at the conclusion that it was a load of crap.  No “happy” to enjoy? Pfft. Just last weekend I finished painting a wall in my house that had been half-done for far too long. When I stood back and looked at that freshly-painted wall, the sight of it made me so happy I wanted to sing it a love song.

And of course there are my soul mates, coffee, wine and Dove Chocolate Promises. Those always make me happy.

Oh yeah—and those two wonderful, weird, charming and lovable, half-baked human beings I’m cooking? They make me pretty happy too.

I think I could work a pause into my schedule from time to time. What’s the worst thing that could happen?

Don’t answer that, just let me enjoy my pause.

You're Welcome

“This is not all the laundry!” My normally sweet and polite little girl put her hand on her hip and glared at me for a moment before turning on her heel and huffing down the hall, absolutely indignant that she couldn’t find the jeans she was looking for.

As I watched her stomp away, several thoughts occurred to me in rapid succession:

1.     Are you fucking kidding me right now? I did all this child’s laundry and now she's complaining about it?

2.     Did she really just put her hand on her hip and glare at me?

3.      Hold on. Is there laundry in the dryer?

4.     I could let that go. I don't want to fight with her and I'd love to have enough time for oatmeal. Letting that go would be easier. 

5.     If I ignore this crap behavior now I might someday let loose on the world quite a little asshole.

6.      And then, “Are you fucking kidding me?” again.

It had started innocently enough. "Mom, is there laundry in the dryer?” It was a reasonable question. Laundry in this house does not always travel from the dryer to neatly-folded-in-drawers in a timely manner.

But on this particular day, I had seen the task of laundry through to the end (or at least very near the end) and all the clothes were folded in stacks on my bed ready to be put away. So I said, “Nope. It’s all there on the bed. That’s all the laundry.”

And yet the jeans Lucy sought weren’t there. So clearly I was either, (a) cruelly plotting to derail her wardrobe plans for the day or (b) a complete idiot. Either way, she was pissed.

So she stomped down the hall and I went through my previously-mentioned mental gymnastics in what seemed like a protracted pause but probably amounted to a split second. Then, of all the possible responses to Lucy’s snit, I landed on, “You get back here, young lady!” Then I launched into a decidedly “Southern” tirade about respect, appreciation and common-damned-decency. And yes, I stuck the landing.

I mentioned in a recent blog post that it matters deeply to me what kind of people I let loose on this world when Lucy and Ben are ready to go out there in it. But raising kind, considerate, well-mannered children is exhausting and as it did on this particular day, it occasionally occurs to me that raising a couple of little assholes would be a whole lot easier.

Ben and Lucy are good kids easily 87% of the time. For the 13% of the time that they are varying degrees of rotten, it would certainly be easier to ignore that behavior and roll the dice that the 87% would win out. Easier has never really been my style, though, tired can be fixed with coffee and let's face it, no one likes an asshole. So instead of ignoring the 13% and hoping it won't persist, I take a deep breath, balance out my wine-to-coffee ratio and get back to the business of raising them right (even when “the business of raising them right” takes the form of a perhaps-louder-than-absolutely-necessary, Southern tirade).

Maybe someday they’ll thank me for their compassionate world-view, strong character and impeccable manners. Or maybe they’ll complain to their therapist about my unreasonable expectations, relentless harping and frequent Southern tirades peppered with questionable language. In either event, my response will be, “I always considered raising you right to be not only my obligation, but also my extreme privilege.”

Followed by, “You’re welcome, Lucy and Ben.”

One of Us

“Someday, the light will shine like a sun through my skin and they will say, ‘what have you done with your life?’ And though there are many moments I think I will remember, in the end I will be proud to say I was one of us.” –Brian Andreas

Lucy gave me a necklace for Christmas—a chain with three hearts dangling from it. Each heart is different and they're all jumbled up together hanging from a single hook in the center of the necklace. Lucy says the hearts are her, Ben and me. The hearts represent us.

I love being a part of “us.” It is perhaps my most favorite thing in the world, the feeling of belonging—in a relationship, a team, a group, or a family. I've spent a lot of my life in the pursuit of “us” in its many forms, often in less-than-constructive ways. And very often in ways that were reactive instead of proactive.

Looking back from my 45-year-old vantage point, I see clearly that I've spent far too much of my life reacting. Reacting to misfortune, pain or loss—to life and whatever it has thrown at me—very often in the pursuit of that intoxicating feeling of belonging. That feeling of “us.” Living life reactively often left little time for thoughtful consideration of the choices before me and as a result I haven’t always been proud of those choices. There are exceptions of course, the most notable of which are immortalized in fake silver and crystal hearts dangling from a chain around my neck.

I was married twice before I married Ben and Lucy's father. (Did I mention the questionable choices? I'll wait for you to close your mouth if you are among those who did not know this tawdry detail about me.) But while I had always known I wanted to be a mother, I never once considered having children during those first two marriages. I knew I wasn't yet ready to be the kind of mother I wanted to be. I consider growing a human from a seed to a fully-grown adult to be the most awesome responsibility life has to offer. I waited to have children until I felt I was ready to parent them with intent and purpose because it matters to me what kind of people I turn loose on this world. So I work hard to remain proactive rather than reactive in the way I raise Ben and Lucy. To remain present in the "us" that is our family.

In the past year I lost two important places where “us” existed in my life. One a romantic relationship in which “us” had never felt so comfortable. The other a relationship with chosen family who will forever be family in our hearts, but with whom our feeling of “us” changed dramatically when we no longer shared a house. The loss of “us” in each of these relationships was profound and those losses occurring so close together was especially painful.

Even though I love the feeling of belonging, in its many forms, I’m learning I must allow for some changes within that feeling. No, Troy and I will never become buddies, go on ski trips together and talk about or respective sex-lives. That “us” is a painful loss, pure and simple. But perhaps there’s another form of “us” for our chosen family, and if so, maybe it’s time I let go of my pain and welcomed it.

As much as I’d like to think Ben, Lucy and I will always be jumbled up together like the hearts on my necklace, I know there will be many future forms of “us.” I hope I will be able to embrace each one without remorse for the “us” that has gone, but with fond memories and anticipation of the “us” that is yet to be. I’m certain this is what the Universe has been trying to instill in me lately. Thank goodness the Universe is a patient teacher.

Like nearly all my accessories, my treasured three-heart necklace is an inexpensive piece of costume jewelry, but I have a plan to secretly replace each plastic element with its genuine silver, pewter, gold or crystal counterpart. I’ll likely do it piece by piece over time and eventually I’ll have a necklace as genuine as the “us” who inspired it. The “us” that I will always treasure the most, no matter what form it might take.

And when the light shines like a sun through my skin at the end of my days, I will most certainly be proud to say, “I was one of us.”

SUPERSTAR!

He did it!

Get in on the action! Click here to donate.

This morning Harry Harold greeted me with a Mary-Katherine-Gallagher-style SUPERSTAR move next to a sign announcing his fundraising success. He pushed my 2012 fundraising over the $10,000 mark in a mere two days. A truly impressive feat, but one I feel certain we can top. This is no time for an over-achieving elf or his equally-over-achieving host to rest on their laurels.

You may not know this about me, but I've never been one to leave well enough alone. (I'm sure nothing I've written here over the years would have led you to that conclusion. I hide it well.) I'd love to see Harry's fundraising keep going. He pushed me past $10,000 without even breaking a sweat. With enough buzz, who knows what Harry and I could do for the cause of autism research, advocacy and awareness.

Here are just few facts about autism:

• Autism affects one in 88 American children.
• More kids are diagnosed with autism spectrum disorders each year than with juvenile diabetes, AIDS and cancer combined.
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
• Autism costs a family $60,000 per year on average.
• Autism is treatable. Children do not "outgrow" autism, but early diagnosis and intervention lead to significantly improved outcomes.
• There is no medical detection for autism and no cure.

One in 88 can't wait. Click here to donate to Autism Speaks

Some of Harry's fans have been clamoring for a book chronicling his adventures (misadventures?). Harry's convinced a book deal is in the bag and has already promised to donate a significant portion of the proceeds to Autism Speaks. Please help us get there by sharing Harry's hellraiser/fundraiser antics on Facebook and Twitter. There's no telling what we can do together.

Everyone deserves to be heard. Click here to donate to Autism Speaks.