Celebrating Autism Un-Awareness

We have another off-topic blog post today, for something very close to my heart. I promise the next post will be more writing about writing. Meanwhile, April marks the beginning of Autism Awareness Month. My 9-year-old son and 2-year-old niece have both been diagnosed on the spectrum. Below is an essay I wrote on the subject of how great it feels to be unaware of autism. Thanks for reading, and remember that if you see someone wearing a puzzle piece pin, that puzzle piece represents a person who is loved:

Michael, holding his baby sister
at the top of the sliding board.
(Thankfully, I had my camera
with me that day.)

 Celebrating Autism Unawareness

It’s April – Autism Awareness Month. Time for puzzle pieces, wearing blue and experts who tell us that it’s a neurobiological disorder of epidemic proportions, but nobody knows what causes it. It’s probably genetic, but might also be environmental. But it’s definitely not vaccines. More research is needed.

Personally, I’d like to have an autism un-awareness month. I have to settle for the occasional unawareness day, like the one we had a couple weeks ago. It was a warm, pre-spring day at the playground, and my son Michael, age 9, was chasing his younger brother up the jungle gym. My 18-month old daughter got away from me and followed, up the steps to the highest point at the sliding board platform.

Honestly, if my oldest had not been off with her friends, I would have had her do it. But in a parental leap of faith, I put the baby in Mikey’s lap. He held her tight and smiled.

Then Mikey took his baby sister for her first ride down the big kids’ slide. Then they did it again. And again.

It was a small milestone for the baby, but a very big deal for Mikey. In that moment, he wasn’t one of the 1 in 110 kids diagnosed with an autism spectrum disorder (ASD) that everyone hears about each April.

For one afternoon, he was just a big brother, protecting his sister on the sliding board. It was an extraordinarily normal moment for all of us.

For Michael, his ASD means he struggles to maintain his coordination and balance, especially when at any kind of height off the ground, like on a jungle gym. He also has low muscle tone in his upper body, so he doesn’t always have the strength needed to do simple things, like hold his squirmy baby sister in his lap.

Mikey also has sensory issues. That means he’s easily overwhelmed by sights and sounds, and can’t eat many foods because the textures make him gag. He’s never had a slice of birthday cake. The spray of water stings his skin. Once, he tried for 10 minutes to play in a sprinkler because he saw the other kids having fun too. But it ended the way I should have known it would – with him dissolving into a meltdown.

If you only know autism from the TV’s Parenthood, that show usually gets it right from the parents’ perspective. But in real life, we don’t have the luxury of a fade-to-black commercial break when the tantrums start. The wailing and flailing can last all day. I’m lucky; Mikey’s pretty mellow. He only has one or two meltdowns a day, and they’re not usually physical or long-lasting. I know other parents who have to medicate their children because the tantrums are so frequent and violent.

Mikey is “high-functioning.” (That term makes me think of robots – he’s anything but.) He can speak. Academically, he’s on-target, assigned to an integrated classroom with other special needs and “typical” third graders. He has an education aide assigned to help him through each day because he needs constant reminders to stay on-task.

So I am lucky – I remind myself – that Mikey is able to cry out, “I’m a weirdo!” during a meltdown. He knows he’s different – and if he forgets, he has all the constant reminders.

While consoling him, I’ve tried to explain why he feels different, and that it’s okay. But I have no idea if he understands.

Even with three siblings, Mikey is lonely. He wants friends, and gets mad at me because I can’t get him one. I’ve tried. We just finished 10 sessions of a social skills group. (We called it a “friend-making class.”) I’ve arranged play-dates and signed him up for a special needs sports clinic.

But when he goes to these things, he often pulls away to do his own thing -- crazy dancing, or a word-for-word recitation about how to build a campfire. He can be hilarious. But he can also be inappropriate, like the time he repeated all the “big balls” wisecracks from Wipeout. If we try to pull him out of his little world and help him interact with others, he gets overwhelmed, and the tears well up again.

I already know more about autism than I ever wanted. In addition to Mikey, my two year-old niece was diagnosed on the spectrum just a couple of months ago. So in our family – even as we wear blue clothing, attach puzzle pins to our coats, organize walk-a-thon teams and promote research to identify a cause and effective treatments – we do these things while not-so-secretly wishing for more autism un-awareness days, like that day my son had on the playground. It’s one I’ll hold forever in my heart.

Personally, I think Mikey deserves more of them.

Heartfelt Words from My Dad

My father -- a Vietnam veteran who, until recently, has not shared a whole lot of his experiences -- wrote this letter this morning. He sent it to me because, "I thought you might be able to use it on your newspaper whatever thing."

It's called a blog, Dad. (And I say that -- rolling my eyes -- with love.) 

This blog is (usually) about writing -- how to write so that your words have an effect on people. Today, the lesson is 'writing from the heart.' And the lesson is an easy one: If you write the truth as you know it,  you won't have to worry about the effect of your words, because they'll have a power all their own:

To those of you who served, this letter is to you:

Welcome Home and Thank You for Your Service to Our Country!

Believe it or not, after all of these years, they have finally decided to say, "Welcome Home!" to the Vietnam Veterans.

There was actually a resolution passed in the House earlier this year designating March 30 2011 Welcome Home Vietnam Vets Day, by Rep. Richard Burr (R-NC) and endorsed by 5 other members of the house. – I’m impressed.

I happened to stumble across this in a news article from the VFW letter I receive periodically – I personally have certainly not seen a whole lot in the press (printed or electronic) or on the television.

And as far as a "Welcome Home" goes, this should go out to all Veterans, for any hazardous duty assignment, not just Vietnam. People ended up just as dead in Korea, Grenada, Mogadishu Somalia, Iraq, Afghanistan etc. It is a shame that it took the event of 9/11 to wake people up to the fact that veterans and their families make sacrifices, and that politics and service to this country are not a dividing line that determines whether or not you should thank someone for their service.

The military has been the mainstay of the defense in this country, and allows people the liberties that we all enjoy. A simple "Thanks" and "Welcome Back" should not have to be solicited – but sadly, that appears to be the point we have devolved to.

In my opinion, Vietnam got all the attention because of all of the political protests and the stigma brought out by the press coverage – everyone from every conflict should have been welcomed back. We all did a job, be it significant or insignificant, with several goals – uphold the Constitution, defend the people, obey lawful orders, get back in one piece -- or at least enough pieces to function .

Remember, all gave some – some gave All.  Celebrate that (for more than just one day a year) PLEASE.

Michael C. Bartha

Specialist 5

Hazardous Duty Service 1970 - 1971

HQ Company, 1^st Signal Brigade – Phu Bai

337^th Signal Co. M/W, 1^st Signal Brigade -101^st Airborne Div Camp Eagle

Active Service May 20, 1958 – March 16, 1973

Status – Disabled Veteran

Vietnam was one of the most boring experiences of my life, interrupted by moments of sheer terror.

My parents' wedding, February 7, 1970, one week before my father left for Vietnam

L'Chaim!

I had a humor piece about Purim published in the Philadelphia Jewish Voice blog. Check it out here.

This Was The Week in Words

Happy Friday everyone! Hope we make it through the weekend, what with the crazy 'Supermoon' that we're supposed to get tomorrow. Really, I think we've all had enough natural disasters for one week, but more on that in a sec.

This week in words, The Washington Post apologized and suspended its Pulitzer prize-winning journalist Sari Horwitz for plagiarizing stories from the Arizona Republic. Horwitz also issued her own apology. Sorry, lady. Deadlines are no excuse for stealing other people's words.  Meanwhile, over at The New York Times, the newspaper finally unveiled plans for its online paywall. It sounds overly-complicated, but Gawker's Hamilton Nolan sums it up nicely:

"For those of you inclined to bitch about paying to read NYT stories online: stop bitching. The fact is the paper needs the money. All papers need the money. In retrospect, it was a strategic mistake for newspapers to put their content online for free. Charging for online access is the way of the future. Get used to it. If you're going to pay to read journalism on the internet, you might as well pay for good journalism."

But the week's biggest words-related controversy came from comedian Gilbert Gottfried, who tweeted when he should have kept his quack shut. Gottfried was fired from his gig as the voice of the Aflac duck after posting a slew of really tasteless jokes on his Twitter feed about the earthquake and tsunami in Japan over the weekend. He has since apologized, and removed the jokes from his Twitter feed. But they're everywhere. Nothing really dies on the Internet. (Sari Horwitz, are you paying attention?) It turns out that Aflac insures a substantial number of properties in the disaster zone. Gottfried -- whose entire act is based on tasteless jokes, that's his thing -- was not the only one to say insensitive things (Rush Limbaugh, 50 Cent, we're looking at you), he's just the only one to have lost work over it. Honestly, I think Limbaugh's comments were far worse... because he was being completely serious. An actor who lost his gig as a Geico spokesperson after criticizing the Tea Party had an interesting take on the situation. 

The sex jokes, in particular, were baaad. But I'll I'll admit, I laughed at a couple of Gottfried's other jokes. (Personal favorite: "What do Japanese Jews like to eat? Hebrew National Tsunami.") That's a great bit of word play, and would be funny -- if hundreds of thousands of people had not just died or had their lives destroyed by an earthquake, a tsunami and now, multiple nuclear reactor meltdowns!! The torrent of news has been oh-so-heartbreakingly sad and terrifying. It would be nice to find something funny in it. Since there's not much, I'll take that silly Hebrew National Tsunami punchline. And then I'll take a cue from the Geico guy. Instead of tweeting jokes, or telling everyone how very-very-outraged I am, I'll do something more productive, like text 90999 to the American Red Cross to donate $10 to the relief effort, or make another donation to reputable agencies that are helping. Hope you will too.

Finally, tomorrow is also the Jewish celebration of Purim, which, from what I understand, is a lot like Mardi Gras, but without the beads and boobs. So enjoy life this weekend. Hug your kids (I'll be hugging mine.) Between the radiation clouds, California falling into the ocean and that crazy, crazy moon, we might not even make it to Monday.

The 1% Solution

In the recent The Feedback Loop post, Anonymous "JZ" mentioned that getting feedback on her personal writing was scary for her, especially since she wanted to write a semi-autobiographical novel based on her experiences.

At about the same time, I heard about a relatively new writer who -- after finishing a novel he had spent months writing -- was considering completely gutting his story. The reason: he thought of the main character as an extension of himself... and no one who read the story thought the main character was a likeable person.

Now, every writer has the prerogative to change their story to suit whatever objective they want to achieve. But this writer, until he got that feedback, was relatively happy with the story. It was solid. The events unfolded in a way that made sense. The characters were consistent. But the main character's behavior was morally questionable -- his deception and manipulation of his wife was the driving force of the story. And this writer had invested a good deal of himself into this character. As a result, when faced with feedback that called his character "a bad guy," the writer heard judgment not of the character, but of the story and -- by extension -- himself.

I used to fall into that trap myself. I had gotten better over the years, but it wasn't until I started taking the improv classes (new session started last week - yay!) that I really got it. You are not your characters. On stage, the audience is not laughing at you. They know nothing about you. They are laughing at the character you've created through the silly actions you take.

It is the same in writing. Readers aren't judging you. Ninety-nine percent of the time, they know nothing about you (except what you choose to tell them.) They're judging the character you've created.

It's the judgment of that pesky 1 % writers fear most. These are the people who do know you, who may know the origins of  a specific character, scene or idea . You fear what they'll think of you. ("He'll think I'm a pervert for writing that sex scene.") You fear they won't like what you have to say. ("That's not how it really happened. She's lying.") At it's core, the fear of the 1% comes down to: if they don't like some part of my story, then they don't like some part of me.


All stories -- fiction and non-fiction  -- come from something that is part of the writer. It's truth as you see it. Characters inspired by real people, and plot lines inspired by life events, are part of that. But in a story, the characters you create and the life events you choose to use should only appear in a story for one reason: to serve the telling of your story -- the "truth" that you want to tell.

Writers can't control how readers will judge their story. All writers can do is tell their stories honestly, truthfully, to the best of their ability. Most of the time, the 1% of feedback you fear hearing the most is going to come from people who know you best, or at least understand and care about what you are trying to accomplish with your story. They will know the difference between you and a character, because they know you.

When a story contains truth -- especially a hard truth -- your 1% readers, 99% of the time, will respond not with anger, but with love. They will like you more, understand you more than they did before. And so will the other 99%.

This Was The Week In Words

Breaking news... (because I just heard about it this morning): Funny Or Die, the website founded by Will Ferrell and Adam McKay and known for its viral comedy videos, announced this week that it is launching its own book imprint, Funny Or Die Books. They say their business model will be to take ideas from authors, polish them, then sell to publishers with the backing of the Funny or Die brand. I have mixed feelings about this news. It's great that there's a new publishing imprint out there for up-and-coming writers, but it sounds to me like they're using the Internet's 'site aggregator' model of publishing by taking other writers' work and making it their own -- appropriating the writer's work in the process. Writers need to learn how to build ourselves as our own brand (sounds like a WordNerdGirl post topic we should cover.) What do you think? Funny Or Die Books: Good or Bad? Comment below.

Related to that, is this really an "accidentally beautiful" photo of printers' ink dumped on a highway, or really a metaphor for the newspaper industry?  I got a big laugh out of these headlines -- all grouped together on Yahoo News this morning. It looked like the web equivalent of a supermarket tabloid rack:

• Will March 19 'Supermoon' Trigger Natural Disasters?
• Zombie Ants Fall Victim to Mind Control Fungus
• Photos of Hitler's Wife Stirs the Web

And try as I might, it was impossible to avoid the fallout news generated by last week's meltdown of He-Who-I-Will-Not-Name-because-I'm-tired-of-hearing-about-it-and-more-headlines-just-contribute-to-the-ongoing-displays-of-coked-out-narcissism, but I must say I enjoyed Jon Cryer's appearance on Ellen earlier this week, as well as his admission on Conan O'Brien's show yesterday that he is, indeed, a troll. That may be true, but he'll always be Duckie to me.

Finally, water, water is everywhere as the Philadelphia/South Jersey area deals with widespread flooding from last night's rain, and Japan, Hawaii and the West Coast of the U.S. is reeling from an 8.9 earthquake and resulting tsunami. Forget next week's Supermoon, today is the day we should really be worried about, as the natural disaster is still unfolding. Sending good thoughts and whatever help we can to the victims half a world away. 

This Was The Week in Words: Inaugural Edition

Welcome to the inaugural edition of This Was The Week in Words, a recap of news, events and words that (usually) crazy people said during the past week...

• Melissa Leo made Oscar history when she dropped the first-ever f-bomb during her Best Supporting Actress acceptance speech. Surprised it took this long for that to happen.
• Bristol friggin' Palin signed a book deal to "write" her "memoirs." Hoping she has a bestseller, and that she's setting aside the money for all the therapy her kid will need.
• The Washington Post featured a very entertaining story about sign-language interpreters who sign music lyrics to concert audiences. Felt a little sorry for the woman tasked with translating Lady Gaga -- and I now have "disco stick" seared forever into my brain.
• Gave a half-hearted, "Yay," for free speech when the Supreme Court upheld the First Amendment rights of the Westboro Baptist Church to act like hateful, ignorant puke-faces at funerals.
• Speaking of, the week really belonged to the Lord Voldemort of celebrities. In less than a week, He-Who-Shall-Not-Be-Named-Here redefined the word "winning" -- and oh so many other things -- after he napalmed, well, everything in his life, as well the lives of his family, his friends, his fans, and everyone who was lost their jobs along with him when CBS canceled his top-rated (that I will never understand) sitcom. Funny or Die sums up the whole tragicomic mess as well as anyone. If you see Martin Sheen, give the poor man a hug for me.