I’m Not in the Band, Yet

The thing most interesting about relationships is how they come in all sizes, shapes, and sounds. When I think about social media, I don’t immediately conjure thoughts of finding deep, meaningful relationships with strangers. The flaw in that comes from thinking of fellow human beings as “strangers.” Social media is words; words accompanied by something visual. In the words, though, is that person’s life – – their pain and fear and hope, their prejudices and self-doubt, their very bones, either strong and whole or forever weakened by many breaks, large and small. For me, their words have a sound, a musical style. In something as short as a Facebook status update, I know the musical accompaniment of your life. Your writing tells me.

Back when I began blogging and was more active, I made my way around to other blogs, commenting and meeting new people. I was breathless at all the new, exciting sounds, the music blaring from every corner. Over here was one of my favorites, a blog with a soft, sad melody playing very low, buried under the sounds of lively, friendly folk music. So many of the people are tone-deaf to the low sound, it goes by unnoticed. But I hear it.

Just over there is another favorite, writing so pure and honest, I feel pierced through the heart with the heat of its light. Each time it takes my breath away, but I come back again and again because I need the pain to remind me how much better I could be.

Right here, though, is one that encompasses us all. The music blares out over the high stone walls of Good Day, Regular People,  drawing us all in together where, at 7:00 a.m. on a crisp, sunny morning, we can’t help but all fall in line behind Alexandra Rosa’s big band as it bounces and jerks its way down Disneyland’s Main Street.

Her music draws us together, the ziiiiiiiip of the trombone, the rapid tap-tap-tap of the drums. We enjoy the gifts of our lives, sometimes dancing in sync with others, sometimes pulling away to let our hearts guide our own dance. As with life, there will always be a downbeat in the music, for just a moment, before the nudging wind-up into the next upbeat. In those moments, our breathing stops and our heart stops beating as the joy and happiness is ripped from our bodies, we struggle to keep moving, to keep up, to not lie down there with our tears and die.

But the upbeat brings us back, we jerk as we throw ourselves back into the procession, letting our souls be lifted again by the trombones, our hopes bouncing around atop the colorful balloons that bob and weave through the parade. Someone takes a needle with huge, bright red string, as thick as shoelaces, and with big, wide stitches they sew up the pieces that remain of our hearts, something we can squeeze and rest our cheek on as we smile and laugh, our feet moving in time with the beat.

It’s true I wish my own music was this pure, this full of goodness and joy, but it’s enough to know that someone else’s is. Maybe if I spend enough time here, my own music will begin to change. I’m deaf to my own music, but I know it must be something like the music to Smells Like Teen Spirit. Not that we don’t need that music, too, but I suppose the entire purpose of its existence is to want to be the big band music.

The cafe is just over there to the left, red and pink and white carnations in tall milk glass vases on every outdoor table. My favorite flower, I can smell them as we all bounce by, thinking maybe I should have stopped there a moment for some of their ice cream. But another time…I’m sure I’ll be back this way again.

As we approach the round-about, I smile and wonder how many times the bandleader will circle around it before heading down the main turnoff. I want to explore down each street that intersects it, but I’m afraid if I do the band may move on without me. I must come back, there’s a gorgeous emporium right over there, and a bookshop across the street. Maybe when I do, I’ll finally be ready to buy that enormous red hat with all the feathers.

As we make our way back along Main Street, I realize suddenly that the crowd is thinning out, there seem to be fewer of us following the band to the end of the line. It’s easier to make out individual faces now, and we smile at each other knowing we will stay to the end, we simply can’t give up the joy of the music.

Finally we all hear the change in the music, the subtle winding down of the tempo, like the trombone is running out of gas and sputtering as it takes us to our destination. And as we turn to take a final look back down Main Street, we see brightly colored balloons along the sidewalk storefronts, and further down the street you can make out someone in blue-striped overalls quietly sweeping aside the bits of life’s atrocities into a tidy rubbish bin, destined to return to the earth where time will bury our sins.

Such gratitude I have for this gift of music, given by strangers. Strangers that flow together, clashing like cymbals, accompanying each other in jam sessions, playing a long, slow dirge for those we miss. As for me, I’m not in the band quite yet.

I’m worse at what I do best
And for this gift I feel blessed
Our little group has always been
And always will until the end
– Kurt Cobain

Green Bloggers and Spam

The thing about blogging is that it’s this awesome, creative outlet for absolutely anyone that wants to do it. And absolutely anyone can read your words, interpret them, MISinterpret them, and misappropriate them.

 

Imitation is the sincerest form of flattery, they say. I don’t know who they are. Probably some asshole(s) that gets paid to write positive affirmations for magazines that are heavily photoshopped. What do they know?

 

Anyway, blogging… Sometimes you come across a really talented writer whose words seem to go straight through you, right to your heart. The writer at Lexistential.com is one of those writers. As such, there have been some in the blogosphere that have absconded with titles, sentences, and whole portions of what she’s written. Unscrupulous vagabond! But it got me thinking about how to borrow a style from someone without actually stealing. You know, take something you like and make it your own, while getting your message across.

 

I went with Dr. Seuss because, who doesn’t love Dr. Seuss? Goddamn it, you just can’t beat a good rhyme! So I give you my ode to unscrupulous bloggers and those in the (autism) community who do more harm than good.

 

Green Bloggers and Spam

 

Bloggers bloggers, small and green

Why you need to be so mean?

 

I can’t abide the theft of prose,

you smell worse than hobbit’s toes.

 

“Don’t kill your kids!” you squawk and shout,

Captain Obvious, you are a lout.

 

Parents crying, reaching out

You stomp and snort, deny and pout.

 

Families who in need of aid

You give them rhetoric that you’ve made.

 

“Call 9-1-1,” you loudly say,

Police will help you right away.

 

They arrive at your door,

And make a report, but nothing more.

 

But never fear!

There’s the blogosphere…

 

Pithy sayings, custom made.

All their readers gutted and filleted.

 

Your hollow words

and useless tools,

You play us all for insipid fools.

 

Because people know you offer naught

The emperor’s new clothes are what you’ve bought.

 

Now your ugly mouth

it foams with spittle.

 

Let me serenade you

with the world’s smallest fiddle.

 

I do not like

Green bloggers and spam.

 

I do not like them

Truth I am.

 

 

Social Media’s Unintentional Effect on Intellectual Property; or “Bitches Be Stealin’ Shit”

Social media has been a boon for aspiring writers. What better way to get yourself marketed than by utilizing Facebook, Twitter, and even Pinterest? Unfortunately, since anyone can use social media, there are many people that are not sophisticated about a little thing called intellectual property.

According to the United States Patent and Trademark Office, “A Copyright is a form of protection provided to the authors of ‘original works of authorship’ including literary, dramatic, musical, artistic, and certain other intellectual works, both published and unpublished. The 1976 Copyright Act generally gives the owner of copyright the exclusive right to reproduce the copyrighted work, to prepare derivative works, to distribute copies or phone records of the copyrighted work, to perform the copyrighted work publicly, or to display the copyrighted work publicly.”

But why am I telling you this?

Well, it seems there are a vast number of Facebook sites that are created with the sole purpose of posting inspirational pictures and quotes about disabilities. That’s really nice, right? It would seem so, but it’s not so nice when these sites put up a majority of pictures and quotes that they’ve taken from other pages. Now, it’s one thing to hit that little “share” button you see at the bottom of a post, but it’s another thing entirely to right-click, save to your computer or device, navigate to your own FB page, and then upload that image. Whether it has the owner’s name on it or not, it doesn’t matter. It’s still considered theft of intellectual property.

You can even find Facebook’s policies about intellectual property by doing a simple search. I did it for you:

Sharing Your Content and Information
 You own all of the content and information you post on Facebook, and you can control how it is shared through your privacy and application settings. In addition:

1. For content that is covered by intellectual property rights, like photos and videos (IP content), you specifically give us the following permission, subject to your privacy and application settings: you grant us a non-exclusive, transferable, sub-licensable, royalty-free, worldwide license to use any IP content that you post on or in connection with Facebook (IP License). This IP License ends when you delete your IP content or your account unless your content has been shared with others, and they have not deleted it.

2. When you delete IP content, it is deleted in a manner similar to emptying the recycle bin on a computer. However, you understand that removed content may persist in backup copies for a reasonable period of time (but will not be available to others).

3. When you use an application, the application may ask for your permission to access your content and information as well as content and information that others have shared with you. We require applications to respect your privacy, and your agreement with that application will control how the application can use, store, and transfer that content and information. (To learn more about Platform, including how you can control what information other people may share with applications, read our Data Use Policy and Platform Page.)

4. When you publish content or information using the Public setting, it means that you are allowing everyone, including people off of Facebook, to access and use that information, and to associate it with you (i.e., your name and profile picture).

5. We always appreciate your feedback or other suggestions about Facebook, but you understand that we may use them without any obligation to compensate you for them (just as you have no obligation to offer them).

I underlined some key points up there, in case you don’t want to read all that. Basically, you can go right ahead and use my words and pictures, but you are required to associate it with me by using my name and profile picture. You can’t just upload it on your page like it’s yours.

Now I wouldn’t normally write about such a tedious topic but, you see, my stuff keeps getting stolen! Oh sure, you might say I should be flattered. But if someone took something that you made, you probably wouldn’t feel flattered.

But what about the children, Flannery? What about the joy and love that we’re spreading?

Listen, that crap doesn’t float here. I don’t care if you’re saving baby unicorns by waving around these words and pictures you take, it’s still a violation of Facebook policy and intellectual property rights.

Wait. You’re going to tell me that your PHONE doesn’t have the share button? So basically what you’re telling me is that you have no self control, and are not responsible for your own actions. You simply could not wait until you got in front of a computer because that picture HAD to be made public, IMMEDIATELY, for the good of all mankind? Nope, sorry. That’s a pathetic excuse.

You cannot simply make an ignorance plea, especially if your entire FB feed is FULL of words and pics you’ve downloaded from someone else.

But I don’t want you to think I don’t care about the children. Or the baby unicorns. I do, I really, REALLY do. So as a service to children and unicorns and even baby kittens, I will go ahead and alert you to some of the biggest offenders on FB pages. You might not see any of my stuff, because I’ve reported them and demanded they be taken down and shared properly (or they have repeatedly taken work from other writers I know). But YOU, dear reader, may want to keep a vigilant eye on these dishonest, unethical, sorry excuses for spreading goodness and glitter losers.

And here you have it, the List of Shame (I will not link to them because I’m not interested in driving traffic to their pages):

Autism Different Not Less

Autism Spectrum Disorder Through My Eyes

Stop Discrimination Against Special Needs

Single Mothers Who Have Children With Autism

Asperger Syndrome Awareness

We are all interested in spreading awareness and understanding of autism. But our words and images are meant to be shared properly, not taken. Whether it’s in the name of awareness or not, they are still works that we have created. But when I or others have contacted these pages and asked for images to be taken down or shared properly and we’re told that they’re doing nothing wrong, and we’re just big meanies, then it’s a problem.

If you encounter this issue with your own work, my recommendation is that you first message the page and ask them to remove it and share properly. If they do not, or they try and engage you in lengthy discussions about why they should be able to do whatever they want, then you can report them to FB and request that they have the images removed.

Oy. Anyone remember when the biggest issue was with people plagiarizing from books? You know, those bulky things with lots of pages and words, and sometimes illustrations…

11 Things About Blogging

Today I realized that I’ve been blogging for over three years. That’s a long time, especially for someone that started this on a whim and had no idea what she was doing.

When you combine the blog with Twitter and Facebook, what you’ve got is a “community” of whatever your niche or topic is about. For me, that community is autism. I’ve learned that the autism community is unique in many ways, and sometimes it’s extremely difficult to navigate. Here are some things I’ve learned about it:

1. Parent bloggers are passionate about their children and their approach to parenting.

2. Self advocates are just as passionate about their own experience and point of view.

3. All this passion often bumps up against each other, and results in discord and, sometimes, bitter clashes.

4. People don’t blog because they want your opinions or advice. They don’t blog because they want you to tell them how to do it better. They blog because they feel that they have something to share, to contribute, to this community.

5. Most often, people blog because they want to connect to others so they don’t feel so alone, because this brand of parenting can be quite a lonely road. And I’ve seen some amazing support and friendship come out of this community.

6. Every once in a while, you run across someone who blogs because they think they know the best way to do things. And they feel really, really good about passing on their wisdom to you. And if you don’t agree, well then you are just on the wrong track, and how sad for you. It’s a good idea to avoid these people, who I refer to as having the “autism messiah” complex. Sometimes you will even encounter people that don’t have children who will try and tell you how to parent yours. Before you take their advice, think back to how much of an expert on parenting you were before you had children. Now go ahead and laugh, shake your head, and disregard their advice.

7. Most people in the autism community want the same things: inclusion, support, respect, and for autistics to be treated as equals. But getting everyone on the same page is almost impossible, because the other thing that everyone wants is to be heard. Autistics, parents, autistic parents, etc. But this group thinks they have more of a right to the microphone than that group, and so the only message that ever gets out is that we are a community of people that can’t get their shit together.

8. We all get burned out talking and reading and writing about autism. Everyone. And when you get burned out, that’s when you throw out the “fuck autism”s or the “autism can suck it”s. When that happens, the beast circles around on itself and tries to consume you. It’s better to just step back from social media for a while.

9. One reason for so much of the strife and division is that people forget they are advocating for different things. Parents are advocating for children. Self advocates are advocating for adults. The needs, abilities, and desires of children and adults are sometimes different. And what’s appropriate for children and adults is different.

10. Advocacy means standing for something, not against something. I don’t attack anti-vaxers, I support safe vaccinations for our children.

11. (Because, much like Spinal Tap, I go to 11.) There will ALWAYS be haters. Always. No matter how nice you are, no matter how mean you are, no matter how you try to avoid disagreement or drama, no matter what. Haters gonna hate.

Haters gonna hate.

The past three years have taught me a lot, not just about blogging, but about autism. I’ve learned who I can count on, and who I can’t. I’ve learned that autism isn’t the horrible monster in the closet that I thought it was. It just is. Good or bad, right or wrong, it doesn’t matter. What matters is your approach to it.

With all its drawbacks, I still love this community. It’s a great big virtual dysfunctional family. So I’m going to stick around for a while longer. None of that Ohmygod, I’m done with blogging so I’m leaving, but if you beg me to come back I will before the week is out drama here.

New Series: Who the Fu*k is That?

Many of you may be familiar with my unique and compelling artistic abilities. Perhaps you’re familiar with one of my earlier works, simply titled “Horse”.

HORSE, by Flannery. 2011

I’ve decided to turn this hobby into a weekly series. Each Wednesday I will post a drawing of another blogger. It could be anyone, including YOU. I will render the drawing based on your blog or Facebook avatar. You can make your guess about who it is by leaving a comment. The person who guesses correctly first will be announced on the following Friday. I will link back to you and maybe even write a snappy little poem about you! Or if you’d like, you can request that I draw a special picture for you that you can keep and frame and love forever and ever.

Here’s an example; if I were to draw Jillsmo, it might look like this:

It might not necessarily be an autism blogger that I draw. It could be another, well known blogger (you can look at my blogroll page to see where else I troll around).

Won’t this be fun?

Check back on Wednesday to see who the first person is that I immortalize with my Picasso-like skills.

I Just Want to Thank You

Thank you for taking the time to read the words I write, even though they are oftentimes rambling and tangential.

Thank you for wading through the endless abyss of the internet, and choosing to stop in my little disorderly corner of the ‘sphere.

Thanks for expressing genuine concern, happiness, and joy at the adventures of my most precious creation, Connor. To have virtual strangers that rejoice in his success and feel genuine sadness at his challenges…that is just beyond amazing to me.

Thank you for knowing when I’ve had too much, and offering words of kindness, compassion, and encouragement. It is often more than I get from friends in real life.

Thank you for laughing with me. When my tank is empty, laughter is the fuel that keeps me going.

Thank you for knowing that my words are sometimes inadequate in truly describing my thoughts and feelings.

Thank you for realizing that, like you, I too am only human. Imperfect. Unfinished.

Thank you for not pointing out that I use too many commas.

And ellipses…

Thank you for realizing that just because we live with autism, it doesn’t mean I’m an expert about autism. Who is, really?

Thank you for understanding that I can only write about my own family’s journey, and my own thoughts, and that I couldn’t possibly speak for everyone. To try and do so would be absurd.

Thank you for sharing your stories with me and letting me know that I’m not alone on this journey.

Thank you for knowing that if I don’t sometimes use humor and sarcasm to cope, then I just might break down into a million pieces.  Ain’t nobody got time fo dat.

Thank you, friend, for your recent post in which you make a bold declaration about where you stand. Don’t think I didn’t notice, and don’t think I don’t appreciate it. I know you must have struggled with whether you should publish it or not. It was courageous of you.

Thank you for understanding that I just can’t get around to comment on your posts every day, even though I would like to. It doesn’t mean I’m not reading them, or thinking about you.

Thank you for being a friend; traveled down the road and back again; your heart is true, you’re a pal and a confidant.

This moment of gratitude brought to you by Flannery, because we don’t take enough time to be thankful.

Hiatus

My father passed away.  I will be on hiatus, indefinitely.

Thank you, in advance, for your kind wishes.

I’ll be back…

Words + Punctuation = Magic

A few months ago, I received an email from Lynn, from Autism Army Mom.  She and Big Daddy Autism were putting together a compilation of blogger essays, and I got the golden invitation.

And of course I say YES right away.  Because that’s what I do, I commit.  I’m a serial committer.

Can you help the PTA?  YES, yes I CAN help the PTA!!

Can you make a costume for the school holiday parade?  YES, I can!

Juggle knives?  Why yes, that’s my special talent.

Darn holey socks?  Darn, if I’m not a darner from a long family of darning fools!

Anywho, so I commit, and then the anxiety attacks start.  For two months, I pondered and I thought and I fretted.  I had no ideas, not the slightest inkling of anything to write.  The deadline crept closer, and passed.  I was forced to email Lynn and tell her I was a miserable failure.

She wasn’t really having it, and basically gave me another week and told me to get my ass in gear.  So I hastily threw something together and sent it over.

And she emailed me back and thanked me for the crap I sent.  And she said no one had written anything like it, which, of course, means it’s a sucktastic piece of crap….sort of like when you tell your child, “that’s the best macaroni art project I have ever seen!”

But she included it in this fine book she has put together.  I am in the company of some very, very fine writers (of which, I am not one, you’ve read this blog before, right?), and am so pleased to be part of this project.

So be sure to head over to Amazon and pick up your copy of Wit and Wisdom From the Parents of Special Needs Kids; Mostly True Stories of Life on the Spectrum.  My macaroni art is in there somewhere too!

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Shout-Outs and Props

Most days it’s all I can do to even get a post put together, let alone make the rounds and read and comment on all my other favorite blogs.  I would have to say that it’s a mixture of being busy with other commitments and easily distracted by shiny objects.

My bloggy friends.

But you guys…you guys are DA BOMB!  Not in a Hiroshima way, but more of a Gap Band kind of way.  You guys come here all the time and read my crazy ramblings about chicken and mom-whoring myself at Super Target.  And then, THEN you leave all these kind and snarky thoughtful words for me.

I LIVE for those comments, you know that?  And it amazes me that a bunch of strangers can find each other in the cyber-universe and offer so much encouragement, support, and friendship.

Since I don’t always make it over to read and comment every day, I thought I would mention a few sites that I really enjoy, and highly recommend to others.  I kind of stole this idea from Lady Estrogen, but I don’t think she reads my crap, so I’m not a-scared of her.  She is one funny chick though, so you should definitely stop by and check her out.

I read lots of other blogs, so I’m just going to mention a few of the newer or previously un-mentioned ones here:

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Mama’s Turn Now

A special thanks to Sharon, from Mama’s Turn Now, for featuring my post about sexual predators on her Weekly Wrap Up Sunday.  She’s got a great blog where she talks about her son’s Aspergers, as well as her daughter’s asthma.  It’s a very well written and thoughtful blog, loaded with information, so be sure to stop by and check it out, and drop her a comment.

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The Suniverse

This chick is funny.  And twisted.  Funny and twisted are an awesome combination!  Go there and read…and laugh.  It’s one of my favorite new blog finds, and I know you will love it.

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LA Juice

She called me “darling” and said that I’m “the best”, so now I’m kind of her bitch.  But that’s okay, because if I was going to be someone’s bitch, she would definitely be the one!  She (Juice) is a fellow Los Angelean, attorney, and snarky funny blogger who writes about celebrities and random craziness in her life.  Good stuff, people, good stuff.  Go there, she will make you laugh.

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Karacteristic

Kara is a fabulous mom blogger, with a daughter on the spectrum.  She is terribly hilarious, especially when drinking, finding baby birds hatching in her houseplants, or bitching about tortillas.  She is one of my favorites, by far, so pay her a visit.

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Four Sea Stars

You probably already know Lizbeth, over at Four Sea Stars, but the fact that she writes about her kids (one of them is on the spectrum) in such a way that I snorted out laughing at work, well that says a lot.  I don’t snort easily, I’ll have you know.  They just left for vacation, and this first vacation post is the offending snort-maker.  Check it out.

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It’s just my way of passing on some of the kindness and support you have all given me.  I will have to remember to do this again, because there are so many great blogs out there.

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Weekend Linkup

Today I’m over at the Red Dress Club’s Weekend Linkup, where I’ve linked one of my favorite posts.  Check out some of the other great blogs there!