Self-Pity Is for Suckers: My BlogHer14 10x10 Project Talk

Image description: Red-headed dork holding papers,
wearing a dress, speaking. In front of blue & purple BG.
Photo credit: Marla/@DvinMsM

This is the prepared text from my BlogHer 10x10 speech. Which went well, I think. I did go off script a bit but this is the core. 

Update: For extra punch, see the official LiveBlog of the entire opening keynote, and Liz Ditz's enhanced Storify version of my talk.

Hi. I’m Shannon, I’ve been blogging since 2003 at Squidalicious.com, since 2009 as a BlogHer Contributing editor, and since 2010 as an editor and contributor at Thinking Person’s Guide to autism. I’ve got three kids, they’re cute, all that.

My middle child, Leo, is 13, and has always been my dude. He's sassy, handsome, and still a snuggler, lucky me.

In 2003, when Leo was two, he was diagnosed with autism. This despite his pediatrician assuring me my cheerful, bubbly, affectionate son couldn't be autistic because he was cheerful, bubbly, and affectionate.

Since that doctor was not helpful, I turned to the Internet. And … the Internet told me my life was now officially going to suck. That Leo’s life was going to suck. That autism was nothing but suck.

To process this suckage, I started blogging. I titled my blog "The Adventures of Leelo the Soon-to-Be-Not-Autistic-boy and His Potty-Mouthed Mom,” because the Internet said I should want Leo to be not autistic. I should want Leo to be normal, whatever that is.

I let the Internet break me and see my Leo as broken. I embraced self-pity. I let it define me. I was not alone; at the time there were plenty of other prominent autism parent voices in the Blogosphere who were floundering right along with me. You want to talk about a pity party? We live blogged it.

But then the Blogosphere shifted. I started encountering parents who rejected the pity and the suckage. Some of them got in my face and told me I was a jerk for embracing self-pity, that I wasn't helping anyone with my Woe Is Me gospel. I wasn't ready for that. I'll admit it -- I recoiled, petulantly. And I blogged about it.

And then my Blogosphere shifted again. I started hearing from people who told me I needed to reject self-pity so I could get to work, because Leo and I had a tough road ahead and no one else was going to help us. I went to Catholic school, so I am always ready to get behind anything that smacks of martyrdom -- I blogged about that, too.

Then the Blogosphere shifted, yet again – and I found the people Leo and I needed. I found the autistic bloggers, who love, support, and accept my son – whether or not I ever manage to wipe that self-pity out of my eyes and see Leo clearly as the fabulous & unique person he is, and not as a pile of deficits. The blogosphere connected me with autistic people, parents, and professionals who told me that seeing autism as suckage was seeing my son as suckage. That he deserved better than a mom who saw him as broken and as breaking her life. And that is what I blog about now.

I can’t deny that autism comes with some suckage. Autistic bloggers don't deny it, so I can't either. But the hardest things about autism are hardest for Leo. Please believe me when I tell you it’s a much bigger deal to be the person who can't speak than the mother of the person who can't speak. And anyhow, being able to speak is not the same as having something to say. Communication takes so many forms, all of them valuable. The Blogosphere taught me that, too.

Rejecting self-pity keeps me focused on Leo, keeps him in my sights as an awesome and deserving human being. Who has a mom who now tries to believe in herself as much as she believes in him. Who now knows self-pity is for suckers who haven't invoked the full power of the Blogosphere.

I’m not saying people don’t have hard times. They do. I have, you have. But, damn, is it so much easier to get through those rough patches when your blogging connects with people who get it, and who care. And that aspect of blogging – the life-changing power of our beautifully networked hearts and brains – has only grown stronger over the past 10 years. Blogging formats may have diversified, but blogging itself still matters, so much.

The funny thing about me being here, talking to you, at this event, is that I’m not great at most Good Blogger practices, like strategically generating traffic and engagement. I suck at commenting. I’d slam my head in a door before I’d let anyone drag me into a conversation about branding. I don’t know how to blog about any thing other than my sucker of a self and my three kids and my own little bubble of things that matter to me.

And yet. Through being myself, blogging my truth, and making organic, real connections – I’m a published author. I’ve co-edited three books, including Thinking Person’s Guide to Autism. I’ve never stopped learning, and I've tried to give back by helping to build an ever-growing online community of 87,000 autism parents, autistic people, and autism professionals who flock together and learn from each other, daily. I’ve given interviews and talks on autism, iPads, blogging, and vaccines for all kinds of national and international news outlets and organizations, I recently guest-lectured at UCLA, and -- alongside many people in this room -- I stormed Capitol Hill for the UN Foundation and Shot@Life in support of global vaccines. It’s all kind of odd, really.

But a decade of blogging made it possible for a dweeb like me to do all that. It made it possible to find my people again and again and again, to read your stories, to gleefully message for hours with friends I’ve never met IRL, and to knit IRL friendships of choice rather than of proximity. It helped me learn to ride the wild life I’m living, and not obsess over some imaginary life that only suckers dwell on.

Don't be that sucker. And know that the people in this room and in the Blogosphere won't let you.

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And here's the story about the dress I wore during the talk. Last summer, when Iz and I were in Ghana, we were invited by our Ghanaian hosts to a family wedding. Which was a huge honor. However, we only had our goofy Travelsmithy-style wardrobe available. But our hosts said: NO WORRIES and had their unbelievably talented seamstress make us custom dresses -- in 24 hours. We wore them to the wonderful wedding. However mine only fit perfectly when I was standing -- when I sat down in my wedding seat and turned to greet a new friend, my cleavage made the zipper on the back of my dress explode. My host, generously and ingeniously, gave me her kente sash to wear over my shoulder and down my back so no one else could see the back of my industrial strength and therefore extremely hideous bra. And then we went home and the seamstress fixed my zipper. And now it is my favorite dress that I wear for good luck whenever I can.

The Luckiest Zip-Lining, Surfing, Boogie Boarding Boy in Town

You'd never know Leo hit an extremely rough patch last week if you only saw the great time he had this past weekend at his friend I.'s birthday party at AcroSports in San Francisco:

He ziplined! OMFG! And the graceful way he skipped down that trampoline -- I could watch Leo prance, all day.

The photo below doesn't quite capture the glee on our boy's face as he bounced and swung in the giant bungee contraption. (Better pix of Leo in our friend Chris's photo essay about how to talk to parents of kids with autism.) I'm so glad we went -- I was on the edge about Leo not being able to participate and possibly disrupting the party -- but I have learned to have faith in our boy's love of fun, and cupcakes (though the latter enthusiasm started to spiral toward the party's end, so we made a quick exit so as to be thought of as flighty rather than party-destroyers).

Leo also had a wonderful, wonderful time ten days ago as a guest of RideAWave.org, an all-volunteer organization that enables a day of full-on surfing, kayaking, and boogie boarding for kids with special needs like Leo, or completely unlike Leo -- doesn't matter as long as they're up for a day at the beach. Here's our boy rocking out on a boogie board:

All geared up and ready to go (in 58° F water, brrrr, but Leo didn't mind).

Beach Wheelchair! Like I said, EVERYONE got to go in the water. You hear that, Jennnyalice? Everyone.

And EVERYONE got to go surfing. Everyone.

Iz even found a way to keep Mali busy while Leo was hanging ten.

Smiling for the camera with his medal, and his friendly beach buddy John -- who stayed by his side all day and made sure Leo's fun was maximized. Lucky, lucky boy.

I would love to see a RideAWave-like movement happen at AcroSports -- they're a community center, after all. The AcroSports staff was great with Leo -- they treated him like any other kid -- but they don't appear to have dedicated programs for our kids. They also have to charge extra for large parties of kids with special needs because of the staffing requirements, and probably because of their tight not-for-profit budget. But could you imagine a full day of bungeeing, ziplining, and trampolining for all our kids -- free of charge, staffed by volunteers, and open to every single kid who wants to go? I think it's a matter of finding the right person to spearhead the project. If I could Madrox myself, I'd be on it. In the meantime, I think Leo will be returning to both places whenever possible.

Make a Difference for Autism Research, for Only $1

Seymour & Iz atop Orcas Island's Mt. Constitution

Just got the following press release from the Autism Science Foundation (whose cool shirt my husband is wearing in the photo above):

You Can Make a Difference With Only $1 (Yes, That's One Dollar!)

Can $1 really make a difference? You bet! Today the Autism Science Foundation is the featured nonprofit on Philanthroper.com!

Philanthroper has been described as the "Groupon" of the nonprofit world. Each day they raise funds $1 at a time for a selected nonprofit whose work they think is outstanding and today that's ASF!

Philanthroper is about group giving. If everyone gives a little bit it will add up to enough for us to fund another critical piece of autism research. All funds raised through this project will go directly to research.

Please donate $1 today [https://philanthroper.com/deals/autism-science-foundation] and then SHARE with all your friends. After making your donation, post this Facebook update or send an email to your family and friends. This is an easy and simple way to get even more support for ASF's work.

The Cutest Singer in the World

Here's Leo performing Shoo Fly at yesterday's variety show at his school, which featured performances from the littlest students to members of the adult program (Leo and many of his peers will probably stay at the school ... forever).



Leo was awesome, don't you think? It's worth noting that he can sing much, much longer sequences than he can string together conversationally -- I've been wondering for just about ever if there's a way to use the former to build on the latter. Ideas?

Leo's sisters and three cousins were able to watch his performance, and they were very proud of him too, as was Jennyalice (whose Jake was the cutest bumblebee ever).

My favorite moment of the show was when one of the show's star teen performers came and sat next to Iz and her equally suddenly leggy cousins. He was quite charming. "I'm happy!," he told them, then "I'm hungry. Are you hungry?" The girls admitted that they were, and that was the extent of the conversation, and cheerfulness continued to reign. No one ever mentioned anything odd about the exchange -- they said afterward that they thought he was really nice. Chalk one up for autism acceptance as a matter of course -- as nothing worth mentioning, even. Except for by this ever-vigilant and very proud -- in more ways than one -- mother.

I love Leo's school (and staff) so so so much.

A Date With Our Boys

Leo, Jake, & Jennyalice

This is before the french fries & milk shakes arrived and the table looked ... very different.

Good friends make all the difference for me & Leo and our family.

Both Our Brothers Have Autism!

Actually, the direct quote, as Jake's & Leelo's little sisters made gingko "leaf showers" and waited for their brothers' bus, was "We're sort of twins because we both have both have brown hair and we both like the color pink and we both like candy and both our brothers have autism."

Speaking of Autism and Bridge Building

I have post on the Autism Speaks blog today: Can You Appreciate My Son's Successes? The essay will be a familiar to you, even if you've only been reading this blog for a short while, as it's a rewrite of the I Wonder if You Can Really See My Son post.

If you've been reading this blog for a while, the fact that I posted at Autism Speaks may shock you -- but not if you've been paying attention lately, and have been reading my articles on BlogHer as well. Last month, I had this to say about my evolving attitude towards Autism Speaks:

Autism Speaks is a controversial organization. They have angered and alienated many members of the autism community. But they are also powerful, entrenched, and well-funded. So, instead of waging war against Autism Speaks, "free range Aspergian" and Look Me in the Eye author John Elder Robison decided to join their board so he could effect change from within:

"There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal."

We've already seen results: Autism Speaks now funds one of my favorite autism community endeavors: Alex Plank's WrongPlanet.net YouTube channel. I can't wait to see what else Mr. Robison helps bring about.

My Autism Speaks article about Leo is not about changing him, or curing him, or seeing past him towards his future -- it is about appreciating him and all his hard work, right at this very moment. I hope that our cheerleading for Leo reaches parents and relatives who haven't encountered loving, accepting attitudes. Autism Speaks recognizes the need for more such positive advocacy, and I am grateful to them for posting my essay (as I am to Jess for orchestrating AS's republish request).

We need more bridges built in our community, but that doesn't mean we need to compromise our beliefs along the way. It makes sense to work with Autism Speaks to spread messages that benefit our entire autism community, just as it makes sense to question them if they misstep.

We need to think big picture. I've been saying that a lot lately. It's why we featured a post on by Holly Robinson Peete on The Thinking Person's Guide to Autism, on autism issues the media continues to overlook. In her essay, Holly spoke about later autism diagnoses among minority children, puberty, adult autistic self-advocacy, etc., -- all issues that need more support, and open discussions. Mentioning her shared concerns with Jenny McCarthy makes Holly's article even more compelling -- she's in no way dissing Ms. McCarthy, but she's pointing out that -- when it comes to our autism community's needs, we need to think bigger, think harder, think more inclusively. We need to try to come together.

Right now.

Think Before You Comment!

I'm going to pull a Foghorn Leghorn on you: Have you seen -- I said, have you seen -- the astounding weekdaily essays we're showcasing at The Thinking Person's Guide to Autism? In just the past three days:

• Frances Vega-Costas wrote about Hispanic autism advocacy in Autism: An Equal Opportunity Disorder.
• Hartley Steiner wrote about special needs parenting and self-care in All Showers Lead to Australia.
• Pia Prenevost let us see her bruised and fragile heart in An Open Letter to Special Needs Professionals.

There's been a bit of a stir in the comments section on that last post. So, I'm going to repeat here what I commented there:

I believe some commenters may have misinterpreted Pia's open letter, and inferred negativity and hostility where none was intended, and when in fact Pia was apologizing for any misbehavior on her (and our, the parents', part).

We consider teachers and the other professionals who work with our children part of our community. We also consider TPGA a community-building space, one where we promote greater understanding and the greater good on behalf our our children and (again) community. I would ask that everyone try to come from a position of understanding and questioning when commenting, rather than defensiveness.

If an entry makes you upset, I would ask you to do four things before considering commenting in a way that could cause harm or strife:

1) Walk away from the screen for a while, and think about why you want to comment.
2) Re-read the essay or comment. The writer might not have written what you think they wrote.
3) Consider why you want to comment. Are you trying to bring about greater understanding of important perspectives for the good of the community, or are you feeling angry and defensive? If it's the latter, go back to #1.
4) Ask the writer if they are saying what you think they said. Think carefully before using provocative phrases.

And remember that you're never alone.

Michelle Garcia Winner Conference May 8 in Redwood City

This is a fundraiser for SEPTAR, the Special Education PTA that I helped found, as well as an opportunity to build real skills for interacting with people like my son:

SEPTAR and Belmont-Redwood Shores Special Ed PTA present:

Michelle Garcia Winner: Implementing Social Thinking Concepts and Vocabulary into our School and Home: A Day to Develop Team Creativity

Friday, May 8th, 9 AM - 4 PM
Community Activities Building (CAB)
1400 Roosevelt Ave.
Redwood City, CA 94061

NOTE: Tickets are discounted $85.00 through TODAY, April 15th; $100.00 after. Lunch and workshop materials are included in the ticket price. Participants will also have an opportunity to meet with local service providers.

Buy your tickets online:
https://www.brownpapertickets.com/event/57237

Michelle Garcia Winner, MA, CCC-SLP, specializes in the treatment of individuals with social cognitive deficits: those with diagnoses such as autism, Asperger Syndrome and nonverbal learning disorder. She began teaching social thinking in 1995 to brighter students when she went to work for a high school district as the districts speech language pathologist. Social Thinking was born out of necessity as a way to reach those bright but socially clueless students that needed more information than just what social skill to use. They needed to know why they should bother to use that skill.

Michelle entered into private practice in 1998 (part-time) and then full time in 1999 due to community demand. Both parents and school districts wanted her to work with their students.

Her clinical services continued to evolve and expand, Michelle Garcia Winners Center for Social Thinking, Inc saw over 250 children (preschool through adults) in 2008 from the Silicon Valley area of California for weekly therapy sessions. Over the years, to meet demand she has hired and trained a number of educational/speech and language professionals in the art and science of teaching social thinking. Simultaneously she also began a company called Think Social Publishing, Inc to handle the growing demands of speaking internationally as well as self-publishing her own and now others books.

In 2008, Michelle also co-founded with Dr. Pamela Crooke, a non-profit dedicated to social thinking for the Silicon Valley Region of California, called Teach SOCIAL Silicon Valley. The word SOCIAL is an acronym for Social and organizational concepts in individuals across a lifespan.

As Michelle has observed the concept of Social Thinking take off across the United States and other countries, she also found she had less and less time for clinic management. She realized she was serving both a local and a national/international community that was growing quickly.

Michelle decided to close her Michelle G Winners Center for Social Thinking, inc. in August of 2008 and give the option to her trained therapists to open a social thinking clinic that they manage within the non-profit, TSSV. 100% of her employees agreed they wanted to start this new clinic, which officially began in Sept, 2008.

While Michelle is not on the regulating board of TSSV (given it would be a conflict of interest), she will continue to offer trainings to the clinical staff of TSSV through monthly grand round meetings. She will also serve on the advisory board.

Thus, from September 2008 onward Michelle will work for Think Social Publishing, Inc. DBA, Social Thinking along with colleagues Stephanie Madrigal and Dr. Pamela Crooke. Social Thinking will run a small (no-growth) social thinking clinic. This will allow these therapists to continue to work with clients, while also serving as a training facility to professionals who come to learn how to apply the core concepts of social thinking from around the world.

In doing this, Silicon Valley will continue to have and expand an excellent clinic in their community to not only help clients and their families but to also train educators from local schools. This also allows Michelle to continue to focus on developing and sharing new treatment ideas as the concept of social thinking expands and matures for parents and professionals to apply world-wide.

The heart of Michelles work is illuminating the often elusive and intangible world of social thinking, and developing practical strategies that can be easily used by parents, educators and service providers, across different environments, to teach social thinking and social skills.

A pioneer and visionary in her field, her work is being applied not only to persons with autism and related disabilities, but also more broadly to students in mainstream classrooms and to adults in vocational and professional settings in the U.S. and abroad. Her goal is to raise awareness among administrators, educators and parents about the critical role that social thinking and social skills play in every students life, not only in achieving academic success, but also for success in adulthood and life in general.

Michelle is internationally recognized as a thoughtful and prolific writer in the area of social thinking/social skills. She travels around the world speaking on a multitude of topics relating to social thinking, and repeatedly receives accolades for her educational, energetic and enthusiastic workshop presentations. She has been invited to train psychiatrists, psychologists, counselors, parents, educators and government policy makers on the importance of social thinking.

Michelle has written several books on social cognitive deficits and social thinking, and has released training videos/DVDs for educators and parents.

In 2008, she was presented with an Award of Special Congressional Recognition for her pioneering work.

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This course meets the qualifications for 6.0 hours of continuing professional development credit for Speech-Language Pathologists as required by the California Speech-Language Pathology and Audiology Board. SLPs can record their own hours using the ASHA Verification of Attendance form towards their ASHA CEUs. This will provide the equivalent of .6 CEU (PDP54).

You May Approach the Short Bus

That's the title of my first post as a BlogHer Contributing Editor. It's a friendly but unapologetic statement of purpose, and a declaration that the responsibility for children with special needs transcends the boundaries of the special needs community. Here's the BlogHer summary:

When I realized my son Leo had autism, I saw short buses everywhere. They ARE everywhere. If you don't believe me, take a tally. Then think about the kids riding on them, and their parents and families. I want you to see all those buses, and consider what they represent.

Click on the button below to read the whole post: