7.25.2014

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.

----

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.

7.17.2014

I'm BlogHer14 Bound. Are You?

The BlogHer14 conference is in one week, in fabulous downtown San Jose. I am speaking there. Twice! As you might have guessed by all those banners to the left. Are you coming to the conference? If not, here is the agenda and how to register*. Please come. Because I am freaking out a bit.

Old-timey camaraderie at BlogHer '06:
SJ & Laura & my natural hair color.
I am not freaking about speaking, not so much. I speak all over the place all the time (plus I spoke at BlogHer '08, BlogHer '10, & BlogHer '11). Speaking is monologuing and that is easy; small talk, & conversations with people with whom I am not already on a fart joke basis, is hard. And there are just not that many fart joke friends coming to BlogHer this year. Jen Myers, my long-suffering social crutch, had the nerve to go out and get an office job, damn her. Jenijen will be working her cute little butt off as a BlogHer staffer (as opposed to BlogHer 2006, where she worked her cute little butt off as a conference volunteer). Beloved SJ of I, Asshole? Also not coming. So if you are coming and you know me and you like fart jokes, please say so.

I am excited about next week's conference though. Because, ha ha ha ha, the funny BlogHer people have me and the very impressive Danah Boyd warming up the crowd for The Bloggess's conference opening keynote. (Danah & I are participating in the very cool 10x10 project.) The Bloggess shares extensive tone cues with SJ & I, Asshole, and Danah professionally groks networked teens like my Iz, so even if people throw rotten fruit at me, I will be on stage with cool people. Here is more info on that event:

Best-selling author of Let’s Pretend This Never Happened and blogger extraordinaire -- aka The Bloggess -- opens our anniversary conference with her special, and wildly successful, brand of off-the-wall humor, as she launches her second book, Furiously Happy.

10x10 Project: Danah Boyd and Shannon Des Roches Rosa look back at what the blogosphere built and look ahead to where we’re going, covering 10 years in 10 minutes.
Then I'm speaking again the next day, at the Special Needs Caregiving mini-con, along with Kristina Chew and Jen Lee Reeves. This will be three (!) hours of intra- and inter-communities communing, and I hope many different voices will be there so we can all learn a lot from each other. That might seem snarky, especially if you are imagining that sentence read in my typical speaking voice, but I am sincere. Hope to speak at, and awkwardly converse with, many many folks there.

The most exciting part of the conference doesn't involve me at all, though. I am talking about the Closing Keynote: Meet Us at the Intersection of Race, Gender, Feminism and the Internet, which echoes what may be my favorite BlogHer session of all time: 2008's Mirrors: Ours, the Media's, Our Cultures', and Our Kids'. The link between the two sessions? Unsurprisingly, the incomparable Kelly Wickham, AKA Mocha Momma. Here's what the closing keynote is all about, and who will be speaking:
Our hope is to host a conversation where we can be real, we can get uncomfortable, we can walk a mile in other women's shoes, and—most of all—we can walk away feeling like we know how to be better and do better. Understand more and speak up more. Together, we can extinguish the flame-war-ridden Web and be a part of the powerful and boundary-breaking Web. Are we all in?
Speakers:
  • Feminista Jones, BlogHer's own Sex and Relationships editor, who has been at the center of some raging Internet debates. 
  • Kristen Howerton, regularly raising her voice on the intersection of race and gender and faith at Rage Against the Minivan. 
  • Natalia Oberti Noguera, working for change within the power structure as founder of the Pipeline Fellowship. 
  • Patrice Lee, a conservative woman of color who immigrated to the U.S. as a child and represents an oft-unheard perspective.
Looking forward to seeing you at BlogHer '14, folks. Right? 

----

*So sorry, students; your passes are already sold out.

7.14.2014

The Poppy Seeds

California poppies. Growing in my pavers.
[Image Description: Bright orange-yellow flowers
punctuating a small green bush, with long green
seed pods poking out at intervals, all growing in the
seam between dark gray patio paver blocks]
If you're a "life's little pleasures" sort like me, then perhaps you'll get why one of my favorite early summer activities is gathering California poppy seeds. 

Our poppies reseed themselves all over our yard (and between our pavers) without our help, of course, but it's tremendous, satisfying fun to pluck the just-ready, slightly dried pods and have them pop open in one's hands (or in a mason jar) and feel/see a shower of the tiny black seeds, knowing each one is a potential color explosion for the following spring.

I gathered many, many of the pods this summer. I also discovered that if you take still-green, not-quite-ready pods and put them in one of those big mason jars with the slightly narrowed tops and leave them in the sun to dry, they will pop open on their own. More seeds for everyone!

The place I'd left my growing seed collection and soon-to-pop pods was on our back yard patio table. After a couple of weeks, the seeds in the jar were one inch deep. I always appreciate measurable progress, and was pleased.

And then, one day, I walked outside and found Leo dumping all the seeds on the table. He looked at my face and could tell by my expression that I was shocked and upset -- because he immediately started saying "It's not okay!" which, is essentially, him prompting me to say what he thinks I'm going to tell him when he's doing something I don't want him to do.

But before I actually did say anything, I looked at what he was doing: he was rolling the seeds between his hands and the table top. He had not just found but created a deeply enjoyable sensory experience. He had no idea what the poppy seeds meant to me -- I'm not chatty about things that are precious to me, not IRL -- and he certainly meant no harm. Our house and yard are filled with tactile balls and tactile bins and the like -- what made the poppy seeds, so handily placed on the table we all use all day long, different from any other of the sensory options littering our none-too-tidy house?

What made it different was my pained expression. Which he instantly recognized as related to his actions, even if he had no idea what he'd done to make me make such a face.

So I took a beat, told him he hadn't done anything wrong, and told him to enjoy himself. He regathered and had a fabulous stretch of fun, rolling and thumping and exploring the many sensory options the poppy seeds made possible, and which was not an experience he'd previously had.

Recovered poppy seeds
[Image Description: a circular collection of
tiny blackish-brown spherical seeds, in a
bright orange bowl, seen from above.]
And when he was done, and had left the area, I was able to go back and gather up plenty of poppy seeds off the table and the ground. As you can see. Not the half-cup's worth I'd had before, but it's also not as though California poppy seeds are difficult to find or expensive to purchase in our area. And maybe I'll invite Leo to help me gather next year's seeds.

One Empathetic Dude
[Image Description: Young man with beige
skin, & curly short brown hair,
looking up & laughing, as water pours down
the glass panes over & behind him.]
This could have been a disaster -- me yelling, Leo getting yelled at for something he couldn't possibly have predicted. But it wasn't. It turned out fine for both of us.

What made the difference was that I took the time to see things from Leo's perspective. This perspective-taking is, as I mentioned last week, so critical with our autistic kids and with autistic people and with others in general (though, admittedly, I am struggling with empathetic perspective taking re: Leo's teen sister Iz). It only took a moment and a deep breath to realize that Leo hadn't done anything wrong, to regroup and recognize that my son had no context to understand how I'd react to his actions. It only took a moment.

Please don't forget to take that moment.

7.10.2014

Join Me in Busting Vaccine-Autism Myths

Update 7/12: Here is the full transcript of my talk, with links to the Storify Twitter Chat and an audio recording of the entire event.

In less than 24 hours, I'll be the primary discussant in a Voices for Vaccines Conference Call and Twitter Chat about vaccines and autism. We'll be busting those vaccine-autism myths of course, but will also discuss how to be a vaccine advocate without inadvertently steamrolling autistic people like my son.

Parents should be afraid of deadly diseases, not autism. Autistic people have always been here (and they deserve to be vaccinated, too). But because of media-generated misinformation and outright hoaxes, some people still believe, wrongly, that autism is a vaccine injury -- despite landslides of evidence to the contrary. We need to fine-tune our advocacy efforts to reach such folks using facts, understanding, and compassion. I know those efforts can work, because they worked with me.

The conference call is at 9 AM Pacific/noon Eastern tomorrow, July 11th. It's free, but you do have to register. I'll be talking for about 25 minutes, then we'll do a Q&A. You can also join the conversation on Twitter at #VFVcall. Here's the event info:
To register for this conference call, you must email info@voicesforvaccines.org.

Like many people, you may not know much about autism, and may not know what to say to someone who wants to talk about autism in a conversation about immunization. You might worry that you will say something to offend or hurt autistic people and their families -- but you don't have to feel that way.

Please join us on Friday, July 11 at noon EDT (9 am Pacific) for a very important discussion with Shannon Des Roches Rosa. She will share what she has learned from autistic people and their families, including what they have taught her about neurodiversity and what they want you to know about autism.

Shannon Des Roches Rosa is an author and an outspoken advocate for neurodiversity who writes at her Squidalicious blog, is a contributing editor at BlogHer, and is a co-founder and senior editor of The Thinking Person's Guide to Autism. She has been published widely online and in print.
If you can't make the call, you can still educate yourself about autism and vaccines, with the articles on my Vaccines and Autism Pinterest page (and that should tell you how invested I am -- I made a damn Pinterest page).

Hope to hear from/chat with you tomorrow!

One healthy, fully vaccinated autistic dude.
[Image description: young man with beige skin and short curly brown hair,
wearing a turquoise tee and red shorts*, standing in front of
a low light gray cinder block wall upon which "life is good" is graffitied.]

7.09.2014

The Bloody Shirt

Routine FTW [Image Description:
Close up of young man with beige skin
& curly short brown hair, looking pensive.]
We just returned from a San Diego vacation -- essentially Camp Grandma. These visits are generally golden times, especially during the summer when we spend large parts of our days as ocean-dwelling dolphins. My mother kindly lets our crew invade her close-enough-to-the-beach-to-walk home several times each year, so we've established routines like daily morning walks to the three round trip miles Best Coffee in San Diego, where Leo's parents can get caffeinated and Leo himself can get a scone.

On our very first day, moments after this happy yellow shirt shot was taken, Leo tripped over a bump in the path. It was an accident, no one's fault. But Leo scraped his knee, elbow, and especially his palm -- the latter badly.

He was upset. And that, my friends, is a mild understatement. There was blood everywhere, and no matter how many times I cleaned his palm (I carry wipes and foaming wound cleanser everywhere, who doesn't), the blood kept coming for a good eternal five minutes. And kept covering his shirt as he kept wiping it off. And then covering my shirt as I tried to comfort him. We were halfway to the coffee shop.

And this is where I did my best to consider the matter from his perspective: He did not want to go back home, he wanted his damn scone. He did not want to change his shirt; he was so upset by his wounds that any additional stressors such as a clothing change (which I also always carry with us) were more than he could handle. Routine is routine, and disrupting routines is bad. So, once he felt able to continue on, we did. Bloody garb and all.

At the cafe, the (always kind and accepting) staff asked us if we needed anything besides caffeine and scones. We said we didn't, and they took us at our word, and we had a very pleasant breakfast. Then we walked home.

When we arrived back, my husband asked me how the walk was. I said it was rough, because it was. Leo and I were both sobbing, at the height of it.

Image description: Young man with beige skin and curly
brown hair, wearing a blue rashie shirt, sitting on the
beach and being enveloped by a crashing wave, happily.
But, upset as I was, Leo was more upset. And he was at my mercy, essentially, when it came to recognizing the actions that would de-escalate his stress (keeping his shirt on, sticking with the original café plan). I had to put my social apprehensions aside and accept that if the café-goers were dismayed because our clothes were bloody, so be it. Out of my control. My responsibility was to Leo. And it all worked out.

We spent that afternoon at the beach. Leo found the waves an excellent distraction from his injuries, though he did ask for kisses from time to time. And a friendly young sea lion paid us a visit, coming right out of the waves onto the beach as though to say "My dudes! How's it going?" The kids were delighted.

Image description: A young dark-brown
sea lion on a beach, next to brown rocks
and facing low ocean waves.
The rest of the day was uneventful. We had a lovely dinner of the grilled grunions Leo's dad and older sister had procured the night before, and I showed my kids how to pull the little fishies' heads and spines right out of their bodies, Predator-style. Mali was both intrigued and repulsed, and informed me that "You'd better hope a giant grunion never decides to eat you." Point taken.

Image description: A white bowl of long silvery-blue grunion
(fish), next to a white ramekin of yellow olive oil and a
green silicone basting brush.
Why am I telling you all this? Well, a friend who is both a Facebook Friend and an IRL Friend -- and who consequently gets to see all those friends-only FB photos of my kids doing all the mundane things I find mesmerizing but which would bore you into nodding off onto your device screen -- recently commented to me that I make autism seem like a lifestyle choice. She did not mean this as a slight.

But we do occasionally get comments on Thinking Person's Guide to Autism Facebook (which, honestly, is where I spend most of my online time these days, moderating the forum and posting curated material) accusing the moderators of making autism seem like it's all sunshine and lollipops. This is bullshit, of course. Autistic people would never claim their lives are without challenges, so I can't say that for Leo either. But even when times are rough, there are choices parents can make -- based on doing our best to understand what our autistic kids needs, as opposed to what we ourselves prefer -- that lead to much happier outcomes for everyone. And that's why I'm bothering telling you so.

And, since BlogHer 14 and its 10x10 project are coming up, I think it's important to note how I would have written about this incident ten years ago. I would have been sad for my poor sweet dude, but would also have hauled his little butt home, despite his protests, and forced him to change his clothes. And then I would have blogged about how hard it all was for me.

Learn from me, don't be me. At least, not 10-years-ago-me.

6.27.2014

One Healthier Autistic Dude

Last year at this time, Leo met with an endocrinologist to assess his health. Partially due to the medication he takes to help him manage his anxiety, he had elevated blood sugar and triglycerides. The first put him at risk for diabetes, the second for pancreatitis. Both of those conditions, in case there are any doubts, are best avoided if possible. The endocrinologist recommended eliminating sugar from his diet, increasing exercise,
Leo walking the new Devil's Slide trail.
[Description: teenage boy with a blue &
orange jacket and gray shorts, seen from
behind, walking the dashed yellow line on a
black asphalt bike lane, with bushes, hills, &
fog in the background.]
increasing his daily dosage of cod liver oil, and meeting back in a year to see how he was doing.

We did all of those things. Yes, more fish oil (he didn't mind). We removed juice from our house, eliminated sweets except for special occasions and even then reduced portions (bringing along substitutes like apple slices), and stepped up his exercise program with track running and stretching, soccer, swimming, and more hiking.

And guess what? It worked.

His blood sugar is now within acceptable limits. His triglyceride level was halved. His height/weight ratio (as a side effect) improved significantly, by medical standards anyhow. So that's good. Diet and exercise really do matter. Who knew.

Leo still has room to improve. He still needs less sugar and more fiber/whole grains. His morning yogurt -- practically his only calcium source -- is quite sugary. So we'll try cutting that with plain yogurt. He eats bagels for breakfast a few times each week; we can swap the plain version for whole wheat. And there is always portion control -- lately we've been bringing thinly sliced apples everywhere -- increasing the crunching/chewing to volume ratio seems to satisfy him.

But I'm proud of him, and relieved. (And hoping to follow his example as two days ago my own doctor read me my own medical riot act re: cholesterol & triglycerides, damn it all.)

6.24.2014

Beach Day at "Camp Mom"

The kids have the entire week off. All three of them. No school, no camps, no travel, just quality time with their favorite mother/drill sergeant. Which means we left the house at 8 AM amidst much moaning and groaning, and headed for our gorgeous California coast with the goal of exercise and fresh air.


Northern California beaches are not exactly magnets for summer sun worshippers. Though they are magnets for fog and crags and bouldering and giant mussel shells and running around writing the names of one's favorite band in giant letters in the sand (if one is fifteen) and appending "sucks" (if one is nine).


We never get bored by our coast's geological variety, either. Especially if it provides hidey-holes.


As usually happens, the kids get along better as a trio than the girls do as a duo. Though Iz & Mali  put visible effort into not using their brain powers to explode each other's heads today, which I appreciated and so did Leo (he gets very upset when they spar). Or maybe the head-exploding beauty of our surroundings was all their little neural nets could take, at that time. Don't care. Grateful.


Leo has definitely taken to using me as a walker of sorts, whenever he's not entirely certain about where we're going, and when we're going uphill. He was also taken by the hundreds of giant mussel shells on the beach, so he took one -- as you can see if you look closely. Mussel shells make great stim objects! They are good for rolling between one's palms. Leo's new shell didn't leave his palm all day.


Another reason people may avoid our beaches: they can be treacherous, though not always not obviously so. But we respect signage, plus we've heard too many stories about friends-of-friends and local folk swept off beaches and rocks by rogue waves. This beach has the added challenge of being located across a somewhat busy two-lane highway from its parking lot -- a challenge my kids faced and overcame with shockingly minimal grousing. Probably because they could see how pretty the beach was from across the road. And then once we were across the road we got to talk surf fishing with the surf fishermen. A lucky sort can catch a halibut right from the shore, we were told.

Camp Mom includes errands (Target, a group exercise in patience and fifty variations on rephrasing "No."). And then there's chill time. And then there's focused 1:1 time for each kid. The girls, spoiled things, got to sit with me while I demanded they "be brutal" in purging childhood memorabilia. Lopsided, unusable coffee mugs from a 3rd grade Art in Action class -- cherished memories though they evoke -- sometimes simply have to go. And though we have a few jettisoning sessions left, we can now see the tops of both of their desks. Plus we found the missing liver from the anatomy doll Iz gave to Mali last year.

(Mali also used her 1:1 time to ask me if I'd noticed that it was always the youngest kids in Greek mythology, like Zeus and Uranus, who staged the big takeovers. She then backpedaled as hard as she could when I asked if she was plotting a family mutiny, saying she was just pointing out patterns.)

Leo and I did his room purge earlier this year, so we spent some time checking out a new iPad app called Drive About: Number Neighborhood (disclosure: ArtGig Apps send me a code). Even though Leo is of course quite independent with his iPad, he still sometimes needs help focusing with new apps. And sometimes when we explore new apps together, we discover unexpected areas in which he needs support.


Most of the activities in Drive About: Number Neighborhood were straightforward for Leo to use, and were the kind of activities he enjoys: practicing number identification, matching, ordering, etc. through animated games. But when we got to the whale counting activity, he was stymied -- because the counting was done via slingshot, and that is apparently a concept for which Leo needs extra processing & practice. He kept trying to push the green balls into the whale's mouth instead of pulling the slingshot back to shoot the them in. After a few sessions of me demonstrating how it worked and then showing him how to do it, he started to get it. He'll need more practice, though. And I would never have realized how non-intuitive Leo considered the slingshot concept if the game hadn't included it and I hadn't sat down with him to play it. One more example of apps teaching our kids more than they are designed to teach.


Much of our trip to Target was to replace last year's destroyed pool toys. I spent a good deal of the post 1:1 camp sessions looking like this while the kids asked if the floaties were ready yet were they were they?



Which was worth it. Because Leo & his sisters now have new floaty chair rings, which are apparently the most wonderful pool objects ever designed -- the declaration was unanimous.


We closed out our first day of Camp Mom by watching HellBoy. Which Mali already loved, but which Iz & Leo hadn't seen. Leo's reaction was initial interest, followed by falling asleep on the couch. But Iz declared it the kind of movie she loves. So, more HellBoy-like movie suggestions are welcome.

Four more days of Camp Mom to go!

6.21.2014

Trampoline Exuberance and Bickering Death Match Time

Summer starts today! For Leo, anyhow. His sisters have been out of school for two weeks, doing their best to keep the tradition of Bickering Death Matches alive and well and my heart rate proportionately elevated. They are free to a good play date (Mali) or babysitting job (Iz), please note.

Leo got a jump start on summer at his twin friends' birthday party two days ago. At a trampoline emporium, during trampoline emporium slow time. The results can only be summarized as OMFG YAY:



I think it's time for Leo to make his own transition from Pump it Up to Trampoline Emporium birthdays. Another milestone. For our increasingly grown-up dude.

And now, off to those lazy days of swimming, hiking, and -- if the girls keep it up -- gimlets or possibly even Xanax (for me, not them, ahem). Any bickering defusing advice would be so very, very welcome. They are nine and fifteen. Help.

5.28.2014

On CBC Radio: Speaking Out When Autistic Children Are Murdered

I was interviewed last month by the CBC's George Baker for the Daybreak North radio show, about the murder of autistic teen Robert Robinson at the hands of his mother Angie. Lara Lohne graciously transcribed the interview, and I am posting it here for those who wish to read rather than listen. I have edited the transcript for clarity and grace, e.g., to remove my "erm"s and overuse of "right?," etc.


My blog post about Robert, which precipitated the interview, is Please Stop Being "Understanding" When Autistic Kids Are Murdered

----

George Baker (GB): Prince Rupert RCMP say that earlier this month, 40-year-old Angie Robinson killed her autistic 16-year-old son, then she killed herself. Family members say Robinson and her son didn't get enough support. But Shannon Rosa says that's no excuse for a mother to kill her child. Rosa is the mother of a son with autism, and an advocate for families with autistic children. In a blog post titled "Please Stop Being Understanding When Austic Kids are Murdered," she writes:

"Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger."

“When autistic children are killed by their parents are they treated as victims or triggers?” Earlier this months in Prince Rupert, 40 year old Angie Robinson killed her autistic16 year old son, Robert. Then she killed herself.

Family and advocates say a lack of support services are to blame for the situation. Shannon Rosa's son also has autism. And following the deaths of Angie and Robert she wrote a blog post titled, 'Please Stop Being Understanding When Autistic Kids Are Murdered.' She's a writer and advocate in the San Francisco Bay area and she joins us now. Good morning, Shannon.

Shannon Rosa (SR): Good morning.

GB: As the mother of a son with autism, what went through your head when you first learned about this story?

SR: Mostly I just cried -- I have to tell you -- because [parents murdering their autistic children is] not an isolated incident and it happens too often, and too often the message is “Oh that poor mother” instead of getting information about the victim, sympathizing with the victim and trying to get out more understanding about autism so we can prevent this from happening again. [Robert] looks exactly like my son, it was uncanny, really. So ... I just cried.

GB: Physical resemblance, of course, is there. How much, though, can you relate to the struggles that Angie Robinson was apparently going through?

SR: My son really is quite a lot like Robert. He's also the most amazing kid, we love him so much. We need to get that message out too: We don't hear enough stories about happy families.

My son often has a hard time, because it's often hard to be autistic. So many times with autistic people who can't speak, they aren't given the opportunity to advocate for themselves. They can't communicate if they're bored, they can be sick, they can have sensory sensitivities: they can hear everything in the room and it sounds like gongs going off all around them. They can have visual disturbances and all these things. 

Could you imagine being in situations like that and being a very tall, very strong person? If you read stories of autistic people who can now communicate but who when they were younger were like Robert, or they were like my son, Leo, they will tell you how maddening it is and how frustrating it is. 

I think if we're going to talk about services, we need to talk about services before we get to a crisis, we need to talk about getting services so that we can understand our autistic children and adults and get them what they need to be able to function and live a happy life.

GB: Talk about what life is like with your son. What are some of the challenges you face, every day?

SR: Ok, well, I don't like to get into it too much because I like to respect his privacy.

But he's mostly non-speaking, in fact right now to expand his quality of life and ability to communicate, we are investigating a device that actually allows him to communicate by touching on symbols, it's like an iPad and it produces spoken speech. Because a lot of the time, autistic people will be intelligent but they will have motor planning issues that make it so they can't produce speech -- but they can use devices like this. So he's learning to use that, which is great.

He goes to a school for autistic children and they actually have an adult program as well. He needs 1:1 support because really, he's very autistic and sometimes he lacks impulse control. So he wouldn't necessarily understand that he shouldn't open up car door on a freeway. But that's not because he's misbehaving, although some cases it might be. It might be that the reaction he gets from me when I see him open the door is so great that he can't resist doing it.

Again this goes back to understanding autism. I think there's a real problem with people thinking autistic kids and people are bad, when they are misunderstood. And back to these murders: you see people who are very wealthy or who have all the services in the world who still murder their kids because they don't understand autism, or they want their kids to be "cured," or not everybody has the ability to be the parent for a child who has intense needs.

I think in the case of somebody like Angie and Robert, where everybody talks about how much support that the family had -- in that case, when we have autism families we need to be very vigilant about [watching for] signs of stress. The message that we need to get out to them is that if you think you're reaching the edge, what you can do is you can call 911 on yourself. I don't know, I apologize, if it's the same code in Canada as it is in the States. But it's better for your child to be with the authorities and alive than it is for your child to be dead. That's the message that people need to hear. Over and Over again. 

Some [other autism parents] say I'm not terribly sympathetic to them but the thing is -- I am a parent to a child with intense needs. I get it. He's big, he's as big as me now and he's only going to get bigger. But understanding that parenting can be difficult and getting in the mind space where someone would kill their kid, those are two separate things. So I think if parents are having a really hard time, that's when you need to reach out -- not when you're at the point where you feel like you're going to murder your child. Because, again, parents who are mentally ill, most of them don't kill their children, parents who have autistic children, most of them don't kill their children. So it's not because of services, you know what I'm saying? If that makes sense.

GB:  Yeah. The portrait painted of Angie by the people who knew her,  is one of a mother who loved her son but was unable to find help and ultimately driven to take her own life so I ask, is there not room for sympathy here?

SR: That is absolutely what I'm saying. But the sympathy needs to be extended before you get to the crisis. The sympathy needs to be with people who are alive, instead of after the fact saying, “Oh my God...” you know, “she should have done something differently” ...

I'm sorry, I'm getting a little flustered just because this is very emotional for me.

We need to get the message out to parents like Angie that it's OK if you're at the edge. It's OK to surrender completely in that you can give your child up to the authorities. You can walk away. It will ruin your life, yes, but at least your child will still be alive. You can do that.

I'm part of an organization called Thinking Person's Guide to Autism and all we do, all day long (and in our book) is advocate to get parents services and understanding, and work with autistic people and professionals as well. This is all I do, all day long. So there's no chance of lacking empathy or sympathy for other parents. But I cannot extend it when somebody crosses the line. Although I can say that if they didn't understand that calling services on themselves and abandoning their child is an option, then that's due to lack of understanding. That's the message we need to get out, instead of saying that autism causes murder.

GB: There's been a lot of criticism on the BC government and the rest of society, quite frankly, here in Prince Rupert about how much service there is for people dealing with children, coping and living and raising children with autism. Is there not room also for this to become a political story, a societal story in which people are forced to react?

SR: I can't do that. I can't get behind that because then you are saying, essentially, that if autism families don't get services then they're going to kill their kids. You know what I'm saying? If you use that as your lead. I think we need to work harder and longer to get services to the autistic people and their families who need it because it's what they deserve as human beings. It needs to happen, it's just what we do as a society that cares about all the people in it. And I know that BC's had a really hard time with cut backs recently, but we need to look at who the most vulnerable people in our society are, who can't necessarily advocate for themselves, and just because they aren't given the opportunity to advocate for themselves doesn't mean they don't deserve to be taken care of.

GB: Shannon Rosa we'll have to leave it there. Thank you so much for talking to us today about this very difficult topic.

SR: Thank you for having me, I really appreciate it.

GB: Take care, Good bye.

SR: OK, good bye.

GB: That is Shannon Rosa, a writer and advocate for families dealing with autism. She's also the mother of an autistic son. You can find her blog at www.squidalicious.com. We, of course, would love to hear your take on this story. Email us at: daybreaknorth@cbc.ca, Give us a call 1-866-340-1932.
We are also on Facebook, and on Twitter @DaybreakNorth.

*Canadian Broadcasting Corporation, essentially Canada's NPR or BBC. 

5.22.2014

Happy! Because of IMFAR & Despite Trial By Fire (Yes, Literally)

Image: Selfie of me & Leo. We are a pale-
skinned, dark-eyed duo. His hair is curly &
brown, mine is short & red.
April's autism awareness/acceptance marathon wore me out, as it does most people involved in autism-centric advocacy. Plus the International Meeting for Autism Research (IMFAR) came right on April's heels, and also wore me out. In a (mostly) worthwhile way. And all by choice.

But, both sappily & sincerely, any fatigue vaporizes when I spend my first day home from IMFAR driving around with Leo, and he turns to me with a big smile and declares, "Happy!"

Dude, me too. I'm glad to be back with you and back to our regularly scheduled program. I'm glad that your AAC trial period was a success. I'm glad that the pool is now lovely and warm and swim-ready and we've entered the insta-bliss period of the year.

(...and I'm glad you and your sisters were deeply asleep the night after I got home from IMFAR and woke at 4:30 AM to the smell of smoke. I thought perhaps you or your sisters had decided to experiment with matches or candles (scary but it happens), but quickly realized you were all asleep. Then I followed the smell out the front door, looked across the street -- and saw a wall of flame and smoke, complete with extra-loud crackling campfire noises. I am glad you all stayed asleep while I called 911 and your dad ran across the street to discover that the fire was actually the front patio furniture and built-in benches [BBQ mishap] and that the residents were all OK if, initially, deeply asleep. You might have enjoyed watching him put out most of the fire by himself until the residents and then firefighters pitched in. And I hope you were listening later on when I lectured you about fire safety and keeping the damn long dry grass cut short -- wildfire safety is no joke in these hills, especially not during this super-dry season. We are all spectacularly lucky the entire neighborhood didn't go up. I think I'll continue sleeping with at least one window open until we get some rain.)

But back to IMFAR. Carol Greenburg and I provided live coverage on Thinking Person's Guide to Autism Twitter and Facebook, and you can do a keyword search of the abstracts to see what researchers were presenting. I was pleasantly surprised by conference's progress in terms of minimized pseudoscience (Arthur "scope 'em" Krigsman's "autism is GI immunoinflammawhatzit" poster was a quackery holdout, and was adjacent to an NIH/Hopkins poster stating that immunological abnormalities in autistic kids were "unrelated to autistic symptomatology"). Another surprise: The emphasis, front-and-center acknowlegment that autistic people grow up and age, and that perhaps we need a whole hell of a lot more research into what autistic people who are not kids need?

Image: A swirling, blurry multi-colored carpet
seen from overhead, with a leg & shoe
coming in from the right.
IMFAR as an four day immersive experience was of course very very overwhelming, with all the info and social firehosings. My brain is still rebooting. I found this photo of the conference hotel carpet on my phone amidst the other IMFAR pics -- and, yeah, that's what it felt like. Especially since my computer's trackpad gave out, giving me a 35% chance of being able to click on objects at any time, coupled with flashing and dancing screens, and constant attempts to auto-define words anywhere near my cursor. Really fun, that, especially during live-tweet sessions. (Perhaps Stephen Shore, who was sorely missed this year, could use a similar experience as one of his sensory/disability simulations.) The real-world effects of my computer still being f'd up is that my IMFAR reporting is coming out in trickle rather than traditional firehose mode. But it's coming, so stay tuned.

Thankfully I was able to focus my mindpowers and force my computer to mostly cooperate during the SFARI-hosted IMFARchat TweetChat, during which science communicators, reporters, and autism org reps chatted about autism science & research topics & priorities. And we met so, so many wonderful people during IMFAR and learned, so, so many wonderful things. Carol and I also stayed with my wonderful best friend from high school and ate wonderful food and saw wonderful whale sharks. I am glad I went.


Video description: Whale Sharks! In an Aquarium! With people walking around underneath them!

That gladness was not confined to The Peach State: IMFAR inspired me to take immediate advocacy action in the real world. Right before I left for Atlanta, Leo needed a blood draw. He doesn't like them, but he's usually a sport. His phlebotomist was not; despite my attempts to advise about Leo's needs and concerns and to please not objectify my son, that phlebotomist was vocally less than respectful about Leo in front of Leo. And here's where I will admit to one of my personal failings: I shrink from confronting hostile people IRL. Especially when Leo needs all of my attention, and is extremely distressed. Which means, furious as I was, the phlebotomist got no blowback from me beyond WTF face.

Image: Academic Presentation Poster: "Autism Comes to the
Hospital: Perspectives of Child Life Specialists."
Blue bar on top, three columns of text paragraphs
superimposed on a gray caduceus.
I ruminated and fretted about the incident and my being a goddamn wimp throughout IMFAR. Until I came across the IMFAR poster Autism Comes to the Hospital: Perspectives of Child Life Specialists, which describes tools and strategies for helping de-stress autistic kids in medical situations, and emphasizes the need to train medical staff about autistic needs. So when I got home, I contacted Leo's medical office, let them know who the offender was, let them know what had happened -- and sent them the poster abstract so they could start working on making autism-accommodating tool kits of their own. They took my concerns very seriously and are talking with the phlebotomist.

Just so glad to be home. (And that I had a home to come back to.)

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