7.26.2010

Oh My Goodness

That's the kid-friendly phrase I've been overusing recently. To describe the fun-filled BlogHer10 SF Area Meetup that took place at my house this past Saturday. To communicate exactly what it's like to look at the Contributors page on The Thinking Person's Guide to Autism and realize how much ass we're kicking and good we're doing, and how much more excellence is in the pipeline. To see Can I Sit With You? featured in BlogHer's Back to School campaign. To imagine the fun I'll have with Leelo's Godmother Hayley and her other bridesmaids during this weekend's pre-wedding retreat in Santa Barbara (there will by a psychic, oh yes). To have Leelo out of school for five straight weeks but in such a good happy busy space that I've not scheduled any respite or therapy to fill what would normally be his school hours.

Upon realizing I'm leaving in nine days to moderate the BlogHer10 autism panel and read my My Baby Rides the Short Bus story at Bluestockings in Manhattan. Oh. My. Goodness.

Overwhelm, even good overwhelm, usually sends me running to the hills and away from the computer. Which means the kids and I spent most of today tromping around the Sebastopol area. Iz acclimated to the frame backpack she'll be wearing during her High Sierra backpacking camp as we wove our way through (and sometimes over) trees both upright and fallen in Armstrong Redwoods. Mali made friends with most of the passersby, and complimented the womens' shoes (her new social savvy engagement tactic). We took Leo's iPad with us on the trail, which looked kind of kooky, but we were then able to use First-Then Visual Schedule (oh my goodness, Good Karma Apps developers, PLEASE let me help you fine-tune the next version, your app could help every last iDevice-using kid like Leelo) to successfully reassure our boy that yes indeed, we would be eating lunch after our hike. He was especially reassured when we got to the "eat ice cream" icon and hit Screamin' Mimi's.

We then scooted to an all-family meeting at SF's Ferry Building (details why to come) for which it was imperative that our girls behave. As Mali and Iz have recently been possessed of a synergy most foul -- especially when spending the night at their Godfather M's during my and Seymour's 15th wedding anniversary Beach Blanket Babylon/Rose Pistola/Chinatown evening out -- I had no qualms about bribing them. Iz's carrot was Echo Mountain blue cheese from Cowgirl Creamery. Mali's was BabyMouse: DragonSlayer, because ever since Jennifer L. Holm read how much our family likes BabyMouse in my Want Good Comix 4 Grls Pls Thx roundup on BlogHer and so very kindly sent the girls an advance review copy of BabyMouse: Cupcake Tycoon, Mali has been obsessed with putting together a complete collection. It was a good, fun, worthwhile meeting even though it took place during Leelo's witching hour. Can't wait to tell you what it was all about!

And then we picked up Seymour from work and we drove home and all collapsed because Oh my goodness, we lead a rich, full, breakneck-pace life!

Before I collapse completely (which will happen after I finish my paid work shift plus edit and post tomorrow's Thinking Person's Guide to Autism post), I have to direct you to two more pieces of Goodness:

When Facts Backfire is from Joe Keohane at The Boston Globe, came to me via Seymour, and is critical reading for anyone who wonders why Tea Party members and hard-line antivaxxers can continue to be such unrepentant, ignorant dickheads even when confronted with evidence that shreds their arguments. Excerpt:
Most of us like to believe that our opinions have been formed over time by careful, rational consideration of facts and ideas, and that the decisions based on those opinions, therefore, have the ring of soundness and intelligence. In reality, we often base our opinions on our beliefs, which can have an uneasy relationship with facts. And rather than facts driving beliefs, our beliefs can dictate the facts we chose to accept. They can cause us to twist facts so they fit better with our preconceived notions. Worst of all, they can lead us to uncritically accept bad information just because it reinforces our beliefs. This reinforcement makes us more confident we’re right, and even less likely to listen to any new information.

I also love Autism Talk TV Ep. 6 - Steve Silberman Pt. 1from WrongPlanet.net's YouTube Channel. Silberman wrote the oft-cited Wired autism article The Geek Syndrome. In the video, he talks about the genesis and long-term effects of his article, how he thinks some of the things he wrote about autism may not be accurate and why, and how he wanted to expand on the topic of every single paragraph in the article when he wrote it ten years ago -- and how he now just may do so. Worth your time.


What kind of goodness is happening in your life lately?

7.25.2010

Be the Best Fan Ever of The Thinking Person's Guide to Autism

Some of you have asked how you can help us promote The Thinking Person's Guide to Autism. Here are three simple actions:
  1. Follow our Twitter stream at @thinkingautism and retweet our posts. We publish a new essay every weekday, between midnight and 3 AM PST.
  2. Join the conversation: comment on our posts! We've had some great discussions, and look forward to more.
  3. Visit our Facebook page.
You can also install "like" code for our Facebook page on your blog, as we have in this blog's right-hand sidebar.  Email us and we'll send you the code.

Thanks so much,

Shannon, Liz, Jen, & Emily
Editors, The Thinking Person's Guide to Autism

7.23.2010

Riders of the Maelstrom

We've been so busy that even my mom has been getting weary of my recountings of our happenings. So I'll front-load the highlight. Leo rode a horse at camp!
And he loved it! He keeps asking, "Did you like riding the horse at camp?"

Yes, I think you did.

Note that he is wearing a helmet. Another dramatic symbol of how far he has come, how much he can tolerate now. Hats! Helmets! Mind-boggling.

I've been wanting to get Leo on a horse ever since I talked with Rupert Isaacson (The Horse Boy) about the kinds of successes he's witnessed with kids like Leo at his family's riding center for kids on the autism spectrum, New Trails. And now I think we just might head trailward.

7.16.2010

The Vaccine Song's Take on Jenny McCarthy

Not quite sure how I missed this one, either.



Although it does oversimplify matters Jenny McCarthy, saying we shouldn't listen to her because she's a former Playboy Bunny. I honestly don't care what her background is -- I would listen to her whether she was actively filming porn, or a Christian homeschooler -- if she was able to discuss vaccines intelligently.

Instead she keeps changing her story about what effects she thinks vaccines had on her son, uses her professional performing skills to milk testimonials while attacking scientists and doctors on camera (and if you haven't seen her in action, I strongly recommend clicking that second link), argues against toxins in vaccines while rhapsodizing about Botox, and has poured her considerable passion and power into compromising public health.

I don't think she's an evil person, but I do think she's a credulous person, a passionately misguided person, and given her influence on other credulous and passionately misguided people, a dangerous person. I think she is a skilled performer rather than a skilled thinker.

She can still redeem herself, if starts learning from her mistakes instead of rewriting them -- her audience will stick with her, may even like her better, as they did with Angelina Jolie when she reinvented herself, and flipped from blood-vial wearing "whore" to UNICEF-ambassador "madonna."

Our society needs to value children's health over celebrity hubris.

Please do forward this video along.

7.13.2010

Easy Not Breezy

This summer has been easier than parenting summers past, at least so far. Traveling is easier, as both Seymour and I realized during our recent Seattle trip - no strollers, and less worry that Leelo will pull a flailing violent octopus maneuver on a TSA agent.

Camps are easier, too. The girls have been going with friends - Iz with Merlin, and Mali with Jennyalice's Lucy, which means carpools and built-in playdates. Easy.

I noticed the most blood-pressure-lowering difference this past week, the first of Iz's two weeks of day-long campity camp -- with Leo feeling comfortable in his skin, I don't freak about having to drag Mali and Leelo through knots and clots of girls and parents trying to fight their way to the clipboard lady/gatekeeper without whose acknowledgment none may board the bus. Signing in and out is easy. It's never been easy before.

But it's not always breezy. Yesterday, as we arrived for pickup and just as the bus of chanting campers pulled to the curb, Leo announced that he had to pee. There were no open bathrooms in the vicinity and the clipboard lady frowns with authority at latecomers, so I pulled him behind a bush and had him do his business there as Lucy and Mali stood to the side and pretended not to watch.

I assured the girls that peeing in schoolyard landscaping was tolerated under specific circumstances, and even kind of cool. "Sometimes, when you're a boy, it's great! You can pee in bushes all over the world!"

"Sometimes, when you're a girl, you have a brother with autism. And then your whole world changes." replied Mali. (She's five.)

"Yeah." said Lucy, knowingly. (She's four.)

Me: Wide-eyed silence. I don't think they were asking for a response.

I suspect these girls will be wiser than their peers in many ways. And I hope that they will always be friends, because it's important to have people in  your life who understand that having a sibling with autism doesn't mean you live in a sideshow. These girls know that other people may view their world as different -- but to them, it's just reality.


7.10.2010

When a Boy Misses His Daddy

Leo is not pleased that his dad remained up North when the two of us came back home. Seymour is a primary component of Leo's usual night-time routine: Daddy comes home, we all eat dinner together (usually Leo's second dinner, his meal frequency is Hobbity), Daddy goes on the trampoline with Leo, and then Daddy gives Leo his bath while I laugh and chat with them from the adjacent laundry room. Afterward I play Leo a few tunes on the pennywhistle, and our boy drops off -- by 9:15, at the latest.

With Daddy away, Leo's night-time routine makes no sense, and has steadily deteriorated -- first he stopped tolerating the pennywhistle, then he refused to go to bed on time and insisted on snuggling on the couch with me while I worked, then last night he refused to go to bed entirely until well past midnight -- and played with his iPad obsessively. (So that would be a not-good iPad aspect for our boy.)

But our days have remained fun, and I have enjoyed spending so much one-on-one time with my boy in this calm, quiet, chatterbox-free house, and during excursions. Today (after a lovely lunch with dear friends Jen, Descartes, Lucy, Jake, Susan, and Isaac) we headed to our favorite beach and spent nearly an hour burying each other's limbs in the colorful pebbles:

I could spend hours at this beach looking at individual pebbles. They're even more beautiful when they're wet. I recommend clicking on the photo so you can see them close up.

Digging digging and even more digging. This is the best beach in the world for a sensory-seeking child. No tools needed.

Still working on 1:1 correspondence whenever we can.

Seymour and the girls return in the AM. And our boy's routine will resume. And he'll be happy. But I'll also be a little bit sad to give up our intense, pleasant daytime camaraderie, even though it will mean our three missing pieces have returned.

7.08.2010

Leo on a Boat

This is mostly about Leelo because DAMN OUR BOY SPENT TWO NIGHTS ON A BOAT but he does have sisters and they did come on the trip (though Iz spent a lot of time sleeping, fishing, snuggling with her grandmother, and reading and re-reading Castle Waiting, American-Born Chinese, Erec Rex #3, etc.). Here's Mali at SFO, in the departure lounge. She put on the Mali Jane Rosenberg show at the ticket counter to such effect that the agent let her weigh herself on the luggage scale, then slapped her with a warning label. (This same girl is now in Victoria, B.C., as I type, where -- according to her father -- she has been earning money busking on the waterfront, as a juggler's assistant. Auntie Bree is said to have video.)

Mali also entertained the entire staff and back rows of the plane during our flight. We sat next to a family from Puerto Rico, so Miss M turned up her EspaƱol and charmed them en dos idiomas, especially with Fifa Copa Mundial lore and exclamations. She was still flying high on the day's cumulative attention when the escalator at SeaTac grabbed and chewed up her brand-new crocs, and sent her tumbling backward down the steps and into me. Thankfully only her dignity was injured. And now you know, Crocs & escalators & shredding? Not an urban myth.

By the time we filed the obligatory Croc-escalator-chewing report at SeaTac and returned home, it was almost midnight. Which did not stop Leo from wanting to get on the boat and GO GO GO NOW. But he was a good sport about waiting until I found Mali a replacement pair of Crocs (at the downtown Seattle REI fern grotto/oasis, ooooh!) and everyone else woke up and we finished loading the boat. Then: HAPPY BOY! Look at that smile. He was ecstatic.

He was also a good sport about wearing his lifejacket the entire time. I am telling myself this is because of the "going on the boat" social story I made for him before we left.
Such a thrilled boy! He's on a boat!

There was much exploring to be done on the boat. It has multiple decks, which was good news for a boy who likes to climb and run around. He even established an around-the-boat circuit which was helpful on the 4th of July when stereotypical crappy Seattle weather decided to assert itself and we were mostly stuck inside. Though as we were the tallest boat in Lake Union, I was mildly irritated by my boy being on display for the beer-drinking yahoos on the surrounding boats -- yahoos who did things like trying to tie up to our anchor line, or flashing Seymour while he was innocently trying to grill burgers on the back deck. A good hashtag here would be #notsailors.

We were lucky in that our boat had a tender, a smaller boat that we could use to go ashore if we wanted to. And we did, the first day to Ivar's seafood in Renton (very tasty, though not quite up to our own Al's Fish n Chips here in Deadwood) and then hiking in Seward Park (picture), the second day to the Lake Union Wooden Boat Festival -- which was awesome in terms of boats, food, music, and displays. Seymour said Mali befriended one of the master canoe makers while Leelo, Iz, and I went on a green straw mission.

Here's our boy, glorying in the wind and water. He is standing on the pulpit, which is a high-dive like platform at the front of the boat, suspended about nine feet above the water. It's a great place for a sensory-seeking boy. Notice the extra horizontal rails that his grandparents insisted on -- normally a pulpit only has one or two rails, but his grandparents designed this boat for their entire family, and that includes the grandkids (...not falling into the drink). And now that includes Leo, too. His grandparents were so, so, so, so pleased by how well our boy did on the boat, praised him and encouraged him continuously, and are willing to try an actual journey next time -- perhaps to the San Juan Islands. Can you imagine? :D Leo would *love* it there! Water and hiking trails -- heaven.

Seymour's folks and the boat staff spoiled us rotten, which was surreal but appreciated -- we'd had a rough previous week. We woke up on the 4th to fresh patriotic waffles, which our entire family got to eat together, up in the pilot house (main bridge, too busy eating to take pictures other than this one). Leo ate his own waffle and most of mine, too. Hey, eggs are protein and his diet is still mostly that of a self-imposed vegetarian. Anything with protein is good, because meat in any form still makes him retch.

See, Iz was there! She and Mali helped K. make this scrumptious, also patriotic cake. I asked K. to hide the cake from Leo, who enjoyed his piece immensely (though as he ate it he picked off the raspberries and shoved them into my mouth whether I was ready or not), but K. wasn't quite used to how observant and wily our boy was, as he found it in five minutes and the cake had to be relocated. She's a quick study, though -- Leelo never located a single crumb of food on his own after that.

He did get a bit grumpy/cabin feverish near the end of the afternoon on the 4th, so S., the first mate, took my boy and me out for a Lake Union cruise in the tender (and also in the rain, as you can see by Leelo's geer) to see the boats at the Wooden Boat Festival from the lake side. He cheered up a bit but mostly, I think he was just tired. He didn't get enough sleep after our late arrival on the first night, and he had trouble going to sleep the first night on the boat (exhaustion, disorientation; though he woke up with a big grin).

So, Leelo missed the Lake Union fireworks because he put himself to bed long before 10 PM. But that's OK.

We didn't stay overnight in Lake Union, as the crew would have needed to spend the entire night on idiot patrol to ensure that no other boats bashed into us. Which meant that when Leo woke up the next morning, we were back in front of the house. That made him very happy, much as he loved being on the boat.



As usual, Leo got up earlier than everyone else (though still fairly late for him -- 7 AM) so we headed out for caffeine and playground as soon as I was dressed. We headed for Luther Burbank park at the north end of the island -- gorgeous, and the playground is still semi-old school, even partially constructed of brick. I think Leelo was missing the boat pulpit in this shot. No worries, my friend --  next year!

(Mali wants you to know that she woke up early too. And came to the playground too.)

Conclusion: Yay Leelo, and yay on his grandparents for taking a chance on our boy -- they really were so tickled to see Leo thriving on their boat, and have their all-the-grandkids dreams fructify. Two years ago a trip like this was inconceivable. I am overflowing with gratitude for all the good luck and hard work that brought our family to this point.

There's a Flickr photo set, too if you're interested.

7.07.2010

Leo's Boat Trip Preview


Yeah, Leo liked being on the boat. So much so that we're both completely tuckered, especially as the boat travel was capped off by today's day of Leelo + mom air travel, a day that included a one-hour flight delay which  wasn't announced until we were at the gate, and kept creeping forward in 15 minute increments so that we couldn't leave to get more food, but I also couldn't give Leo the cookies I was hoarding because I'd already told him  he could have them when the plane was in the air. As I told Miss Grace on Twitter, "dysregulated" is autism or sensory processing disorder parenting code for "my kid lost his shit." But  you know what? Everyone on the plane was kind and understanding; the folks in front of us even congratulated Leelo for "doing a good job," by which they must have meant not losing his shit altogether. Not our boy's fault. And he did do *so much* better than he has in years past. Can't you tell I'm zonked by the way I'm running on and on? Real boating entry tomorrow after I've had a few hours of sleep. But not too early as I have three or four meetings tomorrow.

7.05.2010

He Made It


Leo had put himself to bed by the time I took this photo, but isn't that better than causing fireworks himself? Other than missing this truly spectacular Lake Union fireworks display, our boy was a happy and dry participant for two days and two nights of boating. We, his grandparents, and he couldn't be more pleased. 

Leo has opened yet another door, and shown us a future we'd never expected. So proud of him.

More tomorrow when we're back in town, I have reliable Internet access (quickly ethernetting in a remote corner of the house), and we've had a bit of rest.

Squeeeeeeeeeeeee!!*

*To be yelled in the style of the Telemundo Fifa Copa Mundial announcer's "Goooooooooooooal!"

7.02.2010

Summer Launch

We're doing it. We're taking Leo on his grandparents' boat -- the boat they built with a designated berth for each grandchild (though at the time there were just four grandsprogs as opposed to the current sextet) -- and on which he has been on exactly one time, for a quick Lake Washington/Lake Union jaunt. We're prepping him with yet another social story:


His grandparents are being amazing, they are open to Leo staying on the boat for as many nights as he wants to - or no nights at all. Or taking one of the little boats and going ashore for a break. Or going ashore and taking a taxi straight home, if he starts melting. Ideally, though, our weekend will culminate with the extended Rosenberg family gawking at Fourth of July Fireworks from the middle of Lake Union. We are front-loaded with our iPad and tons of new videos and apps and music. We are poised for success.

(Plus his grandparents also do an expert job of stocking their wet bar.)

Hopefully we can celebrate afterwards with our own [Leelo's] on a Boat video. Will keep you updated.

---

In other matters:

I have a post up on BlogHer today, about Leo's extended but successful journey to toileting independence. We now live in a pullup-free household! So proud of our boy.

We are having phenomenal success at The Thinking Person's Guide to Autism. We are drowning in riches. We are achieving our goals, in terms of the spectrum (*rimshot*) of topics we'll be covering, showcasing perspectives from parents and professionals and educators and autistics/people with autism, throwing out strong statements about science and pseudoscience, and being a genuinely useful resource. We have extremely talented professionals donating their services for photography and book design. The commenting has been lively as well. We are so grateful to everyone who is helping TPGA kick ass!

(If you want to be one of the writers who helps TPGA kick ass, we've extended the deadline for submissions for the book to July 16, as we've been truly deluged with excellent writing. But we'll continue publishing essays online if that timeframe is too tight but you still want to participate.)

Other than that, our summer is the usual joyous swirl. Leo is in summer school for his last session at Loma Marina before transferring to Autism Wunderskool in the fall. He also came to one of our local concerts in the park for first time ever, and not only tolerated it but enjoyed it, I think. He was there for three hours and never complained. (Mali certainly didn't complain -- the band played doo-wop and funk, including her very favorite: Earth Wind & Fire! She even corrected me on their playlist -- I thought they were playing Boogie Wonderland but she said, rightly, that it was Let's Groove.)

Iz went to Green Day camp last week, and totally kicked butt with her singing and learning to play the drums (she and her friend Merlin didn't really consider Green Day's lack of keyboards when they signed up). They had a concert on the last day, and played four songs. I was impressed by how unfazed Iz and Merlin were by occasional bonks and how seamlessly they picked back up and corrected themselves without freaking, until Merlin's mom Ep pointed out that our kids have been taking piano from a Ukrainian for several years now, during which time their instructor has bullet-proofed their performance attitudes. Which also explains a lot about Iz's confidence and recovery skills when she played Mary in the Secret Garden (she said she blew it a couple of times, but no one in the audience could tell, including me).

Mali went to local rec center "let's do crafts and run around at the park!" camp with her friend Lucy,  which she considered every bit as worthy as Iz's band camp. Lucy came home with us several times by my request, which is just part of enjoying having the house where friends and family feel comfortable coming over spontaneously, playing, swimming, and just hanging out. Which reminds me, locals: Are you going to the BlogHer10 pre-conference meetup on July 24? I'm going. Hope to see you there.

Also starting to get excited about BlogHer10 itself. About moderating the Autism Panel with luminaries Pamela Merritt, who is SharkFu of Angry Black Bitch, Jean Winegardner of Stimeyland, and Sharon DaVanport of the Autism Women's Network. About seeing so many amazing people. About going to get me some damn Ghanaian food. And about having a book reading with Jen Myers & Jen Silverman for My Baby Rides the Short Bus on Saturday, August 7, at 7 PM at Bluestockings bookstore on the Lower East Side of Manhattan (please come!).

So, a mellow summer. Yeah! How is your summer shaping up?

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