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.)

The Leelo's Explosive Awesomeness Autism Show

Here's what I did yesterday:

• Launched The Thinking Person's Guide to Autism book/blog project with Jen, Liz, and Emily. We're going to be a little bit of Snopes for the autism community. And we want the community to participate, too, so ping me to pitch a post.
• Wrote a BlogHer article on finding feminist mentors so girls like Iz can continue to love superhero comic books without internalizing their objectification of women.
• Got invited to read my My Baby Rides the Short Bus story at a bookstore in Manhattan August 7, 7 PM, details forthcoming, Jen's reading too!
• Put Leelo to bed in underwear -- not pullups -- for the first time in his life.

Guess which one made me the happiest?

----

We're still flying high from Leo's acceptance into what Jennyalice calls "Wunderskool."

Now the only issue is whether we'll be allowed to retain the behavioralist services of Supervisor M. I think it's reasonable to reduce her hours given how well-suited the school will be for Leo, but as they do not officially use a behavioral approach and Leo can have crappy winters, I think it would be reasonable to engage her on a limited and transitional and need-based basis. I hope the school district agrees. Our transitional IEP is in three days; we'll see then.

As for how Leelo did during his Wunderskool tour: we walked in and they whisked him away before I'd even, finished signing in. I freaked out a bit -- there has never before been such thing as casually handing Leo off to strangers -- but he didn't mind, so off he went.

I waited in the office, showing the staff Leo's iPad and blowing their minds a bit, and then ... Jen showed up! And listen to me fret a bit. And then had her own meeting with the school district.

Halfway through Leo's visit a class aide came in and asked if Leo had any dietary restrictions, I said no but he was picky and I brought him a sandwich, they said no worries, if he didn't have restrictions then he could have snack with the rest of the class ... and he did. Whoa!

Then a few minutes later they brought him back, said he was wonderful, and that ...he was in on the spot! YEAH! Community! Friends! Community! Good autism school! Community!

Then Jen and I took Leo to lunch - at the OMG gargantuan, SoCal-style mall two blocks from the school. What a contrast to the sad sad piddly malls in our own county.

The restaurant gave Leo a kiddie activity book. He used to ignore them completely, but now he will do dot-to-dots, coloring, and drawing. His current favorite things to draw are a rainbow and a happy face, so I asked him to draw both. And then for fun asked him to draw legs. He did (!). So I asked him to draw arms. He... did! So Jen asked him to draw fingers, and he drew five (Jen watched him count them out), and then by request he drew shoes, hat, ears with whorls inside... so, what what the hell else can this kid do that we just haven't asked him about yet? Of course I left the drawing at the restaurant but I'll have him do it again on DrawFree and share it right here!

Then we took him to a brick and mortar shop I've been trying to hit for almost a year because they make the shorts that fit him best but not all of their shorts fit him best and sometimes it's hard to tell which shorts are which on the website. Leo not only tolerated being in the store (though he did ask to go back to the car) but ... tried on clothes! I think it was his first time ever. If not, still huge - especially as he did it all with verbal prompts and no protest over the fairly illogical process of being asked to remove his pants and try on other pants and then put the original pants back again. I was especially impressed by the deft way he was able to take off the pants both time *while keeping his underwear on*. One of those skills that seems straightforward but for a kid who struggles with motor issues and planning ... it was impressive. Much like Saturday when he told me he was all done swimming and ran out of the pool and into the bathroom and hopped in the tub - and I told him "Leo, no bath" because it was mid-afternoon, and he looked at me like I was an idiot and proceeded to hang up his bathing suit over the bathtub spigot so it could dry - just like I normally do for him but he had never done before.

Then we walked back to the car. Along the way  I bought three more things at three different shops (ear buds with a mic so I'm not just yapping right at my laptop screen when I record interviews, the Aveda facial lotion that smells so lovely that even Seymour loves, and a 2-shot latte) and that was a good reminder that I hate malls not just because they're temples of needless consumerism but because I am helpless before them. Leo tolerated it all.

We're having lots more good days like that, lately. In which even the bad was good -- earlier that morning Leo got mad at me for denying him extra food and gave me a push; when I then told him I was sad and made a sad face, he came over and hugged me. That's new. Can't tell if it was emotional or observation of proper ways to react but I'll take it either way.

A maturing, growing boy.

Every Busy Mom Is Busy in Her Own Way

So this is what having a slightly-more-than-part-time job means to me: I have finally reached my personal busyness limits. There is no space for cramming, no staying up late to finish what needs to be done because I already am staying up late, sometimes until 2:30, and still running into a daily wall of personal fail. "Taking a break" now means watching an episode of Glee while doing laundry. "Taking it easy" means going to bed before midnight. It's fascinating, invigorating, and soul-deadening all at the same time.

But, being busy gives me a good reason to say No, though I am still struggling with actually saying the word. Being busy also makes prioritizing a hell of a lot easier.  Two weeks ago, while I was on deadline, my mom called. She was staying with us for Thanksgiving and was out running errands in my car, so I figured she was calling to check in. Except she was calling to tell me that she'd been the victim of a hit-and-run accident.

Former me might have freaked out. Busy me blinked, then asked if she was okay. She was (whew). I asked if the car was drivable. It was. I asked if everything was under control, or if she needed my help. It was, the police were on site, and she didn't. I thanked her, the stars in the heavens, and went back to work. Everything turned out fine, she was unshaken, they caught the other driver, and I'm tooling around town in a snow-white minivan courtesy of the perpetrator's insurance while my own car gets fixed. All of which would also have happened, had I gotten agitated. But I no longer have time to get riled about that which is under control. Thank you, busyness.

Busy me is both more and less in touch with my body. Three weeks ago, I sprained my ankle by walking down the street while on a work conference call -- but no one on the other line ever heard a peep (though Jennyalice, who was a few paces away, wondered why I started hopping up and down on one leg since we were discussing matters more administrative than incendiary). I was in control! That same afternoon, while attempting to demonstrate that the pain did not get to me and yes of course I could entertain my friend and all of our children while both chatting and serving up group snacks, I misjudged a pupusa location and flash-seared my fingertips on our cast-iron skillet. Clearly, the distraction of being busy doesn't always agree with my body.

Since my laptop lets me work anywhere, I have to be careful about reining in Busy Me. Otherwise, I'll try to fit in a bit of work while making dinner. While watching Ugly Betty with Iz or Totoro with Leo or Dinosaur Train with Mali. While doing laundry. While supervising homework. While helping Leo do puzzles. While decorating the Christmas tree. I thought I was being an able juggler, but this past weekend Iz complained that I work too much, that I'm always working, and she hates it. So I'm thinking about shelving the laptop between school pickups and bedtime. And slightly panicking about losing those valuable interstitial work minutes.

The biggest struggle so far, though, is self-judgment. I'm far from the most busy person in my circle. Yet everyone else I know seems to be juggling more, and hitting all their deadlines. Perhaps I know too many superhumans? I'm not sure. I do know this will only get more interesting. Seymour is going to start traveling a lot for work (everything he's doing is damn cool; I entirely support his going). Leo is only going to get bigger. Iz is coming up on teenhood (please God no). Mali is experimenting with unrepentant defiance (not just towards me but towards her teacher). What are we going to do?

But despite my time challenges, our family situation remains an awesome one. Our kids are sweet and funny, and genuinely caring beings. We have good friends. We carve out time for the events that truly matter. We laugh a lot, we eat well, we are warm at night. I'll give this busyness another couple of months. I'll put away the laptop in the afternoons. And then I'll re-evaluate, because I don't want to be too busy to enjoy the wonderfulness that weaves in and out of my life, every day.