4.29.2011

Targeted Parenting

Have you ever been trapped in the bathroom stall at Target for fifteen-plus minutes with a sudden attack of, shall we say, illness? That itself is mortifying enough -- but imagine that your two young daughters, who are in the bathroom antechamber with strict orders to "share that iPad nicely, do not bicker even once or else, and for God's sake do not sit on the floor" spend the entire time not merely bickering but shrieking and slapping and crying -- and there's not a damn thing you can do since you can't move.

It's a lovely experience, and I'm sure the ladies who flitted in and out of the stalls around us were grateful for the tandem performances. It's also my new go-to anecdote for illustrating that when I fish for parenting sympathy, it's generally not because of Leo.

And an eerie coda: When you walk out of our Target bathroom, you are immediately surrounded by Gatorade, water, and a row of snack foods. I think they've micro-planned their store layout a little too well.

4.28.2011

Apps in Leo's Special Education Classroom

I met with  Leo's 1:1 autism classroom staff earlier this month to talk about how they use the class iPad with Leo and the other students. We talked about the apps Leo liked best, and ways we use Leo's iPad at home that might work in class as well.

The classroom iPad has a good selection of apps already -- six screens' worth, including Leo favorites like FirstWords Deluxe. I showed the staff the apps we had on our iPad, and we talked about which ones the classroom could use. Here are the ones we decided on.
  • Question Builder* For practicing questions. Leo needs help to use this app since it requires literacy, but it actually supports his IEP goal of practicing answering Wh- questions.

  • Conversation Builder* is "designed to help elementary aged children learn how to have multi-exchange conversations with their peers in a variety of social settings." While it's a bit advanced for Leo, the staff thought other kids could benefit.

  • Stories2Learn* Makes creating social stories with pictures and voiceover so easy.

  • Dr. Seuss's ABC* Oceanhouse Media's Dr. Seuss books are great because Leo can tap on any word and "read" himself the book. Supports Leo's literacy IEP goals by reinforcing sight reading.

  • Bob Books* Simple phonics-based spelling and reading. Supports Leo's literacy IEP goal.

  • TouchTrainer* The OT thought this was great -- kids have to touch a moving target a set number of times to proceed to next level/reinforcer. The rate and number of times can be changed.

  • Turn Taker* Helps kids learn to take turns, with intervals of chosen length. Always in season.

  • Quibble Kids* Matching category items via four rotating cubes. Another one that Leo can use with support, and an area that he needs to practice more -- categorizing is hard! The staff thought some of Leo's classmates might really like Quibble Kids.

  • Swapsies* More categorizing, this time using cute figure and uniform tops, bottoms, and hats on "dolls."

  • TallyTots* Leo's current favorite counting app for numbers 1 - 20. Cute animations varied reforcements and counting strategies.
  • Speech With Milo: Verbs*, Speech With Milo: Prepositions*, Speech With Milo: Sequencing* All three apps were developed by an SLP to help kids like Leo and his classmates. The cute animations are motivating for Leo.

  • All About Me* A simple app for writing up and categorizing pictures and information about your child. It lets Leo practice many of the social and personal questions he really needs to know. And, bonus, it works really well with the iPad's built-in voiceover accessibility feature, if, like Leo, your child can't yet read -- voiceover lets Leo "read" all the questions himself.

  • Letter Tracer Trace upper or lower case letters, and numbers. Or practice from an adjacent model on the screen.

  • Moozart Leo really likes exploring basic music notation and composition through this silly barnyard-themed program. This is one he can use as a "break" app.

  • InfinitiTrack Both class staff and the OT liked this one. Track a ball around a figure eight pathway with eyes or finger. Simple but effective.  
I'll write a more general post on iPads in the special ed classroom next week -- my goodness are there a lot of really complicated issues, as well as practically unlimited great resources.
    Starred* apps were donated to the school by the generous developers, whom I approached after the meeting -- usually multiple copies for multiple classrooms.

    The Mobile Education Store has generously donated two copies each of Question Builder and its companion app, Sentence Builder. I'll email them to the first two commenters who 1) suggest other apps that might work in a 1:1 autism classroom like Leo's and  2) state why they want the QB & SB apps.

    4.25.2011

    Leo's iPad Raffle

    photo (c) 2010 Kelly Nicolaisen
    Leo just got an iPad 2. Since he won his original iPad -- you know, the one featured in Apple's iPad: Year One video on the left -- with a raffle ticket, we decided to raffle that iPad off to a new owner.

    Congratulations to winner Megan Savage!

    Update: The raffle is over, you helped us raise $890 for the Autism Science Foundation! Amazing.

    Please go to Leo's iPad Raffle Crowdrise page to make your donation and buy your virtual ticket.

    The winner will also receive the following free apps, courtesy of their developers:
    We're asking $10 for each virtual raffle ticket (since that's the minimum donation for Crowdrise, the fundraising org), but if you can, please donate more! All donations will go directly to the Autism Science Foundation, as a thank you for my IMFAR travel grant.


    Raffle ends at noon PST on Friday, April 29th, the winner will be announced at 1 PM PST, and will be selected using Random.org.

    ----

    Fine print:
    • Entrants are bound by the rules laid out on this page.
    • iPad will arrive as is: one used 16 GB iPad 1 with case and charger, no warranty or Apple Care. We are not responsible for damage en route or technical problems upon receipt.
    • The iPad will be restored to its original factory settings. The new owner must set up a an iTunes account, and install any apps.
    • Entrants must be both (1) a legal resident of the United States and (2) at least eighteen (18) years old.
    • Entrants are responsible for any federal, state, county or other local income taxes.
    • Entrants agree to waive, discharge, release and hold harmless Shannon Des Roches Rosa from any and all liability for any injuries, loss, or damages of any kind arising from or in connection with this raffle.
    • We cannot accept entries before or after the eligibility period. We are not responsible for lost or misdirected entries.
    • Winners are responsible for confirming notification and providing a valid U.S. mailing address within 72 hours. If winners do not contact us within the 72 hour time frame, we will select an alternate winner. We are not responsible for winners' lost or misdirected emails, tweets, or Facebook messages.

    Spring Break: Beyond Fabulous, Beyond Exhausting

    We could approach spring break casually, I suppose, but we don't know how. Leo is happiest when he's busy, so we don't chill -- we schedule. Or, as some concerned friends and perhaps husbands have pointed out, overschedule. But the kids and I had so much fun during their two tandem weeks sans school! Look:

    We kicked our week off with a favorite, Butano State Park near Pescadero. The redwoods, coolness, and quiet act like a giant body sock on me and our kids. This is the hike we take new friends on, so they can see our kids at their best. When I am frazzled, I want to see our kids at their best, too. And so we went. Leo always enjoys hiking at Butano.

    Mali always knows how to put herself together for the trail -- straightened hair courtesy of big sister Iz, and an animal-print tutu. She was delighted to discover so many blooming trilliums, and introduced herself to nearly a score of banana slugs:


    QUEST on KQED Public Media.

    (Banana slug video courtesy of Seymour and team. If you want some good randy banana slug backstory, take the man out for a beer. He's got material.)

    On another day, our friend Laura Shumaker came for a neighborhood hike with me & Leo, which was too fun -- Laura knows everyone, and always shares the best stories about raising her not-at-all-like-Leo-but-still-autistic son Matthew, who's now a young adult. And Leo adored Laura, as you can see by the hand-holding. A warning, though -- Laura likes to pounce on the lunch check. Next time, I won't have Leo with me, so she should ready herself for a preemptive check strike.
    Leo and I always plan a Sebastopol day when we have a good stretch of free time -- the area has endless hiking, fun, & funkiness opportunities. We're fans particularly of People's Music on Main Street, which has nearly any instrument you could imagine, and where the generous staff lets Leo explore them however he likes -- which is how I now know that the steel drum I'd long considered getting him would have been met with meh.
    We also make a point of hitting Screaming Mimi's conjured on site and sold by weight ice cream, especially if we can meet up with smart Twitter friends whom I will not out, while we're nomming.



    Sebastopol also has playgrounds designed by people who understand that kids crave varied gross motor/weight bearing activity. We hadn't visited the relatively new Ragle Ranch Playground before, so that made it doubly-motivating for Leo. But what I really enjoyed was watching him cross this webbed rope bridge repeatedly, until he could do so without losing his footing. Love watching our boy persevere.

    The trails at Ragle Ranch itself were rather mucky with mud, but it was still a lovely day and we banked at least a mile. So not entirely a wash. Leo thought the gloompy mud and the sound it made when he extracted his foot were delightful; I have not yet washed those shoes. *shudder*

    We also always hit Harmony Farm Supplies, since they really do have the region's best plant, seed, bulb, & gear selection. But more interesting than their Himalayan strawberry and broccoli starters was this flyer on their community billboard! A goat source! Just wait, one day I will have my own herd of tiny aponkyes (Twi for goat), you'll see. Not kidding. Enrolling Mali in 4H, come Fall.

    There are so many places to hike in our area, it's almost embarrassing. We can walk out our back door to one set of trails, and two more regional parks are within homemade catapult distance. And if we're willing to drive or bike a couple of miles, then the possibilities near innumerable. Arastradero is one such place - a lovely, earnest park where the nature center features straw bale construction, native plant restoration is active and ongoing, the toilets are clean and plentiful with paper towels intentionally amiss, and the hiking is mellow. We like it.


    Mali complained a bit during our two-miler, but she can't really be blamed. Neither Leo nor I are dawdlers, and her legs are short. She did have fun, this is evidence.

    We have to keep up our energy somehow during all that hiking. Thankfully a local place started making spectacular cupcakes, so good my kids' squeals of excitement spiral into wavelengths only bats and dogs can hear, and I was willing to risk Iz's godfather's displeasure. Leo gives them his seal of approval.

    Oh, and hey! Our new iPad 2 arrived. We were busy folk and kept missing the FedEx truck, and had to go pick it up at local HQ, where the girls had no problem telling the employees that Leo was not just any iPad 2 owner, in their opinion. Posts on cases, new apps, raffling off Leo's original iPad, and apps in the classroom coming soon. As in this week.

    Seymour and I had exactly one night off together during the two weeks of madness. We used it to celebrate the 20 years since our first date on April 12, 1991 under Sr. Procopio's watchful eye. We had a lovely dinner eventually, though Seymour's arrival was delayed 90 minutes by a really unfortunate CalTrain accident. Can't really complain about that.

    Leo decided that the best way to start off week two of spring break -- the week his sisters, not he, was out, was by jumping on Iz and torturing her awake. She was not pleased. (Note stack of heavy books over Iz's head. This girl has been warned, but has obviously not yet experienced an earthquake.)

    Happy Leo! But not-much-for-sleeping Leo, unfortunately. I'm not sure if it was because of meds changes (more on that soon, most likely with a request for advice) or just growing and changing, but he's had a shitty sleep pattern lately, not going to bed until 11 PM some nights, waking up as early as 3 AM others, remaining as happy as you see him here.

    The second week also brought my brother Chet and his Mali-energetic son P. to stay. For a whole week! Chet always has a lot of information to share, for instance Oman has great beaches, did you know? Though I did break out the tiny violin when he complained that he'd only been skiing twice this winter, as that gripe included indoor skiing in Dubai. But he taught the girls how to eat kiwifruit with a spoon, and he gave us an excuse to eat Mexican food almost every day (it's not nearly so good in his part of the country, he says). And he's straight-up good company.

    Also, Mali & Iz have completely converted P. to the ways of Akiko and Babymouse, so their trip was a success on the literature front as well.

    Of course we went to the Pebble Beach at Año Nuevo State Park. It's what we do! It's the most remarkable beach in the area, as long as you don't equate "beach" with "sun" or "swimming."


    And who doesn't like to find a good Turkish towel? Sometimes I dream of what this beach might look like, what shells and creatures and discoveries would litter it, were beachcombers barred from removing their finds.

    Until we get that herd of goats, we have to clear our hillside by paying lots of money to humans. Which we did last week. One benefit: We can get to our see-saw! Since our pool is not warm enough for Leo to swim, he now asks us to go see-sawing every hour on the hour. Which is understandable, given how happy it makes him (here with his uncle).

    The First Rule of CalAcademy Is: Gotta Sit on the Galapagos Tortoise

    We've become official CalAcademy devotees. Which means we can now drag guests along at a moment's notice! I'm looking forward to the opportunity to explore more nooks and crannies, but the kids (and my brother) enjoyed even our quick five-hour visit.

    Then, of course, we took Chet and P. rock climbing at Castle Rock state park. It always feels weird, going without Leo since he loves bouldering so much, but the kids' enthusiasm made up for my guilt. And the day was so so beautiful, and the park practically empty of other hikers/climbers.

    We went straight from climbing to picking up Leo, so his cousin could see his school -- and were greeted with a sick boy who'd gone through four changes of clothing -- all of which were handed to us in plastic bags. At the time, I thought Leo had food poisoning, so we took him home and washed him off and let him rest. He went from green (literally) to pink and healthy by the time he went to sleep, so we thought he was fine.

    So I didn't worry much as Jennyalice & I drove up to San Francisco and hung out with some of our favorite people -- all of whom we know through blogging, btw -- and celebrated a birthday. We know cool folks, is all I can say -- and, also, now I know what the cool lofts by Seymour's work look like inside!



    My brother had never experienced anything like Dynamo Donuts, so the next day we indoctrinated him. He approved. I have to say, the proprietors are extremely kind with chatty, possibly overenthusiastic six-year-old girls.

    We also took Uncle Chet & his boy to Franklin Square playground. Merry-go-round FTW! Though Mali got spun off once, and she was not pleased.

    We then took our vistors to the Cartoon Art Museum, where we met up with friends who share Chet's love of all things Looney Toons, and exercised extreme self-control in emerging from the gift shop with only a single Amelia Rules! volume.

    We had plans to way laste to more of the city, but unfortunately Leo's school called with the news that our boy was sick again. Nothing quite like having to make a 50-mile dash. Leo was actually in good spirits rather than ashen this time, but we took him home and decided that he would stay home the next as well -- his first-ever sick day at his new school.



    Which meant Leo got to come watch Iz and P. go indoor skydiving! Poor Leo, he really wanted to skydive too. But participants have to be extremely good at following directions in a sensory-overload environment while wearing ear plugs -- wasn't going to happen. Iz's paratrooping uncle said she was a natural, though (while noting that parachuting and skydiving are different skill sets). Iz then used her newfound aerodynamics knowledge to pooh-pooh Margot Kidder's flying sequence with Christopher Reeve in Superman, which I made her watch that night after she asked "Who is Christopher Reeve?"

    After the Superman showing, almost everyone in the house became sick. (Causation! Superman causes stomach flu!) I ceded our room to Seymour and went to sleep with Mali, who didn't appear too bad off but who woke me at 2 AM with a vomit shower. Our guests had planned to leave that morning anyhow; I'm guessing they'd have found an excuse regardless. And I'm worried we seeded the entire Bay Area with the dreaded ick. Good thing I'd already written my Easters With Elvis BlogHer post! And Iz is still home sick today.

    I won't deny that these two weeks laid me low by the time they were over. But I like to think the exhaustion has to do with the stomach flu's five-day Rosenberg campaign (I alone have not puked as of this writing) coupled with several of Leo's respite sessions getting canceled. I wouldn't change the rest. I love my family, I love our friends, I love where we live -- I can only feel grateful for getting two weeks to embrace them all so fully.

    4.22.2011

    Must-Watch Autism Videos

    Here is my current autism video queue. This queue should be your queue, too.

    The IACC [InterAgency Autism Coordinating Committee] Full Committee Meeting April 11, 2011. This is a long, long video -- but it's broken up into easily-accessed sections if you view the video through the site. My favorite part so far is Lindsey Nebeker's public comments on safety and the need for support for people with autism like her, but especially for people like her younger brother James, who also has autism but whose needs are more "severe," who lives in a group home, and who will become her legal responsibility when her parents pass away.

    The MacNeil AutismNow series is this week's most prominent must-see. Though the madness of spring break means I have yet to see them, their viewing is next on my list (after sleeping, helping Leo sleep too, and wishing fervently for our cheerful but unsettled-stomach son to go 24 hours without projectile vomiting).

    Distressingly, feedback from trusted sources is not great. Seth Mnookin called the series "An embarrassing, reckless, and irresponsible coda to Robert MacNeil’s career," as MacNeil let his daughter Alison state, on camera, that "Paul Offit and former CDC director Julie Gerberding 'have lost touch with their humanity. ...I don’t know how either of them manage their guilt and complicity in hurting so many babies.'"ASAN, the Autistic Self-Advocacy Network, is concerned that MacNeil "Leaves Out Key Stakeholders, Relies on Old Stereotypes." Dr. Vincent Iannelli at About.Com Pediatrics worries that "we don't need another show to falsely increase fears of vaccination."

    I suspect that the series is made from the perspective of a worried grandfather with a less-than-deep understanding of and experience with autism, whose emotional investment knocked his reporting gears out of balance. If my parents had made a documentary about autism when Leo was little, it would have had a similar tone -- especially if they had filtered it through my then-beliefs about vaccine causation.

    Since the series is in the bag, I hope that MacNeil does a follow up in a year or two, after he's talked with adults with autism and -- well -- families like ours, who put respect and love for our kids before their labels and challenges. No one can deny our kids need support, but, as Rivka Iacullo said in today's Thinking Person's Guide to Autism essay, Randomness, "[My child] doesn’t need to be fixed; he needs help in ways I didn’t anticipate."

    Here is Robert MacNeil himself, talking with Hari Sreenivasen about the genesis of the series. I think it is important to hear Mr. MacNeil talk about coming at the series as a reporter yet crossing the line into personal territory.



    The entire six-part series plus additional interviews and study materials can be found at www.pbs.org/newshour/news/autism.

    I've also been enjoying Holly Robinson Peete's series on The Talk, about Teens With Autism. Holly's approach on these segments is all about love, acceptance, and being proud of folks like Winfred Cooper and Carly Fleischmann for their successes.



    Have I missed any other recent autism video must-sees?

    4.20.2011

    A CalAcademy iPad 2 Spring Break Photo Fest

    Last week was Leo's spring break, this week is the girls'. And because it wasn't awesome enough for the girls to have nine consecutive school-free days in a row, one of their favorite cousins is in town, along with his dad, my brother Chet. How much Bay Area fun can a quintet pack into a single week? We're exploring that idea to the fullest.

    We spent yesterday at CalAcademy. If you've not been, well, damn, I'm so sorry. Please know that the CalAcademy.org site provides an extensive and immersive virtual experience. I especially recommend the new Planetarium show Life: A Cosmic Experience - did you know that CalAcademy members get their own special Planetarium show right at opening time? We do now. No line at all, which is something during spring break.

    Our big experiment for the day was taking photos exclusively with the iPad 2. The photos were grainy, especially in low light situations, but mostly usable enough. You can tell that Mali and her cousin would pass through the wall of this aquarium and become fish themselves, were it possible.

    Backlit Aquarium

    Well-lit photos look better, as when Iz found out that starfish are not exactly helpless -- even though she was prodding this one according to the docent's guidelines, it turned around and latched onto her with its tube feet, and wouldn't let go. I told her she was lucky to get away before it turned its stomach inside out over her finger and started digesting it.

    When Tubefeet Attack!

    In case you think it was evil of me to invoke that starfish to terrorize Iz, she earned it. She has been encouraging her good-hearted but easily cajoled cousin into ganging up on Mali at every possible opportunity. Mali needed a lot of consoling each time her current very favorite cousin in the world turned on her, in the name of what he was told was good fun but which Iz had orchestrated with pure malice. (She took this picture, by the way. Time to dye those roots, ahem.)

    Comforting India

    One extra-cool iPad 2 benefit: Every time a sign was too high for Mali to read it easily (short, plus thick glasses), all I had to do was take a picture with the iPad and then hand the iPad to her. Gawking passersby thought this was nifty, too, apparently.

    Another iPad 2 Use: Photos of Signage for Short Kids

    We won't be giving up our regular camera, but the iPad 2 camera was certainly fun - especially for the kids. (A warning - it is almost too easy to take pix, so give your kids clear photo-taking-volume instructions, unless you don't mind photo culling.)

    There's a whole lot else going on this week - PBS News Hour's autism series, Leo's med changes, some really spectacular Autism Story Sharing Month essays on The Thinking Person's Guide to Autism. Spring break exhaustion is hampering my documenting these things as fully as I'd prefer -- there is no daytime downtime, which is problematic for keeping these introvert's batteries charged -- but every day is also full to bursting with fun and family. It's a completely acceptable trade off, unless you've been waiting on me for correspondence.

    4.17.2011

    The Bunny Hop 2011


    Local org AbilityPath held a special Caring Easter Bunny event just for Leo & his friends this morning, with Bunny social stories, practically-no-wait photo ops, and (most importantly for our guy), complimentary mini-croissants. We got to spend time with several of our friends, and we all appreciated the low-stress community socializing. So, thank you, AbilityPath. It was a very sweet morning, which I especially appreciated since Leo's spring break plain wore me out, and the girls' spring break is just starting.

    I love the photo the kids took during the event. It may not be magazine cover quality, but I think it represents our kids so well -- Mali hamming it up, Iz making sure everything's OK, and Leo thoroughly enjoying the moment. This is who they are.

    4.15.2011

    Leo's iPad 2: First Look, Contemplating Cases

    Look what's here!


    And look what it says, to Leo's sisters' chagrin!


    We're having a grand old time with it so far, Leo and I are. We spent this morning running errands and taking pictures with the iPad 2's built-in camera. And when we got home, and since we didn't have to do any photo uploading, it took us all of 15 minutes to make a social story about our morning, using one of our favorite apps Stories2Learn:


     The photos are not the same quality as those from my camera, but the trade off for convenience? Oh yeah, I'm there. Next we'll see how the integrated videotaping & editing works for creating social story videos. Too exciting!

    Leo himself is reacting as I hoped he would: In a state of pure delight to have all of his favorite videos and movies in one place again (this is the reason we sprung for the 64 GB version; the 16 GB filled up months ago and required constant content weeding.)

    Our next step is to get a case. Having a naked iPad makes me nervous about accidents and smashing. Adding to my discomfort with taking it out of the house is Seymour's tale of a friend who had one snatched right out of her hands as she stood on a San Francisco street corner. iTunes will let you re-download purchased apps for free, so hopefully she was able to restore most of what she lost, but still -- I don't favor walking around with a big shiny silver Apple bullseye in my arms, especially since I'm almost always completely distracted by my kids.

    So, cases. Apple's iPad 2 Smart Covers do not protect the back of the tablet from banging and scratches, and Apple currently does not provide iPad2 case options. OtterBox's iPad 2 covers are coming soon, but they're not here yet. Our ideal is a case that is easy to install and use and provides protection around the back of the case and ideally around the front too -- but it's the dropping factor we're most worried about. Here are some iPad 2 case options we're considering for Leo. I'd appreciate any other suggestions:
    We're going to make our decision soon. For now, back to playing with our Leo's new not-really-a toy!

    4.13.2011

    The Mumbler

    Leo has a new stim. I'm not sure what to make of it -- he's started mumbling, and he started about a week ago.

    We've recently changed his meds (more on that later), so it's tempting to attribute the mumbling to the remix -- but I've also become leery of jumping to coincidental conclusions, especially as he changes his stims every couple of weeks.

    What I do know -- he's talking in the back of his throat, keeping his teeth clenched. It's near-unintelligible, and I'm being a mean awful mom in not giving him what he's asking for even if I can understand the verbal mush, not until he moves those lips and gives me words that could be reasonably understood by casual bystanders.

    The mumbling seems to be for requests only, or when he's thinking about having to talk, because last night when he was playing "Jump on Daddy!" those words were loud and articulated with Henry Higgins-like precision. Much like the way his sisters are polite reflexively and when halfway asleep, yet often rude when wide awake and requesting desperately.

    So, what do you think? A new stim, an affectation, anything anyone has seen before? SLPs?

    4.10.2011

    Come to San Diego for IMFAR, Stay for the iPad Workshop

    Are you going to IMFAR, the International Meeting for Autism Research? IMFAR's goal is "to provide ASD researchers from around the world with a focused opportunity to share the rapidly moving scientific investigation of ASD."

    I was lucky enough to be awarded an Autism Science Foundation IMFAR Stakeholder travel grant, so I'll be in San Diego May 11 through the 15th, covering IMFAR for The Thinking Person's Guide to Autism. I'm looking forward to getting my head blown off by the flood of information on latest in autism science -- though admittedly my noggin's already been knocked partially askew just from looking over the preliminary conference schedule, which has attendees fully immersed from 8 AM to 8 PM the first two days, and 8 AM to 3 PM Saturday.

    As I was already going to be in town, the Autism Society San Diego kindly invited me to do an iPad workshop on Sunday, May 15th from 11 AM to 3 PM. If you're interested and you're going to be around, come! It'll be fun, though, ahem, not free. Here's what we'll be doing (and I write "we" because Janine, the Good Karma Applications Inc. powerhouse who developed Leo's beloved First-Then Visual Schedule app will be on hand as well).
    In this Hands-On Workshop you will learn: how to determine if the iPad is an appropriate fit for your child; a survey of helpful apps and how to use them, and resources for getting funding and justifying a school district/insurance iPad purchase. Shannon Des Roches Rosa will give an expert, parent perspective on her son Leo's iPad story. Shannon and Leo were featured in Apple's iPad: Year One Video. Participants are encouraged to bring their iPad or iTouch devices so you can check out features as we talk! Not required for participation.
    And somewhere in there, I'll be hitting Rigoberto's Taqueria and getting a Biciclette cocktail at the La Valencia.

    Very much looking forward to San Diego.

    4.08.2011

    Public Penance

    Oh lord, I'm in Redbook magazine this month -- as a former horrible bully apologizing to those I tormented in middle school (or junior high, as we called it). The article is based on my 2009 Can I Sit With You? story, Not Nice:
    I found every last part of seventh grade bewildering. The hundreds of new students, the maze-like new campus, the rows and rows of lockers, having to choose classes and then needing to switch between those classes six times each day, the concept of “popularity” and its blatant yet slippery links to student government elections, and the hundreds of new students.

    My classmates and I had been plucked from our isolated, comforting, elementary school nerdling pod, and dropped into a massive social cage match. I found myself on the sidelines, confused and lost, in a holding pen with the geekiest geeks from five other elementaries.

    I might have been at a social disadvantage, but I was also not a nice kid. And I quickly compensated for my social disorientation by picking on the weaker and geekier.
    So, please, feel free to tell me what an asshole I was. And be assured that, though decades of interim social conditioning  led to improved impulse control and diplomatic skills, I am still a dick-at-heart -- though a generally kindly one.

    Were you ever awful in middle school? Would you mind telling me something horrible that you did, so we can don twin online hair shirts? Or something someone did to you, so we can vilify them in absentia?

    4.06.2011

    App Review: Kiboomu's Toddler Sing & Learn

    Obviously, we don't care what apps are called as long as they appeal to Leo, so I was more than happy to have our ten-year-old boy try out Kiboomu's app Toddler Sing & Learn ($1.99). Leo is already a fan of Kiboomu's piano/karaoke/sing along apps Old MacDonald Piano and Twinkle Twinkle Little Star Storybook Piano, so I had high expectations -- and was not disappointed. This is a straightforward but versatile and engaging app, especially for kids like Leo for whom music is a language.

    Toddler Sing & Learn is a collection of ten simple songs, including several Leo already knows and loves -- Apples and Bananas, and The Ants Come Marching In.

    The app's main screen presents three options: Puzzles, Color, and Sing; all three contain the same ten screens (one per song). Consistent graphics are good for kids like Leo who are visually oriented -- they see the same screen, they know what song to expect. Predictable navigation structure helps Leo use and explore the app independently.

    The three modes function differently, just as advertised. Puzzle mode (pictured) lets kids drag different picture elements as they appear in the upper right corner, and drop them into the same-shaped area on the screen. Leo thinks this mode is hilarious -- and he's certainly very good at it.

    Color mode is simple but nicely designed. Each song's trademark screen appears in outline mode. The only option is to choose the color the user wants to paint with from a column of colored pencils on the screen's right side, then Leo uses his finger to color away. Again, this is ideal for our boy. He doesn't have to deal with pop-up menus or navigating to other screens yet can still have coloring/design optionos.

    Sing mode is just that -- the song sung over the screen. Leo is less interested in this mode since the interactivity is limited -- but he likes it well enough,  and loves the other two modes.

    As Leo's parent, I appreciate that Toddler Sing & Learn gives kids lots of positive reinforcement when tasks are completed (see third photo; there is audio cheering as well). And the songs sound  professional and not too grating -- I can only take so many kids' songs, and have zero tolerance for crappy or mediocre recordings. So Leo and I are both pleased.

    If, like Leo, your child likes music and gravitates towards apps with simple yet varied and easily navigated activities, then Toddler Sing & Learn is a good choice.

    ---

    Disclosure: I was provided with a complimentary copy of Toddler Sing & Learn, but that has no bearing on my opinions as presented here.

    4.04.2011

    Awareness Is Lovely But Now It's IEP Day

    While I've been making several contributions to Autism Awareness Day/Month -- interviewing the luminous Laura Shumaker for BlogHer, insisting that true autism awareness lies in one understanding: that behavior is communication, musing on what a Radiolab Autism Awareness Day show would be like, and hanging out on CafeMom all month long as one of their autism experts -- tomorrow's going to be a more hands-on kind of autism day.

    It's Leo's annual IEP.

    And it will be interesting, going into a meeting where everyone is on Leo's side, in which for the first time ever the staff and I corresponded on and brainstormed goals together. During which the staff and I agreed on several wish list items for Leo, like riding a two-wheeled bike, but also agreed not to include the wish list items in the IEP because then the activities will become a data-driven imperatives and Leo may reject them.

    In which many services could be permanently stripped because despite Leo's significant needs (even in our large school district, only a handful of kids have non-public-school placements), California's budget is all f'd up, and word on the educational-email-forums-street is that deep, painful cuts are coming. And Leo's an expensive kid.

    I'm looking over his goals right now, and they look good. Helpful. Ready to help Leo make a critical transition, one he seems poised to make: to conceptualize and articulate the abstract. His teacher and Supervisor M, who still consults on his program both at school and at home, both have faith in our boy.

    The goals will need some fine-tuning to make them air-tight -- the idea being that if the entire class staff disappeared mysteriously, the replacement staff could pick up the goals, look at their current status, and resume implementing them as intended with nary a hiccup.

    My chest is tightening as I write this, stupid nerves. At least Leelo could care less about IEPs or awareness campaigns. He spent the weekend being his own happy self: happy to wake us up in the morning by bounding into our bed for snuggles, happy to go to the opening weekend of the farmer's market with his dad, happy to hike along miles of beach with my cousin and me and Mali, happy to play with his iPad and his trains and all the shampoo bottles he's emptied into his tub, happy to try a bit of bacon (!) if followed by a bite of cinnamon toast, happy to let his little sister show him how to play the apps Quibble and Swapsies, and happy to put his head on my shoulder while he watches Teletubbies or Hamtaro two hours past his bedtime. Happy.

    The awareness and goals will make a difference Leo's his future, and I'll never stop working on them -- but I truly appreciate the fact that he's happy. Right now. In this very moment.

    4.02.2011

    If Radiolab Covered Autism Awareness Day

    Last week, Seymour beat out all but one of his public media co-workers for a coveted ticket to Radiolab's San Francisco performance with Zoe Keating -- and, being an intuitive who can differentiate between supporting and enabling addictions, he gave his ticket to me. I spent Sunday evening sitting & chatting with fellow curiosity devotees, gleefully soaking in a live show that was every bit as good as Jad Abumrad & Robert Krulwich's audio performances yet better than you could possibly imagine.

    And as I watched the show and took bad pictures with my not-smart phone's camera, I wondered -- what would a Radiolab show about autism awareness be like? Since Radiolab always surprises me, I can't say what they would do -- but I can tell you what I'd like to see:

    First story: Behavior Is Communication (From my BlogHer Autism Awareness post)
    I want to tell you a secret about Autism Awareness. Ready? Here it is:

    Behavior is communication. That's it. That's all. That's everything.

    If you put your mental backbone into behavioral awareness, into trying to understand why a person with autism, or a person associated with autism, behaves the way they do -- if you can make yourself truly aware of that person's needs -- then that is when the connections will happen, that is when you will make a difference, that is when awareness can leapfrog goodwill, and translate into real-world benefits and positive actions. 

    You need to remember that an autism label is just that -- a label. It can help describe your child, but it doesn't define your child. You need to set the label aside, enlist it as needed, and instead hyperfocus on what your child does, and why they do it. You'll probably have to jettison some lingering hopes and dreams about your child's future to focus on your child's reality -- but since parenting always involves a large amount of eventual ego-disentangling, assure yourself that you're actually ahead of the curve.

    But, the behaviors! They don't always make sense, not on the surface, not if you've never encountered anything like them before. Does your child scream if they can't wear their favorite shoes? Can they talk happily (and indefinitely) about sprinkler systems or precious gems or superheroes? Do they enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Do they fear the toilet, the market, the dentist? Make understanding those behaviors the focus of your approach. Decide which quirks are quirky, and which are legitimate impediments to learning, self-care, health, and socialization -- then put your energies into helping your child get past the roadblocks.
    Second Story: A Social Skills Year Abroad in Japan (From Carol Greenburg's essay George Takei on My Mind)
    I left home at 17, and spent what would have been my last year of high school in a tiny Japanese fishing village nestled among Mandarin orange groves on the shores of the inland sea. My comparatively trivial status as just a bit of an outsider explained my inability to fit in in the US or Japan, and was entirely predictable. All autistic people are to some extent outsiders wherever they go, so it never occurred to me I'd be accepted readily in Japan. I guess if I had thought it through, I would have seen flaws in my plan. A socially inept uber-individualist like me in such a heterogeneous, conformist society: not such a great idea on the face of it.

    I was obviously an odd duck, but at the time no one knew autism explained much of my behavior. My hosts quite logically concluded that my strangeness was a result of my American upbringing. Untrue of course. My mother is not autistic. In fact she is an uncommonly gracious woman by the most rigorous standards of any culture. I was raised right, but developmentally delayed by autism -- it took me much longer than average to learn the simplest niceties such as greeting people and saying goodbye properly when I entered and left a room. Luckily, when I was finally capable of absorbing basic social skills, I had the privilege of living in the most polite society the world has ever known under the tutelage of people who showered me with amazing kindness.

    I quickly reached my goal of becoming fluent in Japanese, as I had hoped, but I learned so many other skills I never even knew existed: that people and their feelings are usually more important than principles, so that sometimes an ounce of diplomacy counts more than a pound of the blunt indiscretion I called honesty. I learned about "Gaman," loosely translated as endurance, a quality I already had in abundance. But true Gaman is so much more than that, to merely survive is admirable, but to do so with grace and consideration for those around you is a higher value.
    Third story: Talking With Dora Raymaker
    We talk with Dora Raymaker, an adult with autism, as she demonstrates via fluid and nimble AAC communication, why it is important to understand that difficulty in thinking and difficulty in speaking are not always paired, and why we must encourage the inclusion of people on the autistic spectrum in matters which directly affect them
    Fourth story: Telling Tales About Autism and Science
    In the storytelling-taking-science-by-its-lapels spirit of our episode Tell Me a Story, scientist Emily Willingham asks, "So, where are we now? Now that we've made strides in shuffling off the burden of the biggest distractor of a global vaccine etiology, where does that leave the science of autism?"

    Emily talks about how the science is where everyone should have been looking all along: in the genes. She tells us what to watch for in the science of autism in the coming years: copy number variation (CNVs), Mitochondria, specific genes, hormones, and epigenetics.
    And that's what I'd like to see on a Radiolab autism awareness day show. I'm Shannon Des Roches Rosa, and I'll be opining on CafeMom all month long, as one of their designated Autism Experts.

    ThinkGeek Apple iPad: Year One Parody!

    Autism awareness post coming in an hour or so -- in the meantime you can check out my AA post for BlogHer. For now, amuse yourself with Leelo's & Iz's cameos in ThinkGeek's Apple: iPad: Year One Parody:



    *Snort*