Squidalicious

Wait For It...

2012-02-01T00:09:00.000-08:00

Do you know someone who is Autistic? Do you know that many people like my son either need extra time to process input, or work best processing one thing at a time -- like sound or visual input but not both simultaneously? This can be a challenge for outside-autism people to comprehend; it's also not one of the things we all talk about enough when we talk about autism, in my opinion.

Leo is a textbook kid when it comes to needing an extra beat or two. As he lives in the middle of a never-ending activity vortex, we have to be careful to make sure he gets the beats he needs.

Leo's processing needs combined with his not speaking much means folks frequently underestimate our boy, so please remember this if nothing else: he's not much of a talker, but he is absolutely a hearer and an understander.

When I talk to Leo, especially when I ask him a question, I don't always use the short crisp loud phrases he needed when he was little. Not unless he really doesn't hear me, or really doesn't understand me. Most of the time, I speak to him no differently than to his sisters, in asking things like "Leo, did you want to go with me to the store? Then you need to put on your shoes." Pause, process -- then he walks to the door and the shoes go on.

Sometimes, if there's an eye lock when we're talking, I can watch his cogs turn. (Probably because it takes longer to process when he's also actively looking at me.) But then: one moment, two -- he responds, and appropriately. He uses the detachable shower head to rinse his own hair, he goes upstairs and turns off the light he accidentally left on in his room.

And sometimes, processing isn't what's happening at all. He's been refusing to sit in his seat when gets on his bus, insisting on standing for about ten seconds first. After a few days of me and the driver both being slightly exasperated, Leo turned to the side while standing and I saw why he was balking -- he'd discovered the joy of using his breath to fog up a cold glass window, and then drawing patterns with his fingers. He discovered this all on his own. It was fun. And new. And once he was buckled in his seat, he couldn't reach the window. If he didn't fog up the window right when he got on the bus, he wouldn't get to do it at all.

I can wait a beat for that.

Four Damned Amazing Interviews

2012-01-30T11:25:00.000-08:00

A bit of an interview avalanche last week, each time alongside people and on sites I respect tremendously. Quite squee-worthy. I appreciate the opportunity to get the word out about autism respect, community, acceptance, hurtful stereotypes, the uselessness of pity, all that. I'm listing the posts here for documentation purposes, and with some of my quotes pulled out -- but you really do need to read all four interview sessions.

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Most readers know my husband works at KQED. It's a big org, he doesn't know everyone -- and he specifically doesn't know the reporter below. But she works with a friend of his, and when she said she was working on an autism report, that friend made the connection happen. (As Seymour is technically a coworker, he was not interviewed for this post):

KQED's The California Report, Interview by Lisa Aliferis: Parenting an Autistic Child

[Rosa] criticizes the media for conditioning people “to fear autism as the worst possible thing that can happen to us.” Instead, she encourages parents of autistic children to work on understanding them, and helping them to develop as fully as possible. “I see my son as a happy child who needs support in a lot of day to day activities. He needs one to one supervision, but, within that, I want people to try to accept him on his own terms,” she says. “Pity is of no use for us. What does pity do for us? Nothing. … Pity closes off opportunities. Patronizing closes off opportunities."

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Seth Mnookin hosted a rather amazing autism discussion, both on his own PLoS blog and on Huff Po Science. He "asked some of the people who've influenced my thinking about all of these issues to collaborate on a virtual roundtable." The other participants were Todd Drezner, Ari Ne'eman, John Elder Robison, and Steve Silberman. I was a bit gobsmacked* to be included. The roundtable took place across two posts:

The Panic Virus on PLoS Blogs: Autism roundtable, Part I: Angry parents, disability rights, and living in a neurotypical world

We created TPGA because we want to reach people newly affected by autism — family members, people with new autism diagnoses, people who are wondering if they themselves might have autism — before the media takes them down the pity, horror, and misinformation rabbit hole. This is in parallel to the discussion Seth and I recently had on TPGA, in which he pointed out that if more parents felt comfortable having conversations with their pediatricians, if they felt like they could get all their vaccine (and other) questions answered, then they might not go bounding off into the Internet.

Huffington Post Science: Autism Roundtable: Cross-Disability Solidarity, Goals for the Future, and What it Means to "Fit in"

Mostly, I'd like to see a real-world infrastructure that combines the strengths of TPGA with ASAN and similar organizations, that brings Autistics and/or everyone who plays a major role in their lives together to provide instant community and facilitate best practices autism learning. Then, ideally, we could devote more energy and resources to beneficial policy and science. I wonder how much more we could achieve, how many more people would get the support they need, if everyone was able to hit the ground running after an autism diagnosis.

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Quoted on the very best SciFi site in the universe, io9, talking about autism and Star Trek: TNG? Doesn't get much better than this for me! Especially as I adore Charlie, Carol, and Steve (whom I didn't even know was included until publication).

io9, interviewed alongside Carol Greenburg and Steve Silberman, by Charlie Jane Anders: Why Do We Want Autistic Kids to Have Superpowers?

So why do we want autistic people to have superpowers? I talked to Rosa, and she says that there are two conflicting things at work. We want autistic people to want to be like us, like Data from Star Trek: The Next Generation. And secondly, we're "obsessed with exceptionalism," says Rosa. "People can't handle the fact that some people are just different without having something fabulously acceptable as balance, because otherwise we'd just have to accept autistic people on their own terms, and that's hard and challenging and takes patience and work."

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*I use gobsmacked often because I truly do get gobsmacked often.

iPads & Autism Workshop in a Can

2012-01-28T21:40:00.003-08:00

Here's the outline from the three hour Morgan Autism Center iPads & Autism workshop I gave today. I went much more in-depth on these topics during the presentation, so if anything isn't clear, do ask. Please note that I update the handout for every workshop, and so have to qualify that this information is current as of today. The workshop was oriented towards parents and professionals working with autistic children, but much of this information is useful for autistic adults and anyone interested in iPads.

The workshop itself went well -- lots of great questions from the audience, plus a Deaf attendee brought up several issues I had not considered, like the need for a labeling app that integrates user videos for pre-reading Deaf users, so they can see the signs for the objects -- as voiceover is not going to help in that context.

iPads and Autism:
Helping Our Kids Learn, Helping Our Kids Play

Shannon Des Roches Rosa | www.thinkingautismguide.com | www.squidalicious.com

“My son Leo's life was transformed when a five-dollar raffle ticket turned into a brand-new iPad. I'm not exaggerating. Before the iPad, Leo's autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills. People who know Leo are amazed when they see this new boy rocking that iPad. I'm impressed, too, especially when our aggressively food-obsessed boy chooses to play with his iPad rather than eat.”[1]

Benefits: Accessibility and Convenience

No cursor analogy – direct touch screen
Fine motor ease – stylus/mouse not required
Portable
Can replace backpacks – and cupboards -- of activities

Benefits: Cost

Entry level iPad 2 (16 GB Wi-Fi) is $499
Refurbished original iPad 16 GB currently on eBay for ~$300
Other AAC devices (Vantage, etc.) cost several thousand dollars (but iPad may not be best choice, do AAC evaluation)

Benefits: Learning

So much more than an AAC device! (Sometimes an issue)
Screen is big enough to be digital parallel to paper or books
Keyboard and screen are in same space, most kids aren’t touch typists, child doesn’t have to move eyes from screen to keyboard[2]
Apps are organized, accessible, predictable framework
Apps break learning down into discrete chunks, topic areas
Learn without needing to read, including read-aloud books
Learn independently or with support (but always supervised)
Incidental learning opportunities abound

Benefits: Social and Play

iPads are cool, they attract other kids – including siblings
Can support social skills, formally and informally
Independent leisure time: Learning activities, games, videos.

Overuse and Abuse?

What about recent study: “Autistic Kids Obsess Over Screen Technology”? [3]
Autistic adults say “Yes, we’re visual and very focused, why not explore how to harness these traits productively.”
Savvy kids can be experts, help other kids, mentor them.
Makes me laugh, for kids like Leo, for whom independent is good!
Valid concern for kids who crave screen time (so ... Screen Time app, etc.)

When iPads Are Not in Your Budget

Go through insurance, school district – write into IEP

AAC evaluation
SLP recommendation
Research[4] (longitudinal studies are ongoing)

Fundraise: Community/Online – it works!

Free: ChipIn.com, GiveForward.org
Commission: Crowdrise.com

iPad Donation Charities – watch out for scams

HollyRod4Kids, etc.

iPad Protection – Insurance, AppleCare, Loss

All iPads come with 90 days of phone support & one year limited warranty
Insurance (3^rd party): Protects against damage & physical loss
AppleCare: Service, support for technical issues, up to two years
Purchased content loss

iTunes iOS 5 remembers purchases, will let you re-download content (everything except movies)
If something happens to your device, Apple can do a "Full History Regrant" of your iTunes account purchases

iPad Protection – Cases, Covers, Other Accessories

Cases: Protection vs. Convenience

All-Purpose Cases: ZooGue – Strap mounting for in-car movies, carrying, Targus 360° Rotating – sturdy, flexible stand options

o Protective: Otterbox Defender, GumDrop Military, Trident Kraken, Griffin Survivor
CushPad for pillow-like support
iBallz for corners (comes with cases, too)
Bubcap for Home Button

Free Activities

Paperless worksheets shared with DropBox/Photos/DrawFree
Friend/Relatives facial recognition & interaction via Skype (free app)

Apps!

See apps spreadsheet – collaborative effort with an SLP and autistic adult
iPad Resource page: http://www.squidalicious.com/p/on-ipads.html

[1] Rosa, Shannon Des Roches. “The iPad: ANear-Miracle for My Son With Autism.” BlogHer.com. http://www.blogher.com/ipad-nearmiracle-my-son-autism.

[2] Shap, Jacqui. “It was one of those ‘Oh Wow’ Moments.” iPods, iPhones, & iPads in Education. http://ipodsiphonesineducation.wikispaces.com.

[3] http://psychcentral.com/news/2012/01/26/autistic-kids-obsess-over-screen-technology/34118.html

[4] Sistach, Francesc. “Links to Academic Articles.” iAutism. http://www.iautism.info/en/2011/04/09/links-to-academic-papers.

A Case for Your iPad

2012-01-25T22:34:00.000-08:00

A question I hear a lot, especially at iPad workshops, is "what case should I buy for my iPad?" My answer, unsurprisingly, is "it depends."

Do you just need something to make your iPad grippable and/or protect the screen? Do you need it HULK SMASH-proof? Do you want to attach to the back of car seats so kids can watch videos in the car? Do you want it to convert to a stand in both landscape and portrait mode? Do you want it to be gorgeous, and go incognito as a book? Do you want a built-in keyboard? Do you want a soft, pillow-like stand? Here are some of the cases we and our friends use, but your comments and suggestions are welcome.

ALL-PURPOSE CASES

Leo has two cases for his iPad 2. Our favorite is the ZooGue* ($49.99). Leo doesn't need a super-protective case, he needs one that makes the iPad easy to hold and use, so this works for us. The leather case is nice for gripping, it has a fold-over cover to protect the screen, and it uses velcro for stand positioning -- which means that no matter how hard Leo taps the screen, it won't fall over or dislodge. When I took Leo's iPad into a local Apple store, one of the Geniuses declared the ZooGue "the best iPad case I've ever seen!"

Watching Lina Lamont & Don Lockwood

It also has a velcro strap that can be used as a carrying handle, to secure the cover -- and to attach the iPad to the back of a car seat for multiple viewings of favorite videos. We've been watching a lot of Singin' in the Rain, Mali now works "...more than Calvin Coolidge -- put together!" into conversations whenever she can, and Leo loves singing Good Morning.

Caveats: The ZooGue doesn't stand up in portrait mode for reading books or other documents. It also leaves the corners of the iPad exposed, and when Leo accidentally dropped his iPad on its corner on some concrete pavers, the screen shattered. But now that I've regained my composure, I suspect the issue was more the pavers than the cover.

For three months after the iPad shattering incident, I was leery of the ZooGue, so we switched to a Targus 360 ($60 - $65) instead. Also leather, also nice for gripping. With an elastic strap for keeping the cover shut, and which covers the iPad's corners.

It also swivels stand position between portrait and landscape, which is excellent for those of us who like to read documents while our hands are busy. And the Apple logo peephole generally gets a comment or two -- it's a clean, stylish design. It's a good, solid case, one that a speech therapist friend uses with the kids who are her clients.

Caveats: See that pretty blue fuzzy interior padding? I have three kids. Which means that padding got grubby, really quickly -- after a while, I was too embarrassed to take this case to iPad workshops or even out in public. And the leather on the screen frame started peeling off unattractively. And while the stand does switch from landscape to portrait, it rests in a groove rather than being anchored like the ZooGue -- Leo's enthusiastic screen tapping often knocked it over.

PROTECTIVE CASES

But what if you need a substantial case, one that lets its tablet keep up with (and not become a casualty of) the enthusiasm of its owners? There are many options. Bay Area parent Laurel Miranda's daughter has worked her way through several case models, and now uses the Gumdrop Military Edition ($69.95). Laurel says,

"This case rocks, highly recommend it. The buttons are easy to push even though everything (even the screen) is encased in plastic or silicon. It's well designed. The only draw back is that the iPad is now really heavy and doesn't have a stand, but I can live with that!"

The fallback you-can-almost-drive-a-truck-over-it case is the OtterBox Defender ($89), and I know many folks who use it (including Leo's class staff). It's a bit of a PITA to put on and take off, but it does the job, and it is very popular.

Caveats: Can be hard to get on and off, can make iPads clunky or heavy.

BOUTIQUE CASES

DodoCase, closed

San Francisco-based DODOCase ($59.95) makes iPad cases using traditional bookmaking techniques. These cases are gorgeous and widely coveted. When closed, you are toting 'round a lovely, handcrafted, hardbound notebook. When open, folks either oooh and aaah at the clever, hand tooled case, or quietly moan. From the DodoCase site:

"The DODOcase cradles your iPad in a strong, yet eco-friendly bamboo tray. The multifunctional design allows you to use the case as a stand for typing or watching videos. The DODOcase's magnetic insert activates the iPad's auto wake/sleep feature to wake and sleep your iPad instantly."

Leo does not have a DODOcase (this particular, artist edition case belongs to his father).

Caveats: Not for kids (kids like mine, anyhow). And even your best friends will try to steal your DODOcase when you're not looking.

PILLOW(Y) CASES

The CushPad* ($34.95) is a good match for kids who like to use tablets on unstable surfaces like couches, bed, or floors -- though of course my kids are trend-buckers and use it on the counter. It can be used in portrait or landscape mode. It is nice and soft for resting in one's lap. It has a handle for hauling around. And ... it can be used with non-iPad tablets (You're looking at a Motorola Xoom. Blasphemy! The pictures was taken with an iPad, though.) It's nice for using when multiple children are using videos, as the kids are less inclined to be grabby.

Caveats: Your tablet nestles in your CushPad rather than being securely fastened, so if the setup gets knocked about the tablet will fall out. It's big and bulky, so if storage is an issue then storage is an issue. And right now, they're selling so briskly that they're backordered -- so if you want one, I'd get on it.

KEYBOARD CASES

My cousin and my father-in-law both have iPad cases with built-in keyboards like the one available from Brookstone ($74.99). I hate typing on an iPad itself, so if I was using the iPad for productivity or for teaching the kids to type, I'd consider this route before an accessory and therefore easily misplaced keyboard. I was pleasantly surprised by the slimness of these cases -- the keyboard adds almost no thickness.

Caveats: The keyboard needs to be charged separately, which is One More Thing. And these cases generally do not allow portrait mode, which is a bummer for some document modes.

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What iPad/Tablet cases do you uses? If you use any of these, do you have a different opinion?

*The ZooGue and CushPad cases were gifted to Leo by their creators, but that has no bearing on our opinion here.

Pizza Anxiety

2012-01-23T12:11:00.000-08:00

Pizza *&* naan on his birthday. Thx, Zante's!

Remember what a great thing pizza was for Leo? How it took an aeon of therapist-led food chaining to get him to eat it, how then he became such a fan that we we had pizza cake for his 10th birthday?

Unfortunately, Leo now likes pizza so much that he's developed a severe case of Pizza Anxiety. If he knows there's pizza in the house, he can't think of anything else, can't focus on anything else. If he knows there's leftover pizza from dinner, he gets agitated and has a hard time going to sleep. If he knows there's pizza in his lunch box at school, he cannot think or talk about anything else, not until that pizza gets nommed. No amount of visual supports, reassurances, or distractions help -- not at home, not in the classroom.

So, we've banned Wednesday Night pizza for now, which as a routine lover myself makes me fairly sad -- and also sad that this is so hard for our boy.

We can still get pizza in restaurants, at the Costco food court even -- any place the pizza loop opens and closes on site. But we can't have pizza at home, or at school for the time being.

Leo doesn't seem to mind so far, as again it's only when pizza is present that Pizza Anxiety escalates. And we'll try again in a few weeks.

As always, advice or insights appreciated,

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Apologies for being mostly absent, Leo being mostly absent from this site. No more publishing books during the winter holidays for me. (Have you bought your copy of TPGA yet? Check out the fabulous reviews we've been getting! )

SF Locals: Camp Azure Fundraiser Concert Feb 18!

2012-01-22T12:30:00.001-08:00

SATURDAY, FEBRUARY 18 - SILENT MOVIE COMEDY CLASSIC WITH LIVE MUSIC!!

A fun event that can be enjoyed by ages 5 to 100 -- autism and other abilities welcome!

Camp Azure provides children on the Autism Spectrum with an affordable and unforgettable Summer Camp experience through San Francisco Recreation and Parks. Our first session last Summer was a great success! For 4 weeks, 32 kids ages 6 to 12 had a chance to enjoy outdoor fun and to "just be kids" alongside their peers. We had a long waiting list, though, and so we are happy to announce that this coming Summer, Recreation and Parks plans to expand the camp to 8 weeks!

Because of the need for specialized staff, and our strong belief that families with autism should be able to enjoy the exact same affordable summer camp rates as other SF families, we are once again organizing our annual concert to help raise the funds needed to run Camp Azure.

The New Galileo Quartet and Stephen Prutsman on piano will play an original composition Stephen wrote to accompany the screening of a Silent Movie Comedy Classic. So, music and film will be playing simultaneously, and audience participation is strongly encouraged. All ASD kids are also welcome to come and make some noise!

Classical music lovers will appreciate the many tongue-in-cheek musical references in the piece. The performance earned "Best of Festival" at the 2007 Spoleto USA Festival and after a performance this past October at the Barishnikov Center in NYC the New York Times wrote:

"Mr. Prutsman's multistyled facility was given full vent [with] a jazzy, eclectic and inventive score...[the] players and Mr. Prutsman received a heartyovation for their vibrant performance"

WHEN: SATURDAY FEBRUARY 18th 2 PM and 5 PM (2 performaces)

WHERE: Randall Museum Auditorium, San Francisco

TICKETS: $10 kids and $20 adults

To purchase tickets please go to: https://sfpt.ejoinme.org/MyPages/CampAzureBenefit/tabid/337495/Default.aspx

Thirteen

2012-01-16T23:17:00.000-08:00

Iz isn't a tweener any more -- she's thirteen now, she's passed into actual teenhood, and it's mesmerizing. I'm grateful she still respects us, talks with us, and values our opinion, and we try to take care to reciprocate. I'm fascinated by the talented, articulate, increasingly coltish girl we drag out of bed every morning. While I know not all girls her age turn banshee, I also know that I was a bitchy, self-absorbed teenager -- so it's possible things might go south or at least get distant. For now, I'm cherishing every moment.

So here's whats' going on with her.

She's getting a cell phone. Eep. I hope it doesn't lead to much more of this (in fairness, she's reading a book on the Kindle her grandparents gave her for Christmas).

She does still love her science. She rolls her eyes at the thought that someone wouldn't know what "phenotype" meant. When she corrects her little sister on the fact that coral is an animal, not a plant, she is specific: it's a cnidarian, like jellyfish. She read The Immortal Life of Henrietta Lacks three times. She turned to Seymour and me after we took her to a recent Radiolab performance, with a hearfelt "Thank you for bringing me here!," and talked about the show for days afterward.

She's shadowing high schools, as that's where she'll be going in the fall. Since she was in preschool when this blog began*, that is freaky. Really damn freaky.

Soccer. She brings it. She spent a year working hard on her skills, and made it onto a team in the next bracket. (She also skunked some unsuspecting boys at school who challenged her to a match.) Her dad is supporting and encouraging and being a great soccer dad, but the gumption and drive are all hers.

There's still lots and lots of parenting, intense parenting. There's yelling. She and I are both short-tempered. We are also often contrite with each other, because neither of us stays mad once the yelling is over. When she is rotten, I tell her, "You are absolutely under my power, you need to make me want to help you. I don't have to do anything for you." When I am rotten and unfair, she spotlights every inconsistency in my argument or follow-through with courtroom-level accuracy.

She believes in fairness, justice, and consideration. When she is upset by the way some of the kids at her school diss each other, I tell her that debating someone by targeting what they cannot control, like where they live, is a weak-minded coward's approach -- and she takes it to heart. She's got the "Not Acceptable" anti R-word video on tap, and never fails to whip it out. If she thought it would help, I'm sure she'd knock on the door of every Proposition 8 supporter who dares to deny her godfather equal rights. She grumbles and stumbles with etiquette sometimes, but she also knows Hell is for Children who don't write thank you notes.

She's humble. She never told anyone at school about her or Leo being in the Apple video last March.

She's sweet to Leo -- playing Fruit Memory or other games he likes with him on the iPad, showing him new ones, holding his hand whenever he needs it, singing to him, soothing him, taking him seriously. He adores her. She's even sweet to Mali, when Mali allows it. They'll adore each other eventually.

She's her own person. She's been a vegetarian for months, and has never wavered -- probably because she thought about it and read up on it for two years beforehand (she does miss bacon and pork bao). She loves musicals, was a Rubik's cube for Halloween, refuses to cave into my pressure about what to wear or how to cut her hair. She's got good friends, and has somehow made it most of the way through middle school without any of the drama or soul-shattering social games that were supposed to define this part of her life.

She's beautiful. She's amazing. She's thirteen. I want to remember her like this, forever.

*trigger warning: 2004 curebie & dismissive language re: autism.

Happy New Year, Cephalopodistas

2012-01-10T22:16:00.003-08:00

Oh hey look it's the new year! Has been for a while. Erm.

We did make a holiday card. We just didn't get around to sending out many. So I'm posting it here because I suspect we just won't get around to sending most out. Sigh. Road to Hell and all. (For those interested: drawn on an iPad using Zen Brush, then captions and colors added on my laptop via GIMP).

Just how busy have you been? We have been approaching hyperventilation warp 10. We're ramping up on spreading the word about this new autism book you need to buy (and an interview by Laura Shumaker with the TPGA crew that you need to read). Girls had a three-week winter break. Leo's was only two but was the best winter break of his life -- we had the honor of relatives staying with us for nine days and he cruised along beautifully, appreciating all the family time. We spent New Year's Eve foraging for mushrooms in Sonoma and he was happy to hike along and enjoy the stunning magnificence that is Salt Point State Park (with its 5 lbs of shrooms/person limit). He is overjoyed to be back at school.

If you had asked me even three years ago if a mellow winter break would be possible for Leo, I would have laughed at you. Hard. When I wasn't crying over how challenging things were for our then-so-dysregulated boy. Part of it is Leo's own maturation, part of it is the cool new visual schedule system Supervisor M set up for Leo, which allows him to predict and participate not just by time of day (morning, afternoon, evening) but by week. Iz is producing the materials for it and getting paid. A good arrangement.

I know not everyone had a good break; I hope things improve next time, next year. And not all of our break was bells and buttercups. But the hard parts (very few having to do with Leo, mind you) make me so much more grateful for the fabulousness of the rest.

What did you during your winter break, if you had one?

A Very Device-ive Holiday

2011-12-29T02:15:00.001-08:00

Can you identify each of the four different devices our kids are using?

Holidays are blowing the top of my head off. Not necessarily a bad thing, especially as the kids are having a great time and Leo specifically is in a good space. But oh the backlog -- posts on apps, cases, and yes devices in the works. If I can ever find two moments to rub together!

Hope your wintry holidays are very fantastic.

Get Your Loud Hands Out!

2011-12-26T17:42:00.000-08:00

"Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)."

I support the Loud Hands project whole-heartedly, and hope you will too.
More information at TPGA or the Loud Hands Project Page.

Thinking Person's Guide to Autism: A Real Book

2011-12-21T06:42:00.000-08:00

Thinking Person's Guide to Autism is a real book. A real real book.

One you can order right now, and tell all your friends to order right now.

One that can hopefully make a positive difference for people with autism of any age, and their families.

(One that I wish hadn't nearly killed Jen Myers during its production process -- she deserves to be waited on by angels and noble djinni for a few weeks, trust me).

One that I really, really wish I'd had when Leo was first diagnosed with autism, so I could leapfrog all the tangents and charlatans and bad advice and bad teachers and could start out at the beginning of this autism parenting learning curve strong, aware, and hopeful, instead of afraid, confused, and depressed.

One that -- in a move so surreal and wonderful as to near the unimaginable -- cool-as-hell investigative reporter Steve Silberman named his Book of the Year. Book of the Year.

If you had told me Mr. Silberman might write such things years ago when I was reading his seminal, exactly-ten-years-old Wired article The Geek Syndrome, or even eighteen months ago when I discovered he was talking about revisiting and revising that article into a book, I would have scoffed. With annoyance and sincerity.

But then, that was before I had the honor of working with four fantastic TPGA co-editors and fifty-three marvelous TPGA book contributors. I do overuse the term alchemy, but alchemy is what -- and why this -- happened. And we all have our own reasons for contributing to this project. Mine is right here:

Leo having the best time ever at Hayes Valley Playground yesterday

It's rare to find folks from outside the autism communities who not only want to understand why a book like TPGA matters, but who are willing to use a sizable media megaphone to broadcast its message. Thank you, Steve, for caring so damn much and for doing the right thing.

Locals: Support Family Portraits for Underrepresented Families

2011-12-15T12:37:00.000-08:00

Hey locals! A local not-for-profit photographers' collective that commits a portion of their photographic profits to helping underrepresented families capture, preserve, and share their memories is having a free BBQ and holiday family photoshoot at Hoover Park, Redwood City this Saturday December 17 from 11-2pm. They are offering a free professional portrait session and framed ready-to-hang print.

They ask only that folks bring a food item or a $10 raffle item or gift card for the families in need. There will be a videographer on hand filmingthe promo, so please show your support!

Thai Chu from AliveByShooting.com leads the collective and is also a friend of Leo's; here are some wonderful portraits he's taken of Leo; these are the quality of portraits that will be available:

The photographer's collective also "collects and distribute old digital cameras to families through a collaboration with nonprofit agencies in developing nations. Currently, we are working with Islas de Las Hermanas and Peace Corps on the island of Ometepe in Nicaragua. This island of 30,000 is one of the poorest communities in Nicaragua, and none of the families in the communities we work with own cameras or have even seen themselves outside of a mirror. With our digital exchange, when their memory cards are full, their prints are developed in the US, shipped, and distributed free of charge. Please donate your digital cameras, accessories, and bilingual manuals by contacting [Thai]."

What Would You Say to This Misguided Autism Parent?

2011-12-13T20:16:00.000-08:00

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?

My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.

And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

Now, does all this mean that the past nine months of special diets and vitamin supplements and dietary enzymes have been for naught? Hell no.

I firmly believe that autism arises from multiple causes: hard-wired genes, the environment (including lead poisoning), vaccines, and/or diet. But, as of today, there is no way to quickly pinpoint how a child became autistic. One of the only things a parent can do, can control, is dietary trial and error.

Hence the elimination diet. It was and remains complicated, but it is in no way harmful to him. Not a bit. As in, there was no harm in trying it, and now we may get to be fairly certain that diet is not a factor in his case.

In addition, his GI tract had been seriously messed up by round after round after round after round of antibiotics--the poor boy had non-stop squirts. Putting him on a bland diet has given his little innards the resting period they needed to rebuild themselves. They seem to be able to do their job just fine these days, although they are still getting a little assistance from probiotics (heartily endorsed by his mainstream pediatrician, BTW).

Many autism professionals, particularly those in the ABA field, are skeptical when it comes to elimination diets. Some are outright hostile, and will make concerted efforts to dissuade parents from trying dietary approaches. Fuck them. They're not the parents. They don't have to live with the child; they won't be there in ten years.

Again, there is no harm in trying an elimination diet, other than inconvenience on the parents' part (note that inconvenience does not equal impossibility). For some children, this diet makes an incredible difference. For others, not a whit. But wouldn't you rather know?

Ways to get started:
Read Karyn Seroussi's Unraveling the Mystery of Autism...
Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.

Read Lisa Lewis's Special Diets for Special Kids
Causation, theories, recipes.

Find Yourself a Good DAN Doctor
Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.

...

...

...

Well?

Now here's the thing. I wrote this post. Seven and a half years ago. One year after Leo's diagnosis. Because I was misguided. Because I listened to the wrong people (e.g., see list above). Because those people were the loudest voices in the autism parent community. Because good information wasn't available. Because a book like our new Thinking Person's Guide to Autism wasn't available.

But ... our book will be available, in just a few days. We hope it will make a difference to anyone new autism. We appreciate your patience, and hope you will help spread the word about our book, and why it's so important. Thank you.

Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

2011-12-07T11:23:00.000-08:00

When I hear about yet another dangerously misinformed autism parent killing their child because of autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear the thought of having a child like my bubbly, affectionate, exuberant Leo? In which fears about the challenges and expense of caring for an autistic child snowball into murder? In which people are so unaware of the vibrant diversity of Autistic adult experiences that they view the possibility of life-long dependence -- which may very well be my son's future, and which does not exclude a fulfilling, happy, and social life -- with soul-destroying horror? In which autism is declared the catalyst for a mentally ill mother's unforgivable act?

The answer is that we live in a world where autism negativity and fear mongering are rampant, and I blame the media. Squarely. The Internet overflows with positive, respectful autism examples and role models that in no way downplay the difficulties that can come with being Autistic, but acceptance and even pluck don't grab eyeballs the way that tragedy does. This needs to change. The stakes are too high; we need balance in media portrayals of the autism experience.

I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.

Countering negative autism attitudes and the pervasive media influence that shapes them has been a driving force behind Thinking Person's Guide to Autism. Providing positive role modeling and information is one of the primary reasons our project exists. And, as successful as the website and Facebook communities are, this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week). I really, truly hope our book will make a difference.

Information is power. We need to use our own power -- our social media voices -- to get out better autism information, and influence the media towards balanced autism portrayals. I hope you'll help spread the word about TPGA, ASAN, and other adamant autism advocacy orgs. If you're on Twitter or Facebook, please take the time to make a public statement of Autism Pride or #AutismPride. Your message might make all the difference to a desperate autism-fearing parent like Stephanie Rochester.

Leo at age two, around the time of his provisional autism diagnosis, and 100% adorable.

Please also read Emily Willingham's post Autism is not the monster. Postpartum depression is, and it has some help.

Launching now: MyAutismTeam & ASF's Recipe4Hope

2011-12-06T12:10:00.001-08:00

Two autism efforts worth your eyeballs (and one that I hope will open your wallet), with a caveat coda:

MyAutismTeam

We've needed an autism social network/Yelp! hybrid like MyAutismTeam (www.MyAutismTeam.com) for just about ever. So I'm pleased that it's finally here:

From the press release: MyHealthTeams today announced the launch of MyAutismTeam, its flagship social network for parents of children on the autism spectrum. MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.

I encourage you to explore the site, and then send the team feedback about your experience as well as what you'd like to see in the future.

Autism Science Foundation's Recipe4Hope

I admire the Autism Science Foundation's dedication to and streamlined effectivenes in "funding outstanding science," so I encourage you to participate in their December fundraising drive, Recipe4Hope:

It takes lots of snow, and some helping hands, to build a snowman. It also takes all of us, working together, to support the research needed to understand autism.
Your donation to the Autism Science Foundation, combined with those from families around the world, will snowball into lasting hope for children, teens and adults with autism.

Every dollar you give to ASF’s Recipe4Hope campaign goes directly to fund pre- and post-doctoral autism research fellowships to encourage the brightest young scientists to devote their careers to autism research.

By donating you are fueling scientists’ discoveries into the causes and treatments of autism. You are giving parents and teachers new ways to change the lives of children, teens and adults with autism. Through a gift to ASF, together, we are mixing up a recipe for hope.

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I think both of these efforts have the potential to benefit Autistics and their families. And I would also like to see each of these agencies include Autistics (plural) on their boards or in official advisory capacities. Autistics have autism insights and investments that even parents, partners, or family members couldn't possibly share, and the range of those autism experiences cannot be represented by a single Autistic individual.

These organizations have power and influence and the ability to shape future policy, attitudes, and opportunities for Autistics and their community -- and so could only benefit from heeding the self-advocate mantra "Nothing about us without us."

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Disclosures: I have consulted with MyAutismTeam on two occasions, and have been the recipient of an IMFAR travel grant from the Autism Science Foundation.

A Critical Flu Season Q&A

2011-12-05T01:37:00.000-08:00

December 4 - 10 is National Influenza Vaccination Week. I was asked to participate in a conference call hosted by Every Child by Two (www.ecbt.org) and Families Fighting Flu (www.familiesfightingflu.org), to help spread the word about correct and helpful flu vaccine information. The call featured:

Dr. William Schaffner, a renowned flu expert and Chairman of the Department of Preventive Medicine from Vanderbilt University School of Medicine and current president of the National Foundation for Infectious Diseases; and
Jennifer Lastinger, a mother of four who lost her young daughter to the flu and who as a results is now a founding member of Families Fighting Flu and a passionate advocate for flu vaccination.

Both Ms. Lastinger and Dr. Schaffner spoke at length -- Dr. Scaffner about the most current information and recommendations for flu vaccines, and Ms. Lastinger courageously shared the story of losing her perfectly healthy daughter to influenza. I will be reporting on that section of the call at BlogHer. But the call also featured a lengthy Q&A, in which I and several other participants were able to query Ms. Lastinger and Dr. Schaffner directly, and that is what follows -- absolutely critical reading for anyone concerned about keeping their children and themselves healthy.

A thread that ran through the Q&A was how to counter the harm caused by vaccine opponents and misinformation. Jennifer Lastinger's response was impassioned:

I get very frustrated with a lot of the arguments [against vaccination]. The bottom argument is, do you want your your children alive? YES!

I fully believe vaccination would have kept my daughter here with me, so that's as simple as I can get.

Here is the remainder of the Q&A:

Shannon Rosa: Who cannot receive the flu vaccine?

Dr. Shaffner: There are some people who cannot be vaccinated or who respond poorly to vaccines, but really the only group in which flu vaccines are medically contraindicated is those with a genuine allergy to eggs. But even that group has been narrowed down to only those who really cannot eat eggs at all. Beyond that, as we get older -- here's the paradox -- senior citizens are the ones who tend to get the most complications, but because their immune systems aren't as robust as they used to be, and they also tend to not respond to immunizations as well as younger people. So they clearly should be vaccinated -- but all of us who have contact with them should also be vaccinated.

And then of course there younger persons who for reasons of immunodeficiency or because they're taking immune-suppressing medication do not respond to the vaccines as strongly either -- and therefore everyone who has contact with them needs to get immunized for influenza, that important "cocoon" of protection.

Trish Parnell from www.PKids.org: There were some recent official concerns regarding the intradermal flu vaccine injection, can you tell us what happened?

Dr. Schaffner: The FDA discovered that some pharmacies were using the intradermal "jet" injector with the regular flu vaccine -- and that combination is not licensed, it hasn't been tested. So in the interests of being overly cautious, they recommended that people get re-immunized. But after more thought they realized that re-immunization wasn't necessary.

Vincent Iannelli, Pediatrics.About.Com: In my area of Texas, half the pulmonologists say it's OK to use the FluMist [nasal spray] vaccine in kids with stable asthma, and the other half say it's not OK.

Dr. Schaffner: The FDA and the CDC recommend that it not be used in children with asthma because in rare occasions it can provoke a broncho-spastic response. I do know that very astute pediatric pulmonologists will use the FluMist vaccine in children whose conditions are very stable.

So then the question is, why would these doctors be more interested in using the FluMist version of the influenza vaccine in children? The answer is that for the A strains of influenza, the nasal spray provides more immunity than the injectable vaccines, and it's also a little bit broader, more likely to provide protection against those mutant variations of the flu. Though that's not a big issue so far this year.

Dr. Iannelli: We're also seeing some parents who are skeptical of the FluMist vaccine because they say it's a live virus vaccine -- though my kids all got FluMist because they don't like shots.

Dr. Schaffner: The pediatricians in our area are definitely moving to FluMist because it's quicker and easier to administer in a busy office practice, and also because the kids seem to like it better than the inoculation.

The live virus in FluMist is a live attenuated strain. So it's been tamed in the lab to be what's called "cold sensitive." What that means is that if we take the temperature of any of us at the back of our nasopharynx, it's a degree and a half cooler than it is in our lungs -- unsurprising as our nose and throat are exposed to air. The virus can only multiply at that cooler temperature; it cannot multiply in our lungs or cause any mischief there. It may cause, just for a day or two, a little bit of a scratchy throat, and in some people a little bit of nasal discharge. But that's it. It cannot cause influenza.

Ashley Shelby with the Moms Who Vax blog momswhovax.blogspot.com: I've been hearing from parents who have had nurses or physician's assistants wait until the pediatrician leaves the room, and then discourage them from getting the flu vaccine. Have you heard about this, are there safeguards in place, and what can parents do about it?

Dr. Schaffner: I'm not shocked, because within medical centers all around the country -- as we try to persuade everyone who works in such places to be vaccinated -- it paradoxically turns out that our nurses are the group most wary of immunization. Also the myth that you can get flu from the flu vaccine is most common among nurses. And their opinion is often extremely persuasive. So we're working hard not just to persuade them to get immunized but to become immunization advocates.

If you encounter nurses who have misinformation about vaccines, I would say to parents: be adamant! Insist on vaccination. If you have trouble, ask for the doctor.

Lara Zibner, pediatric emergency specialist, Author of If Your Kid Eats This Book, Everything Will Still Be Okay, writer for Parenting Magazine: Are there currently any reimbursement issues with the flu vaccine?

Dr. Schaffner: There aren't any problems with insurance and flu vaccines in the U.S. When it comes to influenza vaccines, it's difficult to find a child who isn't covered either by their private insurance, or by Vaccines for Children, which provides no-cost immunizations for children whose families are not able to pay for them. Also pharmacies like Walgreens often have programs that offer free vaccines to people in underserved communities.

Melody from Nurses Who Vaccinate (www.facebook.com/NursesWhoVaccinate): What is the best point in pregnancy for expectant mothers to receive the influenza vaccine, to allow for optimal results for both the mother and the unborn child, and create the most prolonged protection?

Dr. Schaffner: At any time during pregnancy. Initially when the AICP -- the Advisory Committee on Immunization Practices -- recommended second and third trimester only, but then a few years later along with their colleagues in ACOG, the American College of Obstetricians and Gynecologists, they reevaluated it and said that when you're pregnant and in the doctor's office is the time to do it.

Natasha Burgert: Private Pediatrician in Kansas City, blogger at kckidsdoc.com: I have a very Internet-savvy patient population who keep bringing to my attention a recent Lancet article from late October with the claim that the influenza vaccine may not be as protective as we thought it was. That was not my interpretation after reading the paper myself, but I'm wondering if you're familiar with the paper and what your comments would be.

Dr. Schaffner: What they did in a very rigorous way is summarize what we already knew. The influenza vaccine has limitations. I like to say that it's a good vaccine, it's not a great vaccine -- in the sense that if the influenza virus changes, we haven't matched it up exactly. Also, there are individuals in our society who don't respond optimally to influenza vaccines. We need a new one, a better one. The lights are definitely on in the research labs at night as people are trying to provide a better vaccine. Some of the innovations -- the intradermal vaccine, the high-dose vaccine that's now available for people age 65 and older -- are products of that research, as is the nasal spray variant.

There are adjuvanted vaccines that are licensed in Europe but not the U.S., and there are many people working on the Holy Grail of vaccines -- the universal flu vaccine that would allow us to get our flu shots like we do our tetanus shots -- once every ten years. The director of the NIH hopes there will be one ready for testing in 2014.

Until that happens, we need to use our "good" vaccine to its best advantage. It will protect many people against illness, it will protect against complications of pneumonia and hospitalization, and it will protect against deaths. It can't protect against all of them, but protecting against some of those things is the current good, while we hope and wait for perfection down the road.

Shannon (again): I keep up on anti-vaccine literature, and one myth I keep seeing is that of "virus shedding," of people who get vaccinated for the flu then infecting other people.

Dr. Schaffner: If you get any of the injectable vaccines, not only is it a killed vaccine but it is broken up into tiny little pieces and can't reassemble, so it can't become a new virus in your body and you can't shed it. The nasal spray vaccine is a live attenuated vaccine, but it just goes in your nose and the studies show that it is not spread to any people roundabout, so you don't have to worry about that either.

Christine Vara, Shot of Prevention: The universal influenza vaccination recommendations have been in effect for two years, what has the uptake been like?

Dr. Schaffner: We now have a universal recommendation that everyone who comes to a clinic, hospital, pharmacy; everyone should be vaccinated -- not just to keep themselves healthy, but so they don't transmit the virus to others. The more people we get vaccinated, the more likely it is that we will reduce transmission in and protect our communities.

Amy Pisani from Every Child by Two: We hear a lot about the safety of influenza and people questioning that because it's new every year. I wonder if you could talk a little bit about how the basic strain of the vaccine has already been tested and has such a long profile, and how they achieve such a quick turnaround time each year.

Dr. Schaffner: The influenza vaccine is the most used vaccine, it's given in the millions upon millions around the world every year; the CDC monitors its safety like a hawk. It's an extraordinarily safe vaccine. The FDA, although it licenses a new variant of the vaccine every year, has all the safety history of the basic construct of the vaccine in mind. This year in the U.S. we will give more than 120 million doses of the vaccine, the safey profile does not change -- it continues to be extraordinarily safe.

Amy Pisani: To clarify for a prior question: You said that some people don't respond optimally to the flu vacine. You're not talking about a reaction, but rather than they don't realize their body is not building up the antibodies, correct?

Dr. Schaffner: Correct. Some people's bodies are not capable of responding and creating those antibodies that will protect them against influenza. They're too frail, or they are immunodeficient, or they are taking immune suppressant medications that prevents their body from responding optimally, from creating the prevention that the vaccine is designed to produce.

And as lay people we use the word "flu" rather casually, a lot of people mistakenly think a bad cold is the flu. But when you get influenza, and you've had the vaccine, your illness will be milder, and you're less likely to have complications like pneumonia, hospitalization, or death.

Christine Vara: Jen, could you elaborate on Emily's Law?

Jennifer Lastinger: My husband Joe was really passionate about getting the word out [about the real-world consequences of not getting vaccinated for vaccine-preventable disease], especially through schools -- we felt the schools were the key to getting kids vaccinated. We worked with a local senator who helped us pass the law a couple of years ago, and now school websites in Texas have to post information during flu season about the flu, how to prevent it, where to get shots, and how to keep your kids healthy.

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In case you are unfamiliar with how dramatically misinformed vaccine opponents are and why ongoing efforts to communicate helpful, correct vaccine information are so necessary, consider the excerpts from the Up Your Nose post by AoA's Cathy Jameson:

"...we were recently exposed to some kids who had received the Flumist [sic] vaccine. Hours and hours and hours of contact, play time, meal time and chit chat occurred before I found out those children opted to have the live flu virus jammed up their nostrils earlier in the day."
"…when people get live virus vaccinations but then don’t quarantine themselves while the live virus sheds, other people are at risk."
"...Three days later my five-year old came down with her flu-like symptoms. She was the third to get pummeled getting hit hard with the aches, chills and a very high fever. Coming home from school very distraught that day, she told me that a classmate of hers missed the morning portion of school to get his flu shot. In the throes of her high fever she burst into tears, “Mommy, why’d they go and do that?” My typical son listened to this sad story and announced through his horrible wheezing and coughing, “I wish the flu shot had never been invented.”"

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Additional Flu information resources:

Every Child By Two’s Vaccinate Your Baby website (seasonal flu web pages):
http://www.vaccinateyourbaby.org/about/flu-vaccines/index.cfm
The Vaccinate Your Baby site lists other Every Child By Two suggested influenza resources:
http://www.vaccinateyourbaby.org/about/flu-vaccines/more-resources.cfm
www.flu.gov
www.flu.gov/individualfamily/vaccination/locator.html
http://www2c.cdc.gov/ecards/index.asp?category=175
www.familiesfightingflu.org
www.preventchildhoodinfluenza.org

Goodbye National Adoption Month

2011-11-30T22:51:00.001-08:00

National Adoption Month is over in less than an hour. I'm mostly thinking "sayonara!"

I don't write much about the young man I gave up for adoption 21 years ago, because there's not much to write. His once-open Facebook page is practically shuttered. He has almost no Internet presence, which is downright odd in this era of social media as collegiate oxygen. These things make me suspect he's either:

Unaware that he's adopted and a techno-contrarian like his smart phone-rejecting biological mother, or
Very aware that he's adopted, possibly aware of me even -- but skeeved by my fitful biomom blogging and so staying offline and away from my Google-y clutches.

The first is not that unlikely. His blondie-blonde non-Mexican aunt was adopted into his dark-skinned dark-haired Mexican family and never told she came from elsewhere -- she was loved, they are a tightly knit extended family, that's not the way they do things, it didn't matter. The young man himself is a ginger, he is well-loved by and adores his family -- and as I've written before, I have no wish to disrupt that scenario, distasteful as non-disclosure of adoption might be to me personally.

And if it's the second? Sigh. I just ... am sad he's missing out on knowing us. All the signs say he'd like our family. He is a devotee of Star Trek: TNG and a slightly humorless geek like me, he is an intense history-loving academic like my eldest brother (the one info point I've been able to find lately is that he's Phi Beta Kappa), he has my mom's and second brother's flaming hair. I grew up with lots of cousins and adore them all, I married into a large Portuguese family and adore them all -- more family to love and to love a person back is only a good thing, in my book. But, he's not reaching out like most adopted people his age do, according to BlogHer, and that makes me think the connection is increasingly unlikely to happen.

At this point, all I really want to know is whether or not he knows he's adopted, but there's no way to find that out that's not creepy or potentially disruptive.

So I guess there's really only one thing left for me to do, and then I'll have done everything I can: Tell Mali she has an older half-brother, as I told Iz six years ago. I'm not looking forward to it. Mali is a really -- really -- different girl than her older sister, so I will definitely discuss it with Seymour and may even enlist a professional family counselor for advice before having That Talk. Iz is sweet and sensitive, but she's an intellectualizer, she understands the logic behind an unprepared young woman giving up a child for adoption. Mali, whip-smart as she is, is all heart -- she's only going to hear that she has a big brother whom she cannot and may not ever meet. It's going to require finesse, that chat.

As always, opinions and advice welcome. I'll leave you with the video I'd so like to share with him.

NY Times Autism Apps Spreadsheet Article Link Love

2011-11-29T10:22:00.001-08:00

Leo playing Ruckus Media's
Spot the Dot iPad app.

Today's NY Times features a helpful piece from Pradnya Joshi on finding apps for people with autism. It includes a great picture of Leo, plus a link to the Apps for Autism recommendations spreadsheet I maintain with Jordan Sadler, SLP and Corina Becker.

Unfortunately, the article's link to the spreadsheet is broken (it's missing the "l" at the end of "html"). The correct link is: http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html

UPDATE: The link is now fixed. Hurrah!

It's a good article, worth your time. And as always, I do welcome app recommendations so we can keep that spreadsheet timely and relevant.

Three Sweet Spot Kids' App Suites

2011-11-29T00:56:00.000-08:00

We've entered the sweet spot era of iPad/tablet app development: the marketplace is officially full of robust, well-designed, extremely fun and educational and ... affordably-priced app suites.

I recently came across three such apps: Go Go Kiddo, Alien Buddies, and Bugs and Buttons. These apps are chock-full of activities, not just dedicated to a single function (not that there's anything wrong with a dedicated app). Their design is professional, devoid of the "anyone with a good idea can do this" feel that characterized so many first-wave (though still useful) iPad apps. They're teaching your child stuff while said moppet is entertained (not that there's anything wrong with pure play). All three are meeting with resounding approval from both my just-eleven son with autism and his just-seven sister. And not a one costs more than $2.99.

Bonus question: What's really different about this picture?

Go Go Kiddo ($1.99) is a brand-new app from a team that has obviously invested much time observing the apps kids like to play, and using that information to create "Vitamin Fortified Fun." They did a great job; in fact I think every one of Go Go Kiddo's activities could be a stand alone app.

Go Go Kiddo main screen

I was initially worried about Go Go Kiddo having a complicated main interface graphic, but I needn't have fretted. Each activity's icon has a representative graphic, and Leo is both a visual guy and an explorer, so once he learned which picture went with which icon, he was set. And Leo is a doer -- he wants to jump into the fun right away -- so even though I appreciated the demo mode that opens each activity, Leo appreciated being able to turn off the activity demos with a tap.

Leo's favorite activity is Letter Launch, which combines iWriteWords-like letter tracing practice with Angry Birds-style-enabled spelling. First you trace the a letter:

Then you use that letter's character to "pop" the bubbles confining the other letters needed to spell a word. Those familiar with similar launch games will be unsurprised that my kids find this game addictive.

Leo is always, always going to be happy with a music activity like Go Go Kiddo's Creative Keys. Always. He's going to be extra-happy with a keyboard activity that uses several different sound functions (piano, violin, silly sounds, animal sounds), a teaching mode, and a recording option that sets the Go Go Kiddo characters dancing to his original compositions.

The Creative Keys primary mode

Another favorite Go Go Kiddo activity is Trace and Race, which helps learn to write, identify, and differentiate between numbers. And helped distract and soothe our boy when he was trapped in a restaurant booth at Disneyland while giant furry creatures roamed the place, seeking victims to hug. Leo was wily; he avoided eye contact and was not accosted once.

Leo playing Trace & Race during an overwhelming breakfast
at Disneyland's Storytellers Cafe.

Alien Buddies ($1.99) is a good silly fun app released just today! Its primary activity choice screen is uncluttered, which Leo found helpful:

But each activity has many, many intra-activity choices and variations with both visual and written cues -- and then reading or listening options for each of those. Again, easy for Leo to navigate. Here is the Matching options screen:

You can match the Aliens' belly cards to the item on the pod in the visual version, and the belly cards to the pod's spoken word in the Listening version. So far Leo has stuck to the visual version, but I'm anxious to test him on the Listening version as matching has always been one of his strengths.

The Dot to Dot activity is cleanly designed, as you can see -- and Leo likes a solid, easy-to-follow dot to dot activity. He is less a fan of the open-ended sticker activity, but that is where his little sister goes overboard. No activities go wasted in this house.

Bugs and Buttons ($2.99) deserves kudos for its variety and flexibility, and the thoughtfulness of every aspect of its design. This app has eighteen activities, and a Stamp Collection option. The Bugs in the word 'Bugs' below? They're interactive (that's what Leo is playing with in the top photo above). And the only app company I've known to take such care with its background music -- which in B&B's case ranges from classical to Klezmer -- is TocaBoca.

The one irksome feature is the initial interface (below) -- one has to be literate to access it properly, because there's no visual cue as to which word leads where. Not helpful for wee kids or pre-literate folk. But that's a small quibble, and it didn't take very visual Leo long to figure out that the "ex ---" word leads to three full pages of activities options.

One of the three screens of activity choices. All the activities are lots, lots, lots of fun; every one we've tried so far has been appropriate for Leo:

Button sorting: Matching. YEAH! This starts out easy and facilitated (see hand icon below) and gets harder with mastery - more buttons, more matching, more mastery opportunities. Leo's awesome at this activity, as you probably guessed.

A similar, but not purely visual and so slightly more challenging (and IMHO so much more beautiful) Bugs and Buttons activity is Firefly Sky, which lets deprived West Coast kids like Leo who have never actually experienced fireflies play with them, and collect those that match the color word on the jar (so far the words have been congruent with respect to color, though it would be interesting to see how Leo would react if that wasn't the case, as he can read most color words).

This app has so many options, I know Leo will be exploring it for a good long while -- which I'm glad about, as he tends to get into ruts with the apps he likes and play them over and over again. But when he finds a new app, a good app, a useful app and an app with so many exploration opportunities, he's got a mission, he's got something to do. And while I keep tabs on him to make sure he's using the app correctly and making the most of its options, with Bugs and Buttons -- heck, with all three of these apps -- I know he's going to be busy, engaged, and entertained for a good, happy long while.

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*Disclosure: I was sent pre-release copies of Go Go Kiddo and Alien Buddies. I purchased Bugs and Buttons. But, as always, I only write about (and add to our apps spreadsheet) apps that impress me. All prices listed are accurate as of this post's timestamp.

Leo's Disneyland Trip, Expanded Photo Version

2011-11-28T11:25:00.001-08:00

I wrote up Leo's (and Mali's) wonderful birthday Disneyland adventure over at BlogHer. Here's the opener:

Look, I grew up in Anaheim. Disneyland's fireworks exploded over our house every summer night, and I played Dopey the Dwarf in the Main Street Electrical Parade. I couldn't be more blasé about the house of Mouse, so if you told me that my former workplace would one day make me happy enough to cry, I'd have scoffed. But crying with happiness is exactly what happened during my autistic son Leo's birthday trip to Disneyland -- he had two full days of pure joy that melted my cold, hard, meh-filled heart. For my son, it really was a Magic Kingdom.

The reaction has been very positive so, far, which I appreciate -- and I'm glad that folks are taking the same approach to the article I'm trying to, which is to focus on all the goodness that happened and not on the ten minutes of ohmygodwelostLeoF***F***F*** sheer terror. Good opportunity for Mali to learn about appropriate timing for extreme cursing, I suppose. Though Disneyland is ON the lost kids detail, let me assure you. If you're going to lose a kid who is unlikely to tell a stranger his name, that is the place to do it.

Some photos of the extreme fun, different photos than the Disneyland ones:

How that extreme fun happened: Our Guest Assistance card that allowed us to bypass most lines. Seriously, folks - if you or your child can't tolerate lines, this pass is invaluable. (The Disneyland folks recommend bringing a doctor's note, btw.):

Another thing to not go without: another adult. So grateful to my mom (and my little brother, the second day) for coming along, as Seymour and Iz stayed home for a soccer tournament:

Splash Mountain! Mali was completely, 100% terrified and screaming the entire ride, then declared it her favorite ride ever the next morning:

Spinning rides: Nirvana for our sensory seeker! This is the Ladybug ride in California Adventure:

Was it really Mickey Mouse? Really? My brother just missed Leo grabbing that big black nose:

What I suspect It's a Small World might have seemed like to Leo. Though I hope not. He seemed cool with it.

Leo rejected taking a photo with Pluto, much preferring the sensory experience of rolling this giant marble boulder around:

Blurry, but I like it:

And because this video just can't get enough play: Leo going from contentedness to outright glee on that Bug's Life ladybug ride:

I hope each and every person who attempts a Disney trip experiences as least part of the happiness Leo did!

Happy 7th Birthday Mali!

2011-11-26T09:00:00.001-08:00

Mali with the "Spy Club" version
map of her school.

Happiest of seventh birthdays to our little firecracker. We are going to do our best to make the world ready for you while teaching you the art of selective compromise -- because it would be a tragedy if you let anyone convince you that your original, exuberant, creative, occasionally frighteningly cunning fabulousness is anything other than intrinsic and so very much the right way to be.

(The forgery, fondness for recruiting minions, and other black-hat path tendencies, though, we'll be watching and carefully redirecting those.)

But for today, enjoy the lobster dinner and chocolate cake you requested, along with our eternal love. You are simply wonderful.

Reading comics while rowing her boat

Foraging mushrooms. Of course.

Xoom Giveaway on TPGA!

2011-11-25T00:34:00.000-08:00

The good folks at Motorola sent me a Xoom tablet to give away. No hidden agenda, no stipulations -- they had simply heard how tablet computers can help people with autism, and they wanted to get two of their devices to people in the autism communities -- one to Leo, and one to a blog reader. A blog reader who could be you! Which would be an excellent way to start out the holiday season, eh? It certainly was for us (the Xoom, it is hella cool and Leo loves it, too).

The giveaway is happening on Thinking Person's Guide to Autism, starting now, and ends on Saturday 11/26 at 11:59 PM. If you live in North America and would like a chance to win a very cool tablet device, head on over.

Leo + Disneyland = True Love!

2011-11-22T05:58:00.000-08:00

Leo loved loved loved Disneyland. Loved. Like nothing I've ever seen him love before. So happy for him. Pictures, video, and full explanation/details coming. But. OMG. I couldn't have imagined this trip working out as well as it did.

Magic Kingdom-Bound

2011-11-16T04:44:00.000-08:00

We're off to see the mouse tomorrow morning. Me, Mali, and Leo; for both of their birthdays. We're doing this instead of parties. Because I'm too tired to organize parties, and this is an very acceptable tradeoff to them -- or definitely for Mali and I hope for Leo.

It's been seven years since Leo visited his mother's homeland, the place where I used to drive the Electrical Parade's mine cart as Dopey the Dwarf. This is Leo on that last visit, in 2004, mesmerized by the Playhouse Disney show featuring Bear in the Big Blue House. (And 100% being his dad's mini-me.)

I've had a lot of good advice about taking kids with autism to Disneyland, about making sure we get that guest pass at City Hall. We're also staying onsite at the Grand Californian so we can retreat at any time, should Leo want to. (My mom is generously accompanying us so that Mali and her cousin Christy can stay in the park, should that happen.) And of course we have a Stories2Learn iPad social story about our trip.

But -- if you've been, and you've had a successful trip or just learned some interesting lessons about the Magic Kingdom, can you share your story? Not just for us, but also because I'll be writing up a post on this trip for BlogHer? I'd really appreciate some insights on what to expect, realistically. Thanks!

When Advocacy Means Taking It On the Chin

2011-11-15T10:01:00.001-08:00

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

To Bloody Hell, and Beyond!

2011-11-14T11:52:00.001-08:00

Leo's shirt soaking in the sink upon returning from the ER.

Here's what I re-learned this weekend: Head wounds bleed a lot. I just wish Leo wasn't the reason for the field medicine refresher, even though his bonk ended up being too minor for stitches, and even though he has been fine ever since.

Our boy was engaging in a bit of pre-bedtime wild rumpus, and tripped and hit his head just behind the hairline, on a brass door hinge. It was an instant gusher, so much so that between the blood and the curls we couldn't see how big the cut itself actually was. Seymour had a dishtowel on Leo's noggin in an instant, which Leo unfortunately found even more distressing than the injury itself. As we then needed both a driver and a staunching assistant, the entire family abandoned our chicken dinner and rushed out the door to the hospital.

The ER visit was routine and uneventful. ER staff tends towards dry humor (my mom was an ER nurse for almost 30 years), so it was not surprising when the front desk greeting our blood-drenched boy with a matter-of-fact "Well, that doesn't look good," and marched him off to Triage. After that, Leo was mostly happy to watch videos on his iDevice, and get hugs and kisses when he remembered that he was injured and in a hospital. After a while, he even crawled onto a bed and asked for a blanket (it was his bed time, after all).

Once the medics were able to wash the blood out of Leo's hair and see the wound itself, it turned out to be a lentil-sized divot. No need for interventions besides a dollop of Polysporin. The attending doctor managed not to roll his eyes, but was obviously unimpressed -- sending us out the door with a reminder to keep it clean and that, yes, head wounds sure do bleed a lot.

Seymour and the girls mostly stayed in the waiting room while Leo and I were in the exam room. Apparently a local Sheriff was waiting as well, which gave Mali the opportunity to whip out her best Dale Carnegie routine:

Sheriff: "Aren't you cute! I like your boots."
Mali: "Thanks! I like your gun!
Sheriff: "Uh, thanks..."
Mali: (Does finger guns) "Bang! So, are those your bullets?" (Points to his impressive sets of rounds)
Sheriff: "Uh ... yes they are ..."
Mali: "So, what are those plastic things they're in called?"
Sheriff: "Um, they're called magazines..."
Mali: "So, why are you here?"
Sheriff: "Well, I'm waiting for my friend Charlie to get fixed up from a car accident..."
Mali: ...told the sheriff about Leo and his bonk, chattering until until the sheriff edged away.

In her defense, Seymour says it was a very big and very shiny gun. Plus this is a girl who heckled Demetri Martin in front of 2000 Radiolab fans -- social confidence is not an issue. Social finesse, that is something else (and this is the moment at which I implore you to check out today's TPGA interview with Flummox and Friends creator Christa Dahlstrom and support social smarts programming for quirky kids like all three of mine!).

We went home. I soaked Leo's shirt in cold water (see above), which meant the blood washed out easily and his favorite shirt survived the incident as easily as its owner. We scrubbed those kids that needed scrubbing assistance and tossed them into bed and gave thanks for the conveniences of our life -- like insurance and ER proximity -- that made the whole incident so much less stressful than it could have been.

Leo was fine the next morning, except for occasionally asking for more kisses on the bonk spot. We spent the morning at the Palo Alto Junior Museum and Zoo's Super Family Sunday, an annual event during which they open the facility just for families of people with special needs. What a soothing, happy, stress-free event -- can't imagine a better way to follow up the previous evening's excitement (and I love to see museums and zoos and other orgs do this for our community).

Whew. We're such a lucky family.

Non-bloody Leo loving the PAJMZ's new climbing web.

This One Goes to Eleven!

2011-11-09T11:24:00.003-08:00

Happy Birthday, most wonderful sweet lovely impish boy ever.

89.42%

2011-11-07T11:15:00.004-08:00

Iz wants a cell phone. Desperately. Her lobbying reached a fever pitch one year ago, and irked even her usually unflappable dad. So we struck a deal: She both stops perseverating on the topic and hits a certain grade plateau for three trimesters in a row, she gets a phone.

She stopped the daily campaigning. She also hit the marks easily for the first two grade cycles. But this Friday, when the third cycle's grades came in, she missed the bar in one class: her hardest, the one she likes the most. By .58%.

She earned a 89.42 B+.

She's not getting the phone.

Because that's the way the world works. Sometimes you fail, despite putting in your all and doing your best. And, you can't argue with math. It's a lesson kids needs to learn, in a way that really sticks. When they're young. Before they get to high school, college, the work force -- before they start believing they can negotiate anything, before they start dealing with people who are not their parents.

This lesson is sticking.

I completely empathize with Iz wanting a phone -- most of her friends have them, and they text each other all the time. She's out of some social loops, and that sucks. But I also see some of her friends treat their expensive devices casually, losing or breaking them without much concern. And Iz is like her mom -- she spends much of her life in her head, untethered to the material world, which means we both misplace important stuff due to inattention. She needs to understand that having a phone is a huge responsibility, a big cash-intensive deal, and one that requires constant locational awareness. These points can't be emphasized strongly enough.

And she will get a phone on her thirteenth birthday, which is in two months. That's been a given since she was wee, since she first started making noises about apps and texting. I think a phone is a good idea, given that she'll be in high school next year, and her activities and independence will only ramp up.

But two months is an eon, from her perspective. She's really bummed. I don't blame her, and told her so.

She handled the missed mark with good grace, though she was initially extremely upset -- she did work her ass off, after all. She also said that she'd rather get a B+ in that class -- which in her opinion is taught by the more invested teacher -- than be in the less challenging class and not learn as much and get an easy A. Her eyes are on learning and mastery, not primarily on the grades -- though she understands that they're important, too. And she did get a consolation prize for the hard work that resulted in such good marks: The first season of a trashy teen soap opera on iTunes.

It's important that our kids to learn how to fail. In that way -- and even though I would never intentionally cause my sweet, thoughtful, hardworking girl distress -- I'm almost glad she didn't get that final A. Better she learns this lesson from someone who loves her unconditionally.

Finding Balance: Obesity and Children with Special Needs

2011-11-04T14:28:00.001-07:00

Leo is a chubby boy. There's no pussy-footing around that. Whereas his pediatrician once had a "let's wait and see" attitude towards Leo's health and girth, she has started to remind us that now is the time to instill life-long healthy habits in our boy, if we can -- understanding of course that Leo's autism comes with food issues, and that the appetite-whetting medication he takes to help him control aggression is a complicating factor. And I know that Leo is not alone in needing to find strategies to be a healthier kid.

So it was with great interest that I joined yesterday's conference call with Ability Path, Special Olympics, and Best Buddies on their just-released report: Finding Balance: Obesity and Children with Special Needs [PDF]. I was relieved to discover that the participants mostly focused on practical, healthy support and strategies for families and individuals with special needs, rather than stigmatizing obesity itself.

The following are my notes from the conference call, any errors or omissions are also mine.

AbilityPath.org launches national campaign to raise awareness, end obesity epidemic, publishes guide for parents and caregivers in coalition with Special Olympics and Best Buddies International

Ability Path's Gabrielle Karampelis moderated the call, and stated that the report is meant to ignite conversation.

Sheryl Young, CEO of AbilityPath:

Children with special needs and disabilities have been left out of the national conversation about the obesity epidemic. We need to include them -- and we need to talk about the role that family members play, or physicians treating and advising family, or the school responsible for physical education and inclusive programs, or city council members approving inclusive equipment at playgrounds or at the park. They all need to be part of this conversation, for the following reasons:

Thirteen percent of American families have a child with special needs or disabilities.
It's really impossible to overstate the extent of the problem, we don't have enough information -- but in general this population is 38% more likely to be obese, and in some specific populations the numbers are more critical -- in the Down syndrome population the rate is 86%.

The issue is seriously complex, but we're hoping to education the general public about this -- and also convey a sense of hope. We want to raise awareness and have a call to action.

Tim Shriver, Chairman, Special Olympics:

For us, this report is bad news. We have over 3 million participants in community and fitness programs. We all deserve a failing grade in the ways in which we've created communities of health, fitness, and inclusion. I think the crisis is seen most closely in social aspects, but also in health aspects and discomfort aspects. There is a sense of apathy about creating a difference, and with our community commitments.

The Special Olympics is committed to redoubling their efforts, and accepting that this report is an indictment of our efforts. We need to include kids, need to "play unified" so everyone get the chance to be healthy, learn sports and nutrition. Our coaches will be trained in year-round fitness and nutrition, not just shooting baskets and running the 100 yard dash.

This is beyond a warning. This is a statement of serious problems. Our commitment:

First and foremost to expand our work
Second that when kids join Special Olympics, kids become not just more fit, but committed to health and fitness and nutrition
Third that kids get to be in inclusive fitness environments

Robin Sinkhorn, Lauren Potter's mom (Lauren plays Becky Jackson on Glee, and is now 21):

I'm so glad to be part of the release of this report, Lauren has struggled with this issue daily for her whole life, and I have supported her.

The report is full of real and practical solutions that we can really use to help our kids. It's so important that when people talk about obesity issues, they include our kids. (Robin wants to help any advice she can as we move forward.)

With Lauren as with many other kids with special needs, the relationship with food is always more complex than with typical peers -- especially in terms of balancing healthy choices and independent food choices. Now that Lauren is a young adult, any suggestion can be seen as treating her like a child. This is especially hard now that Lauren spends so much time on the Glee set with overabundant food choices.

70% of young adults feel parents are intruding when they offer solutions. But Robin thinks this report offers hope and health. When she read the report, she felt like it was the story of her and Lauren's life.

Questions from callers

Shannon Rosa, Thinking Person's Guide to Autism: When our kids are on medications that increase their appetites or lead to sedation, how can we balance those side effects with their health?

Cheryl: The question has come up the most: When we announced the report, we had streams of comments on our Facebook page (www.facebook.com/abilitypath) about this issue.
When the meds work, and you need them to work, then talk with physicians, hopefuly they'll have better info, and will be able to suggest other things you can do. You'll probably have to make lifestyle changes, like walking every day. Every family has to look at what works for them, and get more success stories that we can share.

Tim Shriver: We have a generation of medical professionals that are really seeing kids with special needs into adulthood, they are treating major conditions and seeing nutrition and healthy lifestyle as a lesser priority. In the meantime, the advocacy lies with parents and self-advocates themselves to challenge their physicians to help them understand how medications can contribute to unhealthy lifestyles. We need to come up with new models that prioritize healthy lifestyles.

Gabrielle: This report is meant to spark conversations, encourage families to put health at the forefront of their medical concerns:

Reporter for La Opinion: Does economic status contribute to the likelihood of negative health outcomes?

Tim Shriver: Resounding yes. Poverty contributes to negative health outcomes, and special needs can contribute to poverty. People living in poverty are more likely to be obese, and have significant health problems -- and find it difficult to get health care. This is true not just in the United States but in developing countries all over the world -- Latin America, Africa, Asia. This is a situation where poverty contributes to injustice -- when injustice is defined as "unfair treatment."

La Opinion: Why do special needs contribute to being overweight?

Robin Sinkhorn: That speaks to the complexity of this issues -- you're dealing with kids across the special needs spectrum, regardless of income -- they're not as active, they might have food issues, food aversions, food cravings because of medication.

Liz Doughty, San Bernadino: I have a 26 year old granddaughter with seizures -- she gets very upset when she feels caregivers are impinging on her independence, but she doesn't always make the right decision. What advice do you have?

Robin: It's very important to set up your child's expectations, and let them be the person to make the healthy choices. Lauren just got an iPhone app that can help her track calorie counts. That might backfire in terms of being overly concerned about calorie counts for some people, but it's one little thing that has worked for us.

Cheryl: It also helps to hear from doctors that health will impact lifestyle, as opposed to hearing it from parents or caregivers.

One of our clients has incorporated walking into her daily routine whenever she can, has lost 20 lbs and has a goal to lose another 20. She also now fixes her own lunch at home. At AbilityPath.org, we are compiling a list of websites and apps to help people track their own meals and health, and create menu plans and goals. They are also starting up peer support groups so folks can help support each other. It's promising.

Laura Cork, from parenting blog LAStory: What are some solutions to help other kids understand that our kids can be strong, and how to include them?

Cheryl: The Special Olympics and Best Buddies just partnered up with Nickelodeon's "How I Play," national day of play -- a great success. Steve Wampler, who has cerebral palsy, recently climbed El Capitan, and does inclusive camps -- he's really dedicated to showing how our kids can exceed expectations.

Tim: Exercise, sports, and play is what our kids like! They enjoy setting up games and playing sports, swimming. The best way to promote a healthy lifestyle is to make it motivating and fun! Include incentives that are enjoyable. Let's get kids playing together!

We organize unified sports -- but we also see self-organzing happening in middle school, high school, assemblies, outings, campaigns -- so why not with sports and play? Let's make it easy and important rather than peripheral! It shouldn't be marginalized, completely overshadowed by medication or homework. It is critical to expand accessible and inclusive sports and play for people with speical needs of ALL ages.

Leo playing on his soccer team

TPGA on Special Needs Talk Radio

2011-11-03T11:40:00.002-07:00

Yesterday the entire TPGA editorial team -- me, Jen Myers, Liz Ditz, Emily Willingham, and Carol Greenburg -- was interviewed by Elise Ronan on Special Needs Talk Radio. It made me incredibly proud to be part of such a smart team of ass-kicking women.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

We talked about the forthcoming TPGA book, why it is so important for both our team and our project to represent an autism cross-section -- parents, Autistics, and professionals; what we hope to accomplish; the fact that the only investment in this all-volunteer project is our own blood, sweat, and tears (and, OK, occasionally the blood of non-critical-thinkers); and that we created this project to be a one-stop resource for families and individuals new to autism, to help them fast-forward pass the negativity and misinformation from organizations that may appear legitimate to new autism parents and the newly-diagnosed. And oh, a lot more.

A correction: rather horrifyingly, and in my nervousness, I bungled the name of ASAN -- the Autistic Self-Advocacy Network, www.autisticadvocacy.org -- and want the org referred to made absolutely clear. I cited ASAN in highlighting their new project for helping people with autism navigate college -- appropriately enough called www.NavigatingCollege.org. Please check out the new site and broadcast it widely!

Being Proud, Being Present: Autistics Speaking Day

2011-11-01T09:42:00.000-07:00

Today is Autistics Speaking Day. I hope you're participating -- if so, submit your post to the official site! -- or at least listening. Really listening.

TPGA is participating with gusto: Carol Greenburg is tweeting fabulously via @thinkingautism as -CG, saying things about being autistic and parenting a child with autism that you absolutely need to read, and Liz Ditz is doing her usual fantastic post curation as -LD on @thinkingautism and also at our site, ThinkingAutismGuide.com.

Leo's not much for opining verbally -- but I want you to know that he's here, he's not a boy who lets people ignore him, and I'm proud of him every time he does speak out and tell people what he wants.

Our Current Favorite App & Stylus: Zen Brush & Nomad Brush

2011-10-24T11:22:00.002-07:00

This is one damn cool stylus, this Nomad Brush Mini with its conductive bristles. We've been using it on Leo's iPad with a variety of drawing and writing apps for a couple of months now: Eazel, GlowColoring (Free), Procreate, Penultimate, and -- our favorite -- Zen Brush.

Every time we break this stylus out in public, folks first get perky over using a brush on an iPad, then ooh and aah when they actually use it -- it's fun and, well, soothing. Especially when used with a really excellent product like the spare, elegant ink brush drawing/painting/writing app Zen Brush.

Leo enjoys goofing around with his Nomad Brush in Zen Brush (above), and the combo makes practicing writing a little bit easier. He can practice his stylus/pen/pencil grip without having to hold a piece of paper in position, and while the stylus glides freely over the iPad's glass surface without any literal drag (video below).

The Zen Brush interface is simple: three ink colors (black, gray, light gray), two eraser colors (white, gray), and a slider for brush size. I've yet to come across a person who didn't get a kick out of using the Nomad Brush/Zen Brush combo -- and I've brought them to several iPad workshops and conferences. Plus, all drawings in Zen Brush look good!

My "is this thing on" experiment

Leo copying me writing "bread"

My eldest's Sugar Glider.
She's a bit obsessed with exotic pets.

Mali's Twin Houses. The girl does have
a keen sense of balance and composition.

LOVE character calligraphy, by an iPad workshop attendee

Self-portrait by Steve Silberman. Love it!

One caveat for each item:

The Nomad Brush Mini is tiny. Very tiny. If I don't track it and put it back exactly where it belongs, it vanishes (and in fact I'm in a bit of a panic as I type these words).
Zen Brush has positioned their no-undo, page-clearing trash can icon in the lower right hand corner of the screen. This northpaw has accidentally tapped & deleted several masterpieces.

Other than that, have fun.

----

Disclosure: I was given our Nomad Brush by a company rep, with no strings attached -- we really do like it that much. I purchased all cited apps.

The TPGA Dialogues Discussed, Part 2

2011-10-22T08:34:00.000-07:00

I replied again to the TPGA Dialogues discussion continuing at Julia Roberts's Support for Special Needs, because there's still some not getting it going on. While it is against my non-confrontational nature to get in the middle of such things, this is not about me -- this is about doing the right thing even when it's not easy.

While I don't doubt that Julia will post my comment, those comments are moderated and it might take a bit for this to appear.

---

Apologies for the delay in replying -- beyond busy these past ten days though I've been thinking about this the whole time, because it's so damn important.

I am all for civil disagreement. I crave it. Anything else is an aversive and makes me wince.

But I also recognize that it is unreasonable to expect people who are oppressed to be civil when discussing that oppression with the people who are oppressing them. We parents who do not ourselves have/share our kids' disabilities know too well how pissed we get when folks treat us and our kids badly, especially when they do so from behind a shield of good intentions. Do we really want to behave that same way towards people who know what it's like to be our kids, and who (in the case of every last adult with autism who wrote for the Dialogues) work so hard to make life better for our kids/people with disabilities?

If we were parenting children of a different sexual orientation or race, I'm guessing very few of us would dismiss the feelings or rights of representatives from our children's community, or get publicly defensive if we were called out for writing something offensive to them if we did so out of ignorance rather than malice. We would listen and learn rather than protest because those communities have established, recognized advocacy movements, and have changed the way most of us think -- to the point where folks who publicly oppose racial equality or LGBT rights look like total assholes.

The rights matters discussed in the Dialogues are no different, but the discussion is younger, and while the Disability Rights movement is long-standing, the Autistic Self-Advocacy movement is just starting. Do we really want to be the opposing assholes cited in the history books? If we aren't ready for, don't have the energy to, aren't able to help, or aren't able to tolerate the unpleasantness that comes with working towards and effecting real social change, can't we just listen without making it about us -- or get out of the way?

This is hard for me to write. I like everyone who wrote for the Dialogues. I always want everyone to get along. And, when I find out people are upset my heart goes out to them -- as it did to Rob Rummel-Hudson when there were real-life repercussions from participating in the Dialogues, and as it did to so many of the participating self-advocates who felt that Robert and other parents continued to justify not listening to and dismissing them.

I am not saying all self-advocates are paragons of righteousness and perfection, or are incapable of making mistakes, or that we non-disabled parents need to listen to every last word they say and can never argue, never have the right to stand up for ourselves. That would be absurd, as it would be to expect self-advocates to view us non-disabled parents the same way. But when the discussions are about what self-advocates want, and what they need, and what they deserve? If we want to be the kind of parents and allies our kids want, need, and deserve, then we need to listen.

Again, I recommend people read the second week of the Dialogues, which would be the top five posts at the following URL, i.e., Day Six through Day Ten: http://thinkingautismguide.blogspot.com/search/label/dialogue.

I also recommend reading Jean Winegardner's excellent essay on the Dialogues, Who Should Lead the Autism Rights Movement:
http://communities.washingtontimes.com/neighborhood/autism-unexpected/2011/sep/30/who-should-lead-autism-rights-movement/

Update: additional recommended posts from advocates:

Neurodivergent K: For the Billionth Time, I DON'T HATE PARENTS
Eater of Trees: Allies Are Terrible Forever
Moonlit Lily: A Comment That Became a Post

Autism: No Matter What, There's Always Trains

2011-10-16T13:07:00.000-07:00

Last week was a comet ride, with more activity than I ever imagined could be fit into a mere six days -- it included an intense all-day conference (Hacking Autism's hackathon, more on that on TPGA tomorrow and Wed), meetups (Mali got to meet the excellent Bjorn of Toca Boca, followed by sharing panna cotta with my mom & Sr. Procopster), trips to Carmel to see the amazing Jordan Sadler speak on the intersection of Michelle Garcia Winner social thinking approaches and Unitarian Universalist principals, autism fundraisers (thanks to a furry blue monster), visitors (my mom from SoCal, Floyd & TLC from KY, whee!), inspirational open houses (Leo's), pumpkin patching (Leo's class), helping to finalize the Thinking Person's Guide to Autism manuscript (current heavy lifting by the unbelievably talented Jen Myers), trying to figure out why so many people are behaving badly while getting divorced (not us, not anyone you know, fairly stunned, no comment otherwise), Mali getting suspended from school for not just decking but threatening a fellow student (we will be enacting a behavioral contract with her; bit of irony there, completely on board), Iz touring a local high school so she can make informed choices for next year's transition (!!!!), and birthdays (mine, mostly an afterthought). (I can't even get into what Seymour gets to do for work tomorrow -- mostly because I'm so jealous -- but it's beyond stratospheric.)

Throughout it all -- and as you might imagine there have been schedule changes a-go-go -- Leo has been a good sport, cheerful and adaptable. He's been using great language, been intensely social, has demonstrated unprecedented awareness regarding self-care, and just yesterday upended everything I've been saying during my last few weeks' worth of iPad talks and workshops about him rarely doing non-iPad independent play by doing some fairly awesome non-iPad related independent play: He set up this entire train track by himself, using every last piece of track we own. Pretty damn cool, eh? He even let his godmother TLF play with him. Lovely. Love that boy.

The TPGA Dialogues, Discussed

2011-10-12T09:44:00.000-07:00

My friend Julia over at Support for Special Needs wrote a post today called The Silo Effect, which referred to TPGA's Dialogues in the following passage:

"Recently there were some discussions between parent advocates and self advocates in hopes that they might create understanding, a bridge; something that might start the process of working together better as one larger community. In my opinion, that didn’t happen, unfortunately."

I wrote a long comment in response, but as the site moderates its comments, I am running out the door, and I've been meaning to write about The Dialogues anyhow, here's what I said:

The discussions referred to are the Self-Advocate/Parent Dialogues at Thinking Person's Guide to Autism, which you can find at http://thinkingautismguide.blogspot.com/search/label/dialogue. I'd recommend people read through the entire series, as the second week brought more synergy and less dissonance than the first.

It has certainly been informative to read how differently readers and participants reacted -- some defensively negative, others thankful and positive; others still processing, pensively. And much good has already come out of the Dialogues, such as actions already being taken in response to self-advocate Zoe's call for a PFLAG-like self-adovocate/parents/allies organization.

I am certainly grateful to everyone who participated in the Dialogues, even if only as a readers. But the Dialogues weren't meant to be a solution, they were meant to be a start. They were absolutely complicated and challenging -- that is what the early stages of social justice and civil rights movements look like.

At the root of the Dialogues was one of the most important questions any person can ask themselves -- if someone asks me to listen to them and take their identity and cause seriously, do I pay attention? Even if what they're saying makes me reassess my own identity and cause, down to the core?

Being a parent of a child with special needs can be a really damn hard, isolating, marathon, sometimes heartbreaking role -- much of those difficulties externally imposed by the educational, medical, social, and legal systems that let us and our children down. It is understandable to be taken aback when someone tells us that we don't have the right to speak for our children, if we've spent so much time as their only ally, against all odds and bureaucracy and prejudice.

What parents need to consider is that self-advocates are our possible future children. That while our child may not share the same disability -- may not even ever be able to self-advocate -- that is a separate matter from that self-advocate's right to not only have a say but be considered an authority when it comes to disability rights.

So, yes, we should work together, and I appreciate Julia's call for listening, and especially her call for apologizing when we make mistakes -- I'm a mistake-making flag-waver, myself -- But getting to the place where we can do that is going to be hard work, and we've only just started. We need to build cross-communities respect, first.

We TPGA editors are planning to host another Dialogues series, in the spring. Stay tuned.

Making Great Apps for Kids With Autism, Kids Like Leo

2011-10-11T05:48:00.000-07:00

I'm going to be spending all today at HP's App Hackathon, the IRL manifestation of their HackingAutism.com project. You can check out the Hacking Autism idea gallery to see apps people have suggested, and you can still add your own thoughts. As you might imagine, I have a few app ideas of my own -- how about a game based on Stephen Shore's excellent Using a Public Bathroom video? Leo would love it, and it would be fun, educational, and appeal to not just Leo but ten-year-old boys the world over.

I was initially invited to the Hackathon to give a talk, but apparently the developers decided at the last minute that they don't want to hear about why they should be hacking -- they just want to get to the hacking! So I'll be there as a parent resource and as a blogger.

But because I already wrote up the slides for my talk, I'll slap those bullets up here. This is what I want the Hackathoners to know about developing apps for kids like Leo:

How Apps Expand Learning and Leisure Opportunities for People With Autism

Independent learning and leisure can be a challenge for kids like Leo – and he deserves to play!
Apps are motivating and dynamic: they have audio, visuals
Great content and ideas are useless without a straightforward user interface

Why Apps Work for Leo

No cursor analogy - direct touch screen
Fine motor ease: stylus, mouse not required
Replace backpacks and cupboards of activities
Learn independently, or with support
Incidental, interstitial learning

What Helpful Apps Do

Simplify, focus – break learning down into discrete chunks
Support literacy but don’t require it
Avoid nested, cluttered, text-heavy interfaces
Use reinforcing audio, visual cues

Ideal App User Interfaces
(Adapted from Injini.net's results from beta-testing their very recommended Injini app suite with children with autism)

To keep children with autism engaged, apps need:

Consistency
Predictability
Simplicity
Visual cues, structure

Clearly defined, consistent beginnings and endings:

Support learning
Ease transition anxiety

Elegant does not mean perfect or polished! It means simple and straightforward.

Collage/art app Faces iMake: one of my very favorite, easy-for-Leo-to-use UIs

Mali App Demo: Toca Robot Lab

2011-10-10T11:25:00.000-07:00

Mali's and Leo's Toca Boca app fandom has been recognized, as you can see by the excellent Toca Boca tee she's sporting in the video below. Malil is demonstrating one of the apps she has in heavy rotation, Toca Robot Lab -- which lets her create robots and then guide them through mazes before they are dispatched to the great robot unknown.

Once again, our thanks to Toca Boca for making motivating, easy-to-use apps!

We are grateful to Toca Boca for gifting our family this app (and the t-shirt) but the opinions expressed in this space are ours and ours alone. As always, we only review the apps we consider worth reviewing -- though we have a sizeable app review backlog.

Cetacean Carcasses in Cutouts (Rah for Child-Friendly Radiolab)

2011-10-10T09:19:00.000-07:00

The kids and I have been listening to a lot of Radiolab podcasts on the iPad, in the car*. It remains my favorite non-KQED-produced public media show. If you're not already a listener, then, to paraphrase co-host Robert Krulwich, "I pity you for how much you don't yet know."

This video, inspired by the episode Loops, "is an intricate world of paper cutouts to illustrate the different stages a whale carcass goes through after dropping to the bottom of the ocean." I especially appreciate the elegant representation of flowing hagfish mucus.

Can't wait to show the kids when they get home today!

*Parents might want to pre-screen episodes for occasional disturbing and/or adult-themed content.

Thanking Steve Jobs on Leo's Behalf

2011-10-05T22:18:00.001-07:00

We lost Steve Jobs today.

Every last reader of this site knows what the vision and technology shepherded by Steve Jobs means to Leo. Apple's iPad gives my son independence he's never had before; Apple's iPad: Year One video, which Steve introduced at the Apple iPad 2 launch in March, showed the entire world that people with autism need only the right opportunities and tools to show how much ass they can kick.

Rumor has it Mr. Jobs particularly liked the autism segment of the iPad video. It's nice to think that one of our boy's achievements has been to meet those lofty standards.

Thank you, Steve. From Leo and his entire family.

Leo's Music Session With Stephen Shore

2011-10-04T11:32:00.000-07:00

Life balance is a struggle for me. Too little to do, and I get depressed and sink into torpor. Too much going on, and I become an overtaxed human lightbulb -- bystanders can practically see my internal filaments pop. But sometimes, the too-busy is absolutely, 100% worth frying my brain -- especially if it means securing a once-in-a-lifetime opportunity for Leo. For instance, the chance to have Stephen Shore come to our house for a music session.

Stephen and I met at IMFAR this past May, and chatted briefly about how I've never found a way to formally support Leo's innate musical abilities. (Stephen, a talented musician and music teacher, believes music is important for people with autism [free iTunes link #19] -- not just because it's fulfilling and entertaining, but because it's a real-world skill.) Stephen said we should bring Leo out to New York for lessons, and I laughed wistfully -- Leo hasn't been able to tolerate a plane flight more than 90 minutes long for over four years, though he's working on it.

Then I found out that Stephen and I would both be speaking at last Saturday's Morgan Autism Center conference, so I reached out and asked if he would come over for a session with Leo. Stephen said yes. I did a Snoopy dance.

Photo (c) Steve Silberman

If you've not met Stephen or heard him talk, he is one of the kindest men you'll ever encounter (though that doesn't mean he won't tease a person for overladling the 50 cent words, ahem). And patient. And he really, really understood how to work with Leo (though I will admit to hovering; I'm not used to people "getting" Leo so quickly). Using a method he developed, Stephen really, truly helped Leo start to identify keys on the piano. Were we to somehow have Stephen and Leo work together again -- or train another music instructor in Stephen's method -- I believe Leo would be have a real chance to play the piano and read music.

Stephen loves to travel, and said he'd be up for teaching workshops or college courses in the Bay Area and then fitting in lessons for Leo, so if anyone knows a local college that would be interested in having Stephen guest lecture or teach a short summer intensive course or workshop, please speak up! (During his MAC conference lecture, Stephen noted that he travels so much by air because he's a sensory seeker -- takeoffs and turbulence are especially satisfying.)

Photo (c) Steve Silberman

I was not able to manage the busyness of Friday all on my own; there are children all over kingdom come to retrieve every day, and those retrieval time were during the only window that worked for Leo's and Stephen's music session -- so thank heavens Jen Myers volunteered to get my girls from school. Which meant, yay!, she got to meet Mr. Shore as well (and also Mr. Silberman, who tends to stay in the background and observe while somehow managing to be the opposite of shy and retiring -- potently great company). We all got to hear Stephen play Tumbalaika (though Mali interrupted him to play Old Mac Donald Had a Farm, which he graciously allowed), and then listen to Stephen's explanation of how he does sensory overload simulations during his workshops:

And then Stephen, Seymour and I needed to head back south for the MAC Conference dinner, where Stephen (once again, graciously) allowed me to hide out with him when my ineptitude at small talk threatened to send me into full-blown panic -- unless I was talking with Joanna Jaeger, who had lots of good advice about older boys with autism and autism siblings, and was happy to talk about vintage musicals.

A sincere thank you to Stephen for his expertise, generosity, and amiability. This world is a much better place with you in it.

Stephen's website, where you can buy his books and videos, is at www.autismasperger.net.

Leo and His iPad on ABC TV

2011-10-03T06:02:00.000-07:00

You may or may not have heard, but last week Leo and I were featured in a local ABC News (KGO) story, "Autism Community Sees Promise in iPad Apps." Leo is adorable and demonstrates his iPad smarts, as usual, and I got to demonstrate some of the funny faces my husband says I make all the time but which I never see -- on TV. (Bonus: Can you tell I dyed my hair about an hour before my interview took place?) I thought the story did an excellent job of talking about how iPads can support kids like Leo, and staying positive:

Reporter Lyanne Melendez published the story the night before the Morgan Autism Center conference, as she promised she would -- so I was tickled when a woman came up to me after my MAC conference iPad workshop and told me she was there specifically because she saw the ABC iPad story. (One) mission accomplished!

Very grateful to the wonderful Joanna Jaeger of Parents Helping Parents in San Jose, who set the interviews up.

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The other happenings of this past Friday and Saturday were so incredibly jam-packed with noteworthiness that I'm going to have to parcel it out -- the end of the TPGA Dialogues, Leo getting a music session with Stephen Shore, the MAC conference dinner, and the brain-poppingly, influentially informative MAC conference itself. Nothing else exciting had better happen in the next few days!

Talking About iPads on the Radio, and Upcoming iPad Events

2011-09-28T23:38:00.002-07:00

Listen to internet radio with The Coffee Klatch on Blog Talk Radio

I had a great time tonight talking about iPads and apps for kids with autism and other special needs with Marianne Russo of The Coffee Klatch and Gary James of A4CWSN on BlogTalkRadio tonight. Have a listen!If you're more of an IRL person, I'll be speaking at and/or attending three more autism/iPad events in the next two weeks:

Saturday, October 1: Morgan Autism Center Conference (get your tickets! Very excited to see Stephen Shore speak)
Thursday, October 6: San Jose Disability Awareness Day (get your free tickets! Very excited about the music therapy session)
Tuesday, October 11: HP's Autism App Hackathon (more information at http://www.hackingautism.org)

If you're able to make it to any of these events, do say hi.

Mom's Little Forgery Expert

2011-09-23T05:39:00.000-07:00

Gosh, isn't she cute? Especially all toofless?

Don't let that face fool you.

Seymour and I are having an interesting week, if you define "interesting" as "so stressful that physical symptoms manifest." It takes a lot for our kids to blow the top off our OMG meter at the moment, but that Mali, she always comes through.

Today, while picking her up from school in my savior Jennyalice's car (as mine died 45 minutes before I needed to pick up five different children from five different locations), the principal came over and put her head in the car window.

I jumped. She smiled, tightly, and said, "You know that disciplinary letter I sent home last week, the one you never got?"

"Yes, but we talked about what happened, correct? Or has there been another incident?"

"Well," said the Directora, "I actually found the form. I guess Mali didn't want you to see it, because she forged your name and turned it back into us."

Mali forged my name. My six-year-old forged my name.

I told the principal we'd talk the next day, and drove away as my dropped jaw was stopping traffic.

"Mali," I said when I could actually talk again, "did you know that it's illegal to sign someone's else's name for them on an official document? It's called forgery. People go to jail if they're convicted of forgery. It's a big deal."

Her eyes became huge. "I didn't know about forgery! I just didn't want you to see that I was in trouble!"

"I know. But this is serious. And we're going to talk about it with Daddy when he gets home."

And we did. And Seymour used the jail metaphor as well, once again proving there's a reason we're together.

Much as we try to be a preemptively positive-behavior-shaping family, this time we're using consequences: No screen time for a week. It's going to suck for everyone. But this kid, she's not going to thrive in a wishy-washy household; she's going to take it over and make us all into her minions. That's not healthy. That way lies clinical narcissism, or at least a tendency to manipulate first and ask questions later.

I'm not happy about any part of this scenario, and while I intellectually get the laugh factor in a six-year-old who is wily enough to -- as far as she knows -- invent forgery, I am not even remotely amused.

Later on, as I sat on the living room couch posting today's entry in the Thinking Person's Guide to Autism Parent/Self-Advocate Dialogues (between Zoe at Illusion of Competence, Robert Rummel-Hudson of Schuyler's Monster, and ASAN President and co-founder Ari Ne'eman, heady, provocative, necessary stuff that you must check out), a shoe descended from the second story, tied to a string, with a note rolled up inside. It landed on my laptop desk. The note read, "Do you still love me?"

Of course I do, I told her, that is a question you never have to ask. But that's different from approving of your actions. I love who you are, I don't like what you did.

She still seemed unsure. I feel very rocked by this incident, by the sneakiness and defiance it represents. Or maybe it's just boundary pushing? I have no idea. Iz and Leo never did anything like this.

After all, this is the same thoughtful girl who kept asking me about autism all morning, wanting to hear more about Lindsey, whom she now thinks of as a beautiful musical autistic princess with a handsome meteorologist prince, and who has a brother with the kind of autism that means it's hard for him to communicate, just like her brother -- the same girl wanted to know more about what autism means, how for people like one of her beloved adult friends it can bring cool things like superhero hearing, but also sensory overloads that hit faster than in a person without autism and can lead to physical shutdowns. The same girl who then talked the same-aged cousin who is staying with us for a few days into building "yogurt obelisks."

She's amazing. She's frightening. And sometimes I worry that, as a parent who may not have the energy level necessary to properly guide a kid of her intensity and latent criminal tendencies, I'm not the best person for the job.

But yes, I do love her, silly question or not.

Leo Stands Up for Himself

2011-09-18T22:20:00.000-07:00

Oh yeah, it's soccer season. Leo is thrilled!

It's been mind-explodingly and productively busy here lately, but I wanted to note two significant Leo stories. They're important. He deserves witnesses.

First, he ended a tickle session with me not with his usual pushing away or even an "all done," but by saying loudly and firmly, "Stop it!" This is clear as hell, and lets our boy stand up for himself in a way that needs no interpretation. Very, very glad.

Second, at school, he got upset about putting the class place mats away after snack. He complained loudly about the place mats all day long, and the class staff couldn't understand why -- until later on they realized that two of the place mats had slipped off the back of the table and fallen on the floor -- where no one except Leo had noticed them. They let him put the place mats back, and his world realigned itself into a place where he could be happy. Glad he got to follow through, finally.

Our boy, he can stand up for himself. It is a relief, and I am proud, and that's about that.

On Parents Listening to Self-Advocates

2011-09-13T13:59:00.001-07:00

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
-Winston Churchill

Sara thought for a moment. She saw she had made a mistake.
-Frances Hodgsen Burnett, A Little Princess

You'd think we parents of kids with special needs -- righteous avengers that we are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.

But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my ten-year-old son, I sometimes overstep advocacy boundaries, or am not inclusive enough -- talking about "children with autism," for instance, when I really mean "people with autism."

If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).

It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.

Which is ironic, really, when you consider that I am most often engaging with Autistic self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:

The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)

The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:

But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.

I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.

If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:

My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.

It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.

The recent introduction of a medical code for wandering is a stark example in which both parent and self-advocates concerns are legitimate. Wandering can be a legitimate safety issue. Who wouldn't have wanted a way to prevent eight-year-old Joshua Robb from wandering off into the woods yesterday morning, especially as he remains missing?** But parent and caregiver concerns in no way de-legitimize the concerns of self-advocates, who know -- often from personal experience -- that codifying opportunities to restrict the movements of both children and adults can lead to abuse, due to insufficient understanding of (or attempts to understand) the behavior that led to the wandering in the first place, as Landon Bryce illustrated:

Since the wandering code will go into effect October 1 despite protests from the self-advocacy community, the onus is now on parents and caregivers to understand wandering behavior, and ensure the code is not being used to restrict movement unfairly, abusively, or due to convenience. Parents tell themselves they would never allow this abuse to happen, self-advocates know it too often does.

We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.

Let's try to demonstrate that we are aware of our privilege as neurotypicals, of being outside the disability community. As was reinforced for me last month during BlogHer11's Immigration panel featuring Jose Antonio Vargas, when we're part of the dominant culture, we can't claim we aren't privileged. We are. And it doesn't matter that we didn't ask for the privilege -- we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.

Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.

I'll keep trying to listen, and trying to act accordingly, because I want a the best life possible for my son and his community-mates of all ages. As Ari Ne'eman said at last month's Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,

At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.

At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?

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**Update: thankfully, Joshua was found, but the situation is far from resolved.

Cinderella! A New App From the Nosy Crow Imaginarium

2011-09-13T00:25:00.002-07:00

It's not easy to get Mali to demo thoroughly engrossing apps like Nosy Crow's just-released Cinderella story book ($5.99), as she becomes so enthralled she forgets to respond to her mother, or the camera. See for yourself:

Like the same studio's previous app, The Three Little Pigs (reviewed here), Cinderella is a top-notch production, with intricate but easy-to-interact-with animation, and funky, fun design. It also has a bonus for iPad 2 users -- you can use the front-facing camera to appear in the Ugly Stepsisters' mirrors!

In the week we've been trying out this app, it has consistently been Mali's go-to play choice, so I do believe that is a recommendation. I'd be interested to hear what other little quirky fairy tale lovers think, too.

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Mali was given a copy of Cinderella by Nosy Crow, but this review is her and my honest opinion. We were not otherwise compensated in and way.

How iPads Can Help Children With Autism Learn and Play

2011-09-12T11:28:00.000-07:00

If you can't make it to my PHP.com iPad workshop on 9/14, here's what I'm going to talk about. This is an outline only, and should not be considered a substitute for my IRL information, charm, or awkwardness.

How iPads Can Help Children With Autism Learn and Play

“My sonLeo's life was transformed when a five-dollar raffle ticket turned into abrand-new iPad. I'm not exaggerating. Before the iPad, Leo's autism made himdependent on others for entertainment, play, learning, and communication. Withthe iPad, Leo electrifies the air around him with independence and daily newskills. People who know Leo are amazed when they see this new boy rocking thatiPad. I'm impressed, too, especially when our aggressively food-obsessed boychooses to play with his iPad rather than eat.”[1]

Benefits: Accessibility and Convenience

No cursor analogy – direct touch screen
Fine motor ease – stylus/mouse not required
Portable
Can replace backpacks – and cupboards -- of activities

Benefits: Cost

Entry level iPad2 (16 GB Wi-Fi) is $499
Original iPad 16GB currently on eBay for less than $400
Other AACdevices (Vantage, DynaVox, etc.) cost several thousand dollars

Benefits: Learning

So much more than an AAC device
Screen is big enough to be digital parallel to paper or books
Keyboard and screen are in same space, most kids aren’t touchtypists, child doesn’t have to move eyes from screen to keyboard[2]
Apps are organized, accessible, predictable framework
Apps break learning down into discrete chunks, topic areas
Learn without needing to read, including read-aloud books
Learn independently or with support
Incidental learning opportunities abound

Benefits: Social and Play

iPads are cool, they attract other kids – including siblings
Can support social skills, formally and informally
Independent leisure time

o Learning activities

o Games

o Videos

Is an iPad a Good Fit?

Informal evaluation: Borrow one, or go to an Apple store
Formal evaluation: SETT framework[3](Student, Environment, Tools, Teaching)
Formal evaluation: AAC[4](Assistive and Augmentative Communication) at school, SLP, university
Kids who can benefit might not qualify under AAC – e.g., Leo canspeak “fluent requesting”
Does not suit all fine motor needs, e.g., those who require tactilefeedback to use touchscreens

Overuse/Abuse?

Makes me laugh, for kids like Leo, for whom independent is good!
Valid concern for kids who crave screen time (so ... Screen Timeapp)
Savvy kids can be experts, help other kids, mentor
Kids can “shoulder surf” passwords
Managing Access, under Settings:General

o Passcode Lock

o Restrictions: forspecific actions:

o YouTube

o Deleting Apps (not inolder iOS)

o In-App Purchases (costly,“Smurfberries” lawsuit.)

Choosing iPad Type and Size

16GB, 32GB,64GB? Depends on needs

o If have computer backup, can swap out apps/content

o Movies are 1–2 GB

o TV episodes are 250 MB to 1.25 GB

o Apps are getting bigger – Mr. Thorne’s Phonics is700+ MB

· Wi-Fi vs 3G – donot have to activate 3G unless needed

Is an iPad 2 Necessary?

No. But it is convenient.
Instant photosand videos for social stories
Immediacy and large size of photos, Photobooth -- all motivating
“Mirror” photosand videos for practicing, modeling

o Expressions

o Articulation

o Pronunciation

o Social Questions

When iPads Are Not in Your Budget

Go through insurance,school district – write into IEP

o AAC evaluation

o SLP recommendation

o Research[5](longitudinal studies are ongoing)

Fundraise:Community/Online – it works!

o Free: ChipIn.com, GiveForward.org

o Commission: Crowdrise.com

iPad DonationCharities

o A4CWSN.com, etc.

iPad Protection – Insurance, AppleCare,Loss

All iPads come with 90 days of phone support and one year limitedwarranty
Insurance (3^rd party): Protects against damage andphysical loss
AppleCare: Service, support for technical issues, up to two years
Purchased content loss:

o iTunes rememberspurchased apps, will let you download the same app/version for free (now all media, not just apps)

o If something happens to your device, Apple can do a "FullHistory Regrant" of your iTunes account purchases

Managing Media

Syncing and Backup
Double-check your settings before syncing!
Automatic vs. Manual settings.
Syncing photos from Computer - Create dedicated folder in iPhoto,set iTunes > iPad > Photos to sync only those photos

Accessibility – Using Voiceover

Can be tricky to use, doesn’t work with all apps
In simple OS apps like All About Me, voiceover works well
Works well with iBooks

iPad Protection – Cases vs Covers

· Apple SmartCover

o Fun to rip off!

o Not great with grip orpreventing slipping

· Cases: Protection vs. Convenience

o Otterbox -- Can drivea truck over it. Installation is tricky.

o ZooGue – Strapmounting, carrying

o Targus 360° Rotating –sturdy, flexible stand options

o GumDrop Military Grade

iPad Styluses – Benefits and Caveats

Styluses: Pogo, etc.
Brushes: NomadBrush.com

Apps!

Spreadsheet constantly updated at http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html – collaborative effortwith Jordan Sadler, an SLP, and Corina Becker, an adult with autism.

[1] Rosa,Shannon Des Roches. “The iPad: ANear-Miracle for My Son With Autism.” BlogHer.com.http://www.blogher.com/ipad-nearmiracle-my-son-autism.

[2] Shap,Jacqui. “It was one of those ‘Oh Wow’ Moments.” iPods, iPhones, & iPads in Education.http://ipodsiphonesineducation.wikispaces.com.

[3] “These are the questions a site team should ask itself whenconsidering AT for a student.”

SETTFramework. http://edweb.tusd.k12.az.us/assistive_technology/AT_SETT.htm.

[4] “How to Get an AAC Evaluation:”PBS Parents Inclusive communities. http://www.pbs.org/parents/inclusivecommunities/augmentative3.html.

[5] Sistach, Francesc. “Linksto Academic Articles.” iAutism.http://www.iautism.info/en/2011/04/09/links-to-academic-papers.

Mali Loves Apps Too: Toca Hair Salon, Presidents vs Aliens, & BrainPop

2011-09-04T17:53:00.000-07:00

Mali's portrait of our friend
Liz in Toca Hair Salon

Every so often, Mali likes to pipe up about the apps that she likes, too -- when she's not lecturing random tolerant pediatricians about microorganisms or declaring that she's played soccer for two years and so has learned everything there is to know about the sport. When she negotiates with her siblings (and her parents) for iPad time, it's usually so she can dive into BrainPop, TocaBoca Hair Salon, or President vs Aliens.

Toca Hair Salon ($.99) is from the same folks who brought us Leo's perennial go-to freeplay app Toca Boca Tea Party. I could tell you more about it, and why it has Mali currently declaring that she will be a hair stylist when she grows up, but Mali is determined to tell you about its merits herself (and no, I did not prompt her to turn the iPad around and give this demo from the viewer's perspective -- she did that spontaneously.)

She will also play the U.S. presidental history trivia game Presidents vs Aliens ($.99) indefinitely, which surprised me, as she's never previously shown much interest in topics like politics or history. But she enjoys this app -- and, thanks to playing it, can now identify all the U.S. presidents by sight (or official portrait), the order in which they held office, and their political party. Plus she now refers to Nixon as "Tricky Dick!" This app is by the same developer who brough us Stack the States and Stack the Countries, which all three of my kids enjoy. PvA video demo, with Mali once again in Game Show Host mode:

The app that makes her fight for the iPad every day, though, is BrainPop's (Free) daily animated movie. I've never seen anything like these cartoon conversations between a young guy (Tim) and his robot companion (Moby) for helping young minds easily slice, dice, and digest complex topics, ranging from Airplanes to Hurricanes, from the Science of Boogers to Napoleon.

The best part for me is not Mali's learning, though that's great, too -- it's that we get to have great big rabbit hole conversations afterward, like why was Napoleon exiled twice, why they chose incredibly isolated St. Helena for his second bon voyage (Elba being right off mainland Italy, easily checked and compared in Google maps), how St. Helena is the second-oldest existing British Colony after Bermuda, did you know that our country used to be a British Colony too ... yeah. It's good stuff, and all the tangents can be followed instantly if your iPad is online.

Recommended for igniting/feeding hungry little minds. Kids don't have to be readers to watch the movie, due to the narration, but the reinforcing quizzes afterward require reading or a literate assistant.

Back to Leo apps next time! Though I suspect the latter two apps might appeal to Leo's trivia-minded spectrum-mates.

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All reviews are my (and my daughter's) opinion only. All apps were purchased or downloaded independently.

Leo Loves Music Apps: PianoBall

2011-08-29T21:15:00.001-07:00

I took August mostly off from things iPads & Apps (due to pure mushroom cloud overwhelm), and am easing back in with a single solitary app review (and by giving three local iPad workshops in the next two months, heh).

Leo has been grooving on several different apps lately, but the most pleasant surprise came from PianoBall ($1.99), which we picked up at a discount thanks to its inclusion on the most recent Moms With Apps App Friday. PianoBall is the kind of app I like to get for Leo, since he loves almost nothing better than musical free play with structural underpinnings, yet with a novel interface. Which is what PianoBall is all about!

See those four balls at the top of the keyboard below? You can spin all four of them in any direction, to change the keyboard's features. Starting from the left:

The first ball changes the keyboard to the ball's front color, and says that color out loud (oooh, learning!).
The second lets you toggle the keyboard between plinking away on a standard keyboard, and tapping out a preset tune using any key, somewhat like Leos' beloved Tappy Tunes.
The third turns the keys rainbow-colored, and lets you shift the spectrum around.
The fourth changes the keyboard's instrument sound: keyboard, drums, saxophone, xylophone (pictured).

The video below is Leo checking out PianoBall for the first time. Wackiness! And glee! He's been particularly unsettled lately, having a hard time focusing and sitting still -- so the minimal demands but spectacular results of PianoBall let him have exactly the kind of stress-free fun right he really needs right now.

Thank you, Internet, MomsWithApps, and App Developers in general. You keep our boy so happy.

BlogHer 11: The Colossal Version

2011-08-27T13:17:00.002-07:00

Echoes of BlogHer '11 are still pinging around the Blogosphere three weeks later, as folks process the conversations and ensuing momentum -- so this tardy wrap-up is still somewhat timely. You can read a more coherent and streamlined version our our goings-on from my travel companion and roommate Jennyalice. Or, check out our other roommate SJ's pre-conference volley. (If this post seems disjointed, heh, imagine what it was like to actually be at the conference, actually experiencing everything below -- and I am not including half of what we did!)

We knew BlogHer11 was going to be a three-day learning and and socializing marathon from the get-go, so we started off easy on day one: I dragged Jen and my mom and girls (and my mom's dog) on the road at 5 AM, inveigled them into eating at my favorite childhood Mexican restaurant 400 miles south in gloriously dingy Anaheim for lunch, then dragged Jen to meet with the too-cool crew of Oceanhouse Media in their stunning new San Diego offices. (I love Oceanhouse -- they really take concerns of parents of kids with special needs seriously, which is just good business in general.) And then we dropped off my mom and the girls and dog at my mom's place, got gussied up, and hit the BlogHer conference for speaker training and the first round of parties!

Apparently, while we were having Mai Tais down at the bar with our beloved Laura Shumaker that first night, there was some sort of flash mobbery, which is honestly my one of worst social nightmares (actually, my worst social nightmare was the hot sweaty crowded Vans Warped tour Seymour took Iz to the next week, best dad ever). I am a perennially conflicted conference attendee due to perennial social awkwardness, so missing the flashing and the mobbing was OK with me.

The rest of the conference was a syncopated blur. There were good dinners. With great people. Like Jen Lee Reeves and Robert Rummel-Hudson -- whose book Schuyler's Monster you should not just buy but read -- and Liz Ditz (including Laura and SJ, why are they not in this picture?).

We occasionally visited my very patient mom, and my girls -- whom SJ advised to consider granola bars "factory floor sweepings." (Fair enough.) SJ will also apparently be starting a band with Mali named Maelstrom Plum or something like that. It was fantastic getting to have breakfast with her and Jennyalice every damn morning, then there was the frosting of getting to bask in their reflected glow at the conference, because how damn phenomenal are they both? We need a wormhole between SF and Seattle.

Back at the conference, the number of choices for any given hour overwhelmed. And we got to spend some quality time with other women we adore, including Tarrant and Jenijen (and why is Denise not in this picture?). This is just after Jenijen read us a beautiful piece of her writing. (She is a gorgeous writer.)

We did periodically swing through the whole Expo center where brands and companies promoted some stuff and gave away other stuff for free but not as much cool stuff as last year, IMHO (no PlayDoh perfume? *sob*). Though the freebies were often appreciated, for instance in the case of Pfizer, which was handing out Advil samples to the semi-ambulatory hangover crowd. And I was grateful for the ladybusiness stall handing out ladybusiness gear when my own ladybusiness suddenly decided to go for a fortnight cycle instead of its customary lunar. Serendipity!

I was also a speaker, in the Special Needs (mostly) parenting minicon, along with moderator/organizer Julia Roberts, Robert R-H, and Aurelia Cotta. Here's the outline I'd planned, which was not exactly what I said, but hey:

Selfish: I can't do this with just my own brain!
What I've learned from BlogHer: Respectful disagreement is critical
Thinking Person's Guide to Autism

How TPGA founded: niche not being covered.

We're somewhat veteran parents now, what would we have wanted when kids were first diagnosed? Transplant my current brain into my 2003 body!

Cross-section of the community: Parents, professionals, adults with autism

Not negativity -- we don't have time for that shit. Not echo chambers -- no one learns.

Smashing stereotypes: Parents are NOT martyrs, children are NOT precious angels, adults with autism dislike Rainman stereotype (plus Kim Peek did not have autism) and are as diff from each other as any other population.

Prize learning and discussion over defensiveness

Prizing respect for our children and their adult peers (and avoid treating Autistics as tokens). What would your kid think of what you'd written? Without special treatment -- my son can be as rotten as his sisters.

Sometimes parenting our kids means a steep learning curve, especially for parents from outside the community,

Have built cherished friendships, learned to make hard decisions, benefited from phenomenal learning.

I then poked my head into Denise's Patriarchy panel. Shannon LC Cate was there! It was the first time we'd met in person, though we'd been corresponding since 2003 -- the era of Emperor Joshua Norton and Plain Layne. What a delight.

My favorite panel, though, was Coming Out as Undocumented: The Children of Immigration, the Definition of American, which included Jose Antonio Vargas of Define American. The takeaway for me: everyone can make a difference, but it's hard, because as panelist Erica Holloway described, the process for undocumented residents to become legal residents is broken:

"What's wrong with [the] government is it sets up people like Jose to fail. Living as an illegal resident is easier than becoming a citizen."

Jose himself, on the complications of and lack of options for the undocumented [excerpted from the liveblog, which is a mostly but not entirely faithful record]:

"In the State of Alabama, [it's] even worse than Arizona, [being undocumented is] actually a crime. You can actually get fined or arrested for driving somebody who is undocumented or for living in the same house. You could have a family in which the wife is an American citizen born here, and has a kid born here as a naturalized U.S. Citizen thanks to the 14th Amendment. It's a mixed status family. Which in many ways tells you how mature and how long this problem has been. In many ways, my story is instructive because it represents how bad the problem really is. If there was a way for me to get in some sort of line, believe me I will be there with popcorn."

Jose's former high school principal Pat Hyland spoke adamantly about the need for those who, like her, find themselves in a position of privilege to own up to that privilege, and use it for good:

"I don't know if Jose wanted the conversation to turn this way, but the first time he came out to me was as being gay, which was such a stressful thing but he held the other secret [being undocumented] even longer. And if you think of the magnitude of those things, the fact he thought it was okay to tell this one story, but not okay to telling the other, just think about the gravity of that situation. Like so many educators, there's a kid in front of you and what are you going do? It's a kid that needs something and it doesn't matter what color they are, or what the situation is, you are there to care and you are there to help them be the best they can be."

Afterward, there was culinary frolicking as we made Risotto with Marco Pierre White at the Knorr booth down in the Expo -- entirely SJ's idea. Sr. Procopster, who was supervising our antics via Twitter, didn't believe our good fortune at first. When we assured him that, yes indeed, we were going to be cooking with that Marco Pierre White, he turned peevish. Though he's since resumed talking with me.

At first I was worried about taking orders from a legendary firebrand, but MPW was entirely gracious, pleasant, and professional. FYI. And oh my goodness was that Risotto delicious.

The entire time, though, I was wondering what the hell MPW was doing promoting Knorr stock at a women's blogging conference -- so I asked my chef BIL James his opinion when we visited him on our way home. After James finished giving me O RLY face, he launched into a detailed MPW bio, the conclusion of which was MPW does whatever the hell he wants, because he can.

And then we went to about five more parties with gyrating handsome dancers and sparkling unicorns and cheeseburgers. Where I finally to got to have a cherished conversation with parenting community powerhouse Ellen of Love That Max. (Yay!) And then our fiery burning BlogHer11 arc flamed out, we crashed, and I for one am still recovering.

How do we do this every year? How could we not?

Mali the More-Than-an-Imp

2011-08-25T22:35:00.002-07:00

Our girl is so much fun -- and so much work. Consider this photo: This is her at last week's soccer camp. This is her reaction to winning "Wackiest Player" during the final day's award ceremony, for her Pirate Kitty Soccer Princess getup. When she got up to receive the award in front of all the parents and all the campers (and a very, very, very patient Leo and Iz, both of whom made it through the entire 30 minute ceremony with minimal complaints), her reaction was not the "thank you" that has been modeled and prompted and used for most of her 6.5 years, but a swanningly dramatic and rather entitled "FINALLY!" (The earth declined to swallow me up, much as I begged it to.)

She has spent most of her first week of school being a spy, laying out a stealth-friendly (all black) wardrobe, plus notebook and pen on official Spy Days (MWF). This idea she came up with on her own, though I have since downloaded Harriet the Spy, and we are listening to it in the car -- which I am now thinking might not have been a great idea as Mali is a little too intrigued by the idea of a spy route and listening at doors. However her school spy routine is on hiatus for now, as her first attempt at enlisting a confederate did not go well -- said confederate went rogue and promptly revealed Mali's spy plans to all the potential victims (the principled little weasel!). Plus Mali lost her notebook (which, thankfully, did not have her name on it -- she was crafty enough not to make that mistake).

Her "high-spiritedness" has already come to the attention of her teacher -- by the time I introduced myself to Maestra Atmósfera today, she let me know -- very pleasantly -- that she had already consulted with Mali's previous teachers about best practices for handling our girl. And that Mali had already spent time at the "Thinking Desk." Sigh.

But not all is amiss at school. As we walked across across the campus and back to our car, children and adults kept calling out to her, saying goodbye or wanting to make plans. She turned to me and said with satisfaction, "Everyone here LOVES me!" I told her that must feel great, but that it's important to deserve and and reciprocate that love. We are definitely reading A Little Princess next.

And her very first piano lesson with the kindly Ukrainian piano teacher who has always doted on her went well. Mali's hands are small but strong, and she has an innate sense of rhythm. (Iz, whose spot Mali took over, has graduated to the more serious Russian instructor, as did her life-long friend Merlin). I was worried about Mali being defiant or grumpy, but perhaps her love of music (and love for the instructor) will prevail.

I don't know what we'd do with dull children, but sometimes I feel like we're living the parenting version of that never-actually-authenticated-as-Chinese proverb: "May you live in interesting times."

Leo the Imp

2011-08-24T07:08:00.064-07:00

Yeah, that BlogHer '11 post is coming. I've been sick with a swallowed-broken-glass sore throat and undulating fever, plus busy writing posts for BlogHer on the increased autism rates for infant siblings (Mali was a participant in the cited study, and if you forgot what a cute baby she was this post is worth it for the picture alone), on the guilt of vacationing in the San Juans without Leo even though our boy was having the time of his life at camp, plus transcribing Ari Ne'eman's thought-provoking keynote from Syracuse's Neurodiversity symposium, for TPGA.

Also my dear brother called and asked whether I couldn't please tone this site's profanity down, as Leo's cousin Patrick enjoys reading about his cousins but his dad does not enjoy explaining why it is okay for Auntie S to curse like a longshoreman but not his son. Apologies, brother, It'll have to wait until tomorrow. Because I want to talk about some excellent things Leo did, and expletives are involved:

Leo loves donuts as much as his mother does, possibly more. And sometimes he perseverates on not being allowed to acquire them. Which is understandable. And sometimes I am an imperfect mother and I lose patience. Which is why, instead of telling himself repeatedly, "We're not going to get a donut today," he recently spent a day reassuring himself, "We're not going to get a fucking donut today." #badmom
His newest stim is crumpling paper with his hands or feet; he loves the way it feels and sounds. We have an excess of paper in this house, so he is all set. We have to watch out, though; last week while we were running non-donut errands, I asked him to show me what he was playing with -- and it turned out to be the check I'd left on the counter for Tricia, the woman who cleans our house. Whoops.
When we all went to Iz's school to check the eighth (8th!) grade class lists, we ran into a friend of Iz's that we don't see all that often. But Leelo went right up to her, pushed her shoulder, and said, "No pushing Nelly!" (Motivation? I suspect due to her being a cute girl.) Nelly laughed it off because she knows Leo, but I was extremely pleased after the apologies were handed out -- Leo recognized her! He has a really hard time distinguishing between acquaintances' faces! Go Leo!
Leo got dragged to Mali's school reg day for second (2nd!) grade because the sitter I'd scheduled was sick. Our boy was a good sport at first, but soon became vocally displeased. (I really should have asked to cut the long line, but I am a pussy who deals badly with confrontation.) We stuck it out, and he did really well, and I thanked him for being so patient. When we finally got to the front of the line, the woman who was checking our forms looked at Leo and looked at me, and said with a smile, "He's doing great!" No "Oh, poor guy," not even a "this must be so hard for him" (which would be true but I'm not a fan of pity). Nope. Just a friendly acknowledgment that he was there, and that he was trying. It was perfect.

Leo starts fifth (5th!) grade today, his sisters started school two days ago. He's had a summer good run, what with surfing and camping and hiking and ziplining and swimming in the pool and hanging out at the beach. But I think he'll also be happy to get back to his wonderful school routine, at his wonderful wonderful school.

Parents and Self-Advocates: Be All(ies) That You Can Be

2011-08-18T02:42:00.005-07:00

When folks I like and whose brains I respect go after each other online, it's like coming home to find my favorite roommate smacking around the person I'm dating. So you can imagine how dismayed I was to to see Ari Ne'eman and Robert Rummel-Hudson at public loggerheads. Especially Robert and Ari. Why?

Two weeks ago, I was at the BlogHer conference in San Diego, speaking on a special needs miniconference panel alongside Robert. His talk was clear-eyed and inspiring -- he pushed everyone in the room to acknowledge that disability rights are civil rights:

I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart.

While I was ruminating on Robert's call to action, neurodiversity journalist and author Steve Silberman called to let me know that Ari Ne'eman's keynote speech at Syracuse University's Neurodiversity Symposium (an event about which I'd been whining, since I wanted to go but couldn't be in California and New York at the same time) was truly wonderful, needed to be shared more widely, and did I want a copy of his audio*? Oh yes, I did.

Ari's talk is indeed a must-listen; he spoke eloquently and forcefully about the neurodiversity/autistic self-advocacy movement, stating that:

"...it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and that disability rights is an outgrowth of the civil rights movement."

To be clear: Ari and Robert, on the same day, were both publicly championing disability rights as civil rights, were spreading the word that the "concerns" of the disability community are actually human rights, were demanding not just the attention but the respect of every last person who could hear and spread their messages.

These are men who are primed to be allies. These are men who need to talk to each other.

Because, honestly, there are enough jerks outside our community, holding their paintball guns of self-righteousness aloft, shaking them and yelling at us to shut up about disability rights, getting pissed off when we shame them for verbally disrespecting us or our children, complaining about "all the money" neurodiverse and disabled kids and adults suck from the system. Turning those people around, that should be our battle.

And yes, there are people from our community who should be fighting alongside us, who should be cheering Robert and Ari along, who really, really are not. And while that is a shame and I have no problem calling out people like Jenny McCarthy whose specific actions derail our efforts, my hope is that through firm, vocal, and positive role modeling, such people may come to see the error of their mindsets and stand alongside us.

But then there are -- again -- people like Robert and Ari who are already on parallel paths, with the same or similar goals. Oftentimes what separates them is not ill will or disrespect, it's lack of each other's contexts. As I said at the BlogHer miniconference about my perspective as a parent:

Most of us have not done this before; as parents, most of us came from outside the special needs community. We have to learn everything from scratch. And after eight years of blogging about Leo and his autism, I came to realize I have learned so much from all of you, from Leo, from the professionals, from the adults who have autism -- and I so wish I had known everything I know now at the time Leo was first diagnosed. How amazing would it have been to transplant my current brain into my body in 2003?

We need to recognize the difference between genuine ignorance versus willful ignorance -- you can usually do something about the former, with enough patience and perseverance. When I started out writing about my Leo and his autism in 2003, I had very little context about people with autism; I was genuinely ignorant. I wasn't evil or malicious; I was underinformed -- I just hadn't had any exposure to Autistic self-advocates.

Thankfully the self-advocates I correspond with most frequently -- including Carol and Corina and Lindsey and Rachel and Landon and Val -- are mostly patient with me when I stumble in writing about or otherwise characterizing autism and disability issues. They usually treat me the same way I try to treat my kids -- they take a positive approach, and tell me what they want to see, or ask me if my omissions of perspective or content were intentional -- rather than lambasting me for what I may not yet know or have considered. And they mostly listen to my perspectives and advice, too. (As much as anyone does -- I am tangent-prone.)

I'm not saying everyone in our community has to agree all the time; that would be dull. But I am asking us to treat potential allies with respect, and have some patience with each other -- because we need each other if we're going to catapult Ari's and Robert's civil rights agendas into the mainstream where they belong. As Robert said at BlogHer:

"... for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud."

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*Excerpts from Ari's keynote will be posted on the Thinking Person's Guide to Autism tomorrow; you can view the webcast at neurodiversitysymposium.wordpress.com/210-2/. Thanks again to Mr. Silberman for his exuberant generosity.

BlogHer11 Geekery

2011-08-15T21:08:00.002-07:00

Making fun of the Bieber for Mali
(Mali loathes the Bieber).

Every BlogHer11 day meant packing in months' worth of fun, geekery, learning, and camaraderie. Months' worth. It was like watching the TV show ER with my mom the emergency room nurse (the show's early years, before it sucked), asking if working in the ER was really like that, and having her respond that well, yes, mostly -- but over weeks and months, not in a single hour. My goal is to post my official conference wrap-up in two days, but until then here are some fine BlogHer11 geek pride moments.

Best t-shirt of the entire conference, worn by Chris Page. If you can't read it, it proudly declares, "I was a Mac developer when Apple was doomed."

Liz Henry, highly amused by the elevator signage and its location.

My official Wolverine photo! I was fierce at first, but at this point am about to giggle uncontrollably. Still, being Logan ruled. A conference highlight.

More BlogHer coming! It really was several months' worth of living in 2.5 days. Exhausting. Wonderful. Repeat those two words indefinitely and you'll capsulize my life.

TPGA at BlogHer11 Special Needs Minicon

2011-08-12T10:32:00.000-07:00

BlogHer11 Special Needs Minicon panel: Your Truly,
Aurelia, Rob, and organizer/moderator Julia.

I'm on The Thinking Person's Guide to Autism today, with a cleaned-up version of the talk I gave at BlogHer11's Special Needs mini-con about awareness and community building, using TPGA as the example. Here's an excerpt:

Personally, I'm pretty pissy, just so you know. I'm grumpy. I'm easily irritated but I'm also able to prioritize and I think the community is more valuable than I am [all our editors do]. And as a result we've had amazing learning experiences, because we've made learning and listening more important than defensiveness. Even though it can be really hard, especially if people attack you personally -- it's hard to just say, really? Especially when they're talking about your son or your child or your parent or somebody you care about or something that's a really deep emotional experience, it's hard. It's hard to stay cool. This is something that took me a really long time to learn.

But it's so valuable. These are the communities that deepen into places where people really value their experiences. I can't tell you how amazing it's been at The Thinking Person's Guide to Autism -- it's an experience I never could have anticipated.

More BlogHer coming! Including cooking with three star Michelin chefs!

Leo Caught a Wave with Surfers Healing

2011-08-11T00:38:00.002-07:00

I think we're going to have to move to San Diego. Or Hawaii. Somewhere Leo can be in the waves every day. Leo's San Diego vacation week started with him staying up until 1:30 AM, stimming, vocalizing unhappily, physically out of sync*, asking to go home. Now that he's been to the beach every day for four days straight -- topped off with a session with a gold-standard, intuitive local ABA therapist -- he is talking a blue streak ("I don't have lemonade; I have a shirt!"), physically in sync, happy, balanced -- and his constant requests is to go to the beach, not back to our [four year old] "New House."

Leo got to have a hell of a "go to the beach?" day today, thanks to the luminous Autism Supermom, whom I got to meet at BlogHer, and who invited us to today's Surfers Healing surfing event!

I had heard about the organization before and about how wonderful it is for the participants, and Landon at ThAutcast recently wrote about The Swell Life, an Oprah show about the Surfers Healing founding family -- but I'd also heard it was near-impossible to get in, and our trips to San Diego aren't always planned in advance, so I never imagined Leo would be able to join up.

I know I overuse the phrase "best day ever," but when you have a kid like Leo -- a kid whose whole life is about how he keeps topping himself -- we have a lot of best day evers.

SURFERS HEALING WAS THE BEST DAY EVER.

Leo was thrilled from the moment he walked into the waves with his team (above). Then he rode out to the waves with his surfing buddy. Seymour and I sat on the beach, remarking on much Leo must be loving bobbing on the waves on the surf board, and how it wouldn't be long before he slipped into the brine.

It wasn't long, not at all.

And then ... Leo was back on the board. And the board was riding on a wave.

And then ... Leo did it! Our boy surfed!

It was so awesome. Leo came bounding out of the surf, bursting with the kind of giddy glee that is usually accompanied by prancing or the shooting of cannons. Widest grin ever, with giggles plus peals of laughter. So, so happy, our boy.

You can't quite see the happy here, because we had to make him come out of the water. But the momentarily absent happy is reflected in our faces, because when Leo's happy, we're happy for him.

You can see some of the happy, below, as he lolls in his beloved surf.

So proud of Leo. So grateful to Surfers Healing and Autism Supermom and all the amazing volunteers and excellent families and our community that makes such things happen.

So happy.

*This is a euphemism, people.

My Kid Fucking Loves the Beach

2011-08-09T23:16:00.001-07:00

Leo would grow roots on the beach by my mom's house if only he could. It takes a forced extraction or an abrading tumble to get our boy out of those waves; otherwise, he seeks Zen-style oneness with the surf.

Seriously, look at this boy. He's found his spot. He is calm, centered, and full of self-directed happiness. We may need to spend more time here in San Diego, for Leo's sake (the rest of us would learn to tolerate it, somehow).

The girls each had milestones today. Iz spent the day with her dad at the Vans Warped tour and got to see her favorite group Paramore, and witness exuberantly trashy-mouthed punks play music that, according to Seymour, mostly failed to distinguish bands from each other.

Mali, well, she's going to be hitting up a certain fairy when we get back home next week. I am biased, but FUCK YEAH TEH CUTE.

Any expletive-generating events in your realm today?

Post-BlogHer 2011 Beach Tour Begins

2011-08-08T23:27:00.000-07:00

Decompressing from BlogHer11 at my mom's cold, overcast, but still excellent beach.

Leo never got tired of wave-frolicking, nor of asking to "go surf." (the water was frigid and the waves were breaking fast and hard; I stuck to the upper splash zone while shouting encouragement to our brave, lower splash zone boy).

I remain very tired from BlogHer and suspect I'm not the only one; full dispatch by the weekend. Until then you can check out the LiveBlog from our BlogHer Special Needs mini-conference, but be warned: our co-presenter Robert Rummel-Hudson declared that the transcript makes him sound like he has a head injury, and most passages are similarly garbled. But hey, good keywords! And the audio version should be up soon.

BlogHer11 Pharma Shills!!

2011-08-06T12:27:00.000-07:00

Jennyalice and I are finally coming clean: WE ARE PHARMA SHILLS!*

*Disclaimer: Jen and I are not actually associated with Pfizer in any way, other than trawling their BlogHer booth after a night of "festivities" for free Advil samples and getting out pictures taken. Thanks Pfizer!

BlogHer11!!!

2011-08-06T09:12:00.000-07:00

Best moment of many best moments: Getting to be Logan. Hey, I'm 5'3", too. Though my claws are made of keratin, not adamantium. More coming!

16 Years of Wonder, with Big Sur Yurts, Sand Dollars & Condors

2011-08-02T23:33:00.000-07:00

View from our campsite (click to enlarge)

I wouldn't mind waking up to this view every morning. It's standard stuff at Treebones, the southern Big Sur yurt-lovers' mecca where Seymour and I spent our 16th anniversary (you can see some of the yurts in the upper left corner).

And I wouldn't mind seeing California Condors again -- in a once-in-a-lifetime bird sighting overload, we came across 12 condors in 20 minutes. Seymour, life-long birder, did a happy dance when he spied eight of them just north of Point Sur. Then we saw another group over Bixby Bridge and he almost fell over. We did try to let a few of the understandably Bixby Bridge view-spellbound tourists know how privileged they were to see these rare, rare, wrested-from-the-brink-of-extinction birds, but mostly met with the tight smiles recognized by enthusiasts of all stripes. Fuck those tourists, man. WE SAW CONDORS, YEAH!

I also wouldn't mind spending every possible sunset at the jade-encrusted, sea critter and -weed festooned littoral playground that is Sand Dollar beach. Oh, heaven.

Sunset at Sand Dollar Beach (click to enlarge/see panorama seams)

And I'm grateful for every moment spent and every moment I'll get to spend with that man of mine, whether he's gifting me decapods of unusual size,

Agreeing that yes, this seaweed bit and its shadow do look just like a giant squid atacking a sperm whale,

That found seaweed arrangements can be exquisite,

That evidence of metamorphic geology should be fondled when possible,

And that life should be lived with gusto, appreciation, and approached with constant curiosity -- while keeping one's eyes open for Perseids (we saw several on our clear moonless star-spangled nights), condors, and all the miracles that surround us in Big Sur and elsewhere -- as long as we're paying attention.

Singing Fingers: An App For Free-Form Music & Art Lovers

2011-07-31T11:59:00.001-07:00

Have you seen the 2008 video of Baby Jonathan's reaction to his new cochlear implant? His double-take of surprise and delight is the closest reaction I've seen to Leo's reaction to the free app Singing Fingers, which lets our boy "finger paint with sound."

Leo adores music. Adores it. Like a lot of kids with autism, he can also use it to extend the length of his expressive and communications -- i.e., he can say and repeat longer sequences while he's singing.

He also finds music immensely soothing. We sung him to sleep for years, we still play him pre-bedtime tunes on the pennywhistle. And we still use music to help him calm down and communicate when he's agitated, or help him get those stubborn, elusive words out (like many people with autism, his word retrieval skills short-circuit when he's upset).

For the last few months, Leo's been favoring a sung arpeggio. Sometimes we just use it to sing his name; other times, we'll sing the first part of a sentence, and he'll complete both the arpeggio and the statement -- often with those words that wouldn't perform for him in a non-musical setting. It almost always helps, or makes him feel a smidge better. It's the musical equivalent of a lovey or blankie.

And that is why he did the strongest double-take I've ever seen him give when I sat him down with Singing Fingers for the first time, and had him play with the painting above -- into which I'd recorded his eponymous arpeggio. I didn't capture that moment -- it happened so fast, and with so much more intensity than I'd anticipated -- but you can still see him going through and playing with the sequence in the video below.

Singing Fingers is one more example of creative app developers enabling kids to explore their strengths -- music in this case -- in ways I'd never imagined possible, without imposing a literacy or language barrier. The app also encourages Leo (a sub-vocalizer like his mom) to project while talking and singing, because it requires a certain decibel level for the "paint" to take.

Another highly, highly recommended app.

Many thanks to Luna & Dawn for showing Singing Fingers to me!

Bieber Battle!

2011-07-29T17:44:00.000-07:00

Mali loathes the Bieber, but her friend Lucy thinks he's dreamy. Watch them battle! In public! Using Bieber doodles drawn on Costco pizza plates! With Jennyalice as referee!

<br>S

(As so often happens, life is good but thoroughly overwhelming and this is about all I can process right now, folks. Have a great weekend.)

Developing Apps that Avoid Special Needs Penalty Costs

2011-07-25T11:38:00.001-07:00

Special needs penalty costs really bother me. Why should families pay $75 for a special sit-upon therapy ball when we can get the same damn type of ball (or sometimes, a better one) from Target's yoga or Pilates section for $29?

And now, I'm seeing this same penalty with special needs apps for iPads and other devices. Why are we so often asked to pay more for "special needs" apps than those with similar functionality, just because those apps are developed for special education or special needs -- especially when some don't have the top-notch interface or design to merit the extra costs? So I had plenty to say when a Mercury News reporter called me up last week as a source for the article Using touch screens and apps to treat autism. Here's one of my quotes:

"Right now it's kind of a Wild West in terms of app development," [Rosa] explained. "A lot of people who have experience with kids with special needs are putting out apps. They have great ideas and great content, but unfortunately they sometimes have clunky designs and clunky interfaces."

And that's true, but that's not the full story. Here's the comment I left, to clarify:

The special need professionals who develop apps have a wealth of talent and experience that traditional developers should tap, because they can repackage most apps for kids with special needs as early learning apps for typical kids. Then these apps could have top-notch UIs and design, and wouldn't need to have the special needs penalty costs attached to special needs apps due to developers anticipating a limited market share.

It's absolutely true. I'd love so see more developers enlist the speech therapists, occupational therapists, behaviorists, special ed teachers, and parents who are making such fantastic (if sometimes rough-around-the-edges) apps, and bring them into the fold. In an app development environment that expects developers to produce new apps every six weeks, why not do what software producers have been doing for industry aeons -- take the special needs apps' chassis and content, rework them as "early learning" or "toddler" or whatever typical developmental age range is suitable, and release them for that market as well? You'll make more money! Then you can reduce the cost of the special needs apps, ideally.

Some of this collaboration is happening already. Dawn Ferrer and Luna DeCurtis, the SLPs (speech therapists) and innovators behind the language-encouraging app That's Silly attended the May 2011 Dust or Magic children's app development camp in Monterey, and found themselves surrounded by other developers who were fascinated not only by the two women's professional knowledge, by also by how they and the children in their practice use apps to learn and play. I hope those developers were able to incorporate that what they learned from Luna & Dawn into their next wave of apps.

And not all special needs professionals-turned-developers need hand-holding. Dawn & Luna's app That's Silly ($.99) is an exemplary boundary-defying early learning app. Kids can play with it by themselves, choosing nonsensical scenes of various complexity levels to compare with the more typical version of the same scene (e.g., in the screenshot on the left, you can swap out the girl's sandwich for a bike). Parents can play with their kids, eliciting language. And the buttons at the top of the screen allow both parents and professionals to track kids' responses, if desired. It's simple, flexible, beautifully illustrated, and fun. I hope other app developers are taking notes.

Another recommended, special needs-supporting but not special needs-specific SLP-developed app is Milo: Interactive Storybook ($1.99) from the Speech With Milo (www.speechwithmilo.com) series. From the app description:

Speech with Milo is focused on developing language skills in children. Created by the licensed Speech-Language Pathologist that brought you five other language apps, to build storytelling and narrative skills. The interactive story book allows children to build skills by telling the story on their own. You have the option of reading and listening to the words that we provide, or you may create your own story. You can turn off the narration and words to create your own story with no distractions.

So, again, here we have an app that succeeds because it is special needs professional-developed, rather than special needs-specific. My six-year-old, Mali (who could use more facility with suppressive rather than expressive language) thinks Milo: Interactive Storybook is fabulous because of its story, and because she likes playing with the interactive items on the screen and creating voiceovers. Whereas her brother Leo, who has limited expressive language, likes the app because it includes recorded voiceover, so he can "read" himself the story.

Note that neither Milo: Interactive Storybook nor That's Silly costs more than two dollars. And with both apps, kids of varying needs can learn, and have fun. Everybody wins.

This is how all apps should be.

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Disclosure: I was given a promotional code for Milo: Interactive Storybook, but all opinions expressed in this space are my own. As always, I only write about the apps I think are worthwhile.

Spot the Dot: A Fantastic Social & Joint Attention App

2011-07-24T13:46:00.001-07:00

I've always loved how Leo's iPad is a social magnet, attracting kids and parents to him by virtue of its much-trumpeted-about coolness. But apps that actually encourage people to interact with Leo (for whom autism means language and social interactions are challenging) -- as opposed to apps where let folks stand by and watch Leo kick iPad app ass -- those are rare.

Spot the Dot ($3.99) is an exception, and an app I recommend heartily. When Leo plays Spot the Dot, bystanders from ages 3 to 73 flock to our boy's side, talk with him, and cheer him on. It's delightful to watch, especially since Leo's been having a rough time lately, with fidgety behaviors that sometimes make folks in proximity uncomfortable.

In Spot the Dot, the user clicks through a series of screens in which a single elusive dot must be located, a different colored dot each time. Spotting the dot get trickier with each screen, as the visual environment becomes more complicated. It's harder than it sounds, especially on that last, white dot screen!

It's really fun to watch Leo use his excellent visual discrimination and pattern matching skills in varying environments. And he thinks the app is fun, too, as do all the folks who play the game with him, ask him if he can see the dot, ask if he thinks the dot is next to XX shape or XX color, and (even) beg him for a turn. These are the kind of interactions that, as an autism parent, I spend all day long trying to coordinate and cajole. But with Spot the Dot, they're happening spontaneously!

Spot the dot also exemplifies good, solid, simple, powerful app design. Literacy is not necessary -- users can click to any screen at any time by selecting that same-colored dot from the bar atop the screen. Every dot's screen has an intro with both text and voiceover direction that tells the user to "Spot the XX dot," while the "o" in the word "dot" is the dot color in question. Leo doesn't need help to use the app, which I always appreciate.

Highly, highly recommended.

Disclosure: Ruckus Media gave me a promo code for Spot the Dot, two months ago. But, as always, I only write about the apps I feel make a difference or are worthwhile for Leo and our family.

Carnivorous Interlude

2011-07-22T13:56:00.001-07:00

Sometimes, when life overwhelms, I check out, chill out, and stare at our carnivorous plants.

(I recommend clicking on each photo and then zooming in, if you can.)

Sundew! We have at least four different kinds.


The plants are all tiny, as plants adapted to atypical nutrition sources often are. (Those white strings? Cat hairs.)

Those black blobs? Ants. Dead ants. Just like the Pink Panther song.

Some of the sundews unfurl like Predator aliens' mandibles.

And of course we have pitcher plants.
The pitchers make flies' death-throes buzzing really resonate.

And of course Venus fly traps! We probably tease them too much,
tickling their insides with more of those cat hairs to make them close.

It's been a good week, just a busy one. Seymour launched his new Quest site, it's awesome, that marks the end of several really long weeks for him; I was interviewed by The Merc about autism, apps, & iPads (more on that later); and I also interviewed the superlative-worthy Babymouse and multiple-Newbery Honor winner Jenni Holm for BlogHer. And the girls went to their first ever camp together, complete with sleepover last night, and Leo's feeling more like himself. But life is always busy. So until I can kick myself in the pants enough to follow Laura Shumaker's excellent advice on managing parental (especially autism parental) stress as posted today on the Thinking Person's Guide to Autism, I'll be hanging out with the carnivorous plants. A lot.

Songify: The Best App for Torturing Siblings

2011-07-15T13:34:00.001-07:00

Mali is an imp. There is no pussy-footing around the label. Today's example:

Our entire family minus already school-bound Leo drove down the hill this morning, to get the girls to their camp bus and Seymour to the CalTrain. On the way, Iz demanded the iPad Mali was playing with. Mali was cooly disobliging in her uniquely needly way, which resulted in shrieks from her easily triggered older sister.

Seymour and I tried to talk Iz down, but she became locked in a cycle. And then, the worst: Without saying a word, and while her parents were engaged with her sister, Mali unleashed a Songify (spoken words to dance tune) track she'd been recording on the iPad: of Iz's shrieking.

Iz went thermonuclear.

Seymour and I should have told Mali that what she did was wrong and unfair, but we were paralyzed with suppressed laughter while tears ran down both our cheeks, and had to wait until the car's interior mushroom cloud dissipated before we were able to tell our youngest that while what she did was indeed funny, it was also mean. Even Iz came around eventually, grudgingly, plottingly. I doubt her revenge will be as subtle as her sister's infraction.

That Mali. OMG.

Some People Are Gone, Some People Just Aren't Coming Back

2011-07-14T13:40:00.000-07:00

My dad introducing Leo to FDR

Leo has a hard time letting go of the people he cares about. And he's lost a lot of important people in the last few years, due to natural cycles (therapists), divorce (a distressing number of friends), and, yes, death. He keeps asking for them all. Years later. Often out of the blue. Because my son's elephantine memory and communication skills are often out of sync. But I think he's staring to understand the distinction between people who are really gone, and people we just don't see anymore.

Last night he announced, randomly, that "Pepere is not here. Pepere is coming tomorrow." (Pepere being my dad, who died in 2006.)

I responded, with a hitch in my voice, "No, baby, Pepere is gone. Pepere is not coming back."

Then Leo said, "Scott is all gone. Scott is NOT coming tomorrow." (Scott being one of the divorce casualties, as well as one of Leo's favorite people.)

I said, "No, Scott is not all gone. We might see Scott again."

Leo paused. "Pepere is all gone. We'll see Scott tomorrow."

Maybe, Sweetie. I hope so. I really miss Scott, too.

And I have to admit, Leo's considering that my dad may really be gone makes my heart twist, because as long as Leo didn't accept it, part of me didn't have to, either.

(I may sleep with a copy of Dale Carnegie, my dad's social skills bible, under my pillow tonight.)

iPad Workshops, Drama, and Songsmithing

2011-07-13T00:30:00.001-07:00

What a day, in terms of iPad news and events! First I got the official listing on the iPad workshop I'll be giving on September 14th for Parents Helping Parents in Santa Clara:

How iPads Can Help Children With Autism Learn and Play

Shannon Des Roches Rosa leads this in-depth workshop on how iPads can be a dynamic and cost-effective learning, therapeutic, and leisure tool for autistic children and adults. She will also discuss fundraising, research, accessories, and -- of course -- apps.

If you're considering an iPad for your loved one with autism, already have an iPad but aren't sure how best to maximize its potential, or just want to talk about all things iPads & autism, this is the workshop for you!

Come! Please! It'll be fun, and ever so educational. Plus you can geek out with a bunch of other iPad enthusiasts.
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Then I got a ping from my most excellent BlogHer editor, asking if I could turn around an article on the Marissa's Bunny Missing iPads debacle in under two hours. I am not usually a fast writer, which made the assignment a yipes as well as a must-do. But I'd also been talking about the matter over the weekend with one of my favorite people, Ellen of Love That Max, and so had a bit of a head start. Here's my article's intro paragraph:

I spend yesterday morning at a local university, participating in an autism study. Part of the study was an interview about my experience as an autism parent -- including whether there were any benefits to my son Leo's autism diagnosis. "Absolutely," was my immediate reply, "We have become part of an amazing community -- full of people who support, understand, and trust each other unreservedly." But what happens when someone in our special needs parenting community abuses that trust? That's what many of us are worried about, after the Marissa's Bunny Foundation solicited donations from parents of kids with special needs for the chance to win iPads -- and those iPads never materialized.

For more information, Kristina Chew dubbed the situation "iPadgate" and covered it at Care2Causes. And Ellen's original post includes more than one update, plus extensive comments (160+ as of this writing) from parents attempting to analyze the matter, and a number of from Marissa's dad attempting to explain (if you're kind) or spin (if you're a skeptic) his position. I hope there's a way this can play out, other than wretchedly. And I hope none of this negativity affects Marissa herself, or interferes with her family's ability to support her.

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But far the best iPad event of the day was making music with Leo, using the free app Songify. All you have to do is say something -- anything -- into the microphone while Songify is recording, and your words will instantly turn into a song! The app comes with a few modes, and you can purchase more (which we might) but Oh My Goodness does this app motivate Leo to speak loudly and at length! The only problem is Songify's instant-addiction factor. Perhaps one day I'll share my "Maps, Giant Squids, and Carnivorous Plants" track with the world, but for now please entertain your self with Leo's own creation, "Pizza Please," and enjoy the satisfaction of championing a cool tune before it lights up the Internet, and comes to the attention of the less-cool.

Leo the Lightning Bug App!

2011-07-12T15:34:00.000-07:00

We are unabashed fans of Oceanhouse Media, the developers behind the interactive Dr. Seuss books apps Leo loves so very much. So we were tickled to find out that their latest interactive book app, just released today, is called Leo the Lightning Bug (introductory price: $2.99).

Any book with Leo in the title makes me happy not just because Leo is the very best name, but because our boy responds to books with his name in them. The app is also cute as, well, a bug, and has a story that any kid who has ever felt they weren't good enough will identify with:

Written by Eric Drachman and illustrated by James Muscarello, Leo the Lightning Bug captures emotions many children feel growing up. Leo is “the littlest lightning bug of all” who can’t seem to make his own light. Despite other lightning bugs teasing him, with determination, motherly support and a little luck, Leo eventually lights up in the night. With his newfound confidence, Leo now laughs at himself, plays with the other lightning bugs and enjoys a good night’s sleep.

While our Leo enjoys the app thanks to Oceanhouse Media's thoughtful use of consistent interface navigation -- it works just like every other one of their books -- his little sister Mali has become a big fan. She even found the app in the "to review" folder I'd hidden it in, and told me the entire story before I'd had a chance to read it myself, or with Leo!

Leo the Lightning Bug is a very sweet story for any kid, and (again, like other Oceanhouse Media titles) had the click-each-word-to-hear-it-read-aloud functionality that is especially useful to kids who, like my own Leo, are not yet fully literate, as it allows them to "read" books to themselves.

I hope your child enjoys this book, whatever their wonderful name may be.

Our Leo's other Favorite Leo books, for the record:

Leo's Tree More sweetness, as a boy named Leo and his tree grow up together.
Good Night, Leo A "Swashbuckling adventure" as another Leo says good night to each item in his pirate costume. Good modeling for step-by-step transitions!