1.30.2012

Four Damned Amazing Interviews

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. 

1.28.2012

iPads & Autism Workshop in a Can

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




“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

iPad Protection – Insurance, AppleCare, Loss

  • All iPads come with 90 days of phone support & one year limited warranty
  • Insurance (3rd 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!


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

1.25.2012

A Case for Your iPad

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.

1.23.2012

Pizza Anxiety

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!  )

1.22.2012

SF Locals: Camp Azure Fundraiser Concert Feb 18!

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

1.16.2012

Thirteen

IMG_6504.JPG
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).

IMG_6478.JPG
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.

1.10.2012

Happy New Year, Cephalopodistas
















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?

Finding Funnel Chanterelles!

India With a Destroying Angel

Kids at One of Salt Point's Coves

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