Leo's World: in MacWorld

Leo and his iPad were featured in MacWorld, PCWorld and a bunch of related sites a couple of weeks ago -- something I completely forgot to mention here on the blog. The articles focus on how the iPad has helped Leo become more independent in his learning and play, and why it is so motivating for him. Here's an excerpt from the article:

"The iPad, [yours truly] said, has changed Leo for the better, making him more independent. And she’s quick to point out that he’s still an 11-year-old boy who deserves to play sometimes, which he also does on the family’s iPad."

The articles also feature the video below, which documents slices of our family's afternoon routine. I go into more detail in the video about the features of the iPad that entice Leo, and how his attention span has increased as a result. I also talk a bit about parents' expectations of having a perfect child, plus how it's often Leo's sisters who make parenting challenging for me -- not Leo. And, of course, I acknowledge that we have a great life.

Leo was having a rough day when the video was filmed, but the reporter was able to capture a balanced portrait. There is also much Mali mugging. Overall, though, it's a nice snapshot of this time in our lives.

Developing Smart, Simple Social Stories Apps for Kids With Autism

Note: This post has been updated.

All I want for Leo and his also-autistic friends is a simple, smart, well-designed social stories app for around $3.99. But as of now, it doesn't exist. I don't understand why it doesn't exist.

Social stories are incredibly useful tools for folks like Leo: they use clear, focused language and pictures to help an autistic person better understand potentially stressful scenarios, and provide realistic expectations and options. They can be especially helpful for travel, holidays, establishing routines, transitions, or visits to new and unfamiliar places.

We used to make custom social story books for Leo, sometimes through iPhoto or Shutterfly, sometimes just a bunch of printed pages stapled together. But with iDevices and tablets, we now have social stories apps -- which take the social story concept one step farther, with voiceover. On his iPad, my pre-reader Leo can "read" his social stories independently. It's really damn cool, not to mention empowering.

Here's a iPad story we made for Leo two summers ago, detailing one of our family's weekly routines:

Great, right? Absolutely. But you know what is not great and has long made me grumble? The featured app, Stories2Learn, costs $13.99. Its competitor, Pictello, costs $18.99. [updated to add: Pictello features text-to-speech, which is very different than simple voiceover recording, and affects the price point considerably. For more info, see comments.] Similar apps -- like the special education-oriented, custom-content and voiceover-enabled Word SLaPps and Injini's Write My Name -- are $4.99 and $1.99* respectively. Why the price differences? Some of the higher-priced apps are more complicated than the lower-priced apps, but not all. What explanation, then, other than that ever-lingering special needs penalty cost?

With the front-runner social story apps offering more features than many users require, and costing more than many users are used to paying, there's an opportunity for someone else to capture a large, under-served, enthusiastic, loyal, and value-conscious audience. So, what should a potential social stories app developer keep in mind?

To work for Leo and his friends, here are the only functions a social stories app needs:

1. Create/edit story button on home page
2. Upload photos
3. Enter custom text
4. Record voiceover
5. Page through stories by swiping and/or tapping a button/arrow
6. Save stories as graphic icons with text titles, in list or folder format, and place them on the home page.
7. (Optional) Share/upload stories, e.g., to use at school and at home

The interface needs to be smart and simple, in terms of available choices and steps. Any features more elaborate than the list above could be superfluous and confusing -- I just want to make the stories, and Leo just wants to read them. Though a discreet info button for parents/educators/caregivers/authors also wouldn't hurt, in terms of advising about language to use -- short, action-oriented phrases, if-then statements, avoiding pronouns, etc.

Potential developers should look at the striking UIs and graphics of (again) Injini, a company that is in my opinion the industry standard-bearer for simple, elegant, engaging, thoughtful, useful, special needs-friendly kids' app design. Honestly, I'd love to see what Injini could do with a social stories app -- especially as there's no reason the app would need to be limited to the special needs market. Developers could make an app called "My Stories About Me" or some such, and parallel-market it to families of toddlers and preschoolers as a way to connect with family and friend by making stories together or for each other, which would have the extra benefit/hook of reinforcing those reading skills.

I know that folks like Russ Ewell and Pamela Sloan-Bradbury are looking into developing social stories apps. They both participated in  October's Hacking Autism event, where we all observed not one but two groups focusing on social stories -- so I suspect Pamela and Russ are already on the right track, and I have faith they'll do the right thing. I just want them to do it faster!

I want a well-designed, affordable social stories app for Leo, and I want it now. I hope someone will step up.

----

And speaking of social stories apps ... you know what I never want to see again? I never want to see a developer make a choice that completely disregards their users' needs. I'm looking at you, Stories2Learn. Your software upgrade obliterated all of Leo's beloved social stories without warning, stories we'd spent months creating, stories that he returned to for comfort and reassurance and nostalgia on a near-daily basis.

I can recreate those stories somewhat, but as Leo has remarkable visual recall and super-precise hearing, he can tell that the new stories are not the same -- especially as some of the original stories' voiceovers were recorded by non-local visiting friends and relatives so Leo wouldn't miss them so much once they went home.

It's been a few months since the stories disappeared, and I am no less furious than I was upon first discovering they were gone -- especially since Leo is still plaintively paging through the Photos folder where the original social stories apps photos are kept, hoping they'll somehow magically reassemble into the stories he'll never be able to experience again, and misses so much.

I understand that it is not always possible to keep all original features and content when developers upgrade apps -- I'm a former software producer, so I've been in that position myself. But then I didn't make software specifically for kids like Leo, who have so few tools for creating routine and predictability; I didn't wrench away some of those kids' best tools for making sense of this utterly confusing and overwhelming world. Leo and his social stories-loving peers aren't interested in or in some cases aren't able to conceptualize the explanations why their social stories disappeared, they just know that their stories are gone, and they're devastated.

It was a bad choice to let the Stories2Learn upgrade delete existing social stories. A bad decision not just for financial reasons -- customers may have a hard time trusting you again -- but for compassionate ones. I am extremely disappointed.

---

*Please note that app prices change all the time. These prices are accurate as of today.

Autism and Subtle Successes

Mark Rothko, White Center
National Gallery of Art

I visited the National Gallery of Art when I was three months pregnant with my daughter Iz, who is now thirteen. I had never been fond of abstract art, but upon walking into a room full of Rothkos -- experiencing their luminous, subtle color play in person, at full scale, I wanted to fall to my knees and shout, "I'm sorry! I get it now!"

It's like that with Leo. You have to be there, watching, intensely, in person, to understand what he's about. If you focus only on the obvious things -- not speaking much, getting easily frustrated, obsession with food -- you'll miss the little things, the sly things, the actions that reveal not just his capability but his potential.

I love the way he performs many actions, like slipping on his shoes, bilaterally -- both shoes at once. Not one at a time. That's some serious motor planning and coordination. And he does it with ease. Today he read favorite books on his iPad with one hand and twiddled a straw in another, which was impressive enough -- but then he reached out with his foot and picked up another straw with his toes -- and twiddled that, too. I certainly can't do three separate things with three separate limbs simultaneously (though I could make sure that toe-straw went straight into the trash after he was done with it).

He's got a gift for scatting, whether making up his own tunes, or his own variations on favorite songs. You might not recognize Leo's version if you aren't paying attention, as with Cassandra Wilson or Nouvelle Vague. If you sing a run back to him, and if you succeed in doing so to his pitch-perfect standards -- which isn't easy as he doesn't restrict himself to typical scales or progressions -- you'll be rewarded with a huge smile or a tight eye-lock.

He remembers what you say to him. It may take you a while to realize that the phrase he's saying to you is something you've said to him, a saying resurrected because it makes sense in this new moment -- even though you may have originally said it months ago. Why should Leo spend energy creating new phrases when he can store and retrieve yours? "I wear my sweater when it's cold" works as acknowledgment, reminder, reassurance, question, and statement. It's functional language.

He's not above a bait-and-switch. If he asks you for a big kiss, it may be because he wants you to leave -- rather like visitors in Japan being asked if they'd like another cup of tea. Though Leo is not always gracious: Big ask, big kiss, then "Bye bye, Name," and possibly a big shove. But at least you got something out of it, too.

Today Leo started learning how to play Wii. And at the outset, he wasn't all that successful -- not by typical standards of trajectories mastered and points gained. But it was a social experience for him, and he stayed engaged and seemed to enjoy it. I suspect he'll learn to play Wii in his own way, too -- and successfully, to those who have the patience or intuition to understand that atypical does not mean less than. Who know that intelligence takes many, many forms if you take the time to see it, if you can recognize its sometimes subtle signs.

ASF IMFAR Travel Grants - Applications Due Feb 29th!

I was the lucky recipient of an Autism Science Foundation travel grant to IMFAR 2011 -- the International Meeting for Autism Research. The application process was straightforward, and the experience life-changing -- I saw science in action, asked researchers questions in person, reported on multiple studies/presentations for Thinking Person's Guide to Autism, hung out with several incredibly cool people, and was even featured in a local San Diego news segment about the conference.

Lunchmates at IMFAR 2011. Can you identify any?

This year IMFAR is in Toronto, Canada. If you think the $1000 grant could make the difference between attending and not attending, then I encourage you to apply.


 
Details from the ASF website below; the deadline is this Tuesday, February 29th.

----

Apply for IMFAR Travel Grant

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.
Applications must be received by February 29, 2012.
Grant Requirements:

• Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
• Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
• After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

• Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.   
• Grants are awarded to US residents only, over 18 years of age.
• Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.  
• Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, "Arial" font, with standard margins.  
• In the email subject line please write: IMFAR Grant.  
• Letters must be received by February 29, 2012.

Recipients will be announced in late March.

• 2011 IMFAR Travel Grant recipients:
• Geraldine Bliss, Parent
• Matthew Carey,  Parent/Blogger
• Shannon Des Roches Rosa, Parent/Blogger
• Mark Fornefeld, Self Identified Individual with Autism
• Abby Hare, Graduate Student
• Erin Lopes, Parent
• Molly McGrath, Self Identified Individual with Autism/MIT Media Lab
• Brianna Miller, Special Ed Teacher, Newark Public Schools
• Sharman Ober-Reynolds, Parent/Senior Research Coordinator, SARRC
• Megan O’Boyle,  Parent
• Max Rolison, Undergraduate Student

Polar Bear Plunges and Other Changes in Routine

Breaks are always interesting for Leo. His school prefers for doctor visits to happen outside school times, so I tend to pack non-school weekdays full of medical appointments. And outings! The former are generally tolerated with mild to moderate protests, the latter are tolerated and often enjoyed -- but all are discombobulating because Leo's off routine, the constants that help keep him oriented are elusive, and anything different is bad.

How much more disorienting, then, to have a sudden heatwave in the middle of a "ski week" break, as we did today? It was 80°F in our town! The heat upended the weather constant, and had Leo all done with being at the mercy of caprice. He demanded that he be afforded the privilege that usually accompanies warm weather: a dip in the pool. So what if it is February! He is also not one to risk the whims of his capricious mother: he got himself into his swim gear before I could tell him no.

I opened the pool, figuring it would only take one toe in that icy water and he'd be back in the house -- but no. He and his not-to-be-outdone little sister spent a good half hour jumping in and out of the pool; both even jumped in fully a few times.

Leo's a tough kid, it takes more than a Polar Bear Plunge to scare him away from one of his favorite activities. And he demonstrated more of his increasingly characteristic tolerance today by letting the ophthalmologist examine his eyes with an auto-refractor machine, which he's never done before. Yesterday he let his dentist give him a relatively thorough exam without me needing to sit with him too. Years of practice and years to mature, they make a difference for our boy.

He's put in his time with the medical community; tomorrow we'll start the outings. Tomorrow we'll be going to CalAcademy, Friday I'm hoping we can hit Muir Woods. And then Monday Leo will head back to school, and all will be well -- or at least predictable -- in his world.

People Who Matter

I am grateful for calm, quiet, days like today. In which my kids and I get to hang out with lovely people like Rachel, who will walk with us in redwood forests, and stop to take pictures of fallen-tree -loving fungus:

And wait, not cajole or prod, while we encourage Leo to sit for a picture:

Who have the patience to look for pebbles at the beach...

And hopefully not laugh too hard at me when I try to get Leo to tell me what color these pebbles are, while he -- so done with answering silly questions that he knows I know he already knows -- will cheekily and consistently tell me the wrong answer three times in a row.

And who doesn't give Leo a funny look while he's enjoying the pebbles in his way.

And who is just damn fine company.

We can be an overwhelming crew, but I hope we weren't too overwhelming today -- that we weren't just taking. Sometimes, in our quest for pleasantness, we're not always aware when things become less-than-pleasant for those caught in our gyre.

----

Update: Completely forgot to mention Leo using novel language -- honest-to-goodness scripting! We've rarely seen this before, but Rachel was there and can testify: When a fallen branch blocked the trail, and Rachel picked it up so Leo and I could pass, Leo declared "The mail must go through!" That is the title and refrain of one of his favorite songs: "No matter if it rains or snows, the mail must go through."

I told him it was a great analogy -- borrowing others' already-assembled words to comment on a similar, at-hand scenario is often the function of scripted language. Then I beamed. And then I promptly forgot to document it.

Leo App Review: Injini's Write My Name

Tracing letters and words.

It's been a while since Leo sat down with a brand new app and just took off with it, but that's what happened with Injini's new Write My Name handwriting practice app ($1.99). Yay! Leo deserves a fun, crisply designed, intuitive and customizable app to help support his reading and writing skills.

You're probably thinking that there are a lot of handwriting practice apps out there, and you're right -- but this one is different, this one is superior.

These photos and video are from the very first time Leo sat down with Write My Name. He was delighted -- he immediately plowed through word after word, animation after animation, letter sound after letter sound, reinforced learning opportunity after reinforce learning opportunity.

The official information about the app follows, but I also talked to the developers and was pleased to find out that they consulted with occupational therapists on the handwriting portion of the app, and tested it with children with fine motor delays:

What's unique about Write My Name? There is plenty of competition in the tracing app category but our features can make a significant impact for children who struggle to learn how to write.

• Create 36 custom name tags with your own pictures and recordings to personalize learning for your child
• Beautiful illustrations
• Animations upon completion of each letter or word
• Easy to navigate to promote independent learning
• Uppercase and lowercase alphabet
• 100+ common sight/Dolch words
• Records student progress as word cards and letters are completed
• Fingerpaint mode shows completed letters in child’s own handwriting
• Distraction-free: No advertisements or in-app purchases

In the same tradition as Injini Child Development Game Suite and My First AAC, Project Injini was inspired to create Write My Name to help children with special needs practice emerging writing skills in a fun and playful way. Mastering writing your own name is often an IEP goal but the other tracing apps in the app store don't make this activity easily accessible AND achievable. We had this particular activity in mind when we created Write My Name. 

I love the customizable name tags -- and I can't wait to see how pleased Leo will be when we help him fill out a bunch of these tags with the names and photos of his favorite people and things -- which will then let him practice writing the names of those items.

Create your own name tag...

...then click on your name tag to practice writing your own name!

Letter tracing option one: Fingerpaint! This lets us see
what Leo's letter tracing ability actually looks like.

Letter tracing option two: clean lines! These lines are automatic,
and dependent on tracing ability but not fine motor precision.

The following video shows Leo and Write My Name in action. He loved this app -- and I appreciate that it broke him out of the Speech With Milo: Prepositions app rut he'd been stuck in this week (we love the Milo series, but right now the Milo music is the soundtrack of my nightmares).

Again, it's been a while since I've been really impressed with an app. This one's more than worthy of you or your child's time, and your $1.99.

----

Disclosure: we were gifted a copy of the app, but the opinion expressed here is my own. I only review apps worth reviewing.

Fabulous SEPTAR Event and Silent Auction March 3rd

Something I didn't say on the email lists but feel comfortable saying here: This is going to be a hell of a lot of fun! Please come.

Join us at Starry Night, an evening in support of SEPTAR, the Special Education PTA of Redwood City,

Saturday March 3, 2012 from 6 pm to 10 pm.

Jennifer Byde Myers at her latest NYC book reading

This fun and informal evening features live entertainment with singer Tan Ping and author Jennifer Byde Myers; a silent auction featuring original art and other must-have items; and delicious wine and hors d'oeuvres.

Our MC for the evening is San Mateo County Supervisor Dave Pine.

Tickets are $25 each and are available online at
https://www.brownpapertickets.com/event/222135

The location is the Redwood City Woman's Club at 149 Clinton Street in Redwood City.

SEPTAR brings families, educators, and community members together to support the special education needs of children in Redwood City. We host workshops and conferences, provide facilitated support groups, offer teacher microgrants, and hold social events. Membership is open to all.

Please visit our website at www.septar.org to learn more.

Mali's iPad App Reviews: Puppet Pals

Many kids, whether they're on the autism spectrum or not, like to create their own worlds and their own stories. Leo's sister Mali's favorite app for total creative and instant animated storytelling is PuppetPals, a free app she uses on our iPad.


In the video demo below, Mali shows how simple the interface is, and how quickly your children can create their own stories. All they need do is select characters and backdrops from a menu and click OK. (You can purchase additional character sets if, unlike me, you have in-app purchasing activated.)

The characters then appear around a "stage," which is a smaller window within the main iPad window. They can then press record, and drag the characters onstage to "act" in real time while the user provoides voiceover, and the non-active characters remain "offstage" until summoned. Backdrops can be changed in a flash by clicking the bell cords over the stage. Your child can even create and import your own characters and backdrops!

Mali has created more than 20 of her own movies so far, and frankly I'm surprised she hasn't created more -- probably because she's a bit of a perfectionist and only saves the "good" ones. But if you or your child love storytelling, drama, acting -- especially with a simulated animation component -- PuppetPals is a solid choice.

Peanut Butter Toast

Leo's working hard at making his own meals, especially favorites like peanut butter toast. And I do mean working -- there are so many steps, and using tools like pot holders is not easy for a dude who is working on his fine motor control. But he's doing so well. Though once peanut butter starts getting on one's fingers, it's hard not to lick it off mid-task. And honestly, what peanut butter lover hasn't want to just stick the whole peanut butter-covered knife* in their mouth?

*it is a very dull spreading knife.

I Want to Ride My Bicycle...

...so my parents and school team wrote it into my IEP.



(So proud of our boy. Video stops right before some deft fence-avoiding maneuvers. Vestibular system operating at capacity, methinks)

Fair Witness

Here is what I know:

It is an alleged incident. The allegations shocked me. I hope there is no truth to them. I wasn't there, so I can't comment. But I can vouch for her character.

I saw her mug shot. I read the charges. I saw the story spread from the news sites to the email lists and onto the blogs, trailing rage along with it. I cried. They don't know her. They don't know that this is not like her.

And I also understand the rage. Our children are more vulnerable, less able to defend themselves against abusive situations. Alleged abusive situations. If I didn't know her, I might react the same way. I might assume the charges are true rather than remembering they are allegations, or waiting for a verdict.

I also know this:

She was with Leo, at our house, several times per week, supporting him 1:1 through three of his toughest years, years when he struggled to wear his own skin. She was there through self-injury and aggression and and while other people drifted away from him, couldn't handle him. She was practically part of our family.

She was there just a few months ago, stepping up at the last minute to mind the kids after my three failed days of trying to recruit a sitter so we could find out in person if Seymour had in fact won an Emmy. She cancelled her own night out to make it happen.

I know she is highly principled. I know she is extremely hard working. I can vouch for her character.

And I know this, too:

Reporters ask leading questions. I did my best to deflect them. How did they get my number, anyhow? I cannot comment on the incident as I was not there. The alleged incident. Yes, I was surprised to hear about the allegations. No, Leo would not have a comment because allegations are an abstract idea, and he doesn't talk about abstract ideas. No, I haven't told my other children.

No, I don't believe the reporter will quote me accurately. I don't. I worry that I have caused harm just by talking about what I do know.

I want to defend her to the reporter, but I remain in Fair Witness mode and do not offer an opinion about matters I have not personally observed. But I can vouch for her character. She is principled. She is hardworking.

I can vouch for her character.

Wait For It...

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.