official show was an autism fundraiser, and itself preparation for a performance at New York's Lincoln Center). Iz was acutely aware of the unexpected gifts that come with being Leelo's sister as she watched Mr. Prutsman's hands blur across the keys, lost herself to his music (Bach does that to people, Mr. Prutsman's lovely & gracious wife commented), and then got to hop on stage after his performance, to play Kabalevsky's Sonatina. The experience was all kinds of magic.
I hope you had much to be thankful for during this extended weekend, too.
Basically, you know your kid with autism needs an iPad but you can't afford one. What to do? I'll tell you.
First, download an application from HollyRod Foundation's holiday iPad donation campaign to see if your child qualifies -- the two primary bases are family income and communication delays. (Everyone else: please donate to the HollyRod iPad campaign, either on their site or on CrowdRise.)
If your child doesn't qualify for the HollyRod campaign, don't fret. Instead, consider harnessing the combined powers of the holiday season and the Internet: set up an iPad fundraising campaign for your own child on ChipIn.com or GiveForward.com. These campaigns allow people to contribute whatever they can, directly to a fund that you set up. Then blog the campaign, tweet it, post it on Facebook, email friends & family -- enlist as many people as you can, cite as many articles as you need to to let everyone who cares about your child know how much your kid could benefit from an iPad.
Going hat-in-hand may not come naturally to you, but consider that you can ask as many or as few people as you like, that any contribution will make a difference -- and that you may actually be helping out all those relatives who wrestle with what to get your child for Christmas, Hanukkah, or birthdays. Remember: people can always choose not to contribute, but they can't contribute anything if you don't ask them.
Please trust me on this one: people are generous, the Internet is powerful, and your kid needs an iPad. It's a great combination. Good luck, and let me know if you have any questions.
P.S. If your child already has an iPad, iPod Touch, or access to an iPhone, tell friends & family who ask that nothing makes such kids happier than an apps-enabling iTunes gift card.
TweetLeo has had his iPad for six months now. It's hard to imagine our lives without it, honestly. What did we do? What did he do? (A hell of a lot more advance planning and materials set up, that's what we did.)
It's not that Leo uses his iPad all day long -- he does plenty of hiking and puzzling and snuggling and hanging out and working and playing and doing chores -- but the iPad really helps when Leo needs self-directed distraction, or engagement, especially during the kind of activities or errands that a typical kid would be expected to tolerate, and which have historically been challenging for our boy. Here are four iPad-made-easier Leo scenarios from just the past five days.
Waiting during sisters' activities
Just as his sisters have had to wait during Leo's various therapies, activities, and appointments, he sometimes has to wait for theirs. But this waiting hasn't always been easy for our boy, especially during his traditional winter grumpiness -- In the past I often begged off waiting on the sidelines, then piled unhappy Leo and his spare sister into the car so we could drive around until pickup time. But here's Leo contentedly hanging out at the restaurant/pub next to Iz's new soccer practice field, playing Letter Tracer. We made it through her whole practice, no problem. (Locals: guess our location!)
A time when tempers have been known to flare, if three kids are clamoring for attention and needing keeping-on-task, and two of them are possibly whining and making excuses. Since Leo can now navigate his iPad & apps himself, I check in with him occasionally (he does have autism, he has been known to perseverate on certain apps, like Monkey Preschool Lunchbox, pictured) but I can now give his sisters 95% instead of the previous 50% - 70% or my attention.
Sometimes our boy's not in the mood for Costco. I understand; I'm not a fan myself -- but our weekly runs are part of our family schedule, and there are complicated consequences to aborting a trip or trying to go on a different day. Leo can usually get through a Costco trip without incident, but he has been prickly lately, plus he has been exhibiting unpredictable irritation towards his little sister. If it occasionally takes playing Tappy Tunes in a shopping basket nest for Leo get through Costco, so be it.
Three kids quietly engaged at the library. Two of them are reading books, one of them is playing ShapeBuilder on his iPad (with the volume turned down). Library visits like this were simply not possible before the iPad, as Leo only likes the books that Leo likes, and he doesn't like them in new scenarios, e.g., the children's room of the local library. But now the girls can suggest a library trip without bracing themselves for a No!
So, yes, I still consider Leo's iPad a near-miracle. And Leo still considers his iPad the most motivating and entertaining item he owns. (I urge you to consider helping near-miracles happen for other kids like Leo, through the HollyRod Foundation's Holiday 2010 iPad Campaign.)
I wonder if a non-fuzzy version of the world will blow her mind. Moreover, I wonder if a non-fuzzy version of her classroom will lead to improved behavior.
I only have one worry, which is Mali's concern about a specific friend at school not liking her glasses. This not unkind but definitely bossypants-why-wouldn't-my-opinion-be-the-only-one-that-matters little girl also pooh-poohs my explanations about Leelo's autism, saying, "Well, he just shouldn't do that." I know it's not realistic to expect empathy and consideration from most six-year-olds; I just wish our exuberant and usually supremely self-assured girl would hitch herself to a more thoughtful friend.
When my mom first handed me Saving Hannah: Or How to Rewrite History by Andrea Stein, I was a little bit skeptical. The title made me suspect yet another "a group of girls, one of their friends disappears and they have to find her" story. but after I opened the cover, my suspicions were erased. From the first page, this book was in my hands until it was over. I really loved how the girls in the story were proud of who they were and did not pretend to be someone else because they considered themselves not good enough. These girls inspire me to be a better person.
The many plot twists and turns provide a break from the normally predictable "mysteries" that I read and had trouble telling apart. The book was extremely creative, and I especially like how they included a few details about fashion and did not seem to imply that fashion and makeup are bad. Rose, Daisy, Lilly, and Poppy are four girls everyone should have the chance to read about.
Disclosure: Iz was sent a review copy of Saving Hannah by the author.
TweetSometimes I feel like we're living in the middle of an events tornado. It's exhilarating, but sometimes it's hard to catch our breath. Things the wind's blown our way that you might want to know about:
|Photo (c) 2010 Kelly Nicolaisen|
Here are some very cool upcoming autism events, iPad-related and otherwise.
- November 20th: Mellow Militia, developers of the Tiki Toss 3D app, will be donating an iPad and six art boards for auction at The Surfers Healing Art Benefit and an iPod touch to The Surfing Santa Contest on November 20, 2010 in Southern California.
- November 20th: TPGA contributor Susan Walton will be speaking about her new book Coloring Outside Autism's Lines at Kepler's in Menlo Park, at 7 PM. I am totally going.
- November 27: Come see pianist and autism dad Stephen Prutsman in a benefit performance for the Azure Program, San Francisco's Summer Camp for Children on the Autism Spectrum. I am very much going to try to go.
Everything is coming together for The Thinking Person's Guide to Autism book. I keep writing how blown away we are by the content -- both in quality (damn!) and quantity (hence the delays). We're going to be announcing the contributors on Tuesday November 30th, so stay tuned.
I interviewed three wonderful parents of wonderful kids with cerebral palsy for BlogHer: Jennifer Byde Myers, Ellen Seidman, and Bridget Henry. As I wrote,
"I'm used to Leo's quirks, I'm comfortable with them, they're just one part of the boy I love so much. But there's as much of an onus on me as there is on anyone else to get more familiar with other children with special needs and their stories."These families' stories are so different and so important; I hope you learn as much and love those boys as much as I now do.
On the family front:
- Leo took cold pizza for his school lunch yesterday, which was his first non-PB&J lunch in five years.
- He also got his little sister a snack -- complete with plate -- yesterday upon her request instead of trying to thump her. I was not involved at all -- no prompting, no encouraging, just a bystander with mouth agape. I'm going to get to use that incident for weeks, to remind Mali that her brother can be awesome. Though I hope socially savvy Miss Mali doesn't start taking advantage of her sometimes-too-obedient brother.
- It took Mali four months but: this week she finally had five days of good behavior in a row in both her Spanish and English classes! I'd been having to get in-person updates from her teachers ever day after school, since August. Her reward: PLANTS VS ZOMBIIIES.
- Mali's teacher conference went splendidly. Her primary teacher said that after a rocky rocky start, our girl's classroom performance is now all the things a parent wants to hear but which tend to bore or irritate readers.
- Iz's Science teacher said similar things about Iz. That class is legendarily difficult, with proportionately problematic parent-teacher conferences. The teacher requested a conference with me because she wanted a happy conference, and to pat our girl on the head for being a synthesizer rather than a regurgitator.
- Iz is joining a club soccer team. Lord help us. She and Seymour are beyond thrilled. And it's a team that focuses on skills-building, not just planning scorched-earth defeats. I guess this was inevitable, once we had the minivan.
TweetAnd then, suddenly, Leo re-emerged as himself. All done, violence and aggression.
It can't be all due to resuming routine, as we jumped immediately into a four day weekend. We had four days of happy. Four days of Totoro skies. Four days for which I am very grateful -- plus a whopper of a family milestone on Friday, so, if you're nosy, keep reading.
We set aside Thursday as a family hike day. But first we visited my lovely friend Laura at her lovely home. Our girls got a good dose of the doggie love they so crave, Laura met both of my boys and I met one of hers, and Leo got to enjoy exploring a nice big flat yard with paths and plenty of running space. We had to leave before we moved in.
Our hiking destination was Briones park, using an exploration that Seymour put together for KQED. We downloaded the exploration to the EveryTrail app, and were able to used Seymour's iPhone's GPS functionality to trace points of interest -- complete with pictures -- along the trail. We enjoyed a picnic lunch, watching gophers pull plants straight down into the ground just like they do in cartoons, meeting a ranger and her horses, watching raptors, and basking under those bright blue skies.
Friday was gloriously overscheduled, but we managed to hit every beat:
It started with my hour-long magazine interview in the AM (if it comes to fruition, I'll let fly with the ID). It's always rewarding to talk to reporters about the importance of cultivating a positive attitude, appreciating and loving our kids, and the critical role of community.
Then we dropped of my crud-encrusted van at the detail shop so Seymour's parents won't recoil in horror, should they have to ride in said van during their (yay!) Thanksgiving visit.
Then we drove to SF and dropped of Seymour at work.
Then we picked up Godfather Michael from his residence.
Then we picked up snacks & coffee (which I'd stupidly skipped) from Baker & Banker's side door while the girls Oohed and Aaaahed over the size of their brown butter chocolate chip cookies.
Then we met with Michael's Godwife Stacy and she ushered us into a wonderful kid-centric San Francisco Symphony performance. The girls were compelled and appreciative, to my relief.
Then we went for stuffed pizza for lunch. Mmm. Sadly, GM Stacy had to go back to work.
Then we hit Isotope comix to get Mali a comic book for her birthday while Michael drifted off to The Fatted Calf next door. Mali chose Lions, Tigers, and Bears, and she would have stayed forever on those overstuffed red couches, browsing their excellent kids' section and chatting with the affable owner James, but we had to get our car off the street before noon, sigh.
Then we took Seymour our leftover pizza for his lunch. NOM.
Then I took the girls to Franklin Square Playground, a place I realized Iz had never visited after she asked me what the merry-go-round was. But Mali and I quickly showed her how to use it and she was an instant & enthusiastic expert.
Then the girls and I drove home and met Leo at his bus and the girls wrote a thank you note to Godmother Stacy -- because if you don't take care of that shit immediately, it's less likely to get done. Or so I find.
Then we picked up my van, which glowed with a holy light and had an electrical field installed around the doors that will zap any child who attempts to bring in food, drink, or dirty shoes. This car must stay clean, for a minimum of two weeks!
Then all three kids and I went to the grocery store and they did just fine! Leo did not turn into a ferocious octopus or supernova or wolverine -- he was a model citizen, and received much praise for his behavior.
Then we mailed the thank you notes.
Then we dropped Iz off at her end-of-the-year soccer pizza party.
Then I took Leelo home to spend the evening with his favorite babysitter.
Then Mali & I went out for tacos together, because 1:1 time is rare.
Then we picked up Iz from her party and walked her over to the local movie theater where we met both Seymour and they boy Iz is sweet on and ACCOMPANIED IZ ON HER FIRST DATE AND THEN THE WORLD STOPPED SPINNING.
Saturday was the last day of Fall soccer chaos. I'm still loving Leo's games, hanging out with all the parents who get it and will plunge right into talking about their current challenges without warmup small talk or other BS, which I always appreciate.
Very kind people gave Leo iTunes gift cards for his birthday, so we spent much afternoon time downloading apps and videos for Leo. We found some excellent ones for him, many at just the right level of challenge/familiarity. I will have to write them up.
I also managed to overlap Liz's birthday party featuring some of the best tapas I've ever eaten with hosting Ep's Clyde's annual birthday roast beef dinner, where I shared my otherwise self-serving mashed potato and gravy superpowers. Which sucked from a not-enough-time-with-Liz perspective even though we had a great dinner with some of our favorite people, and was the third time I've really messed up my calendar in a week. I need a clone.
On Sunday Jenijen & I went to a truly fun and informative heart health event in San Francisco, which you can read about here. On the way to the city, we talked about our disinterest in complainers versus our affinity for motivated non-complainers, and how we tell our kids that it's more helpful if they tell us what they want, as opposed to what they don't like. (I am all done with the whining!)
Back to the groove, it seems. Or so we'll see -- Seymour is off on a Midwest business trip tomorrow. I'm really hoping Leo won't redirect his dad-missing sadness into aggression towards Mali. I'm really hoping we'll get four more good days, despite.
TweetLeo spent Monday and Tuesday of this week in a state of agitation, specifically targeting Mali. While in hindsight there were several possible triggers (post-birthday party sensory processing, Daylight saving time, high dose red food coloring from his cake, Keith Olberman's censuring) in the moment his aggression came out of nowhere -- we had just run several errands with a compliant and content boy when he started trying to attack his little sister in the middle of the grocery store.
He didn't get Mali, but she (understandably) freaked right into hysteria. And wanted to be picked up and comforted. Which I couldn't do, because I needed all my hands and strength to keep her brother from reaching her. And then my heart shattered into a million pieces, which made getting those two children all the way across the store to the exit challenging -- I'm not sure how it happened, but we did get back to the car, with rearranged seating and several minutes of me sitting in the driver's seat, paralyzed and gripping the steering wheel. I don't know how you handle shell shock, but for me it means driving at about 10 MPH -- which also happens to be a sign of drunk driving so I'm lucky we didn't get pulled over.
On Tuesday I tried an outing with them again, for Leo's actual birthday -- to his favorite cafe for a croissant. I was hopeful, as on the way there Mali asked him for some of his hoarded goldfish crackers and he handed them to her without my prompting, and without fuss.
We arrived. We parked. We couldn't get five steps away from the car without him flailing, lunging, and yelling at his little sister. Mission aborted.
I really started worrying -- we haven't seen that kind of violence from Leo since 2008, pre-Risperdal. What if Leo was sliding into an aggression cycle again? That would mean going back to no errands, no restaurants, no travel, no delicate visitors, and an even more circumscribed world for our social boy. A friend suggested investigating precocious puberty (our boys seem more susceptible), I started wondering about dental issues or meds dosage (his dosage has only changed by a miniscule amount in two years, though he's gained 15 - 20 lbs during that time), other folks suggested allergies and the Olberman-adjacent factors above.
But, because I have a hard time giving up and Leo deserves the benefit of the doubt, we tried going to the cafe again today. He was fine -- not one sign of aggression. He didn't sit next to Mali, but we don't allow such proximity anyhow; the measure of success was his not leaping across the table to get to her. And the rest of our afternoon was pleasant as well. I don't have an explanation for his seeming return to equlibrium, but I'm grateful.
Today we're going to attempt a family hike. There will be much discussion of the day's exact steps and schedule, and his iPad will come along for both visual schedule and entertainment purposes (did you know there's a Thomas the Tank Engine app? Leo is in heaven). The hike will be a schedule change, so we'll see if that's a bonafide trigger. And winter is always more difficult for Leo, as evidenced by seven years' worth of ABA data.
Not giving up on my boy. I enjoyed this video from Japan, about appreciating our kids' thinking instead of making assumptions:
P.S. One thing is certain -- Mali is going to need extra support, extra processing, extra listening, an extra-safe space to let her feelings work themselves out, because she is feeling traumatized -- again, understandable. She keeps asking me to sell Leo, and refused to sing him Happy Birthday. This is more than standard little sister antipathy. If you have advice or experience in the matter, please do share.
He had a fun bouncing birthday party, with many of our favorite people and families -- including several of his new classmates and their equally wonderful families. It was delightful. The picture above is him at the party, about to blow out his candles.
If you needed a double-take, let me reassure you -- that's not pizza, it's cake. A very symbolic cake. A cake that the party facility owners almost blocked because non-cake outside food is prohibited. A pepperoni pizza cake*. Which we made for him because, as of Halloween, he now eats pepperoni pizza! (And garlic chicken stuffed pizza, though its confection version is less striking.) Our lifelong vegetarian-by-choice boy is finally going to get some protein from non-legume, non-dairy, non-egg sources!
Judy McCrary Koeppen's, Leo's former SLP, and her guidelines for picky eaters. We used the idea of "food chaining" during more than a year of weekly pizza nights: first we got Leo to nibble on the pizza crust, then on crusts with a bit of sauce, and then crusts with a bit of sauce and cheese (that took the better part of the year). And then suddenly he was demanding pepperoni pizza on Halloween. Was it a fluke? No, because this nomming picture is from the first weekly pizza night after Halloween, when he scarfed two pieces of the pepperoni stuff. You can see the nomming yourself in this video, which Seymour says is shot in PizzaCam. Our boy is a genuine pepperoni pizza convert (and spinach pizza, too).
Leo's pizza love means a milestone for the rest of his family, too. When we went out for pizza on the night of Leo's birthday party, Seymour noted that it was the first time ever our entire family ate the same thing for dinner. First time ever. Ever.
Our boy is not in stasis, that's for certain. I am hoping for more positive surprises and more happiness for him during this, his eleventh year on our big blue marble.
*In case you were impressed by my creativity, know that I used the guidelines from the first Google hit for "pizza cake." Though I substituted healthy-ish carrot cake with cream cheese frosting, and used apricot fruit leather for the pepperoni.
|photo (c) 2010 Kelly Nicolaisen|
We all know that each child with autism has unique needs -- but if Apple's iPad fairies were to bring Leo a brand new blank iPad, the apps below are the ones I'd stock it with. (Note: I've written about most of these apps before, but not as a collection.)
- Stories2Learn - $13.99 - Create custom social stories, using your own photos, text, and voiceover
- iCommunicate - $29.99 - An AAC app: create icons with custom text, audio, and voice-over, incorporate them into storyboards.
- First-Then Visual Schedule** - $9.99 - Create digital visual schedules with several format options
- iEarnedThat - $1.99 - A puzzle-based reward system that uses custom images
- ShapeBuilder - $.99 - An errorless learning puzzle game
- Whizzit 1-2-3 - $.99 - Practice 1:1 correspondence/counting, with fun balloon-popping breaks
- FirstWords* - $4.99 - Spelling in an error-free environment, reading
- iWriteWords* - $2.99 - Guided handwriting with a really fun, reinforcing interface
- FruitMemory - $.99 - Concentration, turn taking, scalable, fun, cute!
- Supernova - $.99 - Practicing iPad pinch-and-expand motions
- DrawFree - $ Free - Magnadoodle-like simple drawing app
- DrawWithStars - $.99 - Animated drawing and methodical erasing app
- Faces iMake* - $1.99 - Fun, free-form collage making
- TappyTunes* ** - $1.99 - Tap out your favorite songs (note: text-based interface)
- Fruit Ninja - $6.49 - Because my boy deserves to play! Fun, very simple swipe-based interface
** Works with iPhone/iPod Touch, may not be compatible with iOS 4.2. Please check before purchasing.
Social stories help Leo with new transitions, situations, and reinforces challenging routines. I can make a social story in about fifteen minutes, once the pictures are loaded on the iPad. The interface is easy for Leo to use and he loves seeing stories about himself:
Leo enjoys making his own icons and doing the voiceover for them; seeing those same icons used in scheduling storyboards is reassuring for him. iCommunicate is very much Leo's speed; since he speaks "fluent requesting," we have not spent as much time with the more category-driven AAC (Augmentive and Alternative Communication Strategies) apps like Proloquo2Go (though I'm exploring P2Go), iComm, AutoVerbal, TapToTalk, and MyTalk.
First-Then Visual Schedule
A digital visual schedule instead of spending hours printing, laminating, cutting, veclro-ing? Yes please. Though I am hoping for a more category-driven interface in future versions.
Look in My Eyes - No longer recommended. Autistic people often find eye contact painful and unnecessary.
Recommended by Danielle Samson, an SLP at Leo's school. Numbers flash on models' pupils, then your child identifies those numbers from a field of nine. Bonus: Leo thinks it's fun. The goal is to support connected gazes.
Use your own pictures to make puzzle-based goal charts. Leo doesn't quite get the goal part, but he loves putting the tap-based puzzles together -- the more puzzle pieces (you set the number) the better.
Leo's current go-to app. Drag puzzle pieces to make a shape, which then turns into a picture -- and you get cheers! The app sucks in your pieces if you get close enough, so it's easy to succeed. Visual memory kids like Leo, who can match puzzle pieces to shapes, can become real speed demons with this app.
Just a really great, simple, straighforward 1:1 correspondence and counting game. Fun interface, goes up to 20, Leo loves the balloon-popping interludes every three or four sessions.
Another Leo favorite [video]. Drag letters into slots to form words. Each letter is called out as it falls in place. Then the word is read aloud. You can't put a letter in the wrong slot, which is really helpful for Leo since he's still learning to sight read.
Handwriting and spelling in one well-designed, intuitive app. The user can choose to practice on words or letters, in uppercase or lowercase. I love this for Leo because he can't go outside the "lines" [video] -- he's guided to form letter shapes correctly, and then words are spelled using the letters he just wrote.
A Concentration/matching app, which is great for Leo as he's got that stereotypical autism keen visual memory. While Leo enjoys Concentration apps such as AnimalMemory ($ free!) and Jirbo Match ($4.99), I like Fruit Memory the best because of the multi-player option that helps him learn turn-taking, and lets us play the game with him. Bonus: super-nifty design.
An ambient app that lets Leo focus on expanding and contracting a celestial cloud -- while practicing the pinch/unpinch iPad fine motor skills movement that kids like Leo find challenging.
Leo likes drawing lines with this app's musical spinning stars [video] -- they're motivating. And then he gets to indulge his OCD tendencies by methodically retracing his steps and making the starts spin off screen -- an exercise in manual precision that is also good for honing fine motor skills.
A very simple, free drawing app -- perfect for a boy like Leo who finds it much easier to draw with his finger than with a pencil, crayon, or stylus. His creations are too much fun -- we've never had unprompted goodies like this square guy before, not outside the iPad. You can also import photos and draw on them, which Leo thinks is hilarious.
A whimsical collage app and free-form creativity unleasher. I was worried that the interface would be too complicated for Leo, but he skips between options with ease [video].
Leo loves music and sings all day long, but at the moment he's not quite ready for independent extended sequences or instruments. TappyTunes plays Leo's favorite tunes automatically -- but he controls their rhythm and tempo, demonstrating how well he knows these songs! The only drawback is the text-based interface -- I have to help him select songs since he's working on his reading.
Leo is sitting next to me right now, playing this quick-draw fruit-slicing app (he prefers the bomb-free "Zen" mode). His choice. 'Nuff said.
- An extensive survey by @esailers at SLPSharing.com: iPad Apps and Accessories for Special Needs
- And because I've been asked about Android apps as well: http://www.androidzoom.com/android_applications/autism/by_matchin