"Take off your cape and just be a friend."

Please read Don't Be a Hero. It's an important essay on why folks who work or volunteer with people with disabilities need to rethink that pervasive Hero mindset. Excerpt:

 "Imagine learning that someone befriended you with intentions of putting it on their résumé as volunteer experience or merely to pat themselves on the back. What if your friend accepted your social invitations “out of the goodness of their heart?” How would it feel to know that what your “friend” gained from your relationship is the righteous feeling that they were doing you a favor? Would you feel like you were experiencing an authentic interpersonal relationship? I’d imagine not. I’d imagine you’d feel used, cheap and deceived."

I'd rather see folks with Iz's attitude. She went to a sibling camp with Leo a few years ago, and keeps asking when the next one is going to be. I told her she was getting old enough that she might be able to work at the camp soon.

She was excited, and said, "That would be great!"

"Yeah," I said, "The pay is pretty good, too."

Her response: "I'd get paid?"

More of that. Yes please.

Autism: It's Nobody's Fault When It's Hard

Iz is a wonderful big sister to Leo. This is her at last week's family reunion, letting Leo know that the group photos won't take that long, explaining that if he could just sit for a minute, then he can go back to the playground even sooner, and that he's being awesome and patient.

I don't have a photo of her and Leo from yesterday, when she got into a teen defiance spiral while we were in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. I wouldn't want a picture of that.

Afterward, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. (That it is never acceptable to yell the way she was yelling is another, puberty-driven issue.)

Accommodation is part of being part of an autism family. It's just what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled.

I told Iz and Mali that it's OK to discuss situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism (e.g., they are welcome to chastise him if he steals a piece of their pizza).

Leo is always doing his best, he just got through a week of chaotic family gatherings, his sisters know he's a capable kid. He also needs us to support him as best we can, and avoid avoidable crises. He deserves nothing less.

Side note: I've been blogging for 9 years as of yesterday. And this is my 2,500th post. Holy hell.

On Stinky Brothers and Autism

It's been a holy-hell busy two weeks, ending with yesterday's phenomenal BlogHer | bet business, enterpreneurism, and technology summit (check out the official liveblogs, three contributed by yours truly). Kudos to BlogHer for bringing together so many brilliant women, for making us all feel as though anything is possible -- and then giving us real tools to propel our ideas skyward. Personal thanks to Jen Myers for being our partnership's business-minded anchor, and asking all the right people all the right questions.

Speaking of BlogHer, I have a new post up as Contributing Editor for Kids With Special Needs, about our kids' complicated relationships -- and how sometimes Leo's behavior is because he's a brother, not because he has autism. And how we spend a lot of time teaching Mali to separate Leo's actions from his person:  "...while she can be mad about what he does, it is not OK for her to make him feel bad about who he is." Here's an extended quote:

We don't ever leave our youngest daughter Mali alone with Leo, her ten-year-old big brother. It's not safe. Leo's intense autism may complicate his understanding in some ways, but he remembers very clearly that until he was four years old, there was no Mali and he was Mommy's baby. He has no problem showing his antipathy through yelling and pushing. Understandably, Mali is not a Leo fan, though she tends to blame Leo's autism rather than Leo himself. While I know we can keep Mali safe, I worry that these two children I love so fiercely might hate each other. And that breaks my heart.

I'd enjoy hearing about other families' sibling interactions, especially positive ones, and how you shape, mold, encourage, manage, and direct them.

iPad2: We've Seen, We Want, We Wait

So, yes, sigh, we don't have an iPad2 yet. We are planning to get one for Leo, but it may be a couple of weeks. Did I sigh already? I did.

We have checked out iPad2s, though. Leo saw plenty of them when we cruised our local Apple store on Saturday (my MacBook's battery died, plus Leo isn't terribly enthused about watching Iz play soccer, so the two of us needed an alternate game-time activity). iPad2s were everywhere at the Apple Store -- two guys giving iPad2 demos at the doorway, we passed a table full of them as we walked to the Genius Bar, and they were in ecstatic customers' hands. Everywhere, that is, except on the shelves. The store was completely sold out, and the staff say they haven't been told when their next shipment will arrive. So, if you don't have an iPad2 yet and want to get one ASAP, the store staff says the best though not ideal option for impatient types like yours truly is to order online.

Leo was a champ the entire time we were at the Genius Bar, contentedly exploring his new Dr. Seuss interactive books: Hop on Pop*, The Cat in the Hat*, The Cat in the Hat Comes Back*, and I Can Read With My Eyes Shut* ($3.99 each). I said it before, I'll say it again -- these Dr. Seuss apps are fantastic. By letting Leo "read" the book to himself at his own pace, they reinforce his classroom-based sight reading learning. I showed Supervisor M the video of Leo "reading" Dr. Seuss's ABCs, and she agrees -- interactive book apps with individual word playback are a great way to supplement Leo's reading. I would love to see individual word playback in as many apps as possible, really.


One of the Apple store employees recognized Leo from the iPad video, which was sweet though Leo doesn't seem to realize why people know who he is. I was a bit surprised as Leo was wearing a completely different outfit than he wore onscreen. When we got home, Seymour teased me that I keep dressing Leo in the African animals shirt he wore in the video, and I admitted that it was true -- but only because Leo has two of those shirts,  so they tend to be available more often than their drawer-mates. (And that is the reason why he wore one in the video.)

Leo's good behavior and marvelous memory scored him a treat from the bakery next to the Apple Store -- he knew exactly what goodies we'd be in proximity to, the moment I parked our car, and he waited patiently throughout my entire store visit.

We sat down at a cafe table to enjoy Leo's treat, and he jumped into a suite of apps that I've not written about yet: Kindergarten.Com's free flashcard apps. They are good for learning and reinforcing labeling, and cover topics like Zoo Animals, Emotions, Actions, What Goes Together. Sometimes they are too specific for generalizer kids like Leo who are perfectly happy with Monkey rather than Spider Monkey, and they make assumptions about kids' knowledge (why on earth would Leo know that a golf club goes with a golf tee?), but overall -- and for free -- they are useful apps, especially for kids who are in the earlier stages of expressive and receptive language acquisition.

Apps, iPads, treats, and Apple Store -- it was a successful outing for our boy. And it does make me wonder how many of our unsuccessful outings have less to do with Leo's inability to tolerate errands and more to do with his inability to tolerate his little sister. I wish there was a quick fix for prickly sibling dynamics.

Since no such fix is currently available -- or is ethical or legal, at any rate -- we opted for the next best thing yesterday -- an outing at our very favorite beach. Look, one of Seymour's bloggers wrote a post about the beach's geology, just for us! (OK, not really, but the writer's timing was excellent.) Even on a cool gray March day, we and our new friends (I'm trying to find a man-friend for Seymour) and all of our kids had the best morning ever finding hermit crabs, anemones, chasing waves, tossing driftwood ("mermaid pens!" said Mali), and letting the pebbles run through our fingers and toes. No sibling anything, not on that beach. It's almost magic. And we had that magic all to ourselves. Can't really ask for more.

*Leo was gifted these four apps by the developer, OceanHouse Media, however I have purchased five of their other Dr. Seuss interactive book apps myself -- and Leo uses all nine of them.

Rainy Day Apps Leo Loves (and One Mali Loves, too)

Leo is out of school this week, which is why you haven't heard much from these quarters. We intended to spend the week hiking, but instead we spent our time stuck inside, watching rainstorms, rainbows, seeing the soaking-wet trampoline steam when the sun makes a brief appearance, and wondering whether we're going to have our first-ever snow.

Thank heavens for Leo's iPad. Our house is well-stocked with books, videos, and activities, but the iPad gives Leo so much leisure- and learning-time independence and encourages so much self-direction -- it has made our rainy week several degrees more doable. Here are some of the apps Leo's been using the most lately:

As you can see, Leo gets giddy over Speech With Milo: Verbs ($2.99) and the new Speech With Milo: Prepositions ($1.99). The interface is somewhat text-based, but it is also consistent & predictable, and Leo has learned to navigate from screen to screen. Leo can use all the quality language-building (as opposed to communication/AAC) apps you can create, developers, so please let me know when you're ready to open those floodgates. Leo & his peers are waiting.

My Underwear ($2.99)* is the cutest damn app. It was designed by Todd Parr so the graphics are whimsically excellent. The games and activities are simple and fun, and Leo enjoys them -- games like "catch the falling underwear" are  just unpredictable enough to keep him on his toes, while remaining straightforward and not-overwhelming.

 

Another lovely bonus of My Underwear: sibling interaction facilitation. That's a fancy way of writing that OMG Leo & his little sister play My Underwear together! Not something we see a lot of -- Mali is wary of her sometimes volatile older brother. But with My Underwear, Mali is not just willing to play it with Leelo, she's patient and kind (two words we don't use a lot with her, awesome as she is) in showing him what to do if he gets stuck. Thank you, Todd Parr!

Silly Numbers $3.99 was recommended to us by Danielle Samson, an SLP and an iPad/AAC/apps expert. Leo is a sucker for apps with good music. I am a sucker for any app that encourages Leo to independently and repeatedly review subjects in which he needs support, like 1:1 correspondence and counting. This is not a terribly complicated app -- each screen shows a number from 1 to 12, then that number of objects appear onscreen. But it is interactive -- you can tap the objects to count them over and over again, the animations are cute, the voiceover and text includes adjectives, e.g., "One Tasty Pie," for some stealth extra learning, and the design is top-notch.

The Itsy Bitsy Spider ($.99) by Duck Duck Moose is not a new app but it is new to us, and was another Danielle recommendation. If you know Leo you know he loves music and singing his favorite songs, like the eponymous tune. Getting to play that tune over and over again while fiddling with pages full of animated extras means even more loving. And that loving is ever helpful in situations where Leo needs distracting from what he doesn't love, for instance visiting his pediatrician (thank you, Duck Duck Moose!).

Andrew Answers ($2.99)* is an interactive book supporting language building through word play, repetition, and cheekiness. It also has interstitial activities during transitions, which Leo appreciates. His sisters think Andrew Answers is hilarious, so do I. Though if your kids are clever enough to model Andrew's sassy way with words, you may be in for some exasperation.

Little Bella - I Close My Eyes ($.99) is a charming interactive book, and a favorite of Mali's (and a final Danielle choice). Little Bella is an imaginative girl whose animated adventures play out every time she closes her eyes -- as she dreams about being a butterfly, flying, diving like a dolphin: I'm honestly surprised by how inexpensive this app is, given the quality of its art and animation.

I am backlogged with apps to review and will be talking about more of them (and adding them to the iPad Apps for Autism spreadsheet), soon. Once Leo's routine is reinstated, most likely.

2/26 update: Is this snow on my backyard picnic table? Not sure, but that's what we're telling the kids! We Californians have to get our wintry thrills however we can.


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*These apps were gifted to Leo by the developer. Which has no bearing on my review; I am featuring these apps because my kids genuinely like them.

Seeing iPads Through Chestnut-Colored Glasses

Leo 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!)

Sister homework time
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.

Costco Runs
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.

Going to the Library
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.)

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Liz, Jen, & I spent part of our Saturday night at local parent & author Susan Walton's reading for her new book Coloring Outside Autism's Lines. Susan stressed the importance of getting out and having fun as a family, finding full-family activities that everyone enjoys. I think our family does a decent job, and we're always pushing ourselves, taking risks, and trying new things. Like local chestnut-gathering, which I've never done but which Leo enjoyed and we all found addictive (the chestnut gathering and the eventual chestnut gorging, oh my goodness they are delicious).

 

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Turns out my fretting over Mali's leaning in to read signs at Muir Woods was justified. She has an astigmatism, which makes her nearsighted, plus she's also farsighted. The ophthalmologist was able to get her a prescription that will give her 20/20 vision, and the real glasses should be here in a week (these are the clear-lens model of the frames she chose).

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.

Easy Not Breezy

This summer has been easier than parenting summers past, at least so far. Traveling is easier, as both Seymour and I realized during our recent Seattle trip - no strollers, and less worry that Leelo will pull a flailing violent octopus maneuver on a TSA agent.

Camps are easier, too. The girls have been going with friends - Iz with Merlin, and Mali with Jennyalice's Lucy, which means carpools and built-in playdates. Easy.

I noticed the most blood-pressure-lowering difference this past week, the first of Iz's two weeks of day-long campity camp -- with Leo feeling comfortable in his skin, I don't freak about having to drag Mali and Leelo through knots and clots of girls and parents trying to fight their way to the clipboard lady/gatekeeper without whose acknowledgment none may board the bus. Signing in and out is easy. It's never been easy before.

But it's not always breezy. Yesterday, as we arrived for pickup and just as the bus of chanting campers pulled to the curb, Leo announced that he had to pee. There were no open bathrooms in the vicinity and the clipboard lady frowns with authority at latecomers, so I pulled him behind a bush and had him do his business there as Lucy and Mali stood to the side and pretended not to watch.

I assured the girls that peeing in schoolyard landscaping was tolerated under specific circumstances, and even kind of cool. "Sometimes, when you're a boy, it's great! You can pee in bushes all over the world!"

"Sometimes, when you're a girl, you have a brother with autism. And then your whole world changes." replied Mali. (She's five.)

"Yeah." said Lucy, knowingly. (She's four.)

Me: Wide-eyed silence. I don't think they were asking for a response.

I suspect these girls will be wiser than their peers in many ways. And I hope that they will always be friends, because it's important to have people in  your life who understand that having a sibling with autism doesn't mean you live in a sideshow. These girls know that other people may view their world as different -- but to them, it's just reality.

I'm So Proud That My Five-Year-Old Can Read and Write Independently!

I'm just beaming, I tell you. Beaming.

Mali's a Monster and It's Your Fault

That's what I said in last week's BlogHer post, anyhow. I really am tired of people enabling my youngest child's disrespectful behavior because she's just so darn adorable, or they're afraid of offending me. Here's the post's chewy center:

Her brother's autism and the extra effort we put into parenting, that's our problem. Teaching kids like Mali to behave respectfully -- that's your problem, too. Once children become social beings and start taking cues from people outside their family, social skills become a group responsibility. And, every time my freshly minted five-year-old walks up to an adult and smacks them on the bottom or otherwise misbehaves, and my apologies and reminders about appropriate behavior are brushed off with an "Oh, it's okay," because she's little and cute  or you're more worried about offending a potentially prickly parent than teaching a child about appropriate boundaries, you have fed my tiny monster anew.

Here's the part that got bloggers like the inimitable Mike Adamick chatting:

Step up, people. You have my permission: kindly but firmly tell other people's children that you are not okay with being treated badly! Really, it's all right. If the parent is offended, feel free to roll your eyes or grumble about them on Twitter. Your responsibility is to the child, to society.

And here's the part I really wanted people to absorb but that apparently wasn't as compelling the more incendiary statements:

This doesn't mean you get to tell off every pint-sized jerk you encounter -- quite the opposite. I expect you to model the behavior you'd like that child to emulate. Actively participating in the parenting and discipline social sphere is not about lashing out or imposing your will on someone else's child, it's about demonstrating how being social means treating people with respect.

I also talked about the importance of removing judgment from such exchanges, and how we use behavioral methods mostly learned from seven years of Leo's home ABA program to parent our children and shape their behavior ever so carefully.  What I didn't mention is that we're back into using bribes, a.k.a. reinforcers, to keep the two girls from strangling each other, and me from finishing the job (CPS types please note: that was a joke).

Iz is a sensitive girl who can't not go berzerk in response to certain external stimuli, like little sisters pinching or taunting or encroachment of a shared arm rest. Mali has Iz's number, she can make her dance like a marionette, and she's not about to back down -- as long as Iz keeps responding, Mali will keep badgering. We needed to break that cycle.

Since Mali draws such great delight from torturing Iz (as our youngest illustrated above; the drawing shows Mali indulging in the venial sin of "smirking" at a very distraught Iz), we pulled out the behavioral water cannons of positive reinforcement: sticker charts. We set time periods of one to two hours during which the girls must not only refrain from needling, shrieking at, or smacking each other, but must treat each other with kindness and respect. Each time they succeed, they get a physical sticker (Mali) or a point on my mental tally chart (Iz). The payoffs for chart completion are items of no great monetary value but great emotional worth.

It's sort of working. Though Mali still really enjoys goading her sister, and Iz still can't not respond. In between points and stickers earned are awful episodes where Seymour and I end up banishing them to opposite ends of the house. Later I'll find them fawning over each other and then looking at me expectantly, hoping for that point or sticker. With enough practice, those fawning sessions may become at least partially genuine.

I don't think Mali is really a monster -- she has a generous, loving heart -- but I do think she's smart and passionate and embodies spiritedness. A girl who emerged from our recent Lord of the Rings movie marathon unable to decide if her favorite character was the Balrog or Grond,  flaming Hammer of the Underworld, and who also thought the trilogy's highlight was Eowyn slaying the Witch King of Angmar, is not going to be a quiet, complacent child. She'll surely be an interesting one, as long as we can guide her away from the path of shadow and flame.